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Using content analysis to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY).

Klang Ibragimova N, Pless M, Adolfsson M, Granlund M, Björck-Åkesson E. (2011)

OBJECTIVE:
To explore how content analysis can be used together with linking rules to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for children and youth (ICF-CY).
METHODS:
Individual habilitation plans containing texts on assessment and intervention for children with disabilities and their families were linked to the ICF-CY using content ana-lysis. Texts were first divided into meaning units in order to extract meaningful concepts. Meaningful concepts that were difficult to link to ICF-CY codes were grouped, and coding schemes with critical attributes were developed. Meaningful concepts that could not be linked to the ICF-CY were assigned to the categories "not-definable" and "not-covered", using coding schemes with mutually exclusive categories.
RESULTS:
The size of the meaning units selected resulted in different numbers and contents of meaningful concepts. Coding schemes with critical attributes of ICF-CY codes facilitated the linking of meaningful concepts to the most appropriate ICF-CY codes. Coding schemes with mutually exclusive categories facilitated the classification of meaningful concepts that could or could not be linked to the ICF-CY.
CONCLUSION:
Content analysis techniques can be applied together with linking rules in order to link texts on assessment and intervention to the ICF-CY.

Utan assistans stannar livet - Ett stycke svensk historia

Föreningen JAG (2017)

När jag var liten fanns inte personlig assistans. Jag behövde mycket hjälp hela tiden. Mina föräldrar orkade inte med allt, trots att dom älskade mig. Därför var jag tvungen att bo på vårdhem. Det var det värsta jag varit med om. Jag ville inte äta. Jag slutade skratta och gråta. Doktorn sa till mamma och pappa att jag var så svårt skadad att jag aldrig skulle bli vuxen, och att de inte skulle orka ta hand om mig hemma. 1972, när jag var sju år, bestämde mamma sig för att ta hem mig. Året efter fick jag personlig assistans 40 timmar i veckan av kommunen. Tack vare det kunde jag få bra hjälp och vågade börja visa mina känslor igen. När jag var 26 år fick jag personlig assistans hela dygnet och flyttade till en egen lägenhet. Idag är jag 52 år, har ett bra liv och är mycket sällan sjuk, tack vare bra personlig assistans.

Den här boken kan hämtas och läsas i iBooks på din Mac eller iOS-enhet

Utbildning för anhöriga till hemmaboende personer med demenssjukdom. Kommentar och sammanfattning av utländska kunskapsöversikter

Statens beredning för medicinsk och social utvärdering (SBU). (2015)

Den systematiska översikten visar att utbildningsprogram för anhöriga till personer med demenssjukdom minskar den upplevda bördan för anhöriga (måttlig effekt) och även anhörigas depression (liten effekt). Det vetenskapliga stödet är dock otillräckligt för att man ska kunna uttala sig om effekter på anhörigas livskvalitet och de sjukas flytt till särskilt boende. Utbildningsinsatsen är jämförd med ingen utbildning eller insatser som vanligtvis erbjuds, till exempel informationsmaterial till anhöriga.

Minskningen av den upplevda bördan bedöms vara värdefull för anhöriga och därför ha en praktisk betydelse. En svensk ekonomisk analys [3] visar att kostnaderna för att genomföra en utbildnings- och stödinsats för anhöriga är tämligen låga och påverkade livskvaliteten hos de anhöriga positivt. Detta kan innebära att liknande utbildnings- och stödinsatser är ett rimligt sätt att använda kommuners resurser.

Utilization of Formal and Informal Care by Community-Living People with Dementia: A Comparative Study between Sweden and Italy.

Chiatti C., Rodríguez Gatta D., Malmgren Fänge A., Scandali VM., Masera F., Lethin C., UP-TECH and TECH@HOME research groups. (2018)

Abstract
Background: Dementia is a public health priority with a dramatic social and economic impact on people with dementia (PwD), their caregivers and societies. The aim of this study was to contribute to the knowledge on how utilization of formal and informal care varies between Sweden and Italy. Methods: Data were retrieved from two trials: TECH@HOME (Sweden) and UP-TECH (Italy). The sample consisted of 89 Swedish and 317 Italian dyads (PwD and caregivers). Using bivariate analysis, we compared demographic characteristics and informal resource utilization. Multiple linear regression was performed to analyze factors associated with time spent on care by the informal caregivers. Results: Swedish participants utilized more frequently health care and social services. Informal caregivers in Italy spent more time in caregiving than the Swedish ones (6.3 and 3.7 h per day, respectively). Factors associated with an increased time were country of origin, PwD level of dependency, living situation, use of formal care services and occupation. Conclusions: Care and service utilization significantly varies between Sweden and Italy. The level of formal care support received by the caregivers has a significant impact on time spent on informal care. Knowledge on the factors triggering formal care resources utilization by PwD and their caregivers might further support care services planning and delivery across different countries.

Utsatt barndom – olika vuxenliv. Ett longitudinellt forskningsprojekt om barn i samhällsvård

Andersson, G. (2008)

Boken handlar om de barn som placerades på barnhem i en
storstad någon gång under en tvåårsperiod på 1980-talet och var
0–4 år vid tiden för inskrivningen och stannade där mer än en
månad. De första två uppföljningsstudierna gjordes tre och nio
månader efter det att barnen lämnat barnhemmet. Därefter har
barnen följts upp ytterligare fem gånger, 5, 10, 15, 20 och 25 år
efter den tidiga barnhemsvistelsen. Det är 26 barn och det finns
knappast något bortfall från tidig barndom till vuxen ålder.
Resultatredovisningen är uppdelad i tre kapitel. Det första
ger glimtar från socialtjänstens dokumentation och mödrarnas
berättelser om tiden före placeringen och orsakerna till barnens
placering på barnhemmet. Där framgår också barnens reaktioner
på separation och deras anknytnings- och anpassningsprocess
under tiden på barnhemmet och den närmast efteråt, hemma
eller i familjehem. Det andra resultatkapitlet handlar om barnens
placeringshistoria under hela barndomen. De flesta barnen i undersökningsgruppen
kom nämligen förr eller senare till familjehem
och några har även erfarenhet av ungdomsinstitutioner. Instabilitet
till följd av sammanbrott i placeringar eller återplaceringar
ses som ett allvarligt bekymmer för barn i samhällsvård. I de nu
vuxna barnens tillbakablick varierar erfarenheterna. Det tredje
resultatkapitlet handlar om social anpassning i vuxen ålder i
termer av utbildning, arbete och laglydighet. Liksom i annan
forskning framgår det här att färre har gymnasieutbildning än
jämnåriga i befolkningen i stort. Det framgår också att skälen
varierar, men de som klarat gymnasiet utan större problem har
också i större utsträckning en stabil arbetssituation. Kapitlet
bygger i stor utsträckning på de unga männens och kvinnornas
egna berättelser och är rikt på citat. Det är inget stort kvantitativt
material, men det går att räkna procent. Andelen som i vuxen
ålder kan räknas till de laglydiga är 70 procent och 50 procent
har en stabil arbetssituation.

Utveckling av strukturerade samtal med närstående till patienter inskrivna i den avancerade hemsjukvården. Ett vårdutvecklingsprojekt hos cancerfonden 2009-2010

Carlsson, M. (2011)

För att palliativ vård i hemmet ska fungera bra är de närståendes medverkan i vården oftast en
nödvändig förutsättning. Närståendes roll i palliativ hemsjukvård är unik i och med att de inte
bara har en stödjande roll för den sjuke utan också själva är i stort behov av stöd.
Den avancerade hemsjukvården i Uppsala sköts av Sjukvårdsteamet som erbjuder en
avancerad medicinsk vård i det egna hemmet för patienter med en komplicerad sjukdomsbild.
Sjukvårdsteamet har i tidigare vårdutvecklingsprojekt utvecklat stödgrupper som erbjuds till
närstående under patientens vårdtid samt ett strukturerat efterlevandestöd. Det som fattats i
närståendestödet är ett enskilt samtal (där patienten inte är med) med närstående i samband
med patientens anslutning till vården. Utvecklingen och införande av strukturerade samtal
med närstående till patienter inskrivna i Sjukvårdsteamet genomfördes under tiden 1.1.2009–
31.1.2010 genom ett vårdutvecklingsprojekt med stöd av Cancerfonden.
Resultat
Under projekttiden hölls 61 samtal. Det var svårt att bryta ut det strukturerade samtalet från
Sjukvårdsteamets verksamhet i stort, eftersom närstående ansåg att samtalet var en del i en
pågående process. Många poängterade det värdefulla med att få ha ett eget samtal där
patienten inte var närvarande och som fokuserade på den närståendes situation. För vissa var
det viktigt att samtalet hölls i Sjukvårdsteamets lokaler. Det positiva med detta var
möjligheten till större avskildhet, att få se Sjukvårdsteamets lokaler samt möjligheten till
rundvandring på de palliativa avdelningarna. Den största svårigheten i projektet var att
genomföra samtalet snabbt efter anslutningen till Sjukvårdsteamet. Detta berodde framför allt
på tidsbrist hos personalen men även närstående kunde ha svårt att hitta luckor i sina
scheman, framför allt för närstående som arbetade.
Slutsats
Att rutinmässigt ha ett enskilt (där patienten inte är med) strukturerat samtal med närstående
för att kartlägga deras situation, deras sociala nätverk, samtala om hur de ser på att vårda i
hemmet, samt att besvara frågor är ett sätt att tidigt ge och få information. Ett enskilt
närståendesamtal innebär en möjlighet att stödja både patienten och de närstående vid vård i
hemmet och därmed förebygga att problem uppstår. Att samtalen hade en gemensam struktur
gjorde att bedömningen av den närståendes situation underlättades. Den gemensamma
strukturen hindrade dock inte individualisering av samtalen utifrån den enskildes behov.
Slutsatsen av utvärderingen är att alla närstående bör få ett erbjudande om ett samtal eftersom
det fyller en viktig funktion även om samtalet kommer betydligt senare än den stipulerade
första till andra veckan efter anslutning.

Utveckling av stödet till anhöriga i Strängnäs kommun – en samverkansstudie mellan åtta FoU-enheter, åtta kommuner och Nationellt kompetenscentrum anhöriga (Nka) under tre år. Slutrapport:

Beijer, U. (2015)

I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. Staten har bidragit med cirka en miljard kronor i stimulansmedel
och den 1 juli 2009 infördes en förändring i Socialtjänstlagen som innebär att kommunerna är
skyldiga att erbjuda anhöriga stöd.
För att dra lärdom av det utvecklingsarbete som genomförts och fortfarande pågår har
Nationellt kompetenscentrum Anhöriga (NkA) tagit initiativ till denna undersökning för att i
samverkan med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till
anhöriga under tre år i åtta kommuner. I denna delrapport presenteras resultatet av den första
kartläggningen i Strängnäs kommun.
Kommunen ligger i norra delen av Södermanlands län och 1971 bildas nuvarande Strängnäs
kommun. Kommunen består av åtta kommundelar och tätorten heter Strängnäs. Antalet
innevånare var 32 419 personer år 2010. När det gäller stöd och omsorg är det politiskt
styrande organet Socialnämnden. Den verksamhet som bedriver det faktiska stödet är
socialkontoret där socialchefen är ytterst ansvarig och socialkontoret är indelat i tre olika
områden som var och en leds av en verksamhetschef.
Strängnäs kommun har en gemensam värdegrund som allt arbete skall utgå ifrån, så också
arbetet med anhörigstöd. Värdegrunden beskriver kommunens förhållningssätt och den
yttersta målsättningen är nöjda kommuninnevånare. År 2009 när den nya lagstiftningen kom
gjordes en kommunrevision angående anhörigstödet. Svaret på revisionen fastställer att varje
anställd inom kommunens socialtjänst har ett ansvar "att informera om vilka stödformer som
finns samt förmedla kontakt mellan stödbehövande och verksamheter som kan utgöra ett stöd
för varje anhörigas unika situation".
I Strängnäs kommun anställdes en anhörigkonsulent på 75 % i projektform den 1 mars 2007
och i september samma år invigdes Anhörigcentrum. Anhörigcentrum är en mötesplats för
människor som ger omsorg och stöd till någon anhörig eller vän. Här kan anhöriga träffa
andra i samma situation och delta i olika stödgrupper eller utbildningar och det finns också
möjlighet till enskilda samtal. Den anhörig som deltar i någon av Anhörigcentrums aktiviteter
kan få avgiftsfri avlösning till den närstående som är hemma
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På Anhörigcentrum finns också en caféverksamhet och personalen på Anhörigcentrum
informerar om olika insatser som kommunen erbjuder. Därutöver finns en IT-portal på nätet
(Gapet) som är tillgängligt dygnet runt. Portalen riktar sig till alla åldrar och målgrupper och
ger den anhörige möjligheten att få kontakt med andra runt om i landet.
På anhörigcentrum finns även Resursteamet och den Uppsökande verksamheten.
Resursteamet arbetar med frågor som är kopplade till demenssjukdom eller annan kognitiv
svikt. Den uppsökande verksamhet vänder sig till personer som är 80 år och äldre och inte har
något bistånd från kommunen. På Strängnäs kommuns hemsida informerar man om det
anhörigstöd som finns i kommunen och det som lyfts fram som centralt är Anhörigcentrum.
Studien startar med en kartläggning av stödet till anhöriga i de utvalda kommunerna inom
områdena; äldreomsorg, verksamheter för personer med funktionsnedsättning samt individ
och familjeomsorg. Ytterligare en kartläggning genomförs år tre. Årligen genomförs
fokusgruppsintervjuer, en inom varje område. Första och sista året genomförs även en
enkätstudie och telefonintervjuer genomförs med ett slumpmässigt antal utvalda anhöriga i
kommunerna baserat på den enkät de fyllt i.
Inom de tre områdena i Strängnäs kommun samlades aktuell dokumentation in,
verksamhetscheferna intervjuades och en enkät skickades ut till enhetscheferna. Efter
kartläggningen utfördes fokusgruppsintervjuer där politiker, chefer, medarbetare, ideella
organisationer och anhöriga deltog. Namn på anhöriga samlades in och NkA har utifrån dessa
utfört en enkätundersökning med efterföljande telefonintervjuer.
Resultatet visar att Anhörigcentrum och dess personal gör ett gott arbete utifrån de resurser
som finns tillgängliga, men att verksamheterna måste ta ett mycket större ansvar och bidra till
att anhöriga får det stöd som de behöver och har rätt till. Den gemensamma värdegrunden i
Strängnäs kommun bör lyftas upp och diskuteras ytterligare och samverkan inom den egna
kommunen behöver utökas. Det behövs också mer information till anhöriga om vilket
anhörigstöd som finns. En strategi för hur anhörigstödet skall bedrivas, uttalade mål samt
handlingsplaner och stödplaner bör också utarbetas och anhörigstödet till de anhöriga som har
vuxna barn med funktionsnedsättning är i mycket stort behov av utveckling.

Utvecklingssamtalet och den skriftliga individuella utvecklingsplanen – för grundskolan, grundsärskolan, specialskolan och sameskolan

Skolverkets (2012)

Hösten 2013 ändrades bestämmelserna i skollagen om utvecklingssamtalet och den skriftliga individuella utvecklingsplanen. Ändringarna i skollagen innebär sammanfattningsvis att utvecklingssamtalet har fått en utvidgad roll och att kravet på skriftliga individuella utvecklingsplaner avskaffas i de årskurser betyg sätts. Skriftliga individuella utvecklingsplaner ska upprättas en gång per läsår för elever i årskurs 1-5 i grundskolan, grundsärskolan och sameskolan samt i årskurs 1-6 i specialskolan. De ska även upprättas en gång per läsår för elever i årskurs 6-9 i grundsärskolan i de fall betyg inte sätts. Motsvarande gäller för elever i årskurs 7-10 i specialskolan som läser enligt grundsärskolans kursplaner.

Utvecklingsstörning, samhälle och välfärd

Ineland, J., Molin, M., & Sauer, L. (2013)

Under de senaste trettio åren har valfrihet och självbestämmande varit ledord för den svenska välfärdspolitiken. Att individen själv ska ha rätt att bestämma över sin vardag har inneburit att man inom funktionshinderpolitiken alltmer har kommit att betona den enskildes möjlighet att påverka villkoren för stöd och hjälpinsatser.

Människor med utvecklingsstörning är i dag mer integrerade i samhället. Men vad händer när funktionshindrade inte vill se sig som klienter utan framhåller andra värden och livsprojekt?

Författarna har mångårig erfarenhet av verksamhetsnära arbete. Deras forskning är inriktad på de upplevelser och erfarenheter som personer med utvecklingsstörning har. I den här boken sätts dessa erfarenheter in i en större samhällelig och välfärdspolitisk kontext.

Denna andra upplaga har reviderats utifrån nyare lagstiftning och innehåller även två nyskrivna kapitel: "Internet och sociala medier" samt "Utvecklingsstörning och hälsa". Boken vänder sig till universitets- och högskolestudenter vid socionom- och lärarprogrammen, samhällsvetenskapliga, beteendevetenskapliga och vårdvetenskapliga utbildningar samt till yrkesverksamma inom välfärdssektorn och andra som är intresserade av frågor om funktionshinder.

Martin Molin, docent och fil. dr i handikappvetenskap, Institutionen för pedagogik och specialpedagogik, Göteborgs universitet.

Lennart Sauer, fil. dr i socialt arbete, Institutionen för socialt arbete, Umeå universitet.

Jens Ineland, fil. dr i socialt arbete, Pedagogiska institutionen, Umeå universitet.

Utvärdering av anhörigstöd i Skåne län

Andersson, H., & Holmgren, A. (2009)

Ramböll Management Consulting har på uppdrag av Länsstyrelsen i Skåne län
utvärderat anhörigstödet i Skåne utifrån ett anhörigperspektiv. Tio stycken
representativt utvalda kommuner i Skåne län har ingått i utvärderingen. Följande
frågor har analyserats;
 Hur har anhörigstödet vidareutvecklats?
 Hur har kvaliteten på anhörigstödet som erbjuds förbättrats?
 Hur har tillgängligheten till anhörigstödet förbättrats?
 Hur har stöd som efterfrågas av anhörigvårdare utvecklats?
 Hur har anhörigvårdarnas livskvalitet förbättrats?
 Hur har samverkan med andra frivilliga/ideella krafter påverkat
anhörigstödets utveckling?
Datainsamlingen har genomförts med hjälp av; intervjuer, fokusgrupper och
dokumentstudier. Flera av utvärderingens frågeställningar har kunnat belysas med
hjälp av två eller flera datainsamlingsmetoder samtidigt. Härigenom åstadkommer
vi en stabil grund för analysen och våra slutsatser.
Rambölls bedömning är att anhörigstödet har vidareutvecklats som följd av de
statliga stimulansmedlen. Fler kommuner erbjuder idag träffpunkter jämfört med
tidigare och fler må-bra-aktiviteter erbjuds. Anhörigsamordnare har inrättats i
samtliga kommuner som ingått i vårt urval och det förekommer allt fler nätverk
och erfarenhetsutbyten mellan kommunerna.
Kvaliteten i anhörigstödet har förbättrats under de åren som staten betalat ut
stimulansmedel. Fokus i flera kommuner har varit att bygga en verksamhet av god
kvalitet som är hållbar. Med anledning av detta har utvecklingen och utformandet
av verksamheten varit relativt likartad mellan kommunerna. I samtliga kommuner
som varit föremål för utvärderingen finns anhörigsamordnare samt ett brett utbud
av aktiviteter för anhörigvårdare.
Vad gäller tillgängligheten så bedömer Ramböll att den delvis har förbättrats.
Samtliga kommuner erbjuder en träffpunkt och har en anhörigsamordnare.
Information om stödet finns tillgängligt via broschyrer på exempelvis apotek och
vårdcentraler. Flera av anhörigsamordnarna, liksom biståndshandläggarna,
informerar även om stödet. Däremot upplever både kommunala tjänstemän och
anhörigvårdare att stödet inte når ut till alla som kan tänkas ha behov av det. Till
exempel är uppslutningen på träffpunkterna inte så stor som man önskat och man
vet att det finns fler i kommunen som är i behov av stödet. Vad detta beror på
finns det olika teorier om. En återkommande förklaring är att de i målgruppen inte
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själva identifierar sig som vårdare av en anhörig utan i första hand som
make/maka där det är en plikt att man tar hand om sin sjuka närstående. Flera
anhörigvårdare beskriver hur svårt det är att ta klivet till att se bortom sin
närståendes situation och även börja tänka på och ta hand om sig själv.
Anhörigvårdare får det stöd de efterfrågar, inom ramen för vad som är rimligt. Det
är vanligt att anhörigsamordnare ordnar träffar och fokusgrupper där
anhörigvårdare lämnar förslag på hur de vill att exempelvis aktiviteterna och
träffpunkterna ska utformas och vad de ska innehålla. Som exempel efterfrågar
vissa anhörigvårdare utbildningar och information om exempelvis lyftteknik eller
demenssjukdomens olika stadier som kan ske i samband med träffpunkterna. Det
är också vanligt att andra föreningar och kommunala verksamheter bjuds in för att
prata om vilket stöd de kan bidra med.
Vad gäller livskvaliteten menar anhörigvårdare som deltar i verksamheten att den
definitivt har ökat. Man upplever trygghet och gemenskap. Avlastningen gör att
man känner sig spontan och fri. Dessutom upplever man mindre stress och oro då
man vet att man har någonstans att vända sig när det känns jobbigt. De anhöriga är
överens om att kommunens åtgärder leder till ökad livskvalitet för dem.
Samverkan med andra organisationer och föreningar varierar från kommun till
kommun och har delvis ökat. Svenska kyrkan och Röda Korset är de vanligaste
samverkanspartnerna. Andra man samverkar med är exempelvis pensionärs-,
demens- och invandrarföreningar. Att samverkan inte har ökat i högre
utsträckning kan bero på att det finns en viss konkurrens mellan föreningarna då
varje förening bevakar sitt medlemsantal. Rambölls bedömning är alltså att en
bristande samverkan inte beror på att anhörigsamordnaren underlåtit att försöka
etablera en samverkan.
Avslutningsvis har det förts resonemang dels om framgångsfaktorerna sett ur ett
organisatoriskt och verksamhetsperspektiv, dels om kommunen hade genomfört
åtgärderna utan statligt stöd.
Sett ur ett organisatoriskt perspektiv har speciellt viktiga framgångsfaktorer varit
inrättandet av anhörigsamordnare vars uppdrag varit att initiera verksamheten för
de anhöriga. Rambölls bedömning är att anhörigvårdarna själva inte hade orkat
starta en liknande verksamhet. Förutom att anhörigsamordnare har bidragit till att
skapa ett socialt nätverk för anhörigvårdare har de även arbetat aktivt med att
förankra anhörigperspektivet i alla delar av organisationen för att anhörigstödet
ska vara hållbart.
Sett ur ett verksamhetsperspektiv har en viktig framgångsfaktor för anhörigstödet
varit att de anhöriga själva har kunnat påverka utformningen av stödet. Dock har
den önskade effekten av information och kartläggningar, att nå hela målgruppen,
uteblivit.
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Rambölls bedömer även att flera av aktiviteterna inte hade kunnat genomföras
utan statligt stöd. Anhörigstödet har delvis finansierats av kommunala medel men
med hjälp av statliga stimulansmedel har stödet kunnat prioriteras och fokuseras.

The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication

Nickerson, A., Aderka, I.M., Bryant, R.A., & Hinton, D.E. (2013)

There has been much controversy regarding the psychological impact of the death of a parent, partly arising from neglect of potential moderating factors. The present study uses data from the National Comorbidity Survey Replication (NCS-R) to investigate the relative impacts of age at death of parent, adverse parenting practices, and time since loss on mental health outcomes in 2,823 bereaved adults. Logistic regression analyses controlling for sex and race revealed that younger age at the time of parental death was associated with poorer mental health outcomes. Further, adverse parenting practices during childhood were related to greater psychopathology in adulthood. Results also indicated that psychological distress following the death of a parent reduces over time. Notably, each of these factors significantly predicted psychopathology when controlling for all other variables. Findings are discussed in the context of current theories of attachment and psychopathology.

The implementation of elder-care in France and Sweden: a macro and micro perspective

Jonsson I, Daune-Richard A-M, Odena S, Ring M. (2011)

This paper presents results from a comparative project on the implementation of elder-care in France and Sweden. The transition to requiring care is understood as a process, and elder-care is seen as a part of a more general organisation of social care that reflects different welfare traditions. An overview of elder-care on the institutional level in the two countries is supplemented by case studies from the perspective of older people which identify ways of co-operation between actors, such as public eldercare providers, family members and help provided by profit and non-profit organisations. The interviews include approximately 20 older persons in each country as well as a small number of administrators and adult children. The study sheds light on how policies are implemented on the local level and puts the focus on who actually does what and when for older persons with care needs. The different roles played by the state, the family, the market and civil society are examined. Family members in France take on a more active role both as co-ordinators of care and as actual caregivers. The study shows that gender and social class remain associated with caring but that such differences are much larger in France than in Sweden.

The importance of parenting in the development of disorganized attachment: evidence from a preventive intervention study in adoptive families

JUFFER, F., BAKERMANS-KRANENBURG, M. J. & VAN, I. M. H. (2005)

BACKGROUND:
As infant disorganized attachment is a serious risk factor for later child psychopathology, it is important to examine whether attachment disorganization can be prevented or reduced.
METHOD:
In a randomized intervention study involving 130 families with 6-month-old adopted infants, two attachment-based intervention programs were tested. In the first program, mothers were provided a personal book, and in the second program mothers received the same personal book and three home-based sessions of video feedback. The third group did not receive intervention (control group).
RESULTS:
The intervention with video feedback and the personal book resulted in enhanced maternal sensitive responsiveness (d=.65). Children of mothers who received this intervention were less likely to be classified as disorganized attached at the age of 12 months (d=.46), and received lower scores on the rating scale for disorganization than children in the control group (d=.62). In the book-only intervention group children showed lower disorganization ratings compared to the control group, but no effect on the number of infants with disorganized attachment classifications was found.
CONCLUSION:
Our short-term preventive intervention program with video feedback and a book lowered the rate of disorganized attachment. The effectiveness of our intervention documents the importance of parenting in the development of infant attachment disorganization.

The incidence and course of depression in bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural death

Brent, D., Melhem, N., Donohoe, M.B., & Walker, M. (2009)

Abstract
OBJECTIVE:
This study examined effects of bereavement 21 months after a parent's death, particularly death by suicide.
METHOD:
The participants were 176 offspring, ages 7-25, of parents who died by suicide, accident, or sudden natural death. They were assessed 9 and 21 months after the death, along with 168 nonbereaved subjects.
RESULTS:
Major depression and alcohol or substance abuse 21 months after the parent's death were more common among bereaved youth than among comparison subjects. Offspring with parental suicide or accidental death had higher rates of depression than comparison subjects; those with parental suicide had higher rates of alcohol or substance abuse. Youth with parental suicide had a higher incidence of depression than those bereaved by sudden natural death. Bereavement and a past history of depression increased depression risk in the 9 months following the death, which increased depression risk between 9 and 21 months. Losing a mother, blaming others, low self-esteem, negative coping, and complicated grief were associated with depression in the second year.
CONCLUSIONS:
Youth who lose a parent, especially through suicide, are vulnerable to depression and alcohol or substance abuse during the second year after the loss. Depression risk in the second year is mediated by the increased incidence of depression within the first 9 months. The most propitious time to prevent or attenuate depressive episodes in bereaved youth may be shortly after the parent's death. Interventions that target complicated grief and blaming of others may also improve outcomes in symptomatic youth with parental bereavement.

The last 3 months of life: care, transitions and the place of death of older people

Klinkenberg, M. (2005)

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.

The lifeworld of the cronic mental ill: analysis of 40 written personal accounts

Hayne Y, Yonge O. (1997)

In this study, chronicity in mental illness has been investigated as it is lived rather than how it might be conceptualized. Published first-hand accounts have provided the mechanism for direct access in coming to know the life of persons, their circumstances, and the meanings they associate with a life of persistent and enduring mental illness. These are unique and particular human experiences, and there are no empirical generalizations or law-like statements that can give such an understanding. Therefore the disclosure of meaning was sought through a hermeneutic-phenomenologic process. Four lifeworld existentials provide the framework for a combined description and interpretation of what it means to "live" chronic mental illness. The article concludes with a brief discussion of some implications for nursing practice, and commentary is made on the relevance of such insights to health care providers in both acute and community care settings.

The Living with Dysarthria group: Implementation and feasibility of a group intervention for people with dysarthria following stroke and family members

Mackenzie C, Paton G, Kelly S, Brady M, Muir M. (2012)

BACKGROUND:
The broad life implications of acquired dysarthria are recognized, but they have received little attention in stroke management. Reports of group therapy, which may be a suitable approach to intervention, are not available for stroke-related dysarthria.
AIMS:
To examine the operational feasibility of and response to a new eight-session weekly group intervention programme, Living with Dysarthria, designed for people with chronic dysarthria following stroke and their main communication partners.
METHODS & PROCEDURES:
The target participation was for programme completion by two groups of eight people with dysarthria (PWD) and available family members (FMs) or carers. An active recruitment strategy was undertaken from the speech and language therapy case records for the previous 6 years in two hospitals with combined annual stroke admissions of over 500 people. Twelve PWD and seven FMs were recruited (group 1: seven PWD and four FMs; group 2: five PWD and three FMs). Speech intelligibility, communication effectiveness, general well-being, quality of communication life, and knowledge of stroke and dysarthria were assessed pre- and post-programme. Each PWD and FM also set an individual goal and rated their achievement of this on a 0-10 scale.
OUTCOMES & RESULTS:
Recruitment to the programme was lower than anticipated and below target. The 12 PWD were recruited from 62 initial contacts, which was the total number who according to available information met the criteria. The programme was viable: it ran to plan, with only minor content alterations, in community accommodation, and with good participant engagement. Group median score changes were in a positive direction for all measures and effect sizes ranged from 0.17 (quality of communication life) to 0.46 (intelligibility). Significant post-programme changes were present for intelligibility and knowledge of stroke and dysarthria (p= 0.05). Participants' ratings of goal achievements ranged from 6 (some change) to 10 (a lot of change).
CONCLUSIONS & IMPLICATIONS:
The recruitment experience revealed a take-up rate of around 20% from PWD following stroke, informing future planning. The participant engagement and performance results from the piloting of the programme indicate that the Living with Dysarthria programme is viable and has potential for effecting positive change. Further testing is justified.

The Maudsley Addiction Profile (MAP): a brief instrument for assessing treatment outcome

Marsden J, Gossop M, Stewart D, Best D, Farrell M, Lehmann P, et al. (1998)

Aim. To develop a brief, multi-dimensional instrument for assessing treatment outcome for people with drug and/or alcohol problems. The Maudsley Addiction Profile (MAP) is the first instrument to be developed in the United Kingdom for this purpose. Design. Field testing with quota-recruitment of problem drug users and problem alcohol users in treatment with researcher and clinician-administered test-retest interviews. Setting. Two community and two inpatient services at the Bethlem Royal and Maudsley Hospital, London. Participants. Subjects (160 drug users and 80 alcohol users) interviewed by eight interviewers (four researchers and four clinicians), each of whom interviewed 30 subjects on two occasions. Measures. Sixty items across substance use, health risk, physical/psychological health and personal/social functioning domains. Findings. Average completion time of the MAP was 12 minutes. The questionnaire was acceptable to a majority of subjects and performed well with both researcher and clinician interviewers. Internal reliability and feasible concurrent validity assessments of the scales and items were highly satisfactory. Test-retest reliability was good, average intraclass correlation coefficients across eight substances were 0.94 and 0.81 across health risk, health problems, relationship conflict, employment and crime measures. Conclusions. The MAP can serve as a core research instrument with additional outcome measures added as required. The collection of a set of reliable quantitative measures of problems among drug and alcohol users by research or treatment personnel for outcome evaluation purposes need not be time-consuming.

The meaning of outdoor physical activity for parentally bereaved young people in the United Kingdom: insights from an etnographic study

Brewer, J. & Sparkes, A. (2011)

The purpose of this paper is to explore the meanings of outdoor physical activity in the natural environment for parentally-bereaved young people. It draws on data generated from a two-year ethnographic study that focused on the experiences of those involved with the Rocky Centre, a childhood bereavement service in the UK. Data was collected via extended periods of participant observation and semi-structured interviews with both staff and service users. One of the key themes to emerge from the analysis was that of physical activity in different environments. The meanings that the parentally-bereaved young people attributed to outdoor physical activity clustered around four sub-themes. These were: sense of freedom; distraction/escapism; retaining memories; and family cohesion. Each of these are considered in detail and their implications for future practice and research are discussed.

Äldres psykiska ohälsa -en fördjupad lägesrapport om förekomst, verksamheter och insatser. Artikelnr 2008-131-20

Socialstyrelsen (2008)

I dag lider cirka 20 procent av alla äldre personer av psykisk ohälsa. Inom en snar framtid är 25 procent av alla svenskar 65 år och äldre, vilket gör psykisk ohälsa till en av våra största folksjukdomar.

Rapporten Ökat stöd till äldres med psykisk ohälsa redovisar Socialstyrelsens aktiviteter för att stödja arbetet med att uppmärksamma och arbeta med äldres psykiska ohälsa. Rapporten ger också förslag på fortsatta åtgärder för att stödja arbetet. Som bilagor finns tre vägledningdokument för olika professioner:

Vägledning för verksamhetsansvariga inom socialtjänst, kommunal hälso- och sjukvård samt primärvård'
Vägledning till att uppmärksamma äldre med psykisk ohälsa inom primärvården
Vägledning för att uppmärksamma äldre med psykisk ohälsa inom socialtjänst och kommunal hälso- och sjukvård
Grundläggande kunskaper hos personal

Socialstyrelsen har även tagit fram allmänna råd som ska visa vilka kunskaper personal som arbetar med äldre bör ha.

Nationell satsning på baskompetens

Under 2011 – 2014 pågick en satsning, det så kallade Omvårdnadslyftet, för att stärka personalens baskunskaper om bland annat äldres psykiska ohälsa.

Socialstyrelsen publicerade även en vägledning om kunskapsområden för specialiserade arbetsuppgifter inom äldreomsorgen som bland annat behandlar kunskaper som kan krävas för att arbeta med äldre med psykisk sjukdom.

Ändlös omsorg och utmätt hälsa – föräldraskapets paradoxer när ett vuxet barn har långvarig psykisk sjukdom. Akad. avh.

Johansson, Anita (2014)

Avhandlingens övergripande syfte är att fördjupa kunskapen om att vara förälder till vuxet barn med långvarig psykisk sjukdom. Delstudiernas speciella syften är:

Att beskriva hur mammor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag.
Att beskriva hur pappor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag
Att beskriva hur förälder till vuxet barn med psykisk sjukdom uppfattar den psykiatriska vården.
Att undersöka en grupp mammor och pappor till vuxet barn med långvarig psykisk sjukdom i Sverige och deras hälsorelaterade lisvkvalitet i förhållande till en normalpopulation, deras självskattade symptom på ångest, depression och belastning samt erfarenheter av möten med den psykiatriska vården.

Är du full? Nej jag har haft stroke. Om vikten av fullgod rehabilitering.

Edner, Magnus (2012)

Bokens författare och huvudperson, Dr Magnus Edner, berättar här utifrån patientens egenupplevda perspektiv om sin komplicerade rehabilitering och långa väg tillbaka efter en stroke med komplicerad symtombild. Läsningen är både nedslående och upplyftande på samma gång.

Nedslående på grund av att vårdens brister och tillkorta-kommanden så tydligt blottläggs, särskilt i relation till oförmågan (oviljan?) att ta ett helhetsansvar kring en rehabiliteringsprocess av ett svårbehandlat tillstånd.

Upplyftande genom att huvudpersonen genom envishet, kunskap och stort stöd från sin familj visar att det går att gradvis förbättras om rätt förutsättningar ges, även lång tid efter en hjärnskadas uppkomst.

Ätstörningar och ADHD kan ha samband : Hetsätning kan lindra ADHD-symtom, centralstimulantia ger god hjälp

Ersson, G., A. R. Klanger, et al. (2007)

[Possible connection between eating disorders and ADHD. Bulimia can relieve ADHD symptoms, central nervous stimulants are of good help]In Sweden the risk for female Anorexia Nervosa and Bulimia Nervosa is estimated to 1%. Females have ten times higher prevalence than males. Attention Deficit Hyperactivity disorder (ADHD) on the contrary has a male 2-3 times dominante. Among adults aprox. 3% has ADHD. ADHD is complex with at least one major associated psychiatric diagnosis. The aim of the present study was to investigate whether clinical findings, not just related to Eating Disorder (ED), could match ADHD as a co-existing diagnosis, as well as to follow the patients the first months after treatment with Methylfenidate had been induced. Five patients, one male and four females, age 18-43, with a history of Eating Disorder (ED) of 5-35 years, were clinically described with DSM-IV diagnoses, treatment regimen and therapeutic outcome. They suffered from disability in normal social functioning, i.e. education, professional career and family life. All of them had symptoms matching ADHD. In this case report the assumtion is made that treatment with Methylfenidate lead to an decrease of ADHD-symptoms as well as typical ED-symptoms, better social functioning and increased quality of life.

Tidigare forskning har visat på en koppling mellan bulimia nervosa och uppmärksamhets- och hyperaktivitetsstörningar (ADHD). Det har föreslagits att ätstörningspatienter med långvarig psykosocial ohälsa och flera samtidigt förekommande psykiatriska tillstånd bör utredas för att utesluta/bekräfta samexisterande, tidigare odiagnostiserad ADHD.Under de senaste åren har studier redovisats där sambandet mellan bulimia nervosa och ADHD diskuteras. Positiv effekt på såväl ätstörningsrelaterade som ADHD-relaterade symtom vid behandling med centralstimulantia har kunnat konstateras.De fall som beskrivs här ger ytterligare stöd för betydelsen av att låta patienter med bulimia nervosa och andra svåra psykiatriska problem genomgå neuropsykiatrisk utredning och i förekommande fall av ADHD få behandling med centralstimulantia.

Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen

Åman, K. (2006)

Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.

Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.

Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.

Nyckelord: Specialpedagogik, pedagogisk kompetens, barn- och ungdomshabilitering, kunskapsområden, verksamhetsfält, yrkesspråk, talgenrer, fokusgrupper, metaforer, tidig intervention, anpassat vardagligt språk, fronesis.

Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen

Åman, K. (2006)

Doktorsavhandling i pedagogik

Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.

Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.

Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.

- See more at: http://www.skolporten.se/forskning/avhandling/ogonblickets-pedagogik-yrkesgrupper-i-samtal-om-specialpedagogisk-kompetens-vid-barn-och-ungdomshabiliteringen/#sthash.JQdaHFR7.dpuf

Resilience in parentally bereaved children and adolescents seeking preventive services

Lin, K., Kirk, K., Sandler, I.N., Ayers, T.S., Wolchik, S.A., & Luecken, L.J. (2004)

Abstract
This study examined environmental stress, family, and child variables that differentiate resilient children and adolescents from those with mental health problems following the death of a primary caregiver. The community-based sample included 179 bereaved children ages 8 to 16 years and their surviving caregivers who completed a test battery of measures before participating in a prevention program. Forty-four percent of bereaved children were classified as resilient and 56% as affected based on the absence of clinically significant mental health problems on at least 1 measure as reported by either the child, surviving caregiver, or teacher on standardized measures of mental health problems. Results of multivariate analyses indicated that bereaved resilient versus affected status was a function of both family and child variables. Higher levels of caregiver warmth and discipline and lower levels of caregiver mental health problems were family-level variables that significantly differentiated resilient children from affected children. Bereaved children's perceptions of less threat in response to negative events and greater personal efficacy in coping with stress were child-level variables that differentiated resilient from affected status. Family and child variables were entered into a discriminant function analysis that correctly classified 72% of the sample. The findings are consistent with a model of resilience in which multilevel variables account for children's positive adaptation following exposure to adversity.

Resiliency factors predicting psychological adjustment after political violence among Palestinian children

Punamäki, R.-L., Qouta, S., & El Sarraj, E. (2001)

The effects of cognitive capacity, perceived parenting, traumatic events, and activity, which were " rst measured in the midst of the political violence of the Intifada in 1993, were examined on post-traumatic stress disorder (PTSD), emotional disorders, school performance, and neuroticism three years later in more peaceful conditions among 86 Palestinian children of 14.04 ± 0.79 years of age. The results showed, " rst, that PTSD was high among the children who had been exposed to a high level of traumatic events and had responded passively (not actively) to Intifada violence. Discrepant perceived parenting was also decisive for adjustment: Children who perceived their mothers as highly loving and caring but their fathers as not so showed a high level of PTSD. High intellectual but low creative performance was also characteristic of the children suffering from emotional disorders. Second, the hypothesis that cognitive capacity and activity serve a resiliency function if children feel loved and nonrejected at home was confirmed. Third, neuroticism decreased significantly over the three years, especially among the children who had been exposed to a high number of traumatic events.

Resiliency reconsidered: Conceptual consideration, empirical findings and policy implications

Rutter, M. (2000)

Reviews the literature on the concept of resilience in children. The topic of individual resilience is one of considerable importance with respect to public policies focused on the prevention of either mental disorders or developmental impairment in young people. In planning preventive policies, it is important ot ask whether it is more useful to focus on the risks that render children vulnerable to psychopathology or on the protective factors that provide for resilience in the face of adversity. Topics covered include methodological considerations in the study of resilience, studies directly focusing on resilience, processes associated with resilience, and associated policy implications. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Resiliens: risk och sund utveckling

Borge, H., & Inger. A. (2011)

Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö?

Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning - som utvecklar resiliens.

Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv.

Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.

Resources and Strategies: How Parents Cope with the Care of a Disabled Child

Beresford, Bryony A (1994)

This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.

Respite Utilization and Responses to Loss Among Family Caregivers: Relationship Matters

DeCaporale L, Mensie L, Steffen A. (2013)

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses' grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory.

Ressiliens

Helmen Borge, A I. (2011)

Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö? Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning – som utvecklar resiliens. Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv. Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.

Review and selection of online resources for carers of frail adults or older people in five European countries: a mixed-methods study

Papa, R, Efthymious, A, Lamura, G, Piccinini, F, Onorati, G, Papastavrou, E, Tsitsi, T, Casu, G, Boccaletti, L, Manattini, A, Seneca, R, Vaz de Carvalho, C, Durão, R, Barbabella, F, Andréasson, F, Magnusson, L, Hanson, E (2020)

ABSTRACT
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.

Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).

Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.

Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.

Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Review of the satisfaction with life scale

Pavot, W. and E. Diener (1993)

The Satisfaction With Life Scale (SWLS) was developed to assess satisfaction with the respondent's life as a whole. The scale does not assess satisfaction with life domains such as health or finances but allows Ss to integrate and weight these domains in whatever way they choose. Normative data are presented for the scale, which shows good convergent validity with other scales and with other types of assessments of subjective well-being. Life satisfaction as assessed by the SWLS shows a degree of temporal stability (e.g., .54 for 4 yrs), yet the SWLS has shown sufficient sensitivity to be potentially valuable to detect change in life satisfaction during the course of clinical intervention. Further, the scale shows discriminant validity from emotional well-being measures. The SWLS is recommended as a complement to scales that focus on psychopathology or emotional well-being because it assesses an individual's conscious evaluative judgment of his or her life by using the person's own criteria.

Riks-Stroke Årsrapport För Helåret 2014

Riks-Stroke (2015)

Antal registreringar och täckningsgrad
• Under 2014 rapporterades 7 981 vårdtillfällen för TIA, något fler än 2013. Under 2014
registrerades TIA i Riksstroke vid 62 av landets 72 akutsjukhus, tre sjukhus fler än 2013.
• Utifrån antalet registrerade TIA i Riksstroke kan totala antalet TIA i Sverige under 2014
uppskattas till cirka 10 000.
Demografi, riskfaktorer, vårdform och vårdtider
• Något fler män än kvinnor insjuknade i TIA. Medelåldern är 73 år, cirka tre år lägre än för stroke.
• TIA-patienterna var ofta tungt belastade av riskfaktorer och hade relativt hög beräknad risk att
insjukna i stroke (medelvärdet i ABCD2-score var 4,2 på en sjugradig skala). Noterbart är också
att 20 % av patienterna hade förmaksflimmer och att 11 % var rökare.
• Av alla patienter som registrerades utreddes och vårdades 96 % inneliggande.
Medianvårdtiden var tre dagar.
• Av TIA-patienterna kom 48 % till sjukhus inom tre timmar och 57 % kom in med ambulans.
Diagnostik
• Så gott som alla patienter undersöktes med datortomografi, medan 10 % undersöktes med en
magnetresonanstomografi (MR) av hjärnan.
• Kärlundersökning med ultraljud, DT-angiografi eller MR-angiografi genomfördes hos 70 % av
patienterna. Ultraljud var den vanligaste metoden, även om det varierade mellan sjukhusen.
Långtidsregistrering av EKG för att upptäcka hjärtrytmstörningar genomfördes hos 59 % av
patienterna under det akuta vårdtillfället, och för ytterligare 9 % planerades undersökningen
efter vårdtillfället. Variationerna avseende i praxis mellan sjukhusen var stora.
Sekundärprevention
• Av de TIA-patienter som hade förmaksflimmer behandlades 77 % med perorala antikoagulantia,
en påtaglig ökning jämfört med tidigare år. Andelarna som fick sådan behandling varierade
geografiskt. Andelen som behandlades med någon av de nya orala antikoagulantia var 38 %,
en tydlig ökning.
• Blodtryckssänkande läkemedel gavs till 69 % av patienterna och statiner till 74 %, men med
påtagliga variationer i praxis utefter geografi.
• Den absoluta merparten av rökarna (81 %) rapporterades ha fått råd om rökstopp och 79 %
av de med körkort rapporterades ha fått råd om sin bilkörning. Uppgifter om rökstopp eller
bilkörning saknades i vart fjärde till vart femte fall.
• Bland TIA-patienterna var ett återbesök vid en sjukhusmottagning eller i primärvården
planerat för 91 %.
PRELIMINÄR
12
1.2 BAKGRUND
Transitoriska ischemiska attacker (TIA) beror på övergående proppbil

Riktade psykosociala insater till gravida och småbarnsföräldrar med problematiskt bruk av alkohol och narkotika: en litteraturstudie. Barn som anhöriga 2013:5.

Heimdal K, Karlsson P. (2013)

I rapporten beskrivs resultaten från en litteraturstudie om riktade psykosociala
insatser till gravida och småbarnsföräldrar (med barn upp till 3 år) som har ett
så kallat problematiskt bruk av alkohol och/eller narkotika. Ovanstående grupper
är viktiga att uppmärksamma, dels för den inverkan det problematiska bruket
kan ha på föräldrarana själva, men framförallt på grund av de negativa effekter
detta kan få för föräldra-barnrelationen samt barnets psykiska hälsa och utveckling.
Syftet med litteraturstiden har varit att identifiera, sammanfatta och värdera
den internationella interventionsforskningen på området. Via sökningar i databaser
återfanns 53 relevanta primärstudier. Av dessa undersökte 27 studier interventioner
riktade till gravida, 14 studier fokuserade på insatser till småbarnsföräldrar,
medan 12 studier beskrev effekter av interventioner som påbörjats
under graviditet och avslutats en tid efter barnets födelse.
Sammantaget undersökte dessa studier ett flertal olika typer av interventioner.
Till de interventioner som studerades mest frekvent hörde bland annat hembesök,
behandlingsinsatser samordnade med mödravård samt insatser fokuserade
på föräldraträning/föräldraförmågor.
De aktuella studiernas sammanvägda resultat pekar dock mot att det råder
stor osäkerhet kring de olika insatstypernas effekter. Avsaknaden av enhetligt
vetenskapligt stöd innebär dock inte att stöd saknas helt; snarare drar de olika
studierna skilda slutsatser kring respektive insats. Därtill är många av studierna
alltför metodologiskt svaga för att det ska vara möjligt att uttala sig om effekter,
samt i vilken utsträckning dessa eventuellt kan vara bestående. En slutsats som
kan dras är därmed att det behövs fler experimentella studier med längre uppföljningstider
på området.
Ur ett svenskt perspektiv är det även angeläget med studier genomförda i en
svensk/nordisk kontext, då skillnaderna mellan länderna avseende tillgång till
mödra- och barnhälsovård begränsar möjligheterna att överföra resultat från
exempelvis amerikanska studier till svenska förhållanden.

Risk and resilience. Adaptation in changing times

Schoon, I. (2006)

What factors enable individuals to overcome adverse childhoods and move on to rewarding lives in adulthood? Drawing on data collected from two of Britain's richest research resources for the study of human development, the 1958 National Child Development Study and the 1970 British Cohort Study, this 2006 book investigates the phenomenon of 'resilience' - the ability to adjust positively to adverse conditions. Comparing the experiences of over 30,000 individuals born twelve years apart, Schoon examines the transition from childhood into adulthood and the assumption of work and family related roles among individuals born in 1958 and 1970 respectively. The study focuses on academic attainment among high and low risk individuals, but also considers behavioural adjustment, health and psychological well-being, as well as the stability of adjustment patterns in times of social change. This is a major work of reference and synthesis, that makes an important contribution to the study of lifelong development.

Risk and resilience: Adults who were the children of problem drinkers

Velleman R, Orford J. (1999)

This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.

The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.

More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'

The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.

Risk and resilience: Adults who were the children of problem drinkers

Velleman R, Orford J. (1999)

This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.

The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.

More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'

The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.

Risk factors for preschool depression: the mediating role of early stressful life events.

Luby J, Belden A, Spitznagel E. (2006)

Background:  Family history of mood disorders and stressful life events are both established risk factors for childhood depression. However, the role of mediators in risk trajectories, which are potential targets for intervention, remains understudied. To date, there have been no investigations of mediating relationships between risk factors and very early onset depression, a developmental period during which intervention may be more effective. The current study used regression analyses to examine the relationships between family history of mood disorders and stressful life events as risk factors for depression in a preschool sample.

Method:  Preschoolers 3.0 to 5.6 years of age participated in a comprehensive mental health assessment. Caregivers were interviewed about their children using a structured diagnostic measure to derive DSM-IV major depressive disorder (MDD) diagnoses and dimensional depression severity scores. Family history of psychiatric disorders and preschoolers' stressful life events was obtained.

Results:  Both family history and stressful life events predicted depression severity scores 6 months later. Analyses examining the influence of family history of mood disorders and stressful life events on preschoolers' depression severity demonstrated that stressful life events mediated the relationship between family history and preschoolers' depression.

Conclusions:  Findings outline the key role of exposure to early stressful life events as a mediator of familial mood disorder risk in preschool onset depression. This finding in a preschool sample provides support for the hypothesis that psychosocial factors may have increased importance as mediators of risk in younger age groups. Findings suggest that psychosocial factors should be considered key targets for early intervention in depression.

Resilience and vulnerability among refugee children of traumatized and non-traumatized parents

Daud, A., af Klinteberg, B., & Rydelius, P. A. (2008)

Background
The aim of the study was to explore resilience among refugee children whose parents had been traumatized and were suffering from Post-Traumatic Stress Disorder (PTSD).

Methods
The study comprised 80 refugee children (40 boys and 40 girls, age range 6–17 yrs), divided into two groups. The test group consisted of 40 refugee children whose parents had been tortured in Iraq before coming to Sweden. In accordance with DSM-IV criteria, these children were further divided in two sub-groups, those who were assessed as having PTSD-related symptoms (n = 31) and those who did not have PTSD-related symptoms (n = 9). The comparison group consisted of 40 children from Egypt, Syria and Morocco whose parents had not been tortured. Wechsler Intelligence Scale for Children, 3rd edn. (WISC-III), Diagnostic Interview for Children and Adolescents- Revised (DICA-R), Post-Traumatic Stress Symptoms checklist (PTSS), "I Think I am" (ITIA) and Strengths and Difficulties Questionnaire (SDQ) were used to assess IQ; PTSD-related symptoms; self-esteem; possible resilience and vulnerability.

Results
Children without PTSD/PTSS in the traumatized parents group had more favorable values (ITIA and SDQ) with respect to total scores, emotionality, relation to family, peer relations and prosocial behavior than the children in the same group with PTSD/PTSS and these values were similar to those the children in the comparison group (the non-traumatized parents group). The children in the non-traumatized parents group scored significantly higher on the IQ test than the children with traumatized parents, both the children with PTSD-related symptoms and those without PTSD-related symptoms.

Conclusion
Adequate emotional expression, supportive family relations, good peer relations, and prosociality constituted the main indicators of resilience. Further investigation is needed to explore the possible effects of these factors and the effects of IQ. The findings of this study are useful for treatment design in a holistic perspective, especially in planning the treatment for refugee children, adolescents and their families.

Residents' experiences of encounters with relatives and significant persons: A hermeneutic study

Westin L, Öhrn I, Danielson E. (2012)

The aim of this study was to explore and interpret the meaning of residents' experiences of encounters with their relatives and other significant persons in nursing homes. Twelve residents in three different nursing homes in a western Sweden municipality were interviewed. The method used was hermeneutical text analysis. Three themes emerged in the interpretation of the text: being pleased, being someone, and being inconvenient. These themes were also described through seven subthemes: to be happy to have someone, to make someone else happy, going back in life, to be together in a community, not being alone, to be disconnected, and to be a burden. The study concludes that it is important for nurses in nursing homes to develop a deeper insight into what various social contacts can mean for residents. To develop this knowledge, it is important that nurses in nursing homes can be educated, and supported by clinical supervision, in relation to residents' experiences of encounters with relatives and other significant persons.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The Significance of Insecure Attachment and Disorganization in the Development of Children's Externalizing Behavior: A Meta-Analytic Study

FEARON, R. P., BAKERMANS-KRANENBURG, M. J., VAN IJZENDOORN, M. H., LAPSLEY, A. M. & ROISMAN, G. I. (2010)

This study addresses the extent to which insecure and disorganized attachments increase risk for externalizing problems using meta-analysis. From 69 samples (N = 5,947), the association between insecurity and externalizing problems was significant, d = 0.31 (95% CI: 0.23, 0.40). Larger effects were found for boys (d = 0.35), clinical samples (d = 0.49), and from observation-based outcome assessments (d = 0.58). Larger effects were found for attachment assessments other than the Strange Situation. Overall, disorganized children appeared at elevated risk (d = 0.34, 95% CI: 0.18, 0.50), with weaker effects for avoidance (d = 0.12, 95% CI: 0.03, 0.21) and resistance (d = 0.11, 95% CI: -0.04, 0.26). The results are discussed in terms of the potential significance of attachment for mental health.

Themes in the bereavement experience of inner city adolescents

Van Epps, J., Opie, N.D. & Goodwin, T. (1997)

Abstract
PROBLEM:
There is a lack of information about the bereavement experiences of adolescents living in poverty in the inner city.
SUBJECTS:
Eight bereaved adolescents (mean age = 13.5 girls, 3 boys), from poverty-level families, attending an inner city junior high school.
METHODS:
A descriptive design, using participant-observation in a semi-structured group setting, data were gathered using audiotape recordings of the eight group discussions.
FINDINGS:
Chaos and stress were major themes pervading each discussion session. Lack of family and social support, fear for their future, and avoidance as the major coping strategy were also themes of the study.
CONCLUSIONS:
Inner city adolescents need to be assessed for loss of significant others. Provision of mental health services in schools could provide intervention services to current and future problems.

Theorizing childhood

James, A., Jenks, C., & Prout, A. (1998)

In recent years there has been a rapid growth of interest in the sociological study of childhood. This new book draws together the major developments in the field. In particular, the book discusses contemporary sociological and anthropological research in order to develop key links between the study of childhood and social theory, exposing its historical, political and cultural dimensions.

They are still the same: family members’ stories about their relatives with dementia disorders as residents in a nursing home

Seiger-Cronfalk Berit, Norberg Astrid, Ternestedt Britt-Marie (2018)

Abstract [en]

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person′s identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents′ impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

They Won't Come": Increasing Parent Involvement in Parent Management Training Programs for At-Risk Youths in Schools

Ouellette, P. M. and D. Wilkerson (2008)

The absence of parents from schools is seen as an important factor related to the significant number of adolescents at risk of school failure. Effective parenting is known to be a key protective factor for adolescents at risk for school failure and other maladaptive developmental outcomes. While evidence-based parent management training models exist, their use has been limited by problems regarding recruitment and retention when services are offered through traditional means. We review the literature on parent involvement in schools, the effectiveness of parent education programs, and mutual aid activities. Logistical barriers to parent participation in parent management training programs and other school-related activities are examined, and a strategy using twenty-first-century technology will be described as a means to increase parent involvement in schools. (Contains 1 table.)

Three persons with multiple disabilities accessing environmental stimuli and asking for social contact through microswitch and VOCA technology

Lancioni, G. E., O'Reilly, M. F., Singh, N. N., Sigafoos, J., Oliva, D., & Severini, L. (2008)

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

Three persons with multiple disabilities accessing environmental stimuli and asking for social contact through microswitch and VOCA technology

Lancioni, G. E., O'Reilly, M. F., Singh, N. N., Sigafoos, J., Oliva, D., & Severini, L. (2008)

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study

Ali, L., Ahlström, B. H., Krevers, B., Sjöström, N., & Skärsäter, I. (2013)

The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.

Support Interventions for Family Members of Adults with Mental Illness: A Narrative Literature Review.

Ewertzon Mats, Hanson Elizabeth (2019)

Abstract 
The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Support/services among family caregivers of persons with dementia – perceived importance and services received

Alwin, J., Öberg, B., & Krevers, B. (2010)

Objective

The aim of this study was to examine what family caregivers of persons with dementia perceive as important types of support/services in relation to experienced negative impact (NI) due to the caregiver situation, and to investigate if caregivers receive the support/services perceived as important.
Method

The study was based on the Swedish part of the EUROFAMCARE project and included 110 caregivers of persons with dementia. Data were collected primarily through structured telephone interviews. The caregivers were divided into two groups, a higher NI group and a lower NI group, based on the NI scale from the COPE index.
Results

Getting information and having someone to talk to were perceived as very important types of support/services by the highest proportion of caregivers in both groups. Data indicated only one significant difference; a higher proportion of caregivers in the higher NI group reported being able to participate in activities outside of caring as very important. There was also an indication that a higher proportion of caregivers in the lower NI group perceived information about the disease as very important. Support/services perceived as important by the caregivers were received both to a high and a low degree.
Conclusion

The results from this study suggest that there is almost no difference between groups of caregivers experiencing higher and lower NI regarding their perception of what are important types of support/services. The caregivers rated different types of support/services within the areas of information, relief and counselling as very important. Copyright © 2009 John Wiley & Sons, Ltd.

Support/services and family carers of persons with stroke impairment: Perceived importance and services received

Krevers, B. and B. Öberg (2011)

Objective: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. Design: Data from a cross-sectional study. Subjects: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. Methods: Carers were interviewed using a structured questionnaire. Results: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. Conclusion: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers' perceptions in order to individualize support/service, and thus make it more available and efficient.

Support/services and family carers of persons with stroke impairment: Perceived importance and services received

Krevers, B., & Öberg, B. (2011)

OBJECTIVE:
To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important.
DESIGN:
Data from a cross-sectional study.
SUBJECTS:
A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project.
METHODS:
Carers were interviewed using a structured questionnaire.
RESULTS:
There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers.
CONCLUSION:
The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers' perceptions in order to individualize support/service, and thus make it more available and efficient.

Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

Gall, Sheena Helen, Atkinson, Jacqueline, Elliott, Lawrence, Johansen,Ron (2003)

BACKGROUND:
United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM:
To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS:
The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS:
Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS:
Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.

Supporting families living with parental substance misuse: the M-PACT (Moving Parents and Children Together) programme

Templeton L. (2014)

The Moving Parents and Children Together (M-PACT) programme is one of the growing number of interventions tailored to meet the multiple and complex needs of children and families affected by parental substance misuse. This paper pulls together the qualitative findings from 13 evaluated M-PACT programmes in England. Sixty-four families attended an M-PACT programme, including 82 children and 75 adults. Qualitative data were collected from 37 children, 36 adults and over 30 group facilitators. Six themes are discussed: engaging with M-PACT, shared experiences, understanding addiction, changes in communication, healthier and united families, and ending M-PACT. The majority of families benefitted in a range of ways from the programme: meeting others who were experiencing similar problems, greater understanding about addiction and its impact on children and families improving communication within the family. In many families there was more openness and honesty, stronger relationships and more time as families, and a reduction in arguments and conflict. The key findings are discussed in terms of the potential for interventions of this kind to reduce family-related harm from parental substance misuse.

Supporting hospice volunteers and caregivers through community-based participatory research

MacLeod A, Skinner MW, Low E. (2012)

Drawing on the results of community-based research with a local hospice organisation, this article addresses the need to enhance social support for caregivers of people with life-threatening illnesses. The goal of the research was to involve palliative care stakeholders in the identification, prioritisation and implementation of social support interventions for caregivers who provide palliative care support as hospice volunteers and as family members of those at end-of-life. Guided by a community-based participatory research approach, primary data were collected from 39 volunteer and family member caregivers through four focus groups and nine personal diaries in July 2008. Content analysis and modified constant comparison techniques resulted in emergent themes and priorities relating to challenges, existing coping strategies and resources, and potential support interventions. The findings revealed communication, emotional support, education, advocacy and personal fatigue as the most important challenges to be addressed through support interventions at the organisational (professional support, volunteer mentoring and continuing education) and household levels (caregiver assessments, telephone support and follow-up). There was convergence in how caregivers perceived and access existing social supports, yet a crucial divergence in the availability of resources among volunteers and family members. The findings are discussed in the light of the capacity for hospices to implement social supports and the potential efficacy of the community-based participatory research approach for enhancing social support for caregivers in other parts of health-care and social care.

Supporting persons with dementia and their spouses' everyday occupations in the home environment.

Vikström, S. (2008)

The overall aim of this thesis was to investigate how persons with dementia and their informal caregivers do every day activities together and to evaluate the result from an intervention designed to encourage mutual engagement. The sample in all four studies consisted of 30 cohabiting couples, where one part was a healthy spouse caring for a partner diagnosed with mild to moderate stage dementia. Study I had a twofold focus: to identify the supportive acts that caregivers spontaneously use in everyday occupations, as well as to describe the consequences of those acts on the person with dementia. Study II describing the individual participants perception of their own, their spouses and their mutual engagements in everyday occupations. In Study III and IV a home-based collaborative intervention including training on a functional as well as activity level, was evaluated. In Study III the effects of the intervention was evaluated through assessing the individual and mutual episodic memory-functions in the persons with dementia and their caregivers. In Study IV the intervention effect on caregivers communication and interaction skills when performing an everyday occupation together with their spouses with dementia was evaluated. The findings in Study I showed that the caregivers to the persons with dementia used a wide range of supports when working together with their partners. Most of these supports were shown to be beneficial to the occupational performance of the person with dementia, although some support that had negative impact on the performance of the latter was identified. The findings in Study II showed that both spouses perceived a loss of social and activity engagements as a consequence of the changes due to one having dementia. The caregivers described dilemmas they faced, but they also had management approaches to handle the altered everyday life. The results in Study III and IV showed that the collaborative intervention had a positive effect on the individual memory-performance of the persons with dementia. Also, Study III showed that the persons with dementia had a learning potential regarding individual episodic memory-functions when included in collaboration. In conclusion, the findings of these studies showed that the persons with dementia and their spouses engagements in everyday occupations were perceived as altered by both of them. The caregivers and the persons with dementia demonstrated different resources in finding strategies to solve the consequences of dementia in their everyday life. The identification of how persons with dementia and their spouses can learn strategies to collaborate might be useful in designing future interventions.

Supporting the communication, language, and literacy development of children with complex communication needs: State of the science and future research priorities

Light, J. and D. McNaughton (2012)

Children with complex communication needs (CCN) resulting from autism spectrum disorders, cerebral palsy, Down syndrome and other disabilities are severely restricted in their participation in educational, vocational, family, and community environments. There is a substantial body of research that demonstrates convincingly that children with CCN derive substantial benefits from augmentative and alternative communication (AAC) in their development of communication, language and literacy skills, with no risk to their speech development. Future research must address two significant challenges in order to maximize outcomes for children with CCN: (1) investigating how to improve the design of AAC apps/technologies so as to better meet the breadth of communication needs for the diverse population of children with CCN; and (2) ensuring the effective translation of these evidence-based AAC interventions to the everyday lives of children with CCN so that the possible becomes the probable. This article considers each of these challenges in turn, summarizing the state of the science as well as directions for future research and development. © 2012 Copyright 2012 RESNA.

Supporting the Communication, Language, and Literacy Development of Children with Complex Communication Needs: State of the Science and Future Research Priorities

Light, J., & McNaughton, D. (2012)

Children with complex communication needs (CCN) resulting from autism spectrum disorders, cerebral palsy, Down syndrome and other disabilities are severely restricted in their participation in educational, vocational, family, and community environments. There is a substantial body of research that demonstrates convincingly that children with CCN derive substantial benefits from augmentative and alternative communication (AAC) in their development of communication, language and literacy skills, with no risk to their speech development. Future research must address two significant challenges in order to maximize outcomes for children with CCN: (1) investigating how to improve the design of AAC apps/technologies so as to better meet the breadth of communication needs for the diverse population of children with CCN; and (2) ensuring the effective translation of these evidence-based AAC interventions to the everyday lives of children with CCN so that the possible becomes the probable. This article considers each of these challenges in turn, summarizing the state of the science as well as directions for future research and development.

Susceptibility and precipitating factors in depression: sex differences and similarities

Radloff LS, Rae DS. (1979)

Argues that the well-documented sex difference in depression may be due to a sex difference in susceptibility, in precipitating factors, or in both. Data from a large mental health survey (2,515 White over-18 residents of 2 cities) were used to study precipitating factors. It was found that women were exposed more often to more of the factors that relate to depression; with a few exceptions, the factors related to depression similarly for men and women. Matching on these factors did not eliminate the sex difference in depression. This suggests that there may be a sex difference in susceptibility. Current theories of depression are incorporated into a sequential model of how learned factors might contribute both to susceptibility and to the sex difference. (14 ref) (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Swedish parents of children with Down syndrome: a study on the initial information and support, and the subsequent daily life.

Hedov, Gerth (2002)

In this study 165 Swedish parents of young children with Downs's syndrome (DS) were investigated regarding their perception of the quality of the first information and support received after the birth of the child. The parents' opinions were compared with clinical routines at the paediatric clinics regarding these issues. Strong clinical ambitions fell short, however, since 70 % of the parents felt insufficiently informed; 56 % felt unsupported, and the timing of the disclosure varied between 0 hour to >5 days. On the basis of a grounded theory analysis the parents' written narratives regarding the quality of the first information and support were analysed to better understand the reasons underlying the parental dissatisfaction. Criticisms were raised by the parents concerning: the low communication skills by professionals; the lack of privacy; too much negative information; and an unmet desire to early meet other DS parents. The implications of being DS parents regarding their daily life were examined by measuring parental health, stress, sense of coherence, employment and sick leave rates. Results were compared with those in a randomly selected group of parents of healthy age-matched children. The similarities between the DS and control parents were more pronounced than the differences regarding divorce rates, siblings in the family, time spent on child care, employment and sick leave rates, and their self-perceived health, stress, and sense of coherence. However, self-perceived health of the DS mothers was impaired and stress was increased. A small group of DS parents (5 mothers and 1 father) had an extremely high rate of sick leave and no such group was seen in the control parents. In addition, the DS mothers stayed at home because of the child's sickness most frequently and the DS fathers stayed at home for this reason more than control mothers.Conclusions: Existing guidelines for optimal first information and support of new parents of children with DS are not always followed in Sweden. Qualitative clinical improvements from the parents' perspective are proposed. Most DS parents live an ordinary family life in respect to the measured parameters, but the risk for health deterioration, particularly in DS mothers, might need attention

Symbol communication in special schools in England: the current position and some key issues

Abbott, C., & Lucey, H. (2005)

In this article, originally submitted to B J S E's Research Section, Chris Abbott of King's College, London, and Helen Lucey of the Open University report on the outcomes of a survey of special schools in England. The aim of the research, funded by the Nuffield Foundation, was to understand the nature and extent of symbol use for communication and literacy. A questionnaire was used to collect data on topics including: the types of symbols in use; the methodologies operated; ownership of symbol choice; and agreed policies within and outside school. The researchers had an excellent response in this important survey, undertake n after a period of rapid growth in symbol use in special schools and elsewhere. Chris Abbott and Helen Lucey provide a discussion of the results of their survey and of the issues that arise from the findings and the many comments added by respondents. They close their article with a call for further detailed research, both in the UK and in co-operation with practitioners in other countries, into the ways in which symbol use can meet the needs of learners.

Symptoms of internalizing and externalizing problems: modeling recovery curves after the death of a parent

Schmiege, S.J., Khoo, S.T., Sandler, I.N., Ayers, T.S. & Wolchik, S.A. (2006)

Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.

Symptoms of internalizing and externalizing problems: modeling recovery curves after the death of a parent

Schmiege, S.J., Khoo, S.T., Sandler, I.N., Ayers, T.S., & Wolchik, S.A. (2006)

Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.

Synstimulering - den tidiga synutvecklingen

Jangdin Gunilla (1994)

Många barn med flerfunktionsnedsättning behöver synstimulering. Handboken Synstimulering – den tidiga utvecklingen av Gunilla Jangdin går igenom det lilla barnets synutveckling och visar hur synstimulans och samspel kan utvecklas trots omfattande flerfunktionsnedsättning i kombination med en synskada. Det är en lättläst och mycket användbar bok för alla föräldrar som vill förstå och stimulera sitt barns utveckling.

Systematic review and meta-analysis of interventions relevant for young offenders with mood disorders, anxiety disorders, or self-harm

Townsend E, Walker D-M, Sargeant S, Vostanis P, Hawton K, Stocker O, et al. (2010)

Background Mood and anxiety disorders, and problems with self-harm are significant and serious issues that are common in young people in the Criminal Justice System. Aims To examine whether interventions relevant to young offenders with mood or anxiety disorders, or problems with self-harm are effective. Method Systematic review and meta-analysis of data from randomised controlled trials relevant to young offenders experiencing these problems. Results An exhaustive search of the worldwide literature (published and unpublished) yielded 10 studies suitable for inclusion in this review. Meta-analysis of data from three studies (with a total population of 171 individuals) revealed that group-based Cognitive Behaviour Therapy (CBT) may help to reduce symptoms of depression in young offenders. Conclusions These preliminary findings suggest that group-based CBT may be useful for young offenders with such mental health problems, but larger high quality RCTs are now needed to bolster the evidence-base.

Systematic Review on Post-Traumatic Stress Disorder Among Survivors of the Wenchuan Earthquake

Hong, C., & Efferth, T. (2015)

Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.

Systematic Review on Post-Traumatic Stress Disorder Among Survivors of the Wenchuan Earthquake

Hong, C., & Efferth, T. (2015)

Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.

Systematik för säker evidens

Jansson, F. (2013)

I slutet av 2012 kom Socialstyrelsen ut
med rapporten Effekter av stöd till anhö
-
riga som vårdar äldre med demenssjukdom
eller sköra äldre – en systematisk översikt.
Syftet med översikten var att utvärdera effekter
av utbildningsprogram, psykosocialt
stöd och kombinationsprogram som ges till
anhöriga som vårdar sköra äldre eller äldre
med demenssjukdom. I översikten under
-
söktes enbart studier som mätt effekter både
för den anhöriga och för
den närstående sjuka.

Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering

Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G. (2012)

Denna rapport presenterar evidens för insatser till barn i förskoleåldern på tidig kommunikativ nivå med syfte att ge rekommendationer till svensk habiliteringsverksamhet. Utifrån en formulerad fiktiv frågeställning utförde gruppen sökningar i vetenskapliga databaser. Några svenska rapporter och magisterarbeten har också inkluderats i granskningen.

Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering

Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G. (2012)

Gunilla Thunberg, logoped och fil Dr på DART har på updrag av Sveriges Habiliteringschefers förening lett en grupp som sammanställt evidens för tidiga språk- och kommunikationsinsatser till förskolebarn inom barnhabilitering. Gruppen är nu färdig med sitt arbete och den 1/4 publicerades rapporten och rekommendationerna på Sveriges Habiliteringsschefers förenings hemsida. Det finns mycket spännande att ta del av när det gäller tidiga AKK-insatser så missa inte denna viktiga rapport! Du hittar den och kan ladda ner den här:

Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering

Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G. (2012)

Föreningen Sveriges Habiliteringschefer har som uppgift att verka för en utveckling av habiliteringsverksamheten för barn, ungdomar och vuxna utifrån de övergripande mål som beskrivs i hälso- och sjukvårdslagen, lagen om särskilt stöd och service till vissa funktionshindrade samt föreskriften God Vård, SOSFS 2005:12. Föreningen ska på olika sätt stimulera forsknings- och utvecklingsarbete. Våra verksamheter riktar sig till en grupp barn, ungdomar och vuxna i samhället med stora och komplicerade behov.

Föreningen har en ambition att gemensamt utveckla en kvalitetssäker och effektiv verksamhet. Effektivitet kan ses ur en traditionell kostnadsaspekt men också ur barnet/den vuxnes och anhörigas levnadsaspekt.

Det finns en flora av interventioner. Inom ett flertal områden behöver metoder, arbetssätt och behandlingsresultat för barn, ungdomar och vuxna med funktionsnedsättningar beskrivas och dokumenteras. För att med största möjliga säkerhet veta vad som ska utvecklas och vad som ska avvecklas krävs ett nationellt samarbete. 2001 initierades därför ett projekt som fick namnet Evidens Baserad Habilitering (EBH). Syftet var att pröva en nationell arbetsmodell bestående av övergripande arbetsgrupper med uppgift att granska olika interventioners evidens. Projektet har med tiden övergått till att bli ett vedertaget arbetssätt när det gäller att ta fram evidensläget för ett interventionsområde. Detta är den sjunde arbetsgruppen där arbetsmodellen har använts.

Arbetsgruppens uppgift har varit att:

göra en litteraturöversikt över aktuell forskning och erfarenhetsbaserade resultat avseende tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering,
utifrån överenskomna kriterier kritiskt granska de utvärderingar och studier som publicerats,
på ett lättfattligt sätt göra erhållna resultat tillgängliga i en rapport.
Rapporten var färdig i februari 2011 och en revidering är gjord september 2012.

Föreningen Sveriges Habiliteringschefer ställer sig bakom de rekommendationer som arbetsgruppen lagt fram. Rapporten bidrar till en fördjupad kunskap.

Ett stort tack till Anna Blomgren, Barbara Eberhart, Jessika Forsberg, Lena Nilsson, Maria Nolemo och Gunilla Thunberg för att ni med lust, energi och stort engagemang har gripit er ann uppgiften. Genom er granskning tydliggörs också behovet av fortsatta studier för att säkra en habilitering på säker grund.

Göteborg 2012-11-05

Anna Kågeson
Styrgruppen Evidensbaserad habilitering
Föreningen Sveriges Habiliteringschefer

till anhöriga i Uppsala kommun – en kartläggning, Delrapport 1, FoU-rapport 2012/5.

Winqvist, M. (2012)

I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. För att dra lärdom utvecklingsarbetet har Nationellt
kompetenscentrum anhöriga (Nka) tagit initiativ till denna undersökning för att i samverkan
med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till anhöriga under
tre år i åtta kommuner.
Syftet med studien är att:
- Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp
och utvärderas inom områdena äldre, funktionshinder och individ- familjeomsorg samt
samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom
området.
- Undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga
- Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.
Stödet till anhöriga i de utvalda kommunerna har kartlagts år 2010 och år 2013 genom att ta
del av tillgängliga dokument, kommunernas hemsida och informationsblad samt intervjuer
med och enkätutskick till chefer och andra nyckelpersoner. Genom en enkätstudie med
uppföljande telefonintervjuer har anhörigas situation och syn på sitt stöd, undersökts vid två
tillfällen. Årligen genomfördes fokusgruppsintervjuer, en inom vardera äldre-,
funktionshinder- samt individ och familjeområdet med syftet att beskriva och följa
utvecklingen av stödet till anhöriga; vad som fungerade bra och mindre bra. I varje
fokusgrupp ingick personal, beslutsfattare och representanter från ideella sektorn.
I denna delrapport, som också är slutrapport för hela projektet, presenteras resultatet för den
sista kartläggningen, gällande år 2013. Utvecklingen av anhörigstödet under de senaste åren
beskrivs också genom en jämförelse av resultaten från de olika kartläggningarna.
Tyngdpunkten i denna sammanfattning ligger på denna jämförelse.
Resultat
Det har inte skett några omvälvande förändringar i anhörigstödet i Uppsala kommun som
helhet under åren 2010 till 2013, men utvecklingen har inte stått stilla. Medvetenheten om
vikten av ett anhörigperspektiv hade på flera håll ökat.
Anhörigcentrum genomgick under tidsperioden en stor organisationsförändring.
Verksamheten bedrevs under två år som projekt, för att sedan fortsätta med ettåriga avtal i
väntan på beslut om eventuell konkurrensutsättning. Kunskapen om Anhörigcentrums
existens ökade under undersökningsperioden i kommunen och allt fler anhöriga sökte sig dit.
Målgruppen förändrades genom att också inkludera anhöriga till personer på boenden.
Anhöriga till äldre personer var fortfarande den största målgruppen, men en ökning av
anhöriga till yngre personer och framför allt från psykiatri och socialpsykiatri kunde noteras.
Utformningen av stödet till anhöriga var i stort densamma, men förändrades i viss mån till
exempel genom att anhöriggrupperna vände sig till andra målgrupper, rekreationshelger
infördes och anhöriga fick möjlighet till juristhjälp. Behovsinventeringar gjordes årligen, men
på lite olika sätt och med olika fokus. Anhörigcentrum ingick vid tiden för kartläggning två i
kommunens Nöjd-Kund-Index. Samverkan med landstinget utvecklades under tidsperioden
med t.ex. bemanning av "anhörighörna" på Akademiska sjukhuset och Anhörigcentrum hade
också tagit en aktiv del i landstingets projekt för utveckling av anhörigstöd.
8
I Äldrenämndens uppdragsplaner var effektmålen desamma för anhörigstödet under
uppföljningstiden, men målvärdena för antalet personer som skulle använda sig av
anhörigstödet (läs Anhörigcentrum) ökade från år till år. I förfrågningsunderlaget gällande
hemvård hade nya ska-krav införts under en egen rubrik; Anhörigvänlig vård och omsorg.
Inom hemvården hade också anhöriga börjat uppmärksammas genom anhörigträffar
information med mera. Inom vård- och omsorgsboendena fortsatte anhörigstödet
huvudsakligen inom den palliativa och avancerade sjukvården, men nytt var att Silviasystrar
inom åtminstone ett annat boende hade introducerat anhöriggrupper. Ett omfattande
värdegrundsarbete genomfördes inom äldreomsorgen som också inkluderade anhörigfrågor.
I förfrågningsunderlagen för upphandling av LSS-boendeenheter hade år 2013 infogats, under
rubriken Anhöriga, specifika ska-krav rörande anhöriga som inte hade funnits tidigare. Inom
Affärsområde assistans hade en grupp chefer i utvecklingssyfte börjat arbeta med
anhörigfrågor och anhörigas delaktighet. Verksamheten för anställda anhöriga bedrevs med
höga ambitioner och engagemang. Affärsområdeschefen i Affärsområde barn, ungdom &
familj beklagade bristen på stöd till anhöriga till personer under 21 år. Några insatser inom
verksamheten hade blivit mer flexibla bland annat för att underlätta för anhöriga. Arbete med
Samordnad individuell plan (Sip) infördes under uppföljningstiden och detta trodde många
skulle underlätta anhörigas situation.
I måldokument från de båda åren lyftes helhetsperspektiv och familjens roll fram på likartat
sätt inom individ- och familjeområdet. I kommunens drogpolitiska program nämndes
anhöriga som målgrupp för verksamheten. Viktiga stödinsatser erbjöds under hela den
undersökta tidsperioden inom Råd- och behandlingsgruppen, Trappan och familjeenheterna.
Inom Affärsområde socialpsykiatri & beroende hade en ny form av utbildning skapats. Den så
kallade återhämtningsakademin som ämnade samla brukare, personal och anhöriga i
gemensamma utbildningar.
Resultaten från enkäten till de anhöriga skiljer sig inte i någon större omfattning mellan de
båda studerade åren. Det är relativt stora andelar av respondenterna som beskriver en
problematisk livssituation och resultaten antyder också att det är de känslomässiga
dimensionerna som kan kräva ytterligare stödinsatser.
Det mest slående resultatet i de båda intervjuundersökningarna var att de anhöriga var nöjda
med det stöd som de hade fått. Framför allt gällde detta Anhörigcentrums verksamhet.
Rapporten avslutas med en begreppsdiskussion. Orden anhöriga, närstående, anhörigstöd med
flera används på olikartade sätt. För att kunna beskriva, följa, jämföra och inte minst utveckla
innehållet i stödet till anhöriga krävs att begreppsapparaten utvecklas. Fördelar och nackdelar
med ett specialiserat centraliserat anhörigstöd i jämförelse med ett integrerat decentraliserat
stöd diskuteras vidare och vikten av att ett anhörigperspektiv och anhörigstöd implementeras i
hela socialtjänsten betonas. För detta krävs bland annat att anhörigfrågorna finns med i
styrdokumenten på alla nivåer och att utbildningsinsatser genomförs.
Uppsala kommun har i en nationell jämförelse legat långt framme i anhörigfrågor under en
lång tid. Klimatet för att bygga upp och utveckla ett (specialiserat) anhörigstöd har varit gott.
En förhoppning är att den positiva trenden kommer att fortsätta i vetskapen om att mycket
hitintills är gjort, men att de svåraste uppgifterna kanske återstår; att se till att
anhörigperspektiv och anhörigstöd integreras inom hela socialtjänsten.

Tillgång eller bromskloss? Om samverkan med anhöriga inom psykistriska verksamheter i kommuner och landsting

Winqvist, M. (2013)

Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.

Tillgång eller bromskloss? Om samverkan med anhöriga inom psykistriska verksamheter i kommuner och landsting

Winqvist, M. (2013)

Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.

Tillgång till habilitering och rehabilitering för barn och ungdomar med funktionshinder. Uppföljning och utvärdering, 2003-103-2.

Socialstyrelsen (2003)

Socialstyrelsen har haft regeringens uppdrag att kartl‰gga p vilket s‰ttlandstingens barn- och ungdomshabilitering ‰r tillg‰nglig fˆr barn och ung-domar i olika Âldrar med olika funktionshinder. Fˆr att skapa underlag fˆrarbetet har enk‰ter riktats till landstingen och till barn/ungdomar med fa-miljer som under fˆrsta halvÂret 2002 hade habiliteringsinsatser. En kvalita-tiv studie som omfattar tio familjer har ocks gjorts. Markˆr AB, ÷rebro haransvarat fˆr insamlingen och sammanst‰llningen av materialet, som finnspublicerat i tv rapporter.UtifrÂn den genomfˆrda enk‰ten till barn/ungdomar med familjer kan So-cialstyrelsen konstatera att mÂnga barn och ungdomar med funktionshinderfÂr en bra habilitering och rehabilitering. MÂnga ‰r nˆjda bÂde med innehÂll,omfattning, bemˆtande, inflytande och mˆjligheter att pÂverka. Men Social-styrelsen kan ocks konstatera att de brister som tidigare studier har visatfortfarande kvarstÂr. TillgÂngen till habilitering/rehabilitering ‰r oj‰mnt fˆr-delad, bÂde mellan olika delar i landet och mellan olika grupper av funk-tionshinder.Sammantaget ˆver landet tas alla grupper av barn/ungdomar med funk-tionshinder emot av landstingen fˆr habilitering, men en grupp som p ettst‰lle har god tillgÂng till habilitering kan i en annan del av landet saknaviktiga insatser. ƒven inom ett och samma landsting fˆrekommer betydandevariationer.TillgÂng till habilitering och rehabilitering. Grupper som vanligen hartillgÂng till habilitering/rehabilitering ‰r barn och ungdomar med utveck-lingsstˆrning, med rˆrelsehinder och med neurologiska skador och sjukdo-mar. Barn/ungdomar med brister i tillgÂng till habilitering ‰r framfˆr allt demed funktionsneds‰ttningar till fˆljd av ADHD, autismliknande tillstÂndoch autism. Barn med flera funktionshinder, medicinska funktionshinderoch vissa kommunikationshinder, t.ex. synskada och talsvÂrigheter, fÂr inteheller sina behov av habilitering/rehabilitering tillr‰ckligt v‰l tillgodosedda.Brist p underlag. Landstingen genomfˆr inga kartl‰ggningar fˆr attkunna redovisa och fˆlja vilka barn/ungdomar som har behov av habilite-ring/rehabilitering, hur mÂnga de ‰r, vilken Âlder de har eller vilka typer avfunktionshinder det ‰r frÂga om och hur behoven ser ut.Landstingen kan inte redovisa vilka resurser som riktas till habilite-ring/rehabilitering fˆr barn och ungdomar, varken i pengar eller personal.Inflytande och mˆjlighet att pÂverka. Den enskildes mˆjligheter att pÂ-verka sin habilitering/rehabilitering ‰r begr‰nsade. S‰rskilt tycks detta g‰llabarn vars fˆr‰ldrar inte ‰r fˆdda i Sverige, har lÂg utbildning och/eller lÂginkomst.Individuell habiliteringsplan. Individuella planer enligt h‰lso- och sjuk-vÂrdslagen anv‰nds s‰llan om man ser till landstingens alla verksamheter. Ifˆrsta hand ‰r det den verksamhet som ben‰mns barn- och ungdomshabilite-ring som arbetar med individuell habiliterings/rehabiliteringsplan.
8Samverkan. Det finns brister i samverkan, bÂde internt inom landstingenoch externt mellan landstingens olika verksamheter och t.ex. skolan.Rutiner fˆr kvalitetsutveckling saknas. MÂnga kliniker saknar doku-menterade rutiner fˆr att samla in information och synpunkter frÂn bar-nen/ungdomarna och deras familjer.Information. Familjerna anser ofta att den information som de fÂr frÂnlandstingen ‰r bristf‰llig.Bemˆtande. MÂnga fˆr‰ldrar upplever att det stˆd de fÂr ‰r otillr‰ckligt.Minst nˆjda med den habilitering de fÂr ‰r familjer d‰r barnet/ungdomen harflera funktionshinder. I undersˆkningen framtr‰der tydligt fˆr‰ldrarnask‰nsla av att sj‰lva tvingas vara drivande fˆr att f det stˆd som de behˆver.Personal. Fortfarande saknas tillgÂng till insatser frÂn flera yrkesgrupperfˆr att habilitering fˆr barn och ungdomar skall fungera v‰l, framfˆr alltlogopeder, men ocks psykologer, l‰kare, kuratorer och sjukgymnaster.Socialstyrelsen anser att habilitering/rehabilitering bˆr f en starkarest‰llning inom h‰lso- och sjukvÂrden.Socialstyrelsen bedˆmer att den lagstiftning som finns ‰r tillr‰cklig underfˆruts‰ttning att den till‰mpas. Socialstyrelsen bedˆmer att ytterligare utred-ning av omrÂdet i nul‰get inte skulle gagna barn och ungdomar med funk-tionshinder.Socialstyrelsen anseratt landstingen fˆr att kunna planera sin h‰lso- ochsjukvÂrd med utgÂngspunkt i befolkningens behov regelbundet bˆr genom-fˆra kartl‰ggning av vilka grupper av barn/ungdomar med funktionshindersom finns och hur deras behov ser ut.Landstingens olika verksamheter bˆr av ledningen ges tydliga uppdragom vilka grupper av funktionshindrade som de har ansvar fˆr.SjukvÂrdshuvudm‰nnen bˆr i forts‰ttningen redovisa vilka insatser somfinns fˆr olika grupper av funktionshinder i en s‰rskild organisationsplan.SjukvÂrdshuvudm‰nnen bˆr dessutom tydligt redovisa vilka resurser i formav pengar och personal som gÂr till habilitering/rehabilitering fˆr barn ochungdomar med funktionshinder.Enligt h‰lso- och sjukvÂrdslagen skall individuella habiliterings- och re-habiliteringsplaner erbjudas barn/ungdomar med funktionshinder och derasfamiljer. Det utvecklingsarbete som pÂgÂr n‰r det g‰ller individuell planenligt h‰lso- och sjukvÂrdslagen behˆver lyftas fram och fˆrst‰rkas.Kvalitetsarbetet bˆr ges en mera framtr‰dande st‰llning inom verksam-heter med ansvar fˆr habilitering/rehabilitering och hj‰lpmedel och huvud-m‰nnen bˆr stˆdja forskning och statistikinsamling inom omrÂdet.SjukvÂrdshuvudm‰nnen bˆr ocks verka fˆr att viktiga begrepp inom ha-bilitering och rehabilitering fˆrankras inom verksamheterna

Tillit som bot. Placebo i tid och rum

Sachs, Lisbet (2004)

Tillit ger reaktioner i hjärnan som påverkar känslan och därmed kroppen. Sådan förväntan och tillit har inte blivit medicinskt utforskad. Det har blivit allt svårare att avfärda skildringar av läkande ritualer och magi från andra länder som enbart anekdoter.
Boken vänder sig till medicin- och antropologistuderande och studenter inom vård och omsorg samt alla de som i olika befattningar och roller är verksamma inom vården.

Tills döden skiljer oss åt – om att vara äldre omsorgsgivare

Takter, M. (2015)

"Att vara anhörig är att få höra an till någon, att vara närstående är
att få stå någon nära. Anhörigskap är för de flesta inte att vara en
resurs, en funktion eller en kategori. Anhörigskap är relation, en
relation till en annan människa som man vill ha i sin närhet och vara
nära." Så börjar inledningen till antologin om det obetalda
omsorgsarbetet.

Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport

Socialstyrelsen (2014)

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport

Socialstyrelsen (2014)

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Tina och mormor

Ann-Kristin Lundmark (2015)

Vid sorg och död är den första reaktionen, för många, att skydda sitt barn genom att inte tala om det.Författaren Ann-Kristin Lundmark vill med sin tredje bok i serien om 10-åriga Tina, Tina och mormor, öppna upp för samtal inom ämnet. Sorg kan inte undvikas och ett barn kan inte alltid skyddas, men genom att prata om det som en vägledning kan många frågor besvaras och bidra till en enklare sorgbearbetning.

Tina har en intensiv vår med kompisar, skola och fotbollsträning och hinner inte träffa sin mormor så mycket som vanligt. Tina får lite dåligt samvete. En kväll vaknar hon och behöver gå på toa, men när hon ska gå och lägga sig igen hör hon prat från köket. Tina får veta att mormor är sjuk i cancer och snart ska dö. Efteråt är ingenting riktigt som förut och hela Tinas tillvaro rasar samman!

Titanium : En liten bok om stora hjältar i deras kamp mot cancer

Hedberg Maria (2017)

Väldigt berörande! Ett barn, hans bror, en familj drabbad av cancer så nära beskrivet att det kryper under skinnet på läsaren. Hur jobbigt och oroligt det faktiskt är både i stort och smått i den situation familjen levt med under alla dessa år. Författaren speglar även väldigt väl hur viktigt det är med förtroende och bemötande inom vården. En bok av detta slag bör varje vårdarbetare läsa och lägga de insikter den ger i bakhuvudet för att bättre kunna förstå helhetssituationen för patienten och familjen.Nils Erik Svedlund, barnläkareMaria tar oss med i många års kamp med ett cancersjukt barn och deras vardag. Vi kommer nära förtvivlan, smärta och tristess men också hopp, glädje och en stark syskonrelation. En viktig bok, även för personal och vårdutbildningar!Angelica Lindberg, kuratorSå glad att denna ärliga och viktiga bok finns! Berättelsen gav mig en insikt och förståelse för hur livet kan te sig i en familj med ett cancersjukt barn! När jag läste Titanium var det som om jag själv fanns med i familjens vardag och närhet. Så levande, så äkta, både kärleksfullt och skrämmande. Vilken styrka, vilket tålamod, vilken förmåga att ta vara på det minsta lilla positiva trots det ofattbara som händer under cancerbehandlingen. En mycket varm, närvarande och viktig berättelse om en lång, återkommande kamp mot leukemi i unga år och de konsekvenser det får för alla i familjen. Men också vikten av att tänka på syskonen, att låta dem finnas med och få plats i den vardag som blivit. Titanium är en bok jag varmt vill rekommendera, särskilt till de som arbetar inom vård och skola.Anneli Träff, grundskollärare

To be a good food provider: an exploratory study among spouses of persons with Alzheimer's disease

Fjellström, C., Starkenberg, A., Wesslen, A., Bäckström, A. T., & Faxén-Irving, G. (2010)

Large proportions of people with dementia live at home and need help from a relative. The aim of the current study was to examine how people living with persons with Alzheimer's disease (AD) perceived everyday life aspects of food choices, cooking, and food-related work. The analyses are based on focus group interviews including women and men acting as caregivers to people with AD and living in Sweden. The main results identified from the data, were how cohabitants to persons with AD struggle with either taking on a new role as a food provider or extending it, but also how they tried to cope as carer, which entailed food being an important part of the treatment of the disease. Those expressing greatest concern were those perceiving themselves as inexperienced food providers and carers, which in this study were all men.

To maintain control: negotiations in the everyday life of older people who can no longer manage on their own

Dunér, A. (2007)

The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.

To maintain control: negotiations in the everyday life of older people who can no longer manage on their own

Dunér, A. (2007)

The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.

To manage a complex depency: The experience of caregiver after a fall

De la Questa Benjomea C, Ramis Ortega E, Arredondo Gonzalez CP (2019)

Abstract
Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention.

Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall.

Design: Qualitative study that used a symbolic interactionism perspective.

Methods: Twenty-two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi-structured interviews between February 2014 - December 2015. Analysis was guided by grounded theory procedures.

Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals.

Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.

To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers

Keefe J, Rajnovich B. (2007)

In many countries one approach to supporting family-and-friend caregivers is direct financial or monetary support. Debates about the benefits and consequences of such policies pervade the literature. Building on the premise that values underlie public policy, the paper examines four policy paradoxes in the literature and uses selected examples from an international policy analysis to illustrate the underlying objectives and values upon which many of the policies were developed. These include the responsibility to care, economic or social objectives, gender equity, and the autonomy of care receivers. The authors conclude that policy makers need to be cautious about the unintended effects of financial support policy and develop a menu of policies and services to support caregivers. Future policy development in Canada must enable legitimate choice across the life course and ensure that neither the caregiver nor the care receiver will experience short- or long-term financial consequences of his or her choice.

To use or not to use: A literature review of factors that influence family caregivers' use of support services

Mast, M. E. (2013)

Many family caregivers of frail older adults postpone or decline accessible and affordable services such as respite, despite their acknowledgement of unmet needs for support and time away from the burdens and stress of caregiving. How caregivers perceive their need for services, and the factors that influence their decisions to use or not use services, remain poorly understood. This article reviews the literature on family caregiving and the complex interrelated factors that influence caregivers' choices regarding support services. It organizes these factors into four areas: (a) service characteristics, (b) personal predisposing factors that affect perceived need, (c) experiential coping and decisionmaking patterns, and (d) relational factors. It also examines the implications of this evidence for nursing assessments and interventions with frail older adults and their family caregivers..

Tourette syndrome in children and adolescents: Special considerations

Eapen, V. and R. Črnčec (2009)

Tourette syndrome (TS) affects people of all ages, with onset in early childhood and continuing through the different stages of the life cycle into adolescence and adults. This review focuses on barriers to diagnosis and challenges in the management of young patients with TS. Barriers to identification occur at multiple levels, including detection in the community setting (including schools), parents' help-seeking behavior, and cultural influences on such behavior, as well as diagnosis by the medical provider. Challenges to management include unfamiliarity of primary care providers, inconsistencies in the diagnosis and management plan, and failure to recognize comorbid conditions, as well as inadequate knowledge and lack of resources to effectively deal with comorbidities. In addition to the complexities posed by pharmacological interactions, there are unique psychosocial challenges experienced by young people with TS and their families. Effective communication and collaboration between families, health care providers, and school personnel, as well as supportive communities, are essential components of comprehensive management. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Toward a comprehensive developmental model for major depression in men

Kendler, K.S, Gardner, C.O. & Prescott, C.A. (2006)

Abstract
OBJECTIVE:
The multiple risk factors for major depression are interrelated through poorly understood developmental pathways. In 2002, the authors presented a developmental model for major depression in women. Based on similar methods, they here present an analogous model for men.
METHOD:
Using data from 2,935 adult male twins, interviewed twice over a 2-4-year period, the authors constructed, by means of structural equation modeling, an integrated etiologic model for major depression that predicts depressive episodes over 1 year from 18 risk factors conceptualized as five developmental "tiers" reflecting childhood, early adolescence, late adolescence, adulthood, and the last year.
RESULTS:
The best-fitting model, including six correlations and 76 paths, provided a good fit to the data, explaining 49% of the variance in the liability to depressive episodes. The overall results, similar to those seen in women, suggest that the development of major depression results from the action and interaction of three broad pathways of internalizing symptoms, externalizing symptoms, and adversity. Childhood parental loss and low self-esteem were more potent variables in the model in men than in women. Genetic risks for major depression had a broader spectrum of action in men than in women. The pathway to major depression through externalizing symptoms was not more prominent in men than in women.
CONCLUSIONS:
Major depression in men, as in women, is an etiologically complex disorder influenced by risk factors from multiple domains that act in developmental time. The similarities in etiologic pathways to major depression for men and women outweigh the modest differences.

Toward a Definition of Mixed Methods Research

Johnson, R.B., Onwuegbuzie, AJ., & Turner, L. (2007)

The purpose of this article is to examine how the field of mixed methods currently is being defined. The authors asked many of the current leaders in mixed methods research how they define mixed methods research. The authors provide the leaders' definitions and discuss the content found as they searched for the criteria of demarcation. The authors provide a current answer to the question, What is mixed methods research? They also briefly summarize the recent history of mixed methods and list several issues that need additional work as the field continues to advance. They argue that mixed methods research is one of the three major "research paradigms" (quantitative research, qualitative research, and mixed methods research). The authors hope this article will contribute to the ongoing dialogue about how mixed methods research is defined and conceptualized by its practitioners.

Towards common principles of flexicurity: More and better jobs through flexibility and security

European Commission (2007)

The Commission presents a set of guidelines as a framework for the Member States' flexicurity strategies.
The principles of flexicurity contribute to the modernisation of the European social models.
Concept of flexicurity
To be effective, labour market modernisation strategies must take into account the needs of employees and employers alike. The concept of flexicurity is therefore a global approach which favours:
•flexibility of employees, who must be able to adapt to labour market developments and achieve their professional transitions. Similarly, this approach must improve the flexibility of enterprises and work organisation in order to meet the needs of employers and to improve the balance between work and family life;
•security for employees, who must be able to progress in their professional careers, develop their skills and be supported by social security systems when they are not working.
Flexicurity strategies aim to reduce unemployment and poverty rates in the European Union (EU). In particular, they help to facilitate the integration of the most underprivileged groups on the labour market (such as the young, women, older workers and the long-term unemployed).

Towards Developing New Partnerships in Public Services: Users as Consumers, Citizens and/or Co-Producers in Health and Social Care in England and Sweden

Fotaki, M. (2011)

The causes and effects of marketization of public services have been analysed extensively in the literature, but there is relatively little research on how those policies impact on the development of new forms of governance, and the role of users in these new arrangements. This study reviews examples of competition, freedom of choice and personalized care in health and social services in England and Sweden, in order to examine the type of relationships emerging between the user/consumer vis-à-vis market driven providers and various agencies of the state under the marketized welfare. The article focuses on the possible roles users might assume in new hybrid arrangements between markets, collaborations and steering. A user typology: namely, that of a consumer, citizen, co-producer and responsibilized agent in various governance arrangements, is then suggested. The article concludes by arguing that pro-market policies instead of meeting the alleged needs of post-modern users for individualized public services are likely to promote a new type of highly volatile and fragile partnerships, and create a new subordinated user who has no choice but to 'choose' services they have little control over.

Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community

Sundar, V., Fox, S. W., & Phillips, K. G. (2014)

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.

Transitions in men's caring identities: experiences from home-based care to nursing home placement.(Report).

Eriksson, H. and J. Sandberg (2008)

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1748-3743.2007.00092.x Byline: Henrik Eriksson, Jonas Sandberg Keywords: caring; gender; informal care; nursing home Abstract: Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers. Article History: Submitted for publication: 21 November 2006 Accepted for publication: 25 June 2007 Article note: Henrik Eriksson, Department of Caring and Public Health Sciences, Malardalen University, Box 325, 631 05, Eskilstuna, Sweden, Telephone: +46 16 153747, E-mail: henrik.eriksson@mdh.se

Transitions into informal caregiving and out of paid employment of women in their 50s

Berecki-Gisolf J, Lucke J, Hockey R, Dobson A. (2008)

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

Transitions into informal caregiving and out of paid employment of women in their 50s

Berecki-Gisolf J, Lucke J, Hockey R, Dobson A. (2008)

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons With Dementia

Teri L, McKenzie G, Logsdon RG, McCurry SM, Bollin S, Mead J, et al. (2012)

The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimer's Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimer's Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimer's Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues.

Translucency and Complexity: Effects on Blissymbol Learning Using Computer and Teacher Presentations

Hetzroni, O. E. (2002)

Purpose: A single-subject alternating treatment design was used to (a) evaluate the influence of translucency (i.e., the guessability of the symbol when the referent is known) and complexity (i.e., the number of lines or strokes that compose the symbol) on Blissymbol acquisition and (b) compare the effectiveness of computer-based instruction (CBI) and traditional teacher-based instruction (TBI) on students' accuracy in identifying Blissymbols.

Method: Three students with communication disorders were taught to identify 40 Blissymbols using the two instructional formats.

Results: Findings revealed that high translucency Blissymbols were learned significantly faster than low translucency Blissymbols for all participants. High complexity assisted learning when translucency was high, but hindered learning when translucency was low. These results were evident in both interventions.

Translucency and learnability of Blissymbols in Setswana-speaking children: an exploration

Bornman, J., Alant, E., & Du Preez, A. (2009)

Although the importance of iconicity in the learning of symbols has been widely acknowledged, there have been few systematic investigations into the influence of culture on the ratings of symbol iconicity. The purposes of this study were two-fold: to determine (a) the translucency ratings of specific Blissymbols as rated by 6- to 7-year-old Setswana-speaking children (one of South Africa's 11 official languages); and (b) whether the ratings changed after second and third exposures in order to determine the learnability of these symbols. This study is partially based on the study by Quist et al. (1998), which utilized Dutch and American participants. Thirty-four Setswana children were exposed to 93 selected Blissymbols. A 3-point semantic differential scale consisting of three faces accompanied each Blissymbol, without the written gloss. This procedure was repeated over a period of 3 days. The results indicated that the majority of Blissymbols were rated as having high translucency ratings. The research further demonstrated significant differences in translucency between first and second exposures, suggesting that learning of the symbols had occurred. The comparison between the results of the current study and the results reported in the Quist et al. study reveal that the translucency ratings of the majority of the selected Blissymbols ranged from moderate to high for all three studies, but that the distribution of symbols across the ratings appears to be different.

Transmission of Holocaust Trauma-An Integrative View

Kellerman, N. P. F. (2001)

Much has been written about how children of Holocaust survivors tend to absorb the psychological burdens of their parents. But questions remain regarding such parental transmission of Holocaust trauma. What was in fact passed on from parent to child? How does the transmission occur? Do parents invariably transmit and are children equally susceptible? The purpose of this article is to discuss these issues and present a model in which the process of trauma transmission can be understood more consistently. After a brief description of that which was transmitted, four prevalent theories of trauma transmission are described, including the psychodynamic, sociocultural, family system, and biological points of view. Thereafter, some of the mitigating and aggravating factors are presented that are assumed to decrease or increase the risk of children to absorb the trauma of their parents and to develop specific second-generation psychopathology as a result. In conclusion, an integrative view is suggested that attempts to define the possible influence of biological predisposition, individual developmental history, family system and social situation on transgenerational influence of Holocaust trauma.

Trauma, Exile and Mental Health in Young Refugees

Montgomery, E. (2011)

OBJECTIVE:
To review evidence of trauma and exile-related mental health in young refugees from the Middle East.

METHOD:
A review of four empirical studies: i) a qualitative study of 11 children from torture surviving families, ii) a cohort study of 311 3-15-year-old asylum-seeking children, iii) a qualitative study of 14 members of torture surviving families and iv) a follow-up study of 131 11-23-year-old refugees.

RESULTS:
The reactions of the children were not necessarily post-traumatic stress disorder specific. Seventy-seven per cent suffered from anxiety, sleep disturbance and/or depressed mood at arrival. Sleep disturbance (prevalence 34%) was primarily predicted by a family history of violence. At follow-up, 25.9% suffered from clinically relevant psychological symptoms. Traumatic experiences before arrival and stressful events in exile predicted internalizing behaviour, witnessing violence and frequent school changes in exile predicted externalizing behaviour. School participation, Danish friends, language proficiency and mother's education predicted less long-term psychological problems.

CONCLUSION:
Psychological problems are frequent in refugee children, but the extents are reduced over time in exile. Traumatic experience before arrival is most important for the short-term reaction of the children while aspects of life in exile are important for the children's ability to recover from early traumatization.

Traumatic loss in children and adolescents

Mannarino, A.P. & Cohen, J.A. (2011)

Although different types of childhood trauma have many common characteristics and mental health outcomes, traumatic loss in children and adolescents has a number of distinctive features. Most importantly, youth who experience a traumatic loss may develop childhood traumatic grief (CTG), which is the encroachment of trauma symptoms on the grieving process and prevents the child from negotiating the typical steps associated with normal bereavement. This article discusses the distinctive features of CTG, how it is different from normal bereavement, how this condition is assessed, and promising treatments for children who experience a traumatic loss.

Traveller information in support of the mobility of older people and people with disabilities : user and provider perspectives

Waara, N. (2013)

Traveller information designed to fulfil needs and expectations of individual travellers is a key factor in improving access for older people and people with disabilities to public transport. The overall aim of this thesis is to contribute to the knowledge of user and provider perspectives on the provision of traveller information for older people and people with disabilities in public transport with a focus on use and provision of such traveller information through online traveller information services. The research work is based on perceptions of older people and people with disabilities, together with experts' views on the implementation process. Both qualitative methods (interviews, focus group interviews, group discussions, workshops) and quantitative methods (questionnaires) were used. The substantial influence on the travel of older people and people with disabilities of use of online traveller information services is the empowerment of those of the older travellers and travellers with disabilities that are anxious and insecure before a journey. Through better access of traveller information offered by online traveller information services these travellers can find what they need to build their confidence before a journey and subsequently be supported in their roles as travellers. That is, when they do travel in public transport they want to be able to do so safely and with confidence; they do not necessarily want to increase the number of journeys they undertake. Thus, theoretically the concept of motility has higher relevance for this particular group of travellers than the concept of mobility. The exploration of the traveller information content shows that even though the need to plan and prepare for a journey seems to be equally important for the whole group of older people and people with disabilities as it is for subgroups based on functional limitations, the importance and the intended use of the traveller information differ between groups as the focus shifts from comfort information on an aggregated level to an increasing importance of accessibility information for subgroups. Both the comfort information and the absolute information enable assessment of the effort required to carry through a journey. This is decisive for the choice to travel, but the traveller information focused on comfort relates more to the individual choice to travel while absolute traveller information enables the traveller to assess whether travel is possible at all. Finally, to be accessed the traveller information needed by older people and people with disabilities need to be implemented. The inertia of the implementation process was explored through conflicts of interest that can help forward barriers in the implementation process. The findings point to there being a verbal problem in policies, legislation and guidelines that leave room for interpretation of the necessity of implementation of measures like traveller information needed by older people and people with disabilities. Finally this thesis carries implications for further research within all three areas that have been researched

Tangible Symbols as an AAC Option for Individuals with Developmental Disabilities: A Systematic Review of Intervention Studies

Roche, L., Sigafoos, J., Lancioni, G. E., O’Reilly, M. F., Green, V. a, Sutherland, D., … Edrisinha, C. D. (2014)

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

Tangible Symbols as an AAC Option for Individuals with Developmental Disabilities: A Systematic Review of Intervention Studies

Roche, L., Sigafoos, J., Lancioni, G. E., O’Reilly, M. F., Green, V. a, Sutherland, D., … Edrisinha, C. D. (2014)

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

Tangible symbols, tangible outcomes

Rowland, C. and P. Schweigert (2000)

A 3-yr study on the use of tangible symbols (i.e., objects and pictures used as symbols) by 41 children (aged 3–18 yrs) with a variety of handicapping conditions was conducted to follow up on an earlier study by the authors (see record 1990-15438-001) that revealed their utility for children who are deafblind. The vast majority of participants learned to use tangible symbols, allowing them to overcome the restrictions imposed by gestural communication. A number of the participants progressed beyond tangible symbols and learned to use abstract symbol systems, including speech. A few of the participants did not learn to use tangible symbols during the time span available for intervention. Data describing the progress of participants are presented. Participants are grouped according to outcome, and the characteristics of each group are discussed in terms of the communication skills of participants as they began intervention. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Taxonomy for child well-being indicators: A framework for the analysis of the well-being of children

Ben-Arieh A, Frønes I (2011)

Recent years have brought a dramatic rise in the number of efforts to measure and monitor the status of children. Yet, despite numerous efforts and reports with 'Child indicators' in the title, the field of social child indication is fragmented and lacking a unifying taxonomy. The more ambitious the analysis and the more elaborate the statistics, the stronger the need for a common language used by all. This article tries to suggest such a taxonomy.

Teachers' and speech-language pathologists' perceptions about a tangible symbols intervention: Efficacy, generalization, and recommendations

Bruce SM, Trief E, Cascella PW. (2011)

Twenty-nine special education teachers (n=21) and speech-language pathologists (n=8) were interviewed about a tangible symbols intervention conducted with 51 children (321 years) with multiple disabilities and visual impairment. The intervention, which took place over a 7-month period, addressed the use of tangible symbols in the context of a structured protocol for implementing the daily schedule. These educators reported that students learned the meaning of symbols, exhibited improved behavior, and learned part or all of the daily routine, among other benefits. Supports and barriers to student learning (later coded as student characteristics or intervention characteristics) were discussed. Interviewees suggested improvements to the intervention and for generalization to the home setting, including labeling in the family's first language. © 2011 International Society for Augmentative and Alternative Communication.

Teaching individuals with profound multiple disabilities to access preferred stimuli with multiple microswitches

Tam GM, Phillips KJ, Mudford OC. (2011)

We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate both microswitches. Five participants showed a higher overall level of responding when both switches activating preferred stimuli were available concurrently. After completion of microswitch training, a choice assessment was conducted in which participants had access to 2 microswitches concurrently, with 1 connected to the most highly preferred stimulus and the other to a least preferred stimulus. Choice making behavior was shown in 3 participants and provided support for the preference assessment results. The results of the 3 remaining participants showed that both the most highly preferred and the least preferred stimuli may serve as reinforcers for microswitch activation responses. © 2011 Elsevier Ltd.

Tecken - Ett verktyg för ökad kommunikation

Tonér Signe (2016)

I en språkutvecklande förskolemiljö ligger fokus på barncentrerad kommunikation där det vardagliga samspelet är grunden. Olika sätt att kommunicera tillåts och uppmuntras. Barn ges möjlighet att använda alla sinnen – kroppsspråk, minspel, röstläge, intonation, beröring, blickkontakt och tecken.

Boken handlar om hur användandet av TAKK stärker kommunikationen i förskolan. TAKK innebär att låna tecken från det svenska teckenspråket och använda dessa tecken som ett alternativ och ett komplement i det kommunikativa samspelet. De viktigaste orden i meningen förstärks med tecken samtidigt som vi talar.

Författaren ger inspiration och konkreta förslag för att komma i gång att arbeta med TAKK i förskolegruppen.

Teen Club: a nursing intervention for reducing risk-taking behavior and improving well-being in female African American adolescents

Tuttle J, Bidwell-Cerone S, Campbell-Heider N, Richeson G, Collins S. (2000)

This article describes a nursing intervention called Teen Club that was designed to reduce risk-taking behavior and improve well-being in female African American adolescents. Participants were referred to Teen Club by their nurse practitioners, physicians, and a community health nurse who were working at an urban neighborhood health center's teen clinic. Referrals were based on factors such as parental substance abuse, lack of social and family support, and other characteristics thought to increase vulnerability to risk-taking behavior. The 2-year intervention included weekly group meetings co-led by a European American female community health nurse and a Latino American male community worker, supplemented by case management and home visits by both these persons. Findings from a retrospective group interview conducted with 11 of the 12 original participants are presented. This is the first step in a series of pilot studies designed to refine the Teen Club intervention in anticipation of a future prospective, randomized investigation of this health promotion and disease prevention model of nursing care.

Teen Club: a nursing intervention for reducing risk-taking behavior and improving well-being in female African American adolescents.

Tuttle J, Bidwell-Cerone S, Campbell-Heider N, Richeson G, Collins S. (2000)

This article describes a nursing intervention called Teen Club that was designed to reduce risk-taking behavior and improve well-being in female African American adolescents. Participants were referred to Teen Club by their nurse practitioners, physicians, and a community health nurse who were working at an urban neighborhood health center's teen clinic. Referrals were based on factors such as parental substance abuse, lack of social and family support, and other characteristics thought to increase vulnerability to risk-taking behavior. The 2-year intervention included weekly group meetings co-led by a European American female community health nurse and a Latino American male community worker, supplemented by case management and home visits by both these persons. Findings from a retrospective group interview conducted with 11 of the 12 original participants are presented. This is the first step in a series of pilot studies designed to refine the Teen Club intervention in anticipation of a future prospective, randomized investigation of this health promotion and disease prevention model of nursing care.

Teen dating violence:co-occurence with other victimizations in the national survey of children's exposure to violence (NatSCEV)

Hamby, S., Finkelhor, D., & Turner, H. (2012)

Objective: To examine the co-occurrence of physical teen dating violence (TDV) with other forms of victimization. Method: The sample includes 1,680 youth aged 12 to 17 from the National Survey of Children's Exposure to Violence (NatSCEV), a nationally representative telephone survey of victimization experiences. Results: Every victim of physical TDV (100%) reported at least one other type of victimization. Physical TDV is very closely associated with several other forms of victimization in this sample, with adjusted odds ratio ranging from 1.48 to 17.13. The lifetime rate of TDV was 6.4% for all youth, but TDV rates reached 17% for youth who had been physically abused by a caregiver, 25% for youth who had been raped, and 50% for youth (<16 years) who had experienced statutory rape or sexual misconduct by a partner more than 5 years older. Victims of TDV reported, on average, twice as many other types of victimizations as those with no history of TDV. Conclusions: These data indicate that physical TDV is especially closely associated with some forms of child maltreatment, sexual victimization, and polyvictimization. Universal dating violence prevention programs designed for youth who have not yet, or just recently, started dating will typically include a large number of youth who have already been victimized by other forms of violence. Prevention curricula may be more effective if they address the needs of victimized youth, for example, by teaching skills for coping with prior victimization experiences. (PsycINFO Database Record (c) 2013 APA, all rights reserved)

Teknik för äldre II [Elektronisk resurs] : slutrapport

Dahlberg, R. (2013)

Teknik för äldre är ett regeringsuppdrag som samordnats av Hjälpmedelsinstitutet. Det har verkat sedan 2007 med en budget om 22 miljoner kronor årligen. Teknik för äldre har stöttat utvecklingen av bra produkter och tjänster som underlättar vardagen och boendet för äldre och anhöriga. Företag, organisationer och kommuner har kunnat ansöka om ekonomiskt stöd för att driva utvecklingsprojekt. 100 projekt har fått stöd inom Teknik för äldre I (2007-2009) och 61 projekt inom teknik för äldre II (2010-2012). Bidrag om sex miljoner kronor vardera har lämnats till kommunala försöksverksamheter i Göteborgs stad, Norrköpings kommun och Västerås stad. Inom Teknik för äldre II har projekt prioriterats som bidragit till tillgängligt boende, bättre stöd till anhöriga och utveckling av äldreomsorgen med hjälp av välfärdsteknologi. Informations- och kommunikationsinsatser har också varit i fokus.

Teknikstöd för yrkesverksamma anhöriga – resultat från utvärdering av tre projekt inom programmet Teknik för äldre II

Stefan Andersson, Lennart Magnusson, Elizabeth Hanson (2012)

Nationellt kompetenscentrum anhöriga fick i uppdrag av Hjälpmedelsinstitutet att under 2012 utvärdera tre projekt inom programmet, "Teknik för äldre II" som fokuserar på tekniskt stöd till anhöriga "Mitt i livet" som kombinerar förvärvsarbete med anhörigomsorg. Det första projektet, "Teknikstöd – ökad social interaktion mellan anhöriga mitt i livet", i Alingsås kommun implementerade det internetbaserade IT systemet "Gapet" för yrkesverksamma anhöriga. Det andra projektet, "Modell för virtuellt anhörigstöd" i Gävle kommun, utvecklade en modell och struktur för ett enhetligt virtuellt anhörigstöd som riktade sig till yrkesverksamma anhöriga vilket inkluderade den IT-baserade stödtjänsten "Anhörigstödsportalen". Det tredje projektet, "Teknikstöd för yrkesverksamma anhöriga – en behovsstudie, fokuserade på att utföra en inventering av yrkesverksamma anhörigas behov av ny teknik, utveckla en modell för teknikstöd riktat till yrkesverksamma anhöriga samt hitta vägar för att sprida kunskap för att öka målgruppens möjlighet att nås av teknikstöd. Detta område är särskilt viktigt därför att det i nuläget finns få stödtjänster, i Sverige men även internationellt, som är speciellt anpassade till yrkesverksamma anhöriga som hjälper, stödjer och/eller vårdar en äldre närstående. Många yrkesverksamma anhöriga uttrycker att de vill hjälpa sin förälder/sina föräldrar, men att det är svårt att uppnå en balansgång mellan arbetsliv och familjeliv samtidigt som man hjälper, stödjer och/eller vårdar en äldre närstående. Det är inte ovanligt att egen tid för avkoppling och välbefinnande blir alltmer sällan och prioriteras bort. Som en följd av detta upplever de yrkesverksamma anhöriga ofta stress för att de inte räcker till och ständigt behöver bolla mellan olika sfärer av sina liv. Den senaste statistiken från Socialstyrelsen visar att närmare 100 000 anhöriga har behövt minska sin arbetstid eller sluta arbeta pååtta procent män. Yrkesverksamma anhörigas behov kan sammanfattas med information, rådgivning och/eller utbildning/ träning, praktiskt samt känslomässigt stöd som är flexibelt och passar de egna rutinerna och den egna situationen. Mot denna bakgrund, utvecklades och diskuterades en utvärderingsplan med projektledarna tillsammans med den övergripande koordinatorn för initiativet "Teknik för Äldre II" vid det första gemensamma projektmötet och utvärderingen var en återkommande nyckelfråga vid efterföljande gemensamma projektmöten som hölls under året. Utvärderingen av projekt 1 och 2 genomfördes under hösten 2012 med en liknande utformning för båda projekten där en kvalitativ utvärdering genomfördes med hjälp av fokusgruppsintervjuer och individuella intervjuer och en kvantitativ utvärdering utfördes med hjälp av ett standardiserat frågeformulär om användbarhet. Utvärderingen av projekt 3 genomfördes kontinuerligt från starten till slutet av projektet. Detta berodde på att projektet var en behovsstudie som omfattade anhörigvårdare i en kontinuerlig utvecklingsprocess vilket betyder att det var olämpligt att genomföra en utvärdering under en specifik period vilket var fallet i de två första projekten. Resultaten från utvärderingarna av de första två projekten visar att teknikstöd har en stor potential avseende yrkesverksamma anhöriga då det erbjuder ett flexibelt sätt för anhöriga att få tillgång till information och en möjlighet för anhöriga att kunna utbyta erfarenheter med andra i samma situation och själva skapa stödnätverk. På samma gång erbjuder teknikstöd personalen att arbeta på ett systematiskt sätt med stöd till anhöriga. Men, för att teknikstöd ska användas av fler anhörigvårdare och för att det ska bli mer allmänt accepterat av personalen behövs det grundläggande datorutbildning för både anhöriga och vård- och omsorgspersonal samt kontinuerlig tillgång till handledning och stöd i användningen. Resultat som härrör från en utvärdering från behovsstudien (projekt 3) visar att utbudet av kreativa och sekventiella metoder som användes under utvecklingsprocessen möjliggjorde en genuin brukarmedverkan av yrkesverksamma anhöriga så att deras röster blev hörda gällande teknikstöd. Samtidigt kan dessa innovativa metoder bilda en användbar modell för vård- och omsorgs personal gällande hur anhöriga kan nås av stöd genom produkter, tjänster och ny teknik.

Telecare and older people: Who cares where?

Milligan C, Roberts C, Mort M. (2011)

'Telecare solutions' are seen as a potential means of addressing the future care needs of ageing societies in Western economies. The development of these remote care systems runs in parallel with policies aimed at 'ageing in place'; and is targeted at supporting the perceived care needs of frail older people within the home. Drawing on ethnographic and deliberative panel data from European Community funded research, we consider how these developments contribute to a reshaping of the place and experience of care for older people. We do so by addressing the ways in which remote care systems can, firstly, act to change the experience of home; and secondly, re-order the place of care-work and responsibilities to care as new actors become enrolled within the care network and existing care-givers take on differing roles and responsibilities. Finally, we consider how this paper contributes to conceptual debates around institution and extitution -- that is, the de-territorialisation of the physical structure of the institution and its re-manifestation through new spaces and times that seek to end interior and exterior distinctions.

Telecare for Older People: Promoting Independence, Participation, and Identity

Bowes, A. and G. McColgan (2013)

Drawing on interviews with 76 older people (aged 60 years and older) receiving telecare services at home and in housing with care and 16 family caregivers in West Lothian, Scotland, the authors consider how far telecare can support older people's citizenship goals of independence, participation, and identity. They conclude that although these goals are to some extent supported by telecare, they are also supported by the model of care being applied and limited by aspects of the wider environment, such as ageism. The authors argue that in every case, contextual factors beyond the intrinsic capacities of a technological system and beyond the models of care developed and promoted by a service delivery organization must be explored if the impact of telecare is to be fully understood. Thus, the human use of technology and its moral context are critical to its success or limitation.

Telephone Group Intervention for Older Stroke Caregivers

Hartke RJ, King RB. (2003)

Purpose: This study evaluated the effectiveness of telephone groups for older, spousal caregivers of stroke survivors. Method: The 88 caregivers were mostly white females who were 70 years old on average and who had been providing care for an average of 3 years. Participants were randomized to treatment or control conditions, followed for 6 months, and assessed for depression, burden, loneliness, stress, and competence. Treatment participants engaged in an eight-session psychoeducational telephone group. Results: Treatment participants showed decreased stress over time but were not significantly different from control participants in the amount of change in stress. Control participants showed a significant increase in burden during the study; treatment participants showed a significant increase in competence.

Terapi som anhörigstöd : fördjupat anhörigstöd : stöd till anhöriga på Östermalm vars närstående flyttat till vård och omsorgsboende. Rapport 2012:6.

Norman, E., & Hjalmarson, E. (2012)

För att stödja anhöriga med behov av extra stöd i samband med en närståendes
flytt till äldreboenden erbjöd Östermalms stadsdelsförvaltning under 2011 anhörigstöd
i form av gruppsamtal, så kallat fördjupat anhörigstöd. Målet med det
fördjupade anhörigstödet var att stödja anhöriga som gått igenom den svåra
processen att fatta beslutet om närståendes flytt. En terapeut ledde sammankomsterna
och stadsdelsförvaltningens anhörigkonsulent var behjälplig i detta arbete.
Stiftelsen Äldrecentrum fick i uppdrag av Östermalms stadsdelsförvaltning att
göra en deskriptiv studie av deltagarnas erfarenheter av att vara med i pilotprojektet
med fördjupat anhörigstöd. Syftet var att beskriva vad det fördjupade
anhörigstödet innebär samt att redogöra för deltagarnas erfarenheter. De fem
anhöriga, samtliga kvinnor, som deltog i det fördjupade anhörigstödet intervjuades.
Intervjuer genomfördes även med ledarna för gruppsammankomsterna.
Ett fördjupat anhörigstöd är terapi, där det handlar om att få verktyg för att
kanske välja en annan väg och att gå vidare. Man berör tidigare upplevelser i livet
och kopplar dessa till den anhöriges nuvarande situation. I ett fördjupat anhörigstöd
får den anhörige hjälp att bearbeta sin situation, vilket möjliggör för deltagarna
att komma ur sin kris.
Inom ramen för det fördjupade anhörigstödet genomfördes totalt tio gruppsammankomster.
Deltagarnas erfarenheter av sammankomsterna visade bland
annat att:
 Samtliga deltagare var mycket nöjda med det fördjupade anhörigstödet
Träffarna beskrevs som innehållsrika och intensiva.
 Deltagarna lyfte fram det positiva med sammankomsterna dels den goda
sammanhållningen i gruppen dels ledarnas engagemang och stöd.
 Tre av deltagarna ansåg att de hade fått ut det de hoppades på av det
fördjupade anhörigstödet, en visste inte och en deltagare sa att hon tyckte att
det var positivt att gå dit och att hon hade mått bra i stunden.
När det fördjupade anhörigstödet avslutades erbjöds deltagarna att fortsätta sina
sammankomster själva. Samtliga deltagare har också möjlighet till fortsatt kontakt
med anhörigkonsulenten.
Möjligheten för anhöriga att få hjälp att bearbeta sorg och förlust behöver uppmärksammas
i större utsträckning i det anhörigstöd som ges. Pilotprojektet
"Fördjupat anhörigstöd" är en intressant stödform som visar att behov finns av
stöd till anhöriga i en svår och utsatt situation. Stödformen behöver prövas och utvecklas
ytterligare. Ett område att få mer kunskap om är hur stort behovet av
terapi är för att stödja anhöriga. Intressant vore att prova olika terapiformer. En
annan intressant utveckling skulle vara att genomföra ett fördjupat anhörigstöd i
samverkan mellan kommun och landsting.

That mr. Alzheimer… you never know what he's up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful

Lövenmark A., Summer Meranius M., Hammar LM. (2018)

The spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses' experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.

The age-dependent decline of attention deficit hyperactivity disorder: a meta-analysis of follow-up studies

Faraone, S., Biederman, J., & Mick, E. (2005)

BACKGROUND:
This study examined the persistence of attention deficit hyperactivity disorder (ADHD) into adulthood.
METHOD:
We analyzed data from published follow-up studies of ADHD. To be included in the analysis, these additional studies had to meet the following criteria: the study included a control group and it was clear from the methods if the diagnosis of ADHD included subjects who did not meet full criteria but showed residual and impairing signs of the disorder. We used a meta-analysis regression model to separately assess the syndromatic and symptomatic persistence of ADHD.
RESULTS:
When we define only those meeting full criteria for ADHD as having 'persistent ADHD', the rate of persistence is low, approximately 15% at age 25 years. But when we include cases consistent with DSM-IV's definition of ADHD in partial remission, the rate of persistence is much higher, approximately 65%.
CONCLUSIONS:
Our results show that estimates of ADHD's persistence rely heavily on how one defines persistence. Yet, regardless of definition, our analyses show that evidence for ADHD lessens with age. More work is needed to determine if this reflects true remission of ADHD symptoms or is due to the developmental insensitivity of diagnostic criteria for the disorder.

The AML: A quick-screening device for early identification of school maladaptation

Cowen EL, Dorr D, Clarfield S, Kreling B, McWilliams SA, Pokracki F, et al. (1973)

The AML, an l 1-item, 3-factor, quick-screening device for early school maladaptation is described. Test reliability data are reported as well as itemitem and item-scale correlations and factor analytic findings. Norms for Kindergarten-3rd grade are presented, and parametric studies are reported for the variables: sex, grade, and "repeat-in-grade" status. Five additional substantive studies, testifying to the concurrent and empirical validity of the scale, are summarized. Limitations in using the AML are considered. Given its brevity and objectivity, its greatest potentials are in mass, quick-screening of early school dysfunction.

The applicability of a functional approach to social competence in preschool children in need of special support

Lillvist A. (2010)

The overall aim of the thesis, with four empirical studies, was to test the applicability of a functional approach in investigating social competence of children in need of special support within the preschool context. The main theoretical framework was systems theory. Study I and II investigated preschool teachers' definitions of children in need of special support and social competence respectively. Study III was a prevalence study investigating the number of children in need of special support based on traditional disability categories and functional difficulties. In study IV the social competence of children perceived to be in need of special support based on traditional categories and functional difficulties was compared using an observational method. The results in study I showed that teachers adopt either a child perspective or an organizational perspective in defining children in need of special support. The child perspective was related to a greater number of children in need of special support in the preschools, indicating that in preschools with several children in need of special support, teachers are more prone on seeing the needs of individual children, as opposed to the needs of the organisation. Study II found that teachers define social competence in young children in terms of intrapersonal skills, or as interpersonal relations. Study III found that the majority of children in need of special support are undiagnosed children with functional difficulties related to speech- and language and peer interaction. Study IV found similar profiles of social competence between diagnosed children and undiagnosed children perceived to be in need of special support. Overall, the results yielded support for adopting a functional approach in studying the social competence of children in need of special support.

The association between positive-negative reactions of informal caregivers of people with dementia and health outcomes in eight European countries: a cross-sectional study

Alvira MC, Risco E, Cabrera E, Farré M, Rahm Hallberg I, Bleijlevens MH, Meyer G, Koskenniemi J, Soto ME, Zabalegui A (2015)

AIM: To describe the associations between positive and negative reactions of
informal caregivers of people with dementia and health outcomes across eight
European Countries.
BACKGROUND: Caring for someone with dementia may have implications for the
caregiver's own health and for the care recipient. These consequences could be
associated with caregivers' reactions to the process of care.
DESIGN: Association study based on cross-sectional data.
METHODS: Participants were people with dementia and their informal caregivers
living at home or in long-term care institutions. Data were collected between
November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions
of self-esteem, lack of family support, financial problems, disrupted schedule
and health problems) and associations were sought with informal caregiver burden,
quality of life and psychological well-being and with dementia sufferers'
neuropsychiatric symptoms, comorbidity and dependency in activities of daily
living using correlation coefficients.
RESULTS: Data from 2014 participants were used. Variability across countries was
noted, as well as differences between care at home and in long-term care
institutions. In general, self-esteem and lack of family support correlated with
caregiver burden and psychological well-being. Associations were also found
between disrupted schedule and caregiver burden, psychological well-being and
quality of life. Health problems were clearly associated with caregiver burden,
psychological well-being and quality of life.
CONCLUSION: Study results support links between the reactions of informal
caregivers of people with dementia and health outcomes. These may have
implications in terms of how services are addressed.

The associations between health risk behaviours and suicidal ideation and attempts in a nationally representative sample of young adolescents

Afifi TO, Cox BJ, Katz LY. (2007)

OBJECTIVE:
To examine associations between health risk behaviours and suicidal ideation and attempts in Canadian adolescents aged 12 to 13 years. Young adolescents think about and attempt suicide. However, most existing research on suicide has been conducted on individuals aged 15 years and older.
METHOD:
The present study examined a nationally representative Canadian sample of adolescents aged 12 to 13 years (n=2090). Health risk behaviours included disruptive (shoplifting, physical fighting, damaging property, fighting with a weapon, carrying a knife, and gambling), sexual (petting below the waist and sexual intercourse), and substance use behaviours (smoking cigarettes, consuming alcohol, marijuana or hash, and glue or solvents). Unadjusted and adjusted (for all significant health risk behaviour and psychiatric symptoms) models were tested.
RESULTS:
All health risk behaviours were common among male and female adolescents. In unadjusted models, almost all health risk behaviours were associated with suicidal ideation and attempts among adolescent boys. In adjusted models, only damaging property, sexual intercourse, and smoking cigarettes remained statistically associated with suicidal ideation, while smoking cigarettes and using marijuana or hash remained statistically associated with suicide attempts among adolescent boys. All health risk behaviours were statistically associated with suicidal ideation and attempts among female adolescents in unadjusted models. In adjusted models, only carrying a knife remained statistically associated with suicidal ideation, while shoplifting and gambling remained statistically associated with suicide attempts among adolescent girls.
CONCLUSIONS:
Health risk behaviours among young adolescents are associated with suicidal ideation and attempts among young adolescents. Recognizing health risk behaviours among young adolescents may be one means of understanding who among them is at increased risk of suicidality.

The AUDIT alcohol consumption questions (AUDIT-C) - An effective brief screening test for problem drinking.

Bush, K., Kivlahan, DR., McDonell, MB., Fihn, SD., & Bradley, KA. (1998)

Abstract
OBJECTIVE:
To evaluate the 3 alcohol consumption questions from the Alcohol Use Disorders Identification Test (AUDIT-C) as a brief screening test for heavy drinking and/or active alcohol abuse or dependence.
METHODS:
Patients from 3 Veterans Affairs general medical clinics were mailed questionnaires. A random, weighted sample of Health History Questionnaire respondents, who had 5 or more drinks over the past year, were eligible for telephone interviews (N = 447). Heavy drinkers were oversampled 2:1. Patients were excluded if they could not be contacted by telephone, were too ill for interviews, or were female (n = 54). Areas under receiver operating characteristic curves (AUROCs) were used to compare mailed alcohol screening questionnaires (AUDIT-C and full AUDIT) with 3 comparison standards based on telephone interviews: (1) past year heavy drinking (>14 drinks/week or > or =5 drinks/ occasion); (2) active alcohol abuse or dependence according to the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition, criteria; and (3) either.
RESULTS:
Of 393 eligible patients, 243 (62%) completed AUDIT-C and interviews. For detecting heavy drinking, AUDIT-C had a higher AUROC than the full AUDIT (0.891 vs 0.881; P = .03). Although the full AUDIT performed better than AUDIT-C for detecting active alcohol abuse or dependence (0.811 vs 0.786; P<.001), the 2 questionnaires performed similarly for detecting heavy drinking and/or active abuse or dependence (0.880 vs 0.881).
CONCLUSIONS:
Three questions about alcohol consumption (AUDIT-C) appear to be a practical, valid primary care screening test for heavy drinking and/or active alcohol abuse or dependence.

The benefits of e-health support for older family caregivers in rural areas.

Blusi M, Dalin R, Jong M. (2014)

We conducted a pragmatic, mixed methods study comparing rural family caregivers
receiving e-health caregiver support (n = 35) with a control group (n = 21)
receiving conventional, non-e-health, caregiver support. After 18 months, the
benefits of support were evaluated using the Care Effectiveness Scale (40-items
exploring the domains of preparedness, enrichment and predictability). In all
domains the e-health group scored significantly higher than the control group.
The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale
0-10. In addition, semi structured interviews were conducted with a sub-sample of
the caregivers. For the e-health group flexibility, availability and being able
to individualise the support were essential factors. All caregivers in the
control group found conventional support to be beneficial, but also stressed
unmet needs related to the conventional support being standardised and
non-flexible. The study suggests that providers of caregiver support should offer
e-health support as an alternative to conventional caregiver support, as it can
be more beneficial to family caregivers.

The Brief Symptom Inventory: an introductory report

Derogatis, L. R. and N. Melisaratos (1983)

This is an introductory report for the Brief Symptom Inventory (BSI), a brief psychological self-report symptom scale. The BSI was developed from its longer parent instrument, the SCL-90-R, and psychometric evaluation reveals it to be an acceptable short alternative to the complete scale. Both test--retest and internal consistency reliabilities are shown to be very good for the primary symptom dimensions of the BSI, and its correlations with the comparable dimensions of the SCL-90-R are quite high. In terms of validation, high convergence between BSI scales and like dimensions of the MMPI provide good evidence of convergent validity, and factor analytic studies of the internal structure of the scale contribute evidence of construct validity. Several criterion-oriented validity studies have also been completed with this instrument.

The burden of coronary, cerebrovascular and peripheral arterial disease

Bakhai A. (2004)

Atherothrombosis is a potentially life-threatening generalised disease process that affects the coronary, cerebral and peripheral vasculature, with clinical manifestations including myocardial infarction, ischaemic stroke and peripheral arterial disease. Atherothrombosis represents a massive clinical and economic burden to healthcare, annually accounting for at least 22% of all deaths globally. Moreover, the prevalence of atherothrombotic disease is increasing as a result of increased longevity resulting in a larger cohort of older individuals. Stroke in particular is a major burden, and is the primary cause of adult disability, the second most important cause of dementia, and the third leading cause of death in industrialised countries. Atherothrombosis is also associated with a poor prognosis, significantly reducing life expectancy in the 60-year-old patient by 8–12 years depending on the vascular event. Moreover, this already shortened life expectancy is further and substantially reduced in patients with more than one atherothrombotic event. The economic burden of atherothrombosis is significant, particularly given its increasing prevalence, with the United States spending over US$300 billion on it. There is thus a need for effective intervention to prevent or reduce mortality and morbidity. Evidence-based medicine using economics, clinical trials data, outcomes research, epidemiology and risk stratification are necessary to target treatment effectively to patients at greatest risk, in an attempt to reduce the burden of atherothrombotic disease.

The burden of long-term care: how Italian family care-givers become employers

Degiuli, F. (2010)

In recent years in Italy, population ageing, rising female labour-market participation, and the restructuring of the welfare state have combined to create increased demand for long-term care services for frail and dependent older people. The rising demand has increasingly been met by immigrant women of different nationalities, and to a lesser extent immigrant men, who are hired to provide individualised care in people's own homes and other private settings. While there have been many studies of this growing phenomenon, very little attention has been paid to the reasons that bring family care-givers to choose this care-support option. To begin to fill the gap, this paper reports the finding of a qualitative study of 26 family members who were caring for a disabled elder. Semi-structured interviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responses indicate that they did not choose immigrant home eldercare assistants solely for economic reasons but also to be consistent with cultural, moral and traditional understandings of family responsibilities and care. They also provide valuable findings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection for the free-market and a desire to bypass the state, the majority of the respondents advocated a stronger role of the welfare state in helping people cope with the increased burden of long-term care.

The burden of long-term care: how Italian family care-givers become employers

Degiuli, F (2010)

In recent years in Italy, population ageing, rising female labour-market partici-pation, and the restructuring of the welfare state have combined to create in-creased demand for long-term care services for frail and dependent older people.The rising demand has increasingly been met by immigrant women of differentnationalities, and to a lesser extent immigrant men, who are hired to provideindividualised care in people's own homes and other private settings. While therehave been many studies of this growing phenomenon, very little attention hasbeen paid to the reasons that bring family care-givers to choose this care-supportoption. To begin to fill the gap, this paper reports the finding of a qualitative studyof 26 family members who were caring for a disabled elder. Semi-structuredinterviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responsesindicate that they did not choose immigrant home eldercare assistants solely foreconomic reasons but also to be consistent with cultural, moral and traditionalunderstandings of family responsibilities and care. They also provide valuablefindings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection forthe free-market and a desire to bypass the state, the majority of the respondentsadvocated a stronger role of the welfare state in helping people cope with theincreased burden of long-term care.

The Caregiver-Provider Relationship Assessment: Measuring Family Caregivers' Perceptions of Relationship Quality With Health Care Providers

Moore, C. D. (2012)

This article summarizes the development of the caregiver-provider relationship assessment (CPRA) designed to measure family caregivers' perceptions of relationship quality with health care providers. Using an online sample of family caregivers (n = 156), the patient reactions assessment (PRA) was adapted for use with family caregivers and subjected to principal component and reliability analyses. Analyses indicate that the CPRA factor structure is analogous to the original PRA scale, and Cronbach's BFGR181|END for the three CPRA subscales range from .85 to .91. The tool can be used by clinicians and researchers in efforts to help family caregivers become more effective communicators in health care contexts.

The caregiving phenomenon and caregiver participation in dementia.

Garcia-Ptacek S, Dahlrup B, Edlund AK, Wijk H, Eriksdotter M. (2019)

Abstract
BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia

The cast-6: development of a short-form of the Children of Alcoholics Screening Test

Hodgins, DC., Maticka-Tyndale, E., el-Guebaly, N., & West, M. (1993)

The 30-item Children of Alcoholics Screening Test (CAST) is shortened to a 6-item scale (CAST-6) using Principal Components Analysis of CAST responses for three distinct samples: outpatient substance abusers, outpatient psychiatric patients, and medical students. The face validity, internal consistency, and discriminatory ability of the CAST-6 are examined. The CAST-6 is judged to compare favorably with the full CAST and to provide a more efficient way to identify adult children of alcoholics.

The challenge model. Working with strengths in children of substance abusing parents

Wolin S, Wolin S. (1996)

Children of alcoholics are commonly pictured as destined to become alcoholics themselves and to develop psychological problems. Research on children of alcoholics, however, has not strongly supported this impression. Rather, there is good reason to believe that children of alcoholics develop a checkerboard of strengths and weaknesses. Although the weaknesses are adequately explained by a traditional risk paradigm that we have called the damage model, the strengths are overlooked. The challenge model and its related vocabulary of strengths extends the damage model by including the possibility that children of alcoholics and other children of hardship can be resilient as well as vulnerable. The model offers a developmental vocabulary of resilience. The challenge model implies that psychiatrists should not launch exclusively a search for pathology in children of alcoholics, but should ask questions of patients more along the line of 'How is your struggle going?'

The child's worries about the mother's breast cancer: sources of distress in school-age children

Zahlis, E. H. (2001)

PURPOSE/OBJECTIVES: To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer. DESIGN: Descriptive, qualitative study. SETTING: Private family homes. SAMPLE: Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer. METHODS: Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer. MAIN RESEARCH VARIABLES: Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses. FINDINGS: The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer. CONCLUSIONS: Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.IMPLICATIONS FOR NURSING PRACTICE: Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.

The Clinical Effects of Massive Psychic Trauma in families of holocaust survivors

Davidson, S. (1980)

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

The Clinical Effects of Massive Psychic Trauma in families of holocaust survivors

Davidson, S. (1980)

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

The ComAlong communication boards: parents' use and experiences of aided language stimulation

Jonsson, A., Kristoffersson, L., Ferm, U., & Thunberg, G. (2011)

This study evaluated parents' use and experiences of the ComAlong communication boards, which were provided to them during a parental course on communication development, responsive strategies, and augmentative and alternative communication (AAC). Quantitative and qualitative data was collected through a survey of 65 parents and an in-depth case study of four of the parents. Questionnaires, interviews, logbooks, and video recordings showed that parents used the ComAlong boards and experienced an increased understanding of augmentative and alternative communication. Most parents reported that their children showed an interest in the boards and that in some cases started to use the boards functionally in communication. Parents' views, in terms of gains and difficulties of using graphic communication at home, are discussed.

The ComAlong communication boards: parents' use and experiences of aided language stimulation

Jonsson, A., Kristoffersson, L., Ferm, U., & Thunberg, G. (2011)

This study evaluated parents' use and experiences of the ComAlong communication boards, which were provided to them during a parental course on communication development, responsive strategies, and augmentative and alternative communication (AAC). Quantitative and qualitative data was collected through a survey of 65 parents and an in-depth case study of four of the parents. Questionnaires, interviews, logbooks, and video recordings showed that parents used the ComAlong boards and experienced an increased understanding of augmentative and alternative communication. Most parents reported that their children showed an interest in the boards and that in some cases started to use the boards functionally in communication. Parents' views, in terms of gains and difficulties of using graphic communication at home, are discussed.

Treating childhood traumatic grief: a pilot study

Cohen, J.A., Mannarino, A.P. & Knudsen, K. (2004)

Abstract
OBJECTIVE:
To examine the potential efficacy and specific timing of treatment response of individual child and parent trauma-focused cognitive-behavioral therapy for childhood traumatic grief (CTG), a condition in which trauma symptoms impinge on the child's ability to successfully address the normal tasks of grieving.
METHOD:
Twenty-two children and their primary caretakers received a manual-based 16-week treatment with sequential trauma- and grief-focused interventions.
RESULTS:
Children experienced significant improvements in CTG, posttraumatic stress disorder (PTSD), depressive, anxiety, and behavioral problems, with PTSD symptoms improving only during the trauma-focused treatment components and CTG improving during both trauma- and grief-focused components. Participating parents also experienced significant improvement in PTSD and depressive symptoms.
CONCLUSIONS:
The timing of improvements in CTG and PTSD symptoms lends support to providing sequential trauma- and grief-focused interventions and to the concept that CTG is related to but distinct from PTSD. The results also suggest the benefit of individual treatment for CTG and for including parents in the treatment of CTG. Randomized, controlled trials are needed to further test the efficacy of this treatment model.

Treating paternal alcoholism with learning sobriety together: Effects on adolescents versus preadolescents

Kelley ML, Fals-Stewart W. (2007)

The purpose of this study was to determine whether Learning Sobriety Together, a treatment for substance abuse that combines behavioral couples therapy and individual counseling, had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus preadolescent siblings living in homes with their alcoholic fathers (N = 131) and their non-substance-abusing mothers. During a 17-month assessment period, the association between parents' functioning (i.e., fathers' drinking as determined by percentage of days abstinent and parents' dyadic adjustment) and children's adjustment (as rated by mothers, fathers, and children's teachers) was stronger for preadolescents than for their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drinking and improve couple functioning may serve as an important preventative intervention for preadolescents in these homes, whereas adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

Treating paternal drug abuse using Learning Sobriety Together: Effects on adolescents versus children

Kelley ML, Fals-Stewart W. (2008)

The focus of this study was whether couples-based treatment for substance abuse had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus child siblings living in their homes. Couples took part in a couples-based treatment for substance abuse that combines Behavioral Couples Therapy and individual counseling (i.e., Learning Sobriety Together). During a 17-month assessment period, the relationship between parents' functioning (i.e., fathers' drug use as determined by percent days abstinent and parents' dyadic adjustment) as rated by mothers, fathers, and children's teachers and internalizing behavior (as rated by mothers' only) was stronger for children than their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drug use and improve couple functioning may reduce internalizing and externalizing symptoms for children in their homes; however, adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

Keywords: Children of drug abusers, Couples therapy

Treating trauma and traumatic grief in children and adolescents

Cohen, J. A., Mannarino, A. P., & Deblinger, E. (2006)

This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.

Treatment Dropout and Missed Appointments Among Adults With Attention-Deficit/Hyperactivity Disorder

Soendergaard, H. M., Thomsen, P. H., Pedersen, P., Pedersen, E., Poulsen, A. E., Nielsen, J. M., … Soegaard, H. J. (2016)

OBJECTIVE:
Knowledge of factors associated with treatment dropout and missed appointments in adults with attention-deficit/hyperactivity disorder (ADHD) is very limited. On the basis of proposed hypotheses that past behavior patterns are more predictive of current behaviors of treatment dropout and missed appointments than are sociodemographic and clinical characteristics, we examined the associations of sociodemographic variables, clinical variables, risk-taking behavior, educational and occupational instability, and behaviors during mandatory schooling with the primary outcome measures of treatment dropout and missed appointments.

METHOD:
In a naturalistic cohort study of 151 adult outpatients with ADHD initiating assessment in a Danish ADHD unit from September 1, 2010, to September 1, 2011, the Adult ADHD Self-Report Scale v1.1 symptom checklist (ASRS) and a thorough clinical interview were used to assess ADHD according to DSM-IV-TR criteria. Stepwise logistic regression analysis was used to estimate reported associations.

RESULTS:
A total of 27% of patients dropped out of treatment and a total of 42% had ≥ 3 missed appointments during treatment. Mood and anxiety disorders significantly lowered the odds of treatment dropout (odds ratio [OR] = 0.18; 95% confidence interval [CI], 0.05-0.65), whereas having started but not completed 2 or more educational programs apart from mandatory schooling significantly increased the odds of dropout (OR = 3.01; 95% CI, 1.32-6.89). Variables significantly associated with most missed appointments were low educational level (OR = 2.19; 95% CI, 1.12-4.31), 3 or more employments of less than 3 months' duration (OR = 2.86; 95% CI, 1.30-6.28), and having skipped class often/very often during mandatory schooling (OR = 2.65; 95% CI, 1.29-5.43). Additionally, the predominantly inattentive ADHD (ADHD-I) subtype lowered the odds of missed appointments (OR = 0.17; 95% CI, 0.05-0.62).

CONCLUSION:
Our results suggest that past behavior in terms of highest dropout rates in the educational and occupational systems and highest rates of skipping class during mandatory schooling is equally associated with current behavior of treatment dropout and missed appointments as are sociodemographic and clinical factors.

Treatment of Late-Life Depression Alleviates Caregiver Burden

Martire, L. M., Schulz, R., Reynolds, C. F., Karp, J. F., Gildengers, A. G., & Whyte, E. M. (2010)

OBJECTIVES: To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression.

DESIGN: Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone.

SETTING: Primary care and university late-life mental health research clinic.

PARTICIPANTS: Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N=244 dyads).

MEASUREMENTS: Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression.

RESULTS: Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β=−0.22, P=.001) and a trend toward lower general burden (β=−0.08, P=.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76)=4.27, P=.04).

CONCLUSION: Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects.

Treatment of Parenting Behavior With a Psychostimulant – a Case-Study of an Adult With Attention-Deficit Hyperactivity Disorder

Evans, S. W., Vallano, G., & Pelham, W. (1994)

Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Treatment of post-traumatic stress disorder in children using cognitive behavioural writing therapy

Van der Oord, S., Lucassen, S., Van Emmerik, A. & Emmelkamp, P. (2010)

Abstract
OBJECTIVES:
This study evaluated the effectiveness of Cognitive Behavioral Writing Therapy (CBWT) in 23 children (age 8-18 years) in the Netherlands, who experienced a range of single and recurrent traumatic experiences. CBWT uses exposure, cognitive restructuring and social sharing.
METHODS:
At pre-test, post-test and follow-up, post-traumatic stress disorder (PTSD) symptoms, depressive symptoms, trauma-related cognitions and general behavioural problems were assessed.
RESULTS:
At post-test there was a significant reduction of all symptoms, and this effect was maintained at 6 months follow-up. The mean amount of treatment sessions needed was 5.5.
CONCLUSIONS:
This study shows that short-term CBWT is a potentially effective intervention for clinically referred traumatized children. There is now a clear need of establishing the effectiveness of CBWT in a randomized, controlled trial.
PRACTICE IMPLICATION:
This first study indicates CBWT is a promising treatment, which can easily be used in clinical practice.

Treatment outcomes and mediators of parent management training: a one-year follow-up of children with conduct problems

Hagen KA, Ogden T, Bjørnebekk G. (2011)

This effectiveness study presents the results of a 1-year follow-up of a randomized controlled trial of Parent Management Training. Families of 112 Norwegian girls and boys with clinic-level conduct problems participated, and 75 (67%) families were retained at follow-up. Children ranged in age from 4 to 12 at intake (M = 8.44). Families randomized to the control group received an active treatment alternative as would be normally offered by participating agencies. Multi-informant, multisetting outcome measures were collected and results from both intention-to-treat and treatment-on-the-treated analyses are presented. In two separate indirect effects models, assignment to Parent Management Training-the Oregon model predicted greater effective discipline and family cohesion at postassessment, which in turn predicted improvements in several child domains at follow-up.

Trygghetscirkeln för ett reflekterande föräldraskap: COS-P i Sverige – kunskapsspridning och prövning av ett psykoedukativt föräldraprogram

NEANDER, K. & RISHOLM MOTHANDER, P. (2015)

Projektets avsåg att pröva ett anknytningsbaserat föräldrastödsprogram,
Trygghetscirkeln (COS-P), vars mål är att hjälpa föräldrar att nå fördjupad förståelse för
barns behov av känslomässigt stöd från sina föräldrar.
Prövningen av Trygghetscirkeln som komplement till övrig behandling genomfördes på
tre geografiskt spridda behandlingsenheter för familjer med små barn i Sverige. Efter
gruppledarutbildning genomfördes en RCT-studie där 52 föräldrar i åldern 18-44 år
(M=30 år) med barn under 58 månader (M=15 mån) randomiserades till att antingen få
behandling enligt planerad form (TAU), n=24 föräldrar, eller få behandling plus ett
tillskott av 8 ggr Trygghetscirkel i grupp (COS), n=28 föräldrar. Vid baslinjen (T1) fyllde
föräldrarna i självskattningsformulär avseende nivå av egen ångest (STAI), grad av
depressivitet (CES-D), grad av reflekterande förmåga (PRFQ) och nivå av föräldrastress
(SPSQ). Föräldrarna fyllde vidare i en anknytningsdagbok (AD). En diagnostisk DC:0-3R
profil sammanställdes utifrån journaldata, samspelet mellan förälder och barn
bedömdes kvalitativt (EAS) och en semistrukturerad djupintervju om förälderns inre
bild av sig själv och sitt barn (WMCI) värderades. Nya mätningar gjordes därefter vid sex
månader (T2) och 12 månader (T3) efter baslinjemätningen, med undantag för AD, den
diagnostiska profilen och djupintervjun som enbart gjordes vid T1 och T3. Efter
genomförda föräldragrupper utvärderades Trygghetscirkeln med hjälp av särskilda
frågeformulär riktade till föräldrar och till gruppledare. Som avslutning av projektet
gjordes öppna intervjuer dels med personal på respektive behandlingsenhet och dels
med ett bekvämlighetsurval av föräldrar.
Resultaten gav vid handen att både behandlare och föräldrar var mycket nöjda med
Trygghetscirkeln, som var stimulerande, gav en fördjupad kunskap och hjälpte
föräldrarna i sin föräldraroll. I COS-gruppen förändrades samspelskvalitet och framför
allt den inre bilden av föräldrarollen och av barnet signifikant mer än i TAU-gruppen. I
hela gruppen uppmättes över tid sänkt föräldrastress, reduktion av stressfaktorer i
omgivningen, bättre föräldra-barnrelation och mer åldersadekvat socioemotionell
utvecklingsnivå hos barnen. Den skattade nivån av egen psykiska hälsa, eller
självskattad reflekterande förmåga förbättrades emellertid inte i någon av grupperna.
Vid uppföljningen våren 2015 visade det sig att Trygghetscirkeln integrerats som en
väsentlig del i verksamheternas behandlingsutbud.
Rapporten lyfter fram att genomsnittsåldern för barnen i den undersökta gruppen var
låg, vilket ledde till en låg förekomst av individuella barnkliniska symtom. Problemen
var i huvudsak koncentrerade till föräldrafunktionen. Föräldrarna hade i allmänhet en
etablerad behandlingskontakt innan de bjöds in till studien vilket troligen medförde att
upplevelsen av den egna psykiska hälsa redan hade stabiliserats. Däremot förändrades
stress, samspelskvalitet och den inre bilden långsammare, vilket ledde till en mätbar
positiv förändring först vid uppföljningen efter 12 månader. Denna förändring var mer
tydlig hos COS-gruppen än hos TAU-gruppen.
7
Slutsatsen är att Trygghetscirkeln är ett föräldraprogram som uppskattas stort av både
föräldrar och gruppledare. Då Trygghetscirkeln syftar till ökad förståelse för hur det
egna förhållningssättet påverkar föräldrabeteendet, aktualiseras förälderns egna hinder
och svårigheter i mötet med materialet och gruppdiskussionerna. Detta stärker
betydelsen av erfarna gruppledare och att det sammanhang inom vilket
Trygghetscirkeln erbjuds får möjlighet att fungera som en trygg bas. Vi kan inte uttala
oss om Trygghetscirkeln som en generellt preventiv insats till alla föräldrar men vill
rekommendera den för riktade insatser till barn med identifierade risker för psykisk
ohälsa eller utvecklingsavvikelser samt som komplement till annan behandling där
större behov av barnkliniska insatser föreligger.

Tröst – beskriven av långvarigt sjuka barn, föräldrar och en sjuksköterska

Ångström-Brännström, C. (2010)

Akademisk avhandling.

Det övergripande syftet med avhandlingen är att beskriva långvarigt sjuka barns upplevelser av tröst samt vilka och vad som tröstar barn, föräldrar och en sjuksköterska. Avhandlingen omfattar fyra delstudier. Långvarigt sjuka barn, föräldrar och en sjuksköterska har intervjuats och barnen har ritat teckningar.I delstudie I var syftet att undersöka vad barn med långvariga sjukdomar berättar muntligt och i teckningar om sina upplevelser av att bli tröstade. Sju barn i åldern 4-10 år, med olika långvariga sjukdomar, beskrev under intervju sina upplevelser av tröst och ritade teckningar. Intervjuerna analyserades med innehållsanalys, vilket utmynnade i fyra teman: att vara fysiskt nära sin familj, att känna sig trygg och säker, att sjuksköterskor finns till hands för barnen och att barnen finns till hands för sina föräldrar och syskon. Resultatet visar att barnen litade på sjuksköterskors kunskap och yrkeskunnande, vilket var en förutsättning för att kunna känna sig trygg och hemma på sjukhus. Att vara nära sin familj upplevdes än mer betydelsefullt för att uppleva tröst.

I delstudie II var syftet att beskriva föräldrars upplevelser av vad som tröstar dem när deras barn insjuknat i cancersjukdom. Nio föräldrar till barn i åldern 3-9 år, som var inlagda på vårdavdelning och hade genomgått sin första behandling, intervjuades. Innehållsanalys utmynnade i fem teman: att uppleva tröst genom att vara nära sitt barn, att uppleva tröst genom barnets styrka, att uppleva tröst genom att känna sig hemma på vårdavdelningen, att uppleva tröst genom att vara en familj och genom att vara hemma samt att uppleva tröst genom stöd från sociala nätverk. I kommunion, en djup känsla av gemenskap med barnet och personer i sociala nätverk, upplevde föräldrarna en ny vardag som kännetecknades av att känna sig trygg i livet trots alla svårigheter och de upplevde stunder av hopp.

I delstudie III var syftet att beskriva upplevelser av vad som tröstar ett allvarligt sjukt och senare döende barn, berättat av barnet, hans mamma och hans sjuksköterska. Barnet ritade teckningar. Fältanteckningar, teckningar och intervjuer analyserades med innehållsanalys, vilket utmynnade i fyra teman: att uttrycka känslor och bli redo för tröst, att vara i kommunion, att skifta perspektiv och att finna tröst genom att vara hemma. Resultatet visar att tröst för det svårt sjuka, senare döende barnet, innebar att barnet kunde uttrycka sina känslor som barnet ville, att familjen fanns nära och var involverade i omvårdnaden av barnet, att barnet kunde vårdas hemma och att barnet upplevde en förtroendefull relation med sin sjuksköterska.

I delstudie IV var syftet att beskriva vem och vad som tröstar föräldrar, syskon, sjuksköterska och andra personer som tröstade ett svårt sjukt och senare döende barn, beskrivet av mamman och barnets sjuksköterska. Intervjuer från delstudie II analyserades med innehållsanalys och utmynnade i tio teman. Resultatet visar en bild av samverkande nätverk som kan finnas runt ett svårt sjukt barn. Den svåra situationen innebar att barnets familj bar en tung börda, men omgivna av ett tröstande nätverk som de kunde luta sig mot och dela lidande och ansvar med, kunde de finna tröst och trösta varandra.

Resultatet i avhandlingen visar att de långvarigt sjuka barnen och föräldrarna fann tröst i att kunna dela lidande med varandra. Föräldrar och sjuksköterska fann tröst i att kunna dela lidandet och ansvaret med personer i sina sociala nätverk. Modellen om tröst (Norberg m fl, 2001) kunde användas för att ge struktur till diskussionen.

Tröst genom hälsostödjande familjesamtal – Upplevelser och effekter av en familjecentrerad intervention

Dorell, Å. (2016)

Bakgrund: Att ha en sjuk närstående som bor på ett särskilt boende
för äldre påverkar hela familjen. Familjemedlemmarna kan uppleva
känslor av saknad, skuld, maktlöshet och sorg. Det finns därför ett
behov av att utvidga omvårdnaden till att innefatta hela familjen som
ett system för att minska ohälsa hos familjer. Detta kan ske genom
familjecentrerade interventioner. Ett exempel på en familjecentrerad
intervention är hälsostödjande familjesamtal (FamHC). Det är en
vårdhandling med focus på familjens styrkor, resurser och relationer
inom familjen. Det finns begränsad kunskap om dessa
familjeinterventioner i kontexten vård och omsorg av äldre.
Syftet: Syftet med avhandlingen är att ur ett familje- och
sjuksköterskeperspektiv studera upplevelser, responser och effekter
av sjuksköterskeledda hälsostödjande familjesamtal med närstående
som har en familjemedlem boende på ett särskilt boende för äldre.
Metoder: Denna avhandling är baserad på en intervention med
FamHC genomförd vid tre särskilda boenden för äldre i norra Sverige.
Samtalens struktur är tre på varandra följande samtal varannan vecka
med skilda fokus och avslutas med ett avslutande brev. Avhandlingen
består av fyra delstudier. I studie I-II användes semistrukturerade
gruppintervjuer med närstående som analyserades med kvalitativ
innehållsanalys. I studie III användes mixad metod. Kvalitativa
resultat från intervjuer och kvantitativa resultat från instrumenten
SWED-QUAL och FHI, analyserades parallellt samt integrerades
därefter. I Studie IV intervjuades tre sjuksköterskor med
semistrukturerade individuella intervjuer. Sjuksköterskorna skrev
även dagboksanteckningar. Intervjuerna och dagböckerna
analyserades med kvalitativ innehållsanalys.
Resultat: Resultaten från studie I visar att de närstående en månad
efter deltagandet i FamHC upplevde en lindring av sitt dåliga samvete
då de krav som familjerna ställer på sig själva minskat. Vid samtalen
fick de närstående bekräftelse på att de gjorde så gott de kunde.
Genom att dela sina föreställningar med varandra genom berättelser
skapades en ökad förståelse för hela familjens upplevelse av
situationen. Studie II visar att sex månader efter samtalsseriens
avslutande upplevde familjen deltagandet i FamHC som ett delande i
en dialog med en läkande kraft. Delandet upplevdes bekräftande
vilket gjorde att de närstående upplevde samtalen som trösterika.
Studie III visar att de närståendes emotionella välbefinnande hade
förbättrats sex månader efter att ha deltagit i FamHC. Studien visar
på förbättrad kommunikation och relationer samt förbättrat
samarbete inom familjen. Studie IV visar att sjuksköterskorna
upplevde att FamHC var en tillämpbar omvårdnadsåtgärd i arbetet
med familjer. Det gav en förbättrad förståelse av familjens situation
och förbättrade relationen med närstående.
Konklusion: Den övergripande slutsatsen från resultaten i
delstudierna är att genom att delta i FamHC blev familjerna tröstade.
Samtalen skapade en arena för de närstående att berätta samt att
lyssna till varandras berättelser. Det gavs utrymme att gråta och sörja
över sin situation över att ha en sjuk familjemedlem på ett särskilt
boende. Samtalen medförde reviderade föreställningar bland
närstående och sjuksköterskorna samt en ökad förståelse och ett
bättre samarbete inom familjen och en ökad känsla av välbefinnande
hos de närstående. Hälsostödjande familjesamtal kan därmed föreslås
vara ett användbart verktyg för sjuksköterskor i deras arbete med
närstående inom kontexten särskilda boenden för äldre personer.
v
Nyckelord:
Hälsostödjande familjesamtal, Familjecentrerad omvårdnad, FamHC,
Familjeomvårdnad, Omvårdnad, Särskilt boende för äldre.

Tutorial: Teaching communicative rejecting to children with severe disabilities

Sigafoos J, Drasgow E, Reichle J, O'Reilly M, Green VA, Tait K. (2004)

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities

Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K. (2004)

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.

Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities

Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K. (2004)

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.

Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial

Hansson, H., Rundberg, J., Zetterlind, U., Johnsson, KO., & Berglund, M. (2007)

Abstract
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial

Hansson H, Rundberg J, Zetterlind U, Johnsson KO, Berglund M. (2007)

BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

Tänk långsiktigt – En samhällsekonomisk modell för prioriteringar som påverkar barns psykiska hälsa.

Skolverket/ Socialstyrelsen/Statens folkhälsoinstitut (2004)

Psykisk ohälsa är ett allvarligt hälsoproblem bland barn och ungdomar och därmed ett angeläget område för samhällsinsatser. Det mesta av de resurser som samhället satsar på barn och ungdomar ges i form av generella insatser. Mödra- och barnhälsovård, förskoleverksamhet, skola, skolhälsovård, skolbarnsomsorg och ungdomsmottagningar är exempel på vanliga verksamheter. Andra samhällsinsatser (t.ex. insatser inom socialtjänsten och barn- och ungdomspsykiatrin) riktas enbart till barn och ungdomar som på olika sätt far illa eller behöver särskilt stöd. Sådana insatser kallas selektiva.

Även om barns och ungdomars psykiska hälsa och goda uppväxtvillkor är högt prioriterade områden är samhällets resurser begränsade. Det är därför viktigt att tillgängliga resurser används så väl som möjligt, dvs. att man lägger pengarna på insatser som har så bra effekter som möjligt i förhållande till vad de kostar. Syftet med denna rapport är att beskriva vikten av att ha ett sektorsövergripande och långsiktigt perspektiv när man på olika nivåer inom kommuner, landsting och stat ska prioritera mellan insatser som påverkar barns och ungdomars psykiska hälsa.

Barns och ungdomars psykiska hälsa påverkas av såväl individuella egenskaper som av faktorer i uppväxtmiljön. Generella insatser av hög kvalitet kan sannolikt förebygga och minska psykisk ohälsa hos barn och ungdomar. Eftersom de generella insatsernas innehåll, organisation och resurser har betydelse för hur barnen mår påverkar de troligen även omfattningen av de selektiva insatser som en del barn och ungdomar kan komma att behöva under sin uppväxt och längre fram i livet. Det är troligt att det fanns ett samband mellan nedskärningarna inom förskoleverksamheten, skolbarnsomsorgen och skolan under 1990-talet och den samtidiga ökningen av antalet besök inom barn- och ungdomspsykiatrin. Samtidigt kan detta vara ett tecken på att samverkan mellan t.ex. skolan och barn- och ungdomspsykiatrin inte har fungerat tillfredsställande när det gäller att ge förebyggande stöd till barn efter deras behov utifrån olika kompetenser.

Den internationella litteraturgenomgång som gjorts till rapporten visar att det finns ett visst forskningsstöd för att exempelvis föräldrastöd, personal- och lärartäthet i förskolan och skolan, särskilda pedagogiska insatser samt lärarnas kompetens har betydelse för barns och ungdomars skolprestationer och psykiska hälsa. Det bör understrykas att detta inte innebär att man säkert vet att övriga insatser saknar effekt.

Det saknas i stor utsträckning svensk forskning om effekter av generella insatser för barn och ungdomar. Bristen på relevanta studier medför svårigheter när man ska utvärdera olika insatsers samhällsekonomiska konsekvenser. Mot bakgrund av hur stor betydelse de generella verksamheterna har för barns och ungdomars uppväxtmiljö är det viktigt att kunskapen om deras effekter på barns psykiska hälsa ökar. För att detta ska vara möjligt måste man, förutom att intensifiera forskningen, lokalt satsa på att dokumentera och följa upp de insatser som ges till barn och ungdomar. Detta är ett viktigt metodutvecklingsverktyg och en grund för att utveckla beprövad erfarenhet som kan spridas, diskuteras och jämföras med andra resultat.

I rapporten presenteras en samhällsekonomisk modell där kostnaderna för generella insatser ställs mot insatsernas effekter på barns och ungdomars psykiska hälsa och de samhällsekonomiska vinster som dessa i sin tur ger upphov till. Modellen bygger på ett tänkesätt för prioriteringar som inte bara tar hänsyn till den berörda huvudmannens kostnader för en viss insats, utan också till hur kostnaderna påverkas i andra samhällssektorer och på längre sikt.

För att göra en samhällsekonomisk analys inom detta område behöver man veta vad olika tänkbara insatser kostar och vilka effekter de har på barns och ungdomars psykiska hälsa. Man behöver också veta hur detta påverkar samhällets kostnader för andra insatser på kort och lång sikt. I rapporten ges exempel på vad olika generella insatser för barn och ungdomar kostar. Dessa kostnader jämförs sedan dels med kostnader för olika selektiva insatser för barn och ungdomar, dels med exempel på samhällets kostnader för psykisk ohälsa hos vuxna personer. De beräkningar som presenteras ska ses som exempel på en analysmetod och de är inte i första hand avsedda att användas som underlag för jämförelser och val mellan olika tänkbara insatser.

Samhällets kostnader kan bli relativt höga redan på förhållandevis kort sikt om psykiska problem inte förebyggs och motverkas i ett tidigt skede. Kostnaderna för en familjehemsplacering under två år uppgår till knappt 800 000 kronor och för en HVBplacering under totalt ett år till ca 1,1 miljoner kronor. Om dessa insatser inte visar sig tillräckliga blir kostnaderna ännu högre. I rapporten ges även exempel på vad kostnaderna för psykisk ohälsa kan uppgå till om den kvarstår under vuxenlivet. Om en person utvecklar psykosociala arbetshinder kan samhällskostnaderna uppgå till omkring 2 miljoner kronor under en trettioårsperiod. Även kostnaderna för psykiska sjukdomstillstånd kan vara höga, ca 7–9 miljoner kronor enligt det exempel som valts. För en enda missbrukare kan samhällets kostnader uppgå till omkring 12–15 miljoner kronor under en trettioårsperiod beroende på hur mycket kostnaderna diskonteras.

En rimlig hypotes är att det finns en samhällsekonomisk potential i att satsa på förebyggande arbete inom de generella verksamheterna för barn och ungdomar, inte minst mot bakgrund av att de framtida selektiva insatser som kan komma att behövas är så kostsamma. Kunskapen är dock inte tillräcklig för att man med säkerhet ska kunna säga att en viss insats innebär en framtida ekonomisk vinst. För att ändå få en uppfattning kan man räkna ut hur många barn som kan få en viss insats för den kostnad som sparas in om ett enda fall av psykosociala arbetshinder, psykisk sjukdom eller missbruk förebyggs. Om man t.ex. förebygger en enda persons missbruk under vuxenlivet, kan man för samma kostnad ge stödjande utbildning som syftar till att utveckla föräldrarnas kompetens och sätt att bemöta sina barn till ca 3 400 eller 6 900 barns föräldrar beroende på hur kostnaderna diskonteras. Den här typen av utbildningar har visat sig effektiv när det gäller att förebygga utåtriktade psykiska problem hos barn och ungdomar. Det förefaller inte orimligt att man genom en så omfattande utbildningsinsats kan förhindra att minst ett av barnen kommer att leva som missbrukare. Det är vad som krävs för att insatsen ska vara samhällsekonomiskt lönsam på lång sikt.

Samhällsekonomiska analyser behöver kompletteras med en beskrivning av de fördelningseffekter som insatsen leder till. Dessa kan vara av två slag. En del handlar om att beskriva vilka barn som gynnas av insatsen. Är det de barn som är mest angelägna att nå? Den andra delen handlar om att det är viktigt att beskriva var i samhället som olika kostnader och besparingar uppstår. Vissa samhällssektorer och huvudmän kan få högre respektive lägre kostnader som en följd av insatsen, vilket det är viktigt att vara medveten om eftersom det kan påverka aktörernas incitament för att genomföra olika insatser.

I rapporten illustreras detta med ett räkneexempel som tar fasta på att samhällskostnaderna för en person med psykosociala arbetshinder under 30 år är ungefär lika höga som kostnaderna för att minska klasstorleken i grundskolan för 80 barn under ett år. Om man antar att den förebyggande insatsen kan leda till att ett fall av psykosociala arbetshinder förebyggs går samhället som helhet varken med vinst eller förlust på lång sikt. För de enskilda aktörerna ser dock bilden olika ut. Kommunen har kostnader för genomförandet av insatsen som uppgår till drygt en miljon kronor. Dessa kostnader uppvägs i viss mån av att kommunens kostnader för psykosociala arbetshinder minskar i framtiden. Kommunen har dock ändå en nettokostnad på ca 650 000 kronor. För de övriga aktörerna som påverkas av psykosociala arbetshinder, t.ex. försäkringskassan, innebär däremot insatsen en ren intäkt. Ur ett strikt ekonomiskt perspektiv framstår alltså minskad klasstorl

Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD.

Bove DG, Zakrisson AB, Midtgaard J, Lomborg K, Overgaard D. (2016)

AIMS AND OBJECTIVES: To explore how spouses of patients with severe chronic
obstructive pulmonary disease experience their role as informal caregiver.
BACKGROUND: Informal caregiver spouses are of pivotal importance in the way that
patients with chronic obstructive pulmonary disease cope with their daily life,
including their opportunity to stay at home and avoid hospitalisations in the
last stages of the disease. However, caregiving is associated with increased
morbidity and mortality among caregivers. Further understanding of the role as an
informal caregiver spouse of patients with severe chronic obstructive pulmonary
disease is needed to develop supportive interventions aimed at reducing the
caregiver burden.
DESIGN: The study had a qualitative exploratory design. The data collection and
analysis were based on framework method. Framework method is a thematic
methodology and consists of five key stages: familiarisation, identifying a
thematic framework, indexing, charting and mapping & interpretation.
METHODS: Three focus groups were conducted in November 2013 with 22 spouses of
patients with severe chronic obstructive pulmonary disease.
RESULTS: Undefined and unpredictable responsibility was found to be the
overarching theme describing the informal caregiver role. Underlying themes were:
being constantly in a state of alertness, social life modified, maintaining
normality, ambivalence in the relationship and a willingness to be involved.
CONCLUSIONS: The informal caregiver spouses experienced ambiguity about
expectations from their private and the health professionals' surroundings. The
informal caregiver spouses wanted to provide meaningful care for their partners,
but sought knowledge and support from the health professionals.
RELEVANCE TO CLINICAL PRACTICE: We recommend that nurses take on the
responsibility for including the informal caregiver spouses in those aspects of
decision-making that involve the common life of the patients and their spouses.

Understanding family care: A Multidimensional Model of Caring and Coping

Nolan, M., Grant, G., & Keady, J. (1996)

How are the burdens and difficulties of caregiving balanced by the satisfactions experienced? * How do the demands of caregiving change over time and what are the policy and practice implications of such changes? * How is a balance achieved between the needs of the caregiver and the cared-for person? The importance of family (informal) care both in making a reality of community care policies and in helping to sustain the quality of life of people who require support to remain within their homes is beyond doubt. However, whilst a considerable research and practice literature has developed in this area over the last ten years there remains much to learn about caring at both conceptual and practice levels. There is in particular a need to develop more dynamic models which account for the changing nature of care over time and integrates the perspectives of carer, cared-for person and the formal service network. Based on several years research conducted by the authors, Understanding Family Care integrates a number of theories and perspectives in order to provide a more holistic understanding of the needs of carers. Emphasis is placed on providing a balanced picture which recognizes both the burdens and satisfactions of caring, in addition to the coping efforts that carers employ. A new longitudinal model of caring is described and the various stages and processes are explored. Although the focus is primarily on the carer the perspectives of the cared-for person are not ignored and a model is presented which aids the integration of disparate viewpoints. In addition to theoretical and methodological debates, implications for policy and practice are fully explored. Understanding Family Care is recommended reading for practitioners and managers in the health and social services, as well as students of social science, nursing, gerontology and social work.

Understanding self-determination and families of young children with disabilities in home environments

Brotherson MJ, Cook CC, Erwin EJ, Weigel CJ. (2008)

This article is about emergent self-determination for young children with disabilities in their home environments. The purpose of this study was to better understand family and home characteristics and how they influence the ways in which families can support the development of self-determination for their children with disabilities. Thirty families of young children with disabilities were interviewed, and their homes were systematically observed. Using a grounded theory design, an emergent model was developed that examined family and home context and the influence of context on the strategies that families used to support self-determination. Future research and practice implications of this research for supporting families are discussed.

Understanding the construct of self-determination: Examining the relationship between the Arc´s self-determination scale and the American institutes for research self-determination scale.

Shogren KA, Wehmeyer ML, Palmer SB, Soukup JH, Little TD, Garner N, et al. (2008)

Since the early 1990s, attention has been focused on the importance of self-determination in the education of students with disabilities. The purpose of this study was to further our understanding of the construct of self-determination by examining the relationship between the Arc's Self-Determination Scale and the American Institutes for Research (AIR) Self-Determination Scale student and educator versions. Using structural equation modeling, we found that the theoretical structure of the Arc's Self-Determination Scale and the AIR Self-Determination–Student Scale was supported by the data, while the proposed theoretical structure of the AIR Self-Determination–Educator Scale was not. The analyses suggested that each of the measures of self-determination was measuring a different aspect of the self-determination construct (i.e., it was not possible to create a higher order factor comprising each of the assessments); thus issues related to the goals of the research and the underlying theoretical perspective of each measure must be considered when determining the most appropriate measure of self-determination in research and practice. Implications and future research directions are discussed.

Unga människor med rörelsehinder – förankring, marginalisering och social exkludering. Avhandling i socialt arbete

Dag, Munir (2006)

The aim of the thesis was to describe the specific barriers young people with disabilities experience in their ambition to get a job. The aim was also to investigate how these young people's social and economic situation has been affected by their disability.The results are based on two reports: one qualitative, consisting of interviews with 12 individuals with physical disabilities, and one quantitative in the form of a questionnaire answered by 706 persons. In the case of the questionnaire, the response rate was 48 per cent. Both reports are based on the same criteria, namely, that the respondents should have a physical disability, be 20–35 years of age and be participating in some form of employment policy program.The results from both studies show that individuals with physical disabilities encounter different types of barriers on the labour market, which can be categorised as being either at the individual level or at the social level. The barriers at the individual level are low education, long-term unemployment, grave physical disability and lack of work experience. The barriers identified at the social level are primarily poorly adapted workplaces, a too high working pace, employers' negative attitudes, insufficient knowledge of the competence of disabled persons and an overly generous social welfare system. All these factors constitute a direct obstacle to employing persons with a physical disability.The results from the interview study show that the respondents have few social relations. The majority of the respondents have social intercourse solely with family members or parents. Most of the respondents in the questionnaire study state that they have frequent social relations with friends and acquaintances. Both the interview study and the questionnaire study reveal that the respondents' financial position has worsened as a result if their physical disability.Conclusions that can be drawn from this thesis are that young people with physical disabilities encounter different barriers in their attempts to get a job and to maintain social relations. Based on the results, some of the respondents can be regarded as being socio-economically marginalised

Unga och jämställdhet

Ungdomsstyrelsen (2013)

Analys av unga
och jämställdhet
På uppdrag av regeringen har Ungdomsstyrelsen
under 2013 genomfört en tematisk analys
av unga och jämställdhet. Utgångspunkten för
analysen är de mål som finns inom ungdomspolitiken
och jämställdhetspolitiken.
Den nationella ungdomspolitiken har två
övergripande mål:
1. alla ungdomar ska ha verklig
tillgång till välfärd
2. alla ungdomar ska ha verklig
tillgång till inflytande.
Jämställdhetspolitikens övergripande mål är att:
• kvinnor och män ska ha samma makt att forma
samhället och sina egna liv.
Detta följs av fyra delmål:
1. jämn fördelning av makt och inflytande
2. ekonomisk jämställdhet
3. jämn fördelning av det obetalda hemoch
omsorgsarbetet
4. mäns våld mot kvinnor ska upphöra.
Av dessa är det högst prioriterade målet att
mäns våld mot kvinnor ska upphöra.
Jämställdhet har till stor del kommit att handla
om kvinnors tillträde till det offentliga rummet
och andra sfärer som historiskt sett varit förbehållna
män. Framförallt har villkor på arbetsmarknaden,
representation inom politiken och
utbyggd barnomsorg och föräldraförsäkring utvecklats.
Men flera rapporter har även genom
åren beskrivit och utrett mäns relation till jämställdhet,
och det pågår en stor utredning om
Sammanfattning
män och jämställdhet som presenteras i början
av 2014.
Den huvudsakliga strategin som används för
att nå de jämställdhetspolitiska målen är jämställdhetsintegrering,
vilket innebär att samtliga
beslut inom alla politikområden ska präglas av
ett jämställdhetsperspektiv.
Sedan mitten av 2000-talet följer regeringen
upp ungdomspolitiken genom indikatorer och
tematiska studier. Inom jämställdhetspolitiken
har redovisningen varierat genom åren men ett
nytt uppföljningssystem är under uppbyggnad.
Sedan 2012 presenterar Statistiska centralbyrån
indikatorer inom området.
Fokus 13 är indelad i kapitel som följer de fem
huvudområdena för ungdomspolitiken:
1. utbildning och lärande
2. arbete och försörjning
3. hälsa och utsatthet
4. inflytande och representation
5. kultur och fritid.
Inom dessa områden analyserar vi situationen
utifrån de jämställdhetspolitiska mål som är relevanta.
Vi beskriver också större förändringsarbeten
inom det aktuella området. Rapporten
avslutas med en diskussion och förslag på områden
som Ungdomsstyrelsen menar behöver
utvecklas.
Att belysa jämställdhet bland unga berör en
rad politikområden, vilket omöjliggör en uttömmande
beskrivning. I huvudsak utgår vi från
myndighetens egen kunskap i form av Ungdomsstyrelsens
återkommande ungdomsenkät
som riktar sig till ett slumpmässigt urval persofoto:
Colourbox.com
Inlaga.indd 7 2013-12-18 15:58:28
8
ner i åldern 16–25 år. Vi använder även Ungdomsstyrelsens
attityd- och värderingsstudie
som riktar sig till ett slumpmässigt urval unga i
åldern 16–29 år och vuxna från 35 år.
Utöver Ungdomsstyrelsens enkäter har vi använt
indikatorerna för ungdoms- och jämställdhetspolitiken
och kompletterat med statistik
och fördjupad kunskap från andra myndigheter.
Vi har också initierat fördjupningsstudier om
ungas oavlönade hem- och omsorgsarbete, om
grupprocesser, maskulinitet och våld samt om
Ungdomsstyrelsens egen bidragsgivning kopplad
till unga och jämställdhet.
En annan viktig kunskapskälla är de fokusgruppsintervjuer
som vi har gjort med unga i
högstadieskolor på fyra orter runtom i landet.
Syftet har varit att fånga vilka erfarenheter unga
har kring jämställdhet i sin vardag och hur de resonerar
i dessa frågor. I denna sammanfattning
lyfter vi fram några viktiga tendenser.
Ungas syn på jämställdhet
Vi beskriver ungas syn på jämställdhet utifrån
våra enkätstudier och den intervjustudie vi genomfört.
Våra enkäter visar att unga i högre grad
än äldre ser jämställdhet som en viktig samhällsfråga.
Samtidigt är det vanligare bland unga att
svara att jämställdheten har gått för långt. I alla
åldrar är det vanligare att tjejer och kvinnor har
en positiv inställning till jämställdhet.
• Jämställdhet lyfts fram som en av de tre viktigaste
samhällsfrågorna just nu av 19 procent
av tjejerna och 11 procent av killarna i åldern
16–29 år (2013). I gruppen 35–74 år är andelarna
endast 7 procent av kvinnorna och 5 procent
av männen.
• Det är få unga i åldern 16–25 år som inte tycker
att jämställdhet är viktigt, men det är vanligare
bland killar (8 procent jämfört med 2 procent
bland tjejer 2012).
• Det är något vanligare att unga tycker att jämställdheten
har gått för långt jämfört med äldre
2013. Det är också vanligare att killar och män
instämmer i detta jämfört med tjejer och kvinnor.
• Killar instämmer i större utsträckning än tjejer
i könsstereotypa påståenden. Bland killarna
i åldern 16–25 år instämmer 21 procent i påstå-
endet att män är bättre chefer än kvinnor jämfört
med 7 procent av tjejerna (2012). Det är även
17 procent av killarna som instämmer i att kvinnor
bör ta ett större ansvar än män för sysslor i
hemmet och 14 procent instämmer i att kvinnan
bör ta det största ansvaret för barnen i en familj
(jämfört med 6 respektive 7 procent av tjejerna).
Inom ramen för uppdraget har vi genomfört en
intervjustudie. Genom denna ges en översiktlig
bild av områden som unga själva lyfter fram
som viktiga.
• Många återkommer till att tjejer, av olika anledningar
och på olika sätt, inte tar lika mycket
plats som killar. Oron för att bli ifrågasatt, hånad
eller ansedd som dum bromsar många av tjejernas
vilja att ta det offentliga utrymmet i anspråk.
I killgrupperna beskrivs upplevelser av att inte
bli tagen på allvar eller att bli sedd som stökig
för att man är kille.
• De flesta av tjejerna betonar vikten av att klara
arbetet i skolan, medan resonemangen varierar
bland killarna.
Inlaga.indd 8 2013-12-18 15:58:28
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• Tjejers och killars förhållningssätt till idrott
skiljer sig åt mellan olika skolor och intervjugrupper.
En del tjejer är fysiskt aktiva i olika
idrottsformer och på olika nivåer. En del tjejer
uppger dock att de slutat med idrott för att hinna
med skolan, något som inte förekommer bland
killarna. Många killar säger att de är fysiskt aktiva
i olika sporter, vissa uttrycker ambitioner att
bli professionella idrottare.
• Utseende är något som på olika sätt kommer
upp i tjejgrupperna. Oftast finns en komplexitet
där tjejerna både reflekterar och ifrågasätter feminina
utseendeideal samtidigt som de strävar
efter att leva upp till dessa. I de intervjuer vi
gjort med killar talar de inte själva om utseendet
på samma sätt.
• Killars beteenden i grupp diskuterades i några
av intervjuerna. Killars sätt att uttrycka sig genom
att vara del av en grupp som hörs och syns
framträder.
Det är tydligt att unga upplever att det finns
olika förväntningar på tjejer och killar i skolans
miljö. Skolan är en arena där ojämställdhet
skapas men där det även finns möjligheter att
genomföra förändringar för att uppnå ökad jämställdhet
bland unga.
Utbildning och lärande
Det ungdomspolitiska området utbildning och
lärande omfattar både formell och icke formell
utbildning samt informellt lärande. Att kvinnor
och män ska ha samma möjligheter och villkor
i fråga om utbildning ingår även i regeringens
jämställdhetspolitiska delmål om ekonomisk
jämställdhet. Inom området ser vi en rad skillnader
mellan tjejer och killar. Många skillnader
har varit stabila över en längre tid. Särskilt
utmärkande är de könsbundna studievalen, att
killar generellt har sämre resultat än tjejer inom
skolsystemets alla delar och en ökande stress
bland unga tjejer.
Vi ser att tjejer och killar trivs olika bra i skolan.
Det är vanligare att tjejer är stressade jämfört
med killar. Omvänt så upplever killar i nå-
got mindre utsträckning att tjejer och killar blir
rättvist behandlade av lärarna. Det är också en
lägre andel bland dem som är nöjda med sin utbildning.
• Det är vanligare bland tjejer i årskurs 7–9 att
tycka att det är roligt att gå till skolan, 67 procent
jämfört med 49 procent bland killarna (2012).
• Redan i årskurs 7–9 finns tendenser att tjejer
är mer stressade än killar. På gymnasienivå är
könsskillnaderna när man mäter stress markanta.
Bland unga som känner sig stressade varje
dag eller minst en gång i veckan är könsskillnaderna
störst för egna krav och förväntningar på
skolarbetet (55 procent av tjejerna, 33 procent
av killarna), läxor/hemuppgifter (63 procent
av tjejerna, 43 procent av killarna) och betyg
(46 procent av tjejerna, 27 procent av killarna)
(2012).
Inlaga.indd 9 2013-12-18 15:58:28
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• Av killarna i årskurs 7–9 uppger 24 procent
att hälften eller mindre än hälften av lärarna behandlar
tjejer och killar rättvist, jämfört med 10
procent av tjejerna (2012).
• Bland unga i åldern 20–25 år uppger 66 procent
av tjejerna och 55 procent av killarna att de
är ganska eller mycket nöjda med sin utbildning
(2012).
Tjejer och kvinnor presterar i genomsnitt bättre
än killar och män på alla utbildningsnivåer –
från grundskolan, via gymnasieskolan och upp
till högskolan.
• I årskurs 9 fick tjejerna bättre betyg än killarna
i alla ämnen utom idrott och hälsa läsåret
2011/12. Tjejerna nådde målen i större utsträckning
och deras slutbetyg från gymnasieskolan
är också bättre än killarnas på samtliga 17 nationella
program i gymnasieskolan. Dock visar
uppföljningen av resultaten från våren 2013 på
den största förbättringen i killars resultat sedan
meritvärdessystemet infördes 1998.
• Med den nya gymnasieskolan (Gy2011)
skärptes behörighetskraven till gymnasieskolan,
främst till de högskoleförberedande programmen.
Detta ledde till ökade könskillnader.
Könsskillnaden är störst för naturvetenskapsoch
teknikprogrammet, 2013 var 85 procent av
tjejerna och 81 procent av killarna behöriga.
• Tjejer fullföljer sina studier i större utsträckning
än killar. Bland unga som började i gymnasieskolan
hösten 2009 hade 72 procent av tjejerna
och 66 procent av killarna slutfört studierna
inom tre läsår. Även inom högskolan har kvinnor
generellt sett en högre examensfrekvens än
män.
I gymnasieskolan och på högskolan studerar
tjejer och killar ofta skilda ämnen och utbildningar.
Könsfördelningen ligger vanligen utanför
intervallet 40–60 procent.
• Bland dem som slutförde gymnasiestudier
läsåret 2011/12 var det endast på det naturvetenskapliga
programmet som andelen tjejer och
killar fördelade sig jämnt.
• Några gymnasieutbildningar hade en särskilt
sned könsfördelning. På fordons-, bygg- samt
el- och energiprogrammen utgjorde killar mer
än 90 procent av dem som slutförde utbildningen
läsåret 2011/12. På hantverksprogrammet
utgjorde tjejer mer än 90 procent. Könsfördelningen
varierar också mellan olika inriktningar
inom programmen.
• Forskarutbildningen har gått från en stark manlig
dominans till en jämn könsfördelning. Andelen
kvinnor var endast 8 procent bland dem som
tog doktorsexamen 1969/70. Läsåret 2000/01
passerade dock andelen kvinnor 40 procent.
Inlaga.indd 10 2013-12-18 15:58:28
11
Arbete och försörjning
I kapitlet om arbete och försörjning beskriver
vi flera områden som är kopplade till ungas
etablering. De övergripande ungdomspolitiska
målen att alla unga ska ha verklig tillgång till
välfärd och inflytande har en stark koppling till
arbete och försörjning. Området är också centralt
i jämställdhetspolitiken och berörs särskilt
av delmålen om jämn fördelning av makt och
inflytande, ekonomisk jämställdhet och en jämn
fördelning av det obetalda hem- och omsorgsarbetet.
Tjejer etablerar sig senare i arbetslivet, arbetar
i högre grad deltid och uppger att familjebildning
påverkar yrkeslivet i större utsträckning än
killar. Det är något vanligare att killar är arbetslösa
och långtidsarbetslösa jämfört med tjejer.
Vi ser också skillnader i lön mellan könen.
• Etableringsåldern, det vill säga den ålder när
tre fjärdedelar av en årskull har arbete, låg 2012
på 28 år för tjejer och 26 år för killar.
• Bland sysselsatta i gruppen 20–24 år arbetade
över 50 procent av tjejerna deltid 2012, medan
motsvarande andel bland killarna i samma åldersgrupp
var 26 procent. Andelen som arbetar
deltid är lägre bland både kvinnor och män i äldre
åldersgrupper, men skillnaden mellan könen
är ännu större bland dem.
• I kvalitativa studier lyfter tjejer oftare än killar
fram att familjebildning kommer att påverka deras
framtida yrkesliv. Studier visar dock att tjejer
och killar lägger ungefär lika mycket tid på
det obetalda hem- och omsorgsarbetet, men att
de delvis ägnar sig åt olika sysslor. När unga blir
föräldrar uppstår däremot betydande skillnader
mellan könen.
• I grupperna 20–24 år och 25–29 år uppger 15
procent av killarna att de någon gång har varit
ofrivilligt arbetslösa i mer än sex månader, jämfört
med 10 procent av tjejerna (2013). Bland
de i åldern 18–24 år som har varit inskrivna hos
arbetsförmedlingen i mer än 6 månader var 56
procent killar och 44 procent tjejer 2012. Andelarna
var desamma 2011.
• Löneskillnaden mellan könen är större bland
äldre än bland yngre, men även bland unga 18–
24 år har killar en högre lön än tjejer om vi ser
till medellön (lönerna har räknats upp till heltid).
Löneskillnader kan, förutom kön, bero på
ett flertal aspekter som skillnader i arbetslivserfarenhet,
utbildning, diskriminering, yrke och
inom vilken sektor som arbetet utförs.
Det finns en tydlig könssegregation bland unga
på arbetsmarknaden, vilket återspeglar den uppdelning
vi ser inom utbildningsväsendet.
• Av de 30 vanligaste yrkeskategorierna bland
unga i åldern 16–24 år har endast tre en jämn
könsfördelning 2011 (inom spannet 40–60 procent).
Detsamma gäller för gruppen 25–29 år.
Tidigare analyser kring de trettio vanligaste yrkena
i gruppen 20–64 år visar att det är få yrkeskategorier
som har en jämn könsfördelning
(2010).
Det finns olika sätt att mäta ekonomisk utsatthet.
Vi ser att det är vanligare att tjejer har svårt
att betala löpande utgifter och att de i större
utsträckning tar emot pengar från närstående.
Omvänt är det vanligare att killar har så allvarliga
svårigheter med sin ekonomi att de riskerar
vräkning och att deras skulder blir föremål för
Kronofogden.
Inlaga.indd 11 2013-12-18 15:58:28
12
• Det var 18 procent av tjejerna i åldern 16–25 år
som vid flera tillfällen haft svårighet att betala
löpande utgifter under det senaste året, jämfört
med 14 procent av killarna 2012.
• I gruppen 16–19 år var det vanligare bland tjejer
än bland killar att under det senaste året ofta
ha fått ekonomisk hjälp av föräldrar eller annan
anhörig, 47 procent av tjejerna och 39 procent
av killarna (2012).
• Det var 5,3 procent av killarna i åldern 16–25
år som hade så allvarliga skulder att de var föremål
för indrivning hos Kronofogdemyndigheten
jämfört med 2,7 procent av tjejerna 2012.
En annan del av ungas etablering handlar om
boende där vi också ser vissa skillnader. Det är
vanligare bland killar i åldern 20–25 år att bo
kvar hemma hos sina föräldrar (44 procent jämfört
med 29 procent bland tjejerna). Bland tjejerna
är det 49 procent som bor i en egen hyresrätt
i första hand jämfört med 33 procent bland
killarna (2011).
Oavlönat hem- och
omsorgsarbete
På uppdrag av Ungdomsstyrelsen har Marie
Evertsson och Katarina Boye, vid Stockholms
universitet, genomfört en fördjupningsstudie
om ungas oavlönade hem- och omsorgsarbete.
De har studerat den tid som läggs på obetalt
arbete och inställningen till jämställdhet bland
tjejer och killar i åldern 19–30 år (2010). I studien
görs en jämförelse med motsvarande åldersgrupp
2000.
Resultaten visar att könsskillnaderna i gruppen
19–30 år i rutinartat hushållsarbete var små redan
2000 och minskade ytterligare till 2010. I
familjer med barn tycks könsskillnaderna däremot
ha ökat. Om det beror på sammansättningen
i urvalsgruppen eller om det tyder på mer stabila
förändringar i mammors och pappors ansvarsfördelning
är en fråga för framtida forskning.
• Inställningen till jämställdhet har varit relativ
stabil mellan 2000 och 2010. Runt 55 procent av
killarna och drygt 65 procent av tjejerna tycker
att det är mycket viktigt att satsa på ett samhälle
där kvinnor och män delar lika på ansvar för
hem och barn.
• Fördelningen av hushållsarbetet bland unga
har blivit mer jämn mellan 2000 och 2010. Detta
beror framför allt på att tjejerna minskat tiden
för rutinartat hushållsarbete. I genomsnitt ägnade
tjejerna 10,5 timmar och killarna 9,0 timmar
per vecka åt hushållsarbete (2010).
• Killar ägnar mindre tid än tjejer åt rutinartat
hushållsarbete men det är vanligare att killar
hjälper anhöriga och släktingar utanför hemmet
med hushållsarbete (inklusive reparationer och
underhåll).
• Kvinnors hushållsarbetstid ökar betydligt när
de blir föräldrar och är som störst när barnet
är under två år. Hushållsarbetstiden ökar ytterligare
för kvinnan om familjen får fler barn.
Mäns tid ökar i lägre grad när de får sitt första
barn, sjunker lite med barnets ålder och ökar
inte heller med ytterligare barn. Resultaten visar
att tjejer med barn hushållsarbetar i högre grad
än killar, även om de arbetar lika många timmar
på arbetsmarknaden och har lika hög lön som
killarna. Detta tyder på att den ojämna arbetsdelningen
inte främst är ekonomiskt motiverad.
Inlaga.indd 12 2013-12-18 15:58:28
13
Hälsa och utsatthet
För att beskriva ungas hälsa analyserar vi självskattad
hälsa, psykiskt välmående, psykosomatiska
symptom och trygghet. En stor del av kapitlet fokuserar
på våld och utsatthet eftersom delmålet om
att stoppa mäns våld mot kvinnor samt rätten till
kroppslig integritet är det som är högst prioriterat
inom jämställdhetspolitiken.
En majoritet av de unga mår bra, men det finns
samtidigt betydande andelar som inte gör det. Killar
uppger ett bättre allmänt hälsotillstånd än tjejer
och är i större utsträckning nöjda med sin hälsosituation.
Det är vanligare att tjejer oroar sig för sitt
utseende, sin vikt och att inte duga.
• Det egna allmänna hälsotillståndet bedöms som
bra eller mycket bra av 75 procent av tjejerna och
81 procent av killarna i åldern 16–25 år. Omvänt bedömer
7 procent av tjejerna och 4 procent av killarna
sin hälsa som ganska eller mycket dålig. Könsskillnaderna
är störst i gruppen 16–19 år (2012).
• Bland tjejer i åldern 16–29 år oroar sig 23 procent
ofta för sitt utseende och 28 procent oroar sig ofta
för sin vikt (6 respektive 8 procent bland killar). I
samma åldersgrupp oroar sig 25 procent av tjejerna
för att inte duga jämfört med 11 procent av killarna.
Mellan 16 och 29 år tycks dock killars oro tillta nå-
got med ökad ålder, medan tjejers oro istället minskar
något (2013).
Könsskillnaderna är påtagliga när vi tittar på psykisk
ohälsa och stressrelaterade symptom. Framfö-
rallt tjejer har haft en negativ hälsoutveckling sedan
slutet på 1980-talet, även om trenden är tydlig
också för killar fast från ett lägre utgångsläge. Vi
ser tendenser till att tjejer och killar hanterar psykisk
ohälsa på olika sätt och att ohälsan har olika
konsekvenser.
• Andelen som uppger att de är stressade flera
gånger i veckan är 50 procent bland tjejerna
och 24 procent bland killarna i åldern 16–25 år.
Bland tjejerna är 17 procent stressade varje dag
jämfört med 5 procent bland killarna (2012).
• Under 2012 uppgav 25 procent av tjejerna i
åldern 16–24 år att de lider av ängslan, oro eller
ångest, jämfört med 14 procent av killarna.
Jämfört med 1988/89 så har dessa andelar nästan
tredubblats för tjejer och mer än tredubblats
för killar. Konsekvenserna av psykiska besvär
tycks även vara större för tjejer.
• En jämförelse bland 16–29-åringar visar att
det mellan 2002 och 2013 har skett en viss ökning
av andelen unga som uppger att de ofta har
svårt att somna, lider av huvudvärk eller har ont
i magen.
• Tjejer och killar som mår dåligt hanterar i viss
mån sin situation på olika sätt. Killar uppger i
mindre utsträckning än tjejer att de pratar med
personer i sin omgivning när de mår dåligt. De
söker även stöd hos vuxna utanför familjen i
mindre utsträckning än tjejer. Intervjustudier
tyder också på att killar är mindre verbala än
tjejer när de söker stöd. Det finns också starka
samband mellan ekonomiska svårigheter och
psykisk ohälsa, i synnerhet bland tjejer. Bland
både tjejer och killar är oro för och brist på inflytande
kring den egna ekonomin förenat med
högre grad av psykisk ohälsa.
• Användningen av antidepressiva läkemedel
har ökat bland både tjejer och killar mellan 2007
och 2012. Under 2012 tog 4,4 procent av tjejerna
och 2,3 procent av killarna i gruppen 15–19
år antidepressiva läkemedel.
Inlaga.indd 13 2013-12-18 15:58:28
14
• Trots att tjejer i större utsträckning än killar
lider av psykiska besvär och vårdas för självmordsförsök
är 70 procent av de som faktiskt
avlider till följd av självmord i åldern 15–24
år killar. Killar är även överrepresenterande i
samband med alkohol- och narkotikarelaterade
dödsfall samt i fordonsolyckor med dödlig utgång.

Ungas våldsutsatthet och våldsutövande är
betydligt högre än för andra åldersgrupper. Tjejers
och killars våldsutsatthet ser många gånger
olika ut, gemensamt är dock att förövarna i stor
utsträckning är killar och män. Trots detta förbises
ofta både ålder och kön i analyser och diskussioner
om våld.
• Av killar i åldern 16–24 år uppger 9 procent
att de utsatts för misshandel under det senaste
halvåret 2012 jämfört med 4 procent av tjejerna.
I gruppen 19–24 år var risken nästan fem gånger
så hög bland killar som bland tjejer att hamna
på sjukhus till följd av våldsskador under 2011.
• Enkätstudier visar att 89 procent av alla misshandelsförövare
i gruppen 16–24 år var killar
och 11 procent var tjejer under perioden 2009–
2011. Bland offren för misshandel i åldersgruppen
var 71 procent killar och 29 procent tjejer.
• Det finns betydande variationer inom ungdomsgruppen
när det gäller utsatthet för våld.
Ungdomsstyrelsen har i tidigare utredningar visat
att unga hbtq-personer och tjejer och killar
med funktionsnedsättning är extra utsatta. De
upplever sämre hälsa och har i större utsträckning
än andra utsatts för hot och våld.
Killar drabbas framförallt av fysiskt våld från
en okänd förövare på allmän plats, medan tjejer
i större utsträckning är utsatta för våld i bostaden,
på arbetet eller i skolan.
• Tjejer är i högre grad utsatta för våld i nära
relationer än killar. Unga ensamstående mammor
är i högre grad drabbade än andra studerade
grupper. Av de tjejer som utsattes för misshandel
under 2011 uppger 22 procent att våldet skett i
bostaden och 28 procent uppger att förövaren
var en närstående (jämfört med 6 respektive 3
procent av de utsatta killarna). Det är även en
högre andel av de tjejer som utsatts för hot och
trakasserier som har utsatts av en närstående
jämfört med andelen killar.
• Unga tjejer är överrepresenterade som offer för
sexualbrott och förövaren är många gånger en
jämnårig eller något äldre kille. Bland tjejer i åldern
16–24 år uppger 3,4 procent att de har varit
utsatta för sexualbrott jämfört med 0,5 procent
bland killar (2011).
• Den upplevda otryggheten och rädslan för att
vistas i det offentliga rummet kvällstid är betydligt
vanligare hos tjejer än hos killar. En större
andel tjejer än killar upplever även att otryggheten
påverkar deras livskvalitet. Så många som
29 procent av tjejerna i åldern 16–24 år uppger
att de under det senaste året ofta valt att ta en
annan väg eller ett annat färdsätt på grund av
oro att utsättas för brott jämfört med 5 procent
av killarna (2012).
• Bland unga i åldern 16–25 år uppger 33 procent
av killarna och 16 procent av tjejerna att de
tycker det är okej att andra har sex mot ersättning
(2012). I ungdomsenkäten 2012 uppger 2,1
procent av killarna och 0,8 procent av tjejerna
Inlaga.indd 14 2013-12-18 15:58:28
15
att de själva har erfarenhet av att ta emot ersättning
för sex. En betydande andel av dem som
köper sex av unga är själva unga och den största
andelen är män.
• Av de våldtäkter mot personer över 18 år som
anmäldes under 2012 var offren i 96 procent av
fallen kvinnor och 98 procent av de misstänkta
förövarna var män. Mer än hälften (53 procent)
av förövarna var killar mellan 15 och 29 år.
• Det är fyra gånger så vanligt att tjejer får ovälkomna
sexuella förslag på nätet jämfört med
killar. Under 2012 hade 44 procent av tjejerna i
åldern 16–25 år någon gång varit med om att en
person på nätet försökt förmå dem att prata om
sex, skicka bilder eller agera framför en webbkamera
mot deras vilja jämfört med 12 procent
av killarna.
Grupper, maskuliniteter och våld
På uppdrag av Ungdomsstyrelsen har Tove Pettersson,
vid kriminologiska institutionen på
Stockholms universitet, gått igenom forskning
som belyser gruppens betydelse för ungas våldsutövande
och skapandet av maskulinitet. Hon
belyser likheter mellan vardagliga situationer i
exempelvis skolan och mer allvarliga våldsbrott
som begås av killar och män i grupp.
Analysen visar hur användandet av våld mot
någon inför en grupp kan vara betydelsefullt
för att uppnå status. Grupperna i studien präglas
av en stark manlig, homosocial gemenskap,
där lojalitet värderas högt. Homofobi och den
symboliska betydelse som "bögen" tillskrivs är
centralt i studierna. Sexistiska och nedvärderande
attityder och beteenden mot kvinnor är också
framträdande.
Hotet om att själv bli utsatt genom att inte leva
upp till de krav på maskulinitet som gruppen
ställer har en stark disciplinerande effekt. Forskare
inom skilda fält påtalar hur normer kring
dominans, överordning, styrka eller att inte vara
feg ofta präglar maskulinitetskonstruktioner.
Flera av de normer som förknippas med brottslighet
är värderingar som även återfinns bland
killar i andra sammanhang.
Sammantaget visar genomgången att killars
och mäns tillvaro många gånger är begränsad.
Små avvikelser från de maskulina normerna,
exempelvis genom att göra något som uppfattas
som feminint, kan lätt leda till trakasserier
och begränsade möjligheter att få delta i kamratgruppen
på lika villkor. Detta får betydelse
även i andra i sammanhang och både tjejer och
andra killar utsätts för killgruppernas maskulinitetskonstruktioner
genom såväl sexism som
våldsbrott.
Det här innebär att gruppen är viktig i
våldsförebyggande arbete, framför allt i ungdomsgruppen
och då speciellt för killar. Dels
för att gruppen är särskilt betydelsefull under
ungdomsåren, dels för att killar i grupp tycks
konstruera maskulinitet som är starkare förknippad
med dominans, överordning och våld än det
som sker individuellt.
Därför är det angeläget att utveckla våldspreventivt
arbete med särskilt fokus på grupper.
Flera våldspreventiva program från andra länder
har också ett inslag av ett åskådarperspektiv, där
fokus ligger på agerandet hos närvarande som
inte själva deltar i våldshändelsen.
Inlaga.indd 15 2013-12-18 15:58:28
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Inflytande och
representation
Inflytande och representation är nära kopplat till
huvudmålen inom både jämställdhetspolitiken
och ungdomspolitiken. Det ungdomspolitiska
målet anger att unga ska ha verklig tillgång till
inflytande och välfärd och det jämställdhetspolitiska
målet att kvinnor och män ska ha makt
att forma samhället och sina egna liv. Vår studie
visar att tjejer och killar i lika stor utsträckning
uppger intresse för samhällsfrågor och vad som
händer i andra länder (2012). Vi ser dock att tjejers
och killars erfarenheter i andra avseenden
skiljer sig åt:
• En högre andel killar än tjejer uppger att de är
intresserade av politik, 45 procent jämfört med
31 procent (2012). Skillnaden har ökat de senaste
åren. När vi undersöker faktiska politiska
aktiviteter framstår det istället som att tjejer i
något högre grad är aktiva.
• En högre andel tjejer än killar i åldern 20–25
år uppger att de vill vara med och påverka lokalt
2012 (43 respektive 38 procent). Av de som inte
vill vara med och påverka är det en större andel
tjejer än killar i åldern 16–25 år som uppger att
det är för att de kan för lite om hur de ska bete
sig (27 procent respektive 16 procent).
• Killar i åldern 16–25 år var i högre grad än
tjejer benägna att chatta, debattera och kommentera
politik på internet 2012 (22 respektive
11 procent). Tjejer väljer i större utsträckning
än killar att köpa vissa produkter av politiska,
etiska eller miljömässiga skäl (35 respektive 27
procent).
• En något högre andel tjejer än killar röstar i
nationella val. Samtidigt var det fler killar än
tjejer, 18–25 år, som nominerades och valdes
in i riksdag och landstingsfullmäktige 2010. I
kommunfullmäktigevalen var könsfördelningen
nästan jämn. Det är vanligare att tjejer hoppar av
sina politiska uppdrag än att killar gör det.
• Samtliga politiska ungdomsförbund, utom
Grön ungdom och Ung vänster, hade fler killar
än tjejer som medlemmar 2011. Könsfördelningen
håller sig dock inom spannet 40–60
procent för alla ungdomsförbund utom Ung pirat
och Sverigedemokratisk ungdom (SDU) som
har en fördelning på 80–85 procent killar och
15–20 procent tjejer, samt Grön ungdom med en
fördelning på 61 procent tjejer och 39 procent
killar.
Ungdomsstyrelsens
bidragsgivning till unga
och jämställdhet
En av Ungdomsstyrelsens centrala uppgifter är
att ge bidrag till ideella organisationer. Vi har
i denna studie analyserat ansökningar och slutrapporter
för projekt som under de senaste fem
åren haft ett jämställdhetssyfte och som riktat
sig till unga.
Kartläggningen visar att flest projekt som beviljats
bidrag har arbetat för det jämställdhetspolitiska
delmålet om lika makt och inflytande.
Det näst vanligaste är att arbeta för att mäns våld
mot kvinnor ska upphöra, där de flesta projekt
drivits av tjej- och kvinnojourer eller syftat till
att motverka hedersrelaterat våld. Få projekt
syftar till ekonomisk jämställdhet och det finns
inga projekt som arbetar för en jämnare fördelning
av det obetalda hemarbetet bland unga.
De flesta projekt i kartläggningen har tagit
fram metodmaterial, genomfört utbildningar för
unga och yrkesverksamma samt kompetensutvecklat
personer i den egna verksamheten. Det
Inlaga.indd 16 2013-12-18 15:58:28
17
har blivit vanligare att arbeta med jämställdhet
utifrån ett normkritiskt perspektiv mellan 2008
och 2012 och flera projekt syftar till att utjämna
maktstrukturer i den egna organisationen.
Många projekt riktar sig till "alla" unga eller
syftar till att stärka tjejer, men få projekt har
främst killar som målgrupp. Det finns en risk
att jämställdhetsarbete blir en fråga för endast
kvinnor eller tjejer. Villkoren för de olika bidrag
som fördelas påverkar i sig utfallet av de projekt
som drivs av organisationer i det civila samhället.
Inom många bidragsformer finns det särskilt
avsatta medel för exempelvis kvinnor.
Kultur och fritid
Den fria tiden är en viktig arena för ungas lärande
och självförverkligande. I regeringens strategi
för ungdomspolitiken framhålls tillgången till
kultur som grundläggande i en demokrati samt
som ett kraftfullt redskap för ett aktivt deltagande
i samhället. Idrotten är också en viktig del av
många ungas fritid. Det jämställdhetspolitiska
delmål som ligger närmast detta område handlar
om jämn fördelning av makt och inflytande.
Det är vanligare bland tjejer att uppleva att de
har för lite fritid och tjejer är även i mindre utsträckning
aktiva i föreningar. Killar tycks värdera
fritidsaktiviteter högre.
• Det är vanligare att tjejer upplever att de har
för lite fritid och nivåerna har varit relativt stabila
mellan 2004 och 2012. Bland tjejer i åldern
16–25 år uppgav 42 procent att de hade för lite
fritid, jämfört med 28 procent bland killarna
(2012).
• Tjejer och killar är ungefär lika nöjda med sin
fritid, men det är vanligare att tjejer i åldern 16–
25 år har avstått från att besöka en fritidsaktivitet
på grund av rädsla för att bli dåligt bemött,
17 procent av tjejerna och 12 procent av killarna
(2012).
• Fritiden är det som värderas högst på frågan
om vad som är viktigast just nu bland unga i
åldern 16–24 år, före andra områden som parförhållande,
fast arbete och bilda familj. På frå-
gan om vad som ger livet mest mening var familjen
det vanligaste svarsalternativet för såväl
tjejer som killar i åldern 16–29 år. Bland killar
var fritiden det näst vanligaste svarsalternativet
(21 procent) medan det bland tjejer istället var
vänner (16 procent) följt av fritid (7 procent)
(2013).
Många tjejer och killar idrottar och motionerar,
men det sker delvis i olika sammanhang och
i olika utsträckning. Killar är överrepresenterade
inom föreningsidrotten samtidigt som det är
något vanligare bland tjejer att motionera. Tjejer
lämnar föreningsidrotten i större utsträckning än
killar när de kommer upp i tonåren.
• Andelen tjejer som motionerar minst en gång i
veckan har legat runt 80 procent de senaste åren
(2008–2012) medan andelen killar har varit nå-
got lägre, runt 70 procent.
• Killar är överrepresenterade inom föreningsidrotten.
Bland det totala antalet deltagartillfällen
2011 var könsfördelningen 61 procent killar
och 39 procent tjejer. Andelen aktiva tjejer
minskar med ökad ålder.
• I många fall är män överrepresenterade på ledande
positioner inom idrotten.
• Vissa idrotter är tydligt könskodade. De tre
specialförbund som har flest deltagartillfällen är
fotboll, innebandy och ishockey. Det är också
Inlaga.indd 17 2013-12-18 15:58:28
18
de specialförbund som har lägst andel tjejer och
högst andel killar som deltagare. Ridsport och
gymnastik är de specialförbund där främst tjejer
deltar, men dessa har betydligt färre deltagartillfällen.

• Tjejer med utländsk bakgrund är den grupp
som i minst utsträckning är representerad inom
föreningsidrotten. Unga hbtq-personer har betydligt
lägre deltagande än övriga inom motion
och idrott. Killar som identifierar sig som heterosexuella
deltar i föreningsidrotten i större
utsträckning än killar med annan sexuell tillhö-
righet.
Tjejer är i högre grad aktiva kulturutövare och
utövar i ungdomsåren fler kulturformer samtidigt
jämfört med killar. I åldern 13–25 år är killar
dock överrepresenterade i de verksamheter
som får offentligt stöd.
• Inom breda kulturområden som att sjunga,
spela musik, dansa och utöva teater är tjejer i
åldern 16–25 år mer aktiva än killar minst en
gång i veckan, 38 procent jämfört med 29 procent
(2012).
• Tjejer deltar i större utsträckning i dans, skrivande
och teater på sin fritid, medan killar i
större utsträckning deltar i musikaktiviteter
(2010). Bland tjejerna i åldern 16–25 år var det
även 21 procent som var aktiva i minst tre av
kulturaktiviteterna musik, dans, bild, skrivande
eller teater någon gång det senaste året jämfört
med 8 procent bland killarna. Andelen som inte
hade utövat någon av de nämnda aktiviteterna
på sin fritid var 39 procent bland killarna och 24
procent bland tjejerna (2010).
• Sett till antal deltagare är tjejer överrepresenterade
inom musik- och kulturskolans verksamhet
2012 (69 procent jämfört med 31 procent killar). I
verksamheten deltar främst barn under 13 år. I studieförbundens
studiecirkelsverksamhet med kulturinriktning
för unga i åldern 13–24 år är förhållandet
istället det motsatta, 40 procent tjejer jämfört med
60 procent killar (2012).
• Läsförståelsen hos unga har minskat generellt.
Ungefär en fjärdedel av de 15-åriga killarna i Sverige
saknade funktionell läsförmåga 2010. Bland
unga med de lägsta resultaten i Sverige är andelen
killar betydligt högre än andelen tjejer (24 respektive
10 procent).
I fördelningen av statliga offentliga medel till
ungas organisering, idrott och kultur i åldersgruppen
13–25 år får killar den största andelen.
• Det offentliga stödet till idrotten går huvudsakligen
till föreningsidrott, där en högre andel killar
än tjejer är aktiva. Den senaste mätningen visar att
killar står för drygt 60 procent av deltagartillfällena
och tjejer för knappt 40 procent 2011.
• En stor del av statens stöd till ungas kulturutövande
går genom studieförbundens studiecirklar. I studiecirklarna
med kulturinriktning finns en liknande
övervikt av killar, 60 procent killar och 40 procent
tjejer i åldern 13–24 år deltog i sådana cirklar 2012.
• Ungdomsstyrelsen kan se att antalet tjejer och
killar ökar bland det totala antalet medlemmar
som finns i de ungdomsorganisationer vi fördelar
statsbidrag till. Dock verkar fördelningen här bli
alltmer skev, 2010 var 47 procent av organisationernas
medlemmar tjejer och 53 procent killar. Två
år senare var 41 procent tjejer och 59 procent killar
(2012).
Inlaga.indd 18 2013-12-18 15:58:28
19
Förändringsarbete inom
de fem huvudområdena
I varje kapitel ger vi en sammanfattande bild av
jämställdhetssatsningar som har riktats till unga
i åldern 13–25 år, med fokus på de senaste fem
åren.
Utbildning och lärande är ett område där jämställdhetsarbetet
har belysts grundligt relativt
nyligen både inom grund- och gymnasieskolan
och inom högskolan. Flera initiativ har tagits
på utbildningssystemets olika nivåer, både i
form av särskilda satsningar och i form av att
integrera jämställdhetsperspektivet i ordinarie
verksamhet och utbildningar. Det finns dock
tendenser att de särskilda satsningar som görs
blir kortsiktiga och inte lyckas skapa långsiktig
förändring. Vi ser också att unga själva sällan
involveras mer direkt i det jämställdhetsarbete
som bedrivs i skolans värld.
Inom området arbete och försörjning är initiativ
för ökad jämställdhet bland unga inom arbetslivet
ett underutvecklat område. Det finns
få studier som belyser dessa frågor på djupet,
och vi ser få initiativ för ökad jämställdhet bland
unga inom detta fält. Detta märks både i en genomgång
av arbetet inom ramen för Program
för hållbar jämställdhet (HÅJ) som Sveriges
Kommuner och Landsting driver 2008–2013 för
att stödja arbetet med jämställdhetsintegrering
på lokal och regional nivå, och i de många ungdomsprojekt
som delfinansierats av Europeiska
socialfonden under 2007–2013.
Vi har i rapportens kapitel om hälsa och utsatthet
särskilt fokuserat på ungas psykiska ohälsa
och arbete kopplat till att förhindra mäns våld
mot kvinnor samt rätt till kroppslig integritet.
Det finns betydande satsningar för att synkronisera
samhällets insatser kopplade till barns och
ungas psykiska ohälsa och för att stärka elevhälsans
arbete. Unga är också särskilt prioriterade
i psykiatrisatsningen 2012–2016. För att stärka
arbetet att bekämpa mäns våld mot kvinnor har
regeringen arbetat utifrån tre handlingsplaner
och under 2011–2014 arbetar de med fokusområden
som bland annat handlar om stärkt samordning,
åtgärder mot sexuellt våld, prostitution
och människohandel samt stärkt förebyggande
arbete.
Det finns flera initiativ och satsningar som
handlar om ungas inflytande och representation,
dock finns det få satsningar som är riktade
specifikt mot unga som också är kopplat
till jämställdhet. En viktig lärdom är att även
om olika aktörer och myndigheter arbetar med
både jämställdhet och inflytande bland unga, så
är dessa områden sällan sammanlänkade. Istället
finns flera exempel på hur aktörer inom det
civila samhället bedrivit arbetet där båda dimensionerna
finns med samtidigt. Vi ser det bland
annat genom att Ungdomsstyrelsens stöd till
projekt på temat unga och jämställdhet i mycket
hög grad varit inriktade mot ungas inflytande
och representation.
När det gäller ungas kulturaktiviteter och fritid,
så har vissa initiativ tagits för att öka jämställdheten
bland unga. Det finns både lokala
exempel och nationella initiativ för att öka jämställdheten
inom idrotten och kulturlivet. Vår
undersökning visar dock att arbetet inom båda
dessa områden har en lång bit kvar innan vi
uppnår en jämställd fritid för tjejer och killar.
Förändringsarbetet inom idrotten kan inte sägas
ha kommit särskilt långt (samtidigt som tjejer är
överrepresenterade bland styrelseledamöter under
30 år i centrala styrelser) och de satsningar
som har gjorts inom kulturområdet berör endast
delvis unga 13–25 år och inte alltid med ett jämställdhetsperspektiv
som en del av arbetet. Den
samlade kunskapen om ungas fritid på nätet är
också bitvis låg och kan utvecklas framåt.
Inlaga.indd 19 2013-12-18 15:58:29
20
En viktig fråga är också hur vi skapar goda
förutsättningar för att ta tillvara erfarenheter
och kunskaper från de satsningar som görs på
jämställdhet. Här finns det positiva initiativ som
portalen www.jamstall.nu där man hittar exempel
inom området. Samtidigt ser vi att arbetet
med att ta tillvara kunskaper och erfarenheter
har kommit olika långt. Exempelvis finns många
utredningar och utvärderingar om jämställhetsarbetet
inom skolan, men desto färre som belyser
situationen för unga inom både arbetslivet
och på fritiden.
Diskussion och förslag
Det är inte möjligt att enkelt konstatera hur det
ser ut när det gäller jämställdhet bland unga i
Sverige. Jämställdhet är mångfacetterat och
orsakssamband ofta komplexa. Det genomförs
också en rad olika typer av analyser inom området.
Det finns flera olika index för att mäta
och jämföra jämställdhetssituationen på internationell
nivå. Genom åren har det tagits fram ett
tiotal sådana mått. Sverige och flera andra nordiska
länder brukar placera sig högt i sådana mätningar.
I vår rapport ser vi både positiva och negativa
trender när det gäller jämställdhet bland
unga. Vissa skillnader mellan könen är istället
relativt konstanta över tid. Inom flera områden
framträder dock en mer komplex bild som gör
det svårt att entydigt tala om förbättringar eller
försämringar.
När det gäller ungas inställning till jämställdhet
har denna varit stabil under 2000–talet.
Unga generellt värderar jämställdhet som en
viktigare fråga än äldre. Stödet för jämställdhet
är mer utbrett bland tjejer och kvinnor än bland
killar och män.
Bland positiva trender finns en alltmer jämn
könsfördelning bland unga doktorander vid universitet
och högskolor. Segregationen mellan
könen i vilka program de läser på gymnasiet är
stor, men har minskat något de senaste tio åren.
Bland negativa trender finns särskilt tjejers hälsoutveckling
sedan 1980-talet. Nya behörighetsregler
i gymnasiet verkar också förstärka
skillnaderna mellan könen i vilka program de
läser, vilket är en utveckling som behöver följas
framöver.
Vi ser genom rapporten att ojämställdhet begränsar
både tjejer och killar, och att de har olika
handlingsutrymme i många sammanhang. Tjejer
och killar möter skilda förväntningar i skolan,
både från personal och från andra elever, vilket
riskerar att förstärka skillnaderna mellan könen.
Här verkar det också finnas betydande variationer
mellan skolor när det gäller lokala normer
för tjejer och killar. Det är viktigt att skolan är en
plats där alla kan mötas av likvärdiga förväntningar.
Att det finns en betydande segregering i
val av utbildning, av yrke såväl som av fritidsaktiviteter
är en indikation på de begränsningar
som kan finnas.
Inom flera områden har tjejer sämre levnadsvillkor.
Psykisk ohälsa och stress är särskilt utbrett.
Det gäller även utsatthet för sexuellt våld
och våld i nära relationer. Familjebildning tenderar
också att få större konsekvenser för tjejer
i relation till både arbetslivet och till det oavlö-
nade hem- och omsorgsarbetet. Bland killar är
det vanligare med allvarligare ekonomiska problem,
och de är överrepresenterade när det gäller
våldsutövande och även utsatthet för många
former av våld. Vi ser hur maskulinitetsnormer
påverkar våld och även hur killar verbaliserar,
eller inte verbaliserar sitt mående.
Inlaga.indd 20 2013-12-18 15:58:29
21
Jämställdhetspolitiken tar sin utgångspunkt
i relationen mellan könen och den ojämna fördelningen
av makt och inflytande. Det är viktigt
att också uppmärksamma att det finns personer
som varken identifierar sig som tjejer eller killar,
och att analyser ofta har en heterosexuell
utgångspunkt och kärnfamiljen som modell.
De statistiska undersökningar som finns är väldigt
begränsade när det gäller att fördjupa vår
kunskap om levnadsvillkoren för flera delar av
ungdomsgruppen som vi vet lever i en särskilt
utsatt situation. Här behövs fortsatta kvalitativa
studier för att spegla villkoren och kunna formulera
relevanta politiska frågor.
Förändringsarbetet har kommit olika långt
om vi ser till huvudområdena i ungdomspolitiken.
Inom utbildning och lärande har många
satsningar och utredningar gjorts och det finns
mycket samlad erfarenhet och kunskap för ett
fortsatt arbete. För arbete och försörjning ser vi
att det har varit ovanligt med initiativ för ökad
jämställdhet för unga. Inom hälsa och utsatthet
kan vi konstatera att det finns betydande satsningar
för att utveckla de insatser som ges, och
att barn och unga är särskilt prioriterade i satsningen
kring psykisk ohälsa 2012–2016, dock
saknas ett tydligt jämställdhetsperspektiv. Flera
initiativ har tagits för att stärka kunskapen och
insatserna inom området unga och våld. Ungdomsstyrelsen
har sedan tidigare lagt flera förslag
hur detta arbete kan förstärkas ytterligare.
Inom inflytande och representation finns det
få offentliga initiativ som kombinerar frågorna
om ungas inflytande och jämställdhet. Detta är
istället vanligare bland aktörer inom det civila
samhället, som också får stöd från det offentliga
bland annat genom Ungdomsstyrelsen och
Allmänna arvsfonden. Inom området kultur och
fritid finns lokala exempel och nationella initiativ
för att öka jämställdheten inom idrotten och
kulturlivet. Vi ser att arbetet inom idrotten kan
utvecklas och att satsningar inom kulturen endast
delvis når unga.
För ett långsiktigt arbete behöver projekt och
särskilda initiativ pågå samtidigt som jämställdhetsintegreringsarbetet.
Kunskaper och erfarenheter
från förändringsarbete skulle kunna samlas
på ett mer systematiskt sätt än idag. Vi ser
också behov av att killar och mäns engagemang
behöver höjas inom jämställdhetspolitiken för
att nå långsiktig förändring.
Ungdomsstyrelsen lägger sex förslag som kan
komplettera och vidareutveckla arbetet och kunskapsutvecklingen
för ökad jämställdhet mellan
tjejer och killar:
• Synliggör barn och unga i uppföljningen av
jämställdhetspolitiken
• Förtydliga jämställdhetsperspektivet i satsningen
kring psykisk ohälsa 2012–2016
• Granska arbetsmarknadsåtgärder utifrån ett
jämställdhetsperspektiv
• Förstärk arbetet mot sexuella trakasserier i
skolan
• Fokus på grupper och maskulinitet i forskning
och i ett avgränsat försök med våldspreventivt
program i Sverige
• Utveckla indikatorerna för uppföljning av ungas
kultur och fritid, och därmed möjligheterna
att följa upp jämställdheten på området.

Unga vuxna med en historia av uppförandestörning. – En långtidsuppföljning med ett salutogent och ekologiskt perspektiv

Olsson, Martin (2006)

Denna avhandling innehåller en huvudstudie och en delstudie. Syftet med huvudstudien var att följa upp en grupp ungdomar som hade blivit diagnostiserade med uppförandestörning (n=351) i det unga vuxenlivet. Delstudiens syfte var att ifrågasätta och klargöra frågeformuläret KASAM-29 och dess förhållande till den salutogena teorin. I avhandlingen användes olika utfallsvariabler och utfallsmått, vilka även diskuterades. Två perspektiv på utfall användes, ett salutogent och ett ekologiskt.

Det salutogena perspektivet kunde användas först efter att delstudien var klar. Delstudien visade att KASAM-29 är ett reliabelt och validt mätinstrument. Dessutom visade delstudien att huvudbegreppet i den salutogena teorin Känslan av sammanhang bör betraktas som ett holistiskt begrepp.

Huvudstudien följde upp 290 ungdomar i deras unga vuxenliv (medelålder 21 år). Utifrån det salutogena perspektivet, KASAM-29, hade ungefär hälften männen (43 %) och kvinnorna (56 %) ett negativt utfall. Det ekologiska perspektivet bestod av sju enskilda variabler: låg utbildningsnivå, transfereringsinkomst, hög symtombelastning, missbruk, kriminalitet och dygnsvård för vuxna. Genom att kombinera dessa enskilda variabler, hade ungefär två tredjedelar av männen (68-70 %) och ungefär hälften av kvinnorna ett negativt utfall i vuxenlivet. Dessa utfallsmått kunde inte substantiellt prediceras av variabler från deras medicinska patient journal.

Huvudstudien är en av få nationella och internationella långtidsuppföljningar bestående av ett kliniskt urval av ungdomar diagnostiserade med uppförandestörning. Studien visar att det är möjligt att genomföra denna typ av studier med ett litet bortfall. Individer diagnostiserade med uppförandestörning har en förhöjd risk för ett problematiskt vuxenliv. Vuxenlivet kan beskrivas på många olika sätt. Men slutsatsen är att utfallet i vuxenlivet beror på valet av utfallsmått. För att besvara frågan hur stor del av ungdomarna som hade ett negativt utfall i vuxenlivet måste utfallsmåttet först specificeras. Specificeringen måste klargöra utfallsmåttets uppbyggnad och definition. Först därefter kan frågan verkligen besvaras.

Ungdomsvård på hemmaplan. Idéerna, framväxten, praktiken

Forkby, Torbjörn (2005)

Juveniles who are rowdy, who commit crime, abuse drugs, have difficulty functioning in school or in the home are the subject of constant attention: from indignant voices in newspaper reports, to demands in parliament for action, all the way to the informal conversations at the lunch table and in the home in front of the television. This dissertation is about society's attempts to normalize them, in a time when institutional care has gained a bad reputation. All over the western world there are attempts to replace institutions with qualified non-institutional measures. In Sweden a rather broad range of activities has emerged under designations such as home-based solutions, intermediary care or simply alternatives to institutional care. Among these we can find both all-embracing and innovative endeavours and more limited expansions of established patterns of thought. Although there are numerous studies of individual ventures, often in the form of project evaluations, there are no approaches with an overall perspective on the field. This dissertation seeks to remedy this by studying ideas articulated when activities are planned and how daily life between juveniles and employees is formed in a typical home-based solution. These studies are conceptualized through a description of the development of juvenile care during the 20th century. The study is based on the methods of discourse analysis and focuses on how communication is shaped and given a specific function in an institutional order. The first study shows how the social worker as a rescuing subject is linked with the juvenile as an object needing rescue through the technology involved in the home-based solution. Four main forms of home-based care are identified in accordance with the way they relate to the mother organization (integrated – free-standing), and the way they handle problems that arise (ad hoc – a priori). The study of the special school "Pilen" analyses in detail how everyday life is shaped and maintained. Therapeutic work is perceived in the dissertation as actions accompanied by power with the intention of achieving dominance within a social space. In the special school it becomes evident how the employees' claims for power encounter the juveniles' counter-power, and how this is expressed in a reciprocal positioning game. The juveniles often have great potential to neutralize the employees' direct interventions. At the same time, they have little opportunity to change the social and cultural framework which dictates why they are there – and hence also little opportunity to avoid being captured in the category of "problem children". In this way the special school was simultaneously a sanctuary from the excessive pressures of ordinary school and a place of banishment from it, and from what is perceived as the reference of normality.

Universal alcohol misuse prevention programmes for children and adolescents: Cochrane systematic reviews

Foxcroft DR, Tsertsvadze A. (2012)

AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.

Universal alcohol misuse prevention programmes for children and adolescents: Cochrane systematic reviews.

Foxcroft DR, Tsertsvadze A. (2012)

AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.

Unjustly neglected: Siblings of people with a schizophrenic psychosis

Schrank B, Sibitz I, Und MS, Amering M. (2007)

Objective: Siblings of individuals suffering from schizophrenia are an underrepresented group in research focussing on the needs of carets and relatives of psychiatric patients. The present study aims to investigate differences between siblings and parents as well as spouses, as regards help seeking, utilisation of an open group for relatives, their subjective burden and quality of life. Methods: 147 relatives of in-patients and patients attending a day hospital where assessed using the General Health Questionnaire (GHQ), the Family Problem Questionnaire (FPQ), the WHO Quality of Life-BREF (WHOQOL-BREF) and a questionnaire inquiring about the relatives' utilisation of various sources of information and help throughout the course of the illness. Results: Siblings reported less contact to the patients compared to the two other groups. However, their subjective burden was comparable to that Of Spouses, who were the group with the highest amount of contact. Siblings' quality of life showed by far less impairment than that of spouses and parents. They reported significantly less utilisation of any source of information and help and were far less likely to be invited to the group for relatives. Conclusions: Siblings of patients with schizophrenia are a particularly neglected group regarding support aimed at relatives. They are heavily distressed, yet there is little offer of professional support for them. It seems indicated to draw increased attention to this specific group of relatives.

Unrecognized attention-deficit hyperactivity disorder in adults presenting for outpatient psychotherapy

Ratey, J. J., Greenberg, M. S., Bemporad, J. R., & Lindem, K. J. (1992)

Adult patients with significant childhood and current symptoms of attention-deficit hyperactivity disorder (ADHD), but whose ADHD had not been previously recognized, were evaluated by three clinical consultants working with diverse referral populations. These 60 adults shared common characteristics of physical and mental restlessness, impulsivity, disabling distractibility, low self-esteem, self-loathing, and a gnawing sense of underachievement. Specific learning or behavior problems were often present. These patients were chronically disaffected. The diagnosis of ADHD appeared to be missed because these individuals presented with atypical symptoms or had found ways to compensate for their deficits. Descriptive generalizations are offered concerning their coping strategies. These adults had sought previous psychiatric care for non-ADHD symptoms but had numerous unsuccessful treatment attempts. Most patients had been treated for mood or anxiety disorders. Traditional defense analysis had little beneficial effect and aggravated problems of self-esteem; modifications of the psychotherapeutic process are recommended. In open clinical trials without formal measures, the majority of such patients appeared to respond to low doses of antidepressants (i.e., desipramine 10-30 mg daily) and seemed to lose the therapeutic effect at higher antidepressant doses.

Upp till 18 – fakta om barn och ungdom

BR Barnombudsmannen rapporterar (2010)

Beskriver barns levnadsförhållanden i siffror, generellt och över tiden. Här finns uppgifter om bl.a. barns hälsa, situationen i förskolan och skolan, fridtidsvanor och familjeförhållanden. Ett särskilt kapitel behandlar barn i utsatta situationer.

Lyfter fram skillnader mellan olika grupper barn beroende på exempelvis ålder, kön, ursprung och familjesituation. Även förändringar över tid följs upp.

Uppdrag om förslag till försöksverksamhet med samordnare för barn och unga med funktionsnedsättning

Regeringen (S2012/4967/FST). (2012)

Socialstyrelsen får i uppdrag att genomföra en kartläggning av landstingens användning av anlagsmedel för rådgivning och annat personligt stöd enligt lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Socialstyrelsen ska även föreslå en försöksverksamhet med samordnare för barn och unga med funktionsnedsättning.

Vidare får Socialstyrelsen i uppdrag att genomföra en förstudie om hur information om samhällets stöd till barn med funktionsnedsättning på bästa sätt görs tillgänglig för målgruppen.

Uppdraget ska redovisas till Regeringskansliet (Socialdepartementet) senast den 18 januari 2013.
Socialstyrelsen får under 2012 använda högst 1 miljon kronor för att genomföra uppdraget.

The Delivery of Public Health Interventions via the Internet: Actualizing Their Potential

Bennett, GG., & Glasgow, RE. (2009)

The Internet increasingly serves as a platform for the delivery of public health interventions. The efficacy of Internet interventions has been demonstrated across a wide range of conditions. Much more work remains, however, to enhance the potential for broad population dissemination of Internet interventions. In this article, we examine the effectiveness of Internet interventions, with particular attention to their dissemination potential. We discuss several considerations (characterizing reach rates, minimizing attrition, promoting Web site utilization, use of tailored messaging and social networking) that may improve the implementation of Internet interventions and their associated outcomes. We review factors that may influence the adoption of Internet interventions in a range of potential dissemination settings. Finally, we present several recommendations for future research that highlight the potential importance of better understanding intervention reach, developing consensus regarding Web site usage metrics, and more broadly integrating Web 2.0 functionality.

The desire for control: Negotiating the arrangement of help for older people in Sweden

Dunér, A., & Nordström, M. (2010)

The interface between formal (public) and informal help for older people is unclear and subject to change in many welfare states. Our aim in this study was to contribute to increased understanding of the experiences of older people, their next of kin, and the care managers from the municipalities in the process of negotiating help in the everyday lives of older people who can no longer manage on their own. We took a qualitative approach, using qualitative interviews as the main data collection method. The results revealed that the different actors had contrary interests that made it difficult for all parties to be content with the outcome of the negotiations. The everyday lives of dependent older people and their next of kin are strongly affected by the conditions of formal eldercare.

The development of social strengths in children with cerebral palsy

Adolfsson M. (2014)

The study by Tan et al. is of interest because it shows that children′s development is not necessarily delayed because of disability, specifically cerebral palsy (CP).[1] CP is one of the most common childhood-onset disabilities and a condition frequently researched. PubMed, for example, reports 13 885 hits for CP compared with conditions such as developmental delay (6079) and myelomeningocele (602). As CP causes activity limitations, which can lead to restrictions in socially or culturally influenced areas of life, the study by Tan et al. provides insights into the social strengths that children with CP have. The results, indicating that many of the children diagnosed with CP can develop to the same level of social participation as children without disability (even though it may take more time), should have a positive impact on the expectations of their caregivers and families. Hopefully adults might increase their efforts to teach children with disabilities to interact with peers instead of mostly communicating with adults.[2]

The construct of participation has various interpretations and the rating of participation is controversial. This study aimed to address 'performance of social participation', from the perspective of socialization including interrelationships, play and leisure time; coping rated with the Vineland Adaptive Behavior Scale; and social function rated with Pediatric Evaluation of Disability Inventory. In the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY),[3] participation is defined as 'involvement in a life situation'. It includes two aspects: to attend activities, i.e. be there, and to experience engagement while being there.[4] The ratings reported in this study reflect the abilities needed for social interactions, not necessarily how a child carries out the interactions in various life situations. The ratings are in accordance with how capacity is rated using the ICF-CY qualifiers, but does not reflect the children′s attendance or engagement. Therefore, the children′s performance of social participation is not fully established.

The Tan et al. study has several implications for clinical practice. For example, doing and being with others, which are elements of social participation, facilitate learning and development and should be considered by the adults who are around children with disabilities.[5, 6] Child participation, as a determinant of well-being and life satisfaction, may also decrease mental health problems.[7] In addition to the abilities needed for social interactions, social participation includes an experience of belonging and inter-subjective interaction that leads into acts of acknowledgment.[8] Because adults provide 'scaffolds' for the experiences of children with disabilities, parents and teachers have the responsibility to encourage the children to start interacting with peers and to introduce them to potential friends. The results reported in this study in terms of the development of children's abilities for interactions, should influence the adults' attitudes to the children's social roles in a positive way.

When receiving support from adults, it is likely that the children's understanding of and adaption to social demands improve. For children with CP, participation restrictions are most often associated with their physical impairments related to environmental barriers, such as reduced access to venues and events.[9, 10] However, negative social attitudes to disability may also constitute barriers to participation. As children with disabilities attend community activities less frequently than typically developing children,[11] adults must make efforts to introduce the children to such activities in addition to introducing them to those peers sharing the activity.

For persons with severe CP or persons with additional intellectual disability, the result of the study shows there is no specific age where development ceases. This should be seen as a promising finding that should encourage parents and professionals to continue to stimulate social development across ages.

In this study, developmental trajectories were stratified by level of gross motor functioning. For future research, the authors note the need for enhanced insight into the additional determinants of social participation development, such as CP characteristics and contextual factors. Since manual abilities are important for diverse activities, communication included, should the developmental trajectories also be stratified by the children's level of fine motor functioning?

The developmental status of family therapy in family psychology intervention science

Alexander JF, Sexton TL, Robbins MS. (2002)

The goal of this chapter is to map the developmental trajectory of family therapy in family psychology intervention science (FT-FPIS) from its early roots to its current status. The authors also hope to provide a perspective on its developmental process with an eye toward future challenges. Four key elements in the developmental evolution of FT-FPIS are discussed: science, the theory and techniques of family therapy, core principles in basic psychology, and the broader cultural and sociopolitical contexts in which FT-FPIS has evolved. In addition, the emergence of family-based empirically supported treatments and family-based empirically supported treatment as an intervention science are discussed.

The distribution of the common mental disorders: social inequalities in Europe

Fryers, T., Melzer, D., Jenkins, R., & Brugha, T. (2005)

Background
The social class distribution of the common mental disorders (mostly anxiety and/or depression) has been in doubt until recently. This paper reviews the evidence of associations between the prevalence of the common mental disorders in adults of working age and markers of socio-economic disadvantage.

Methods
Work is reviewed which brings together major population surveys from the last 25 years, together with work trawling for all European population studies. Data from more recent studies is examined, analysed and discussed. Because of differences in methods, instruments and analyses, little can be compared precsiely, but internal associations can be examined.

Findings
People of lower socio-economic status, however measured, are disadvantaged, and this includes higher frequencies of the conditions now called the 'common mental disorders' (mostly non-psychotic depression and anxiety, either separately or together). In European and similar developed populations, relatively high frequencies are associated with poor education, material disadvantage and unemployment.

Conclusion
The large contribution of the common mental disorders to morbidity and disability, and the social consequences in working age adults would justify substantial priority being given to addressing mental health inequalities, and deprivation in general, within national and European social and economic policy.

The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities

Stephenson, J. (2007)

Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.

The effect of peer bereavement support groups on the selfesteem, depression, and problem behavior of parentally bereaved children

Huss, S.N. (1997)

Akad. Avh.

The purpose of this research was to examine the effects of peer bereavement support groups for parentally bereaved children, specifically in the areas of self-esteem, depression, and behavior. The sample was drawn from middle school students in a suburban school district who have experienced the death of a parent sometime during their life. Seventeen students were assigned to four groups. Pretesting and posttesting were done utilizing the Piers-Harris Self-Concept Scale, the Child Behavior Checklist (which includes a Teacher Report Form and a Youth Report Form), the Children's Depression Scale, and a Support Group Rating Scale to measure if participation affected sense of isolation, contributed to normalizing the death experience, and provided a comfortable environment in which to practice newly acquired coping skills. The posttest data from all but the Support Group Rating Scale was analyzed using a two-way analysis of variance (ANOVA). The Support Group Rating Scale was analyzed by comparing percentages of responses in the pretest and posttest data. The Support Group Rating Scale responses were also analyzed using nonparametric tests. The postintervention statistical analysis failed to show any statistically significant effect on any of the hypotheses except one item on the Support Group Rating Scale. This item (13) death with a participant's belief about his or her ability to cope with loss. Information evaluation of the Support Group Rating Scale and the evaluations indicate positive effect. Recommendations based on results are discussed.

The effect of social relationships on psychological well-being: Are men and women really so different?

Umberson, D. Meichu, C., House, J., Hopkins, K., & Slaten, E. (1996)

We assess evidence for gender differences across a range of relationships and consider whether the form and quality of these relationships affect the psychological functioning of men and women differently. Data from a national panel survey provide consistent evidence that men's and women's relationships differ. However, we find little evidence for the theoretical argument that women are more psychologically reactive than men to the quality of their relationships: Supportive relationships are associated with low levels of psychological distress, while strained relationships are associated with high levels of distress for women and for men. However, if women did not have higher levels of social involvement than men, they would exhibit even higher levels of distress relative to men than they currently do. We find little evidence for the assertion that men and women react to strained relationships in gender-specific ways--for example, with alcohol consumption versus depression.

The effect of social support on mental and behavioral outcomes among adolescents with parents with HIV/AIDS

Lee SJ, Detels R, Rotheram-Borus MJ, Duan N. (2007)

OBJECTIVES: We examined the associations between social support and mental and behavioral outcomes among adolescents whose parents were infected with or died of HIV/AIDS. METHODS: Families (parents who were HIV infected and their adolescent children) were randomly assigned to a coping skills intervention or a standard care group. After completing the intervention, the parents and adolescents were assessed for 2 years. RESULTS: Adolescents who had more social support providers reported significantly lower levels of depression and fewer conduct problems; adolescents who had more negative influence from role models reported more behavior problems. Reductions in depression, multiple problem behaviors, and conduct problems were significantly associated with better social support. CONCLUSIONS: Our findings underscore the complex relations between social support and mental and behavioral outcomes among adolescents affected by HIV/AIDS. Future prevention programs must focus on increasing social support to reduce negative outcomes among adolescents affected by HIV/AIDS as well as the need to reduce influence from negative role models.

The effect of social support on mental and behavioral outcomes among adolescents with parents with HIV/AIDS

Lee, S-J., Detels, R., Rohtheram-Borus, M.J. & Duan, N. (2007)

Abstract
OBJECTIVES:
We examined the associations between social support and mental and behavioral outcomes among adolescents whose parents were infected with or died of HIV/AIDS.
METHODS:
Families (parents who were HIV infected and their adolescent children) were randomly assigned to a coping skills intervention or a standard care group. After completing the intervention, the parents and adolescents were assessed for 2 years.
RESULTS:
Adolescents who had more social support providers reported significantly lower levels of depression and fewer conduct problems; adolescents who had more negative influence from role models reported more behavior problems. Reductions in depression, multiple problem behaviors, and conduct problems were significantly associated with better social support.
CONCLUSIONS:
Our findings underscore the complex relations between social support and mental and behavioral outcomes among adolescents affected by HIV/AIDS. Future prevention programs must focus on increasing social support to reduce negative outcomes among adolescents affected by HIV/AIDS as well as the need to reduce influence from negative role models.

The Effect of Telephone Support Groups on Costs of Care for Veterans With Dementia

Wray LO, Shulan MD, Toseland RW, Freeman KE, Vasquez BE, Gao J. (2010)

Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a manualized program of education and support designed for caregivers of veterans with moderate-to-severe dementia. One hundred fifty-eight spousal caregivers were randomly assigned to either the ten 1-hr sessions of TEP or the usual care (UC). Health care utilization and cost data were extracted from veterans Information System Technology Architecture databases and included outpatient, inpatient, and nursing home data within the VA. Results: Total health care cost data showed a significant (p = .039) average cost savings of $2,768 per patient at 6 months for TEP as compared with UC, but these were not maintained at 1 year. All costs included in the total costs measure contributed to this difference. Inpatient, outpatient, and nursing home costs were all assessed separately, but only nursing home costs reached significance (p = .009), with a savings of $1,057 per patient at 6 months. Implications: The TEP caregiver intervention resulted in short-term cost savings for veteran care recipients. Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes.

The Effective Family Program: Preventative Services for the Children of Mentally Ill Parents in Finland

Solantaus, T. & Toikka, S. (2006)

The Effective Family Programme was initiated in Finland in 2001 to provide methods for health and social services to support families and children of mentally ill parents. The methods are implemented and clinicians are trained in psychiatric services and primary health care. The methods include the Beardslee Preventive Family Intervention, a parent-focused Let's Talk about Children Discussion and the Network Meeting. The Effective Family Programme represents large-scale implementation of a promotive and preventative child-centred approach in adult psychiatry. The first five years have been successful. Two thirds of health districts have initiated training. However, big challenges lie ahead. While the work was initiated in psychiatric services, it needs to be extended to primary health care and social services as well. Institutionalisation of the methods is still in progress, as well as incorporation of the work into the basic training of all mental health professionals.

The effectiveness of family therapy and systemic interventions for child-focused problems

Carr A. (2009)

This review updates a similar paper published in the Journal of Family Therapy in 2001. It presents evidence from meta-analyses, systematic literature reviews and controlled trials for the effectiveness of systemic interventions for families of children and adolescents with various difficulties. In this context, systemic interventions include both family therapy and other family-based approaches such as parent training. The evidence supports the effectiveness of systemic interventions either alone or as part of multimodal programmes for sleep, feeding and attachment problems in infancy; child abuse and neglect; conduct problems (including childhood behavioural difficulties, ADHD, delinquency and drug abuse); emotional problems (including anxiety, depression, grief, bipolar disorder and suicidality); eating disorders (including anorexia, bulimia and obesity); and somatic problems (including enuresis, encopresis, recurrent abdominal pain, and poorly controlled asthma and diabetes).

The effectiveness of home-based individual tele-care intervention for stroke caregivers in South Korea

Kim SS, Kim EJ, Cheon JY, Chung SK, Moon S, Moon KH. (2012)

Purpose:  The purpose of this study was to develop effective intervention programmes that can reduce family caregiver burden as they provide care to stroke patients so that family caregivers can adapt to and deal with the new circumstances from the early stages of stroke. We also intended to verify the effectiveness of the developed programme.

Methods:  This study employed a quasi-experimental design with a repeated-measures analysis. We included five hospitals specialized in stroke care in Seoul Metropolitan areas. Seventy-three patients from these hospitals agreed to participate in this study.

Results:  The score of family caregiver burden decreased by 8.07 (±18.67) in the experimental group and increased by 1.65 (±7.47) in the control group, which was a significant difference (t = 2.257, P = 0.027) between pre- and post-intervention. The family caregiver burden of experimental group was significantly lower than the control group (F = 3.649, P = 0.033).

Conclusions:  The home-based individual tele-care intervention, in addition to the hospital-based group programme, was cost-effective and supportive in reducing family caregivers' burden by providing relevant information for their needs in timely manner.

The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: A quasi-experimental study

Chiang L-C, Chen W-C, Dai Y-T, Ho Y-L. (2012)

Background: Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. Objective: To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. Design: This is a quasi-experimental study design. Methods: Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Results: Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function—Relationships between family and subsystems and Relationships between family and society were improved in the experimental group compared to the comparison group, but Relationships between family and family members was not different. Conclusions: The results provide evidence that telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first 30 days at home after heart failure patients are discharged from the hospital. Telenursing specialists cared caregivers with the concepts of providing transitional care to help them successful cross the critical transition stage.

The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: A quasi-experimental study

Chiang L-C, Chen W-C, Dai Y-T, Ho Y-L. (2012)

Background: Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. Objective: To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. Design: This is a quasi-experimental study design. Methods: Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Results: Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function—Relationships between family and subsystems and Relationships between family and society were improved in the experimental group compared to the comparison group, but Relationships between family and family members was not different. Conclusions: The results provide evidence that telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first 30 days at home after heart failure patients are discharged from the hospital. Telenursing specialists cared caregivers with the concepts of providing transitional care to help them successful cross the critical transition stage.

The effects of child abuse and exposure to domestic violence on adolescent internalizing and externalizing behavior problems

Moylan, C.A., Herrenkohl, T.I., Sousa, C., Tajima, E.A., Herrenkohl, R.C., & Russo, M.J. (2010)

This study examines the effects of child abuse and domestic violence exposure in childhood on adolescent internalizing and externalizing behaviors. Data for this analysis are from the Lehigh Longitudinal Study, a prospective study of 457 youth addressing outcomes of family violence and resilience in individuals and families. Results show that child abuse, domestic violence, and both in combination (i.e., dual exposure) increase a child's risk for internalizing and externalizing outcomes in adolescence. When accounting for risk factors associated with additional stressors in the family and surrounding environment, only those children with dual exposure had an elevated risk of the tested outcomes compared to non-exposed youth. However, while there were some observable differences in the prediction of outcomes for children with dual exposure compared to those with single exposure (i.e., abuse only or exposure to domestic violence only), these difference were not statistically significant. Analyses showed that the effects of exposure for boys and girls are statistically comparable.

The effects of family therapies for adolescent delinquency and substance abuse: a meta-analysis

Baldwin SA, Christian S, Berkeljon A, Shadish WR. (2012)

This meta-analysis summarizes results from k = 24 studies comparing either Brief Strategic Family Therapy, Functional Family Therapy, Multidimensional Family Therapy, or Multisystemic Therapy to either treatment-as-usual, an alternative therapy, or a control group in the treatment of adolescent substance abuse and delinquency. Additionally, the authors reviewed and applied three advanced meta-analysis methods including influence analysis, multivariate meta-analysis, and publication bias analyses. The results suggested that as a group the four family therapies had statistically significant, but modest effects as compared to treatment-as-usual (d = 0.21; k = 11) and as compared to alternative therapies (d = 0.26; k = 11). The effect of family therapy compared to control was larger (d = 0.70; k = 4) but was not statistically significant probably because of low power. There was insufficient evidence to determine whether the various models differed in their effectiveness relative to each other. Influence analyses suggested that three studies had a large effect on aggregate effect sizes and heterogeneity statistics. Moderator and multivariate analyses were largely underpowered but will be useful as this literature grows.

The effects of family therapies for adolescent delinquency and substance abuse: a meta-analysis

Baldwin SA, Christian S, Berkeljon A, Shadish WR. (2012)

This meta-analysis summarizes results from k = 24 studies comparing either Brief Strategic Family Therapy, Functional Family Therapy, Multidimensional Family Therapy, or Multisystemic Therapy to either treatment-as-usual, an alternative therapy, or a control group in the treatment of adolescent substance abuse and delinquency. Additionally, the authors reviewed and applied three advanced meta-analysis methods including influence analysis, multivariate meta-analysis, and publication bias analyses. The results suggested that as a group the four family therapies had statistically significant, but modest effects as compared to treatment-as-usual (d = 0.21; k = 11) and as compared to alternative therapies (d = 0.26; k = 11). The effect of family therapy compared to control was larger (d = 0.70; k = 4) but was not statistically significant probably because of low power. There was insufficient evidence to determine whether the various models differed in their effectiveness relative to each other. Influence analyses suggested that three studies had a large effect on aggregate effect sizes and heterogeneity statistics. Moderator and multivariate analyses were largely underpowered but will be useful as this literature grows.

The effects of general case training of manding responses on children with severe disabilities

O'Neill RE, Faulkner C, Horner RH. (2000)

Families, applied researchers, and teachers and support providers continue to be interested in effective strategies for teaching generalized repertoires of communicative skills to learners with severe disabilities. The present study assessed the effects of a general case training procedure in establishing manding or requesting responses by three students, aged 5–10 yrs old, with severe disabilities across a range of settings and situations. The data indicated that the general case approach was successful in establishing generalized manding for all three students. The limitations of the study and the implications of these results for future research and application are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

The effects of music therapy-based bereavement groups on mood and behavior of grieving children: a pilot study

Hilliard, R.E. (2001)

The purpose of this study was to measure the effects of music therapy-based bereavement groups on mood and behavior of grieving children. Eighteen subjects were assigned to one of two groups: experimental (8 sessions of group music therapy) or control (no group music therapy). All subjects participated in a battery of psychometric tests which measured behavior, mood, and grief symptoms for both pretests and posttests. Statistical analysis indicated a significant difference among subjects in the experimental group for the Behavior Rating Index for children in the home environment and the Bereavement Questionnaire for Parents/Guardians. Although there were no statistically significant differences,mean scores on the Depression Self-Rating Index and the Behavior Rating Index for children in the school environment of the experimental group dropped following treatment. The investigator concluded that participation in music therapy based bereavement groups served to reduce grief symptoms among the subjects as evaluated in the home. Teacher and self-evaluations were less conclusive. Further research studying the effects of music therapy on grieving children is recommended.

The effects of Orff-based music therapy and social work groups on childhood grief symptoms and behaviors

Hilliard, R.E. (2007)

This study evaluated and compared the effects of Orff-based music therapy, social work, and wait-list control groups on behavioral problems and grief symptoms of bereaved school-aged children. Social work and music therapy sessions were provided weekly for one hour over an eight-week period. Participants (N = 26) attended three different public elementary schools, and each school was randomly assigned to one of the conditions. Pre and posttest measures consisted of the Behavior Rating Index for Children (BRIC) and the Bereavement Group Questionnaire for Parents and Guardians (BP). The BRIC measured behavioral distress and the BP measured grief symptoms prior to and following participation in the assigned conditions. Statistical analyses indicated that participants in the music therapy group significantly improved in the behaviors and grief symptoms, and those in the social work group experienced a significant reduction in their behavioral problems but not their grief symptoms. Participants in the wait-list control group made no significant improvements in either their grief symptoms or behavioral problems. A reduction in behavioral distress as measured by the BRIC and a reduction in grief symptoms as measured by the BP is the most desired outcome. This study supports the use of Orff-based music therapy interventions for bereaved children in a school-based grief program. Recommendations for future research are included.

The effects of parental unresolved trauma on second generation Cambodian Adolescents

Muong, S. (2009)

In the Holocaust literature, considerable attention has been given to the psychological impact of Holocaust survivors' trauma on their offspring. There is some evidence to show that parenting styles and parent-child communication regarding the Holocaust are important mechanisms through which survivors' trauma affects the psychological adjustment of their offspring. The present study extends this work to a Cambodian context in focusing on intergenerational effects of trauma stemming from the Khmer Rouge regime. Specifically, the effects of parental unresolved trauma, in terms of the mother's PTSD symptoms, on second generation Cambodian adolescents were examined. Extrapolating from the findings in the Holocaust literature on second generation effects of trauma, it was hypothesized that the severity of the mother's trauma symptoms stemming from the Khmer Rouge regime would be predictive of her child's level of psychological distress, and that this relationship would be mediated by parenting style and parent-child communication. It was also predicted that the child's level of bicultural integration would serve as a protective factor in moderating the impact of the mother's trauma such that a child with a higher level of bicultural integration would be less negatively psychologically affected.

The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology

Anda RF, Felitti VJ, Bremner JD, Walker JD, Whitfield C, Perry BD, et al. (2006)

The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology .
Anda R.F., Felitti V.J., Bremner J.D., Walker J.D., Whitfield C., Perry B.D., Dube S.R. & Giles W.H. ( 2005 ) European Archives of Psychiatry and Clinical Neuroscience , ePub, posted online 29 November 2005 .

Background Childhood maltreatment has been linked to a variety of changes in brain structure and function and stress–responsive neurobiological systems. Epidemiological studies have documented the impact of childhood maltreatment on health and emotional well-being.

Methods After a brief review of the neurobiology of childhood trauma, we use the Adverse Childhood Experiences (ACE) Study as an epidemiological 'case example' of the convergence between epidemiological and neurobiological evidence of the effects of childhood trauma. The ACE Study included 17 337 adult HMO (Health Maintenance Organization) members and assessed eight adverse childhood experiences (ACEs) including abuse, witnessing domestic violence, and serious household dysfunction. We used the number of ACEs (ACE score) as a measure of cumulative childhood stress and hypothesized a 'dose–response' relationship of the ACE score to 18 selected outcomes and to the total number of these outcomes (comorbidity).

Results Based upon logistic regression analysis, the risk of every outcome in the affective, somatic, substance abuse, memory, sexual, and aggression-related domains increased in a graded fashion as the ACE score increased (P < 0.001). The mean number of comorbid outcomes tripled across the range of the ACE score.

Conclusions The graded relationship of the ACE score to 18 different outcomes in multiple domains theoretically parallels the cumulative exposure of the developing brain to the stress response with resulting impairment in multiple brain structures and functions.

The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology

Anda RF, Felitti VJ, Bremner JD, Walker JD, Whitfield C, Perry BD, et al. (2006)

Background

Childhood maltreatment has been linked to a variety of changes in brain structure and function and stress-responsive neurobiological systems. Epidemiological studies have documented the impact of childhood maltreatment on health and emotional well-being.

Methods

After a brief review of the neurobiology of childhood trauma, we use the Adverse Childhood Experiences (ACE) Study as an epidemiological "case example" of the convergence between epidemiologic and neurobiological evidence of the effects of childhood trauma. The ACE Study included 17,337 adult HMO members and assessed 8 adverse childhood experiences (ACEs) including abuse, witnessing domestic violence, and serious household dysfunction. We used the number of ACEs (ACE score) as a measure of cumulative childhood stress and hypothesized a "dose-response" relationship of the ACE score to 18 selected outcomes and to the total number of these outcomes (comorbidity).

Results

Based upon logistic regression analysis, the risk of every outcome in the affective, somatic, substance abuse, memory, sexual, and aggression-related domains increased in a graded fashion as the ACE score increased (P < 0.001). The mean number of comorbid outcomes tripled across the range of the ACE score.

Conclusions

The graded relationship of the ACE score to 18 different outcomes in multiple domains theoretically parallels the cumulative exposure of the developing brain to the stress response with resulting impairment in multiple brain structures and functions.

The Enhancing Connections Program: Pilot study of a cognitive behavioral intervention for mothers and children affected by breast cancer

Lewis, F.M., Casey, S.M., Brandt, P. A., Shands, M.E., & Zahlis, E.H. (2006)

In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial.

The enhancing connections program: Pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer

Lewis FM, Casey SM, Brandt PA, Shands ME, Zahlis EH (2006)

In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial

The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology

Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. (1993)

BACKGROUND: In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. PURPOSE: We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included. METHODS: The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity. RESULTS: The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe. CONCLUSIONS: These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.

The evaluation of a learner-centred training programme for spouses of adults with chronic aphasia using qualitative case study methodology

Sorin-Peters R. (2004)

Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.

The evaluation of a learner-centred training programme for spouses of adults with chronic aphasia using qualitative case study methodology

Sorin-Peters R. (2004)

Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.

The existential life situations of spouses of persons with dementia before and after relocating to a nursing home

Høgsnes L, Melin-Johansson C, Norbergh KG, Danielson E. (2014)

OBJECTIVES: The aim was to describe the existential life situations of spouses
who care for persons with dementia, before and after relocation to nursing homes.
METHOD: This was a qualitative study among 11 spouses of persons with dementia,
recruited via purposeful sampling. Data were collected through interviews and
analysed with interpretive content analysis.
RESULTS: Before the relocation to nursing homes, the spouses' existential life
situations were characterized by feelings of shame and guilt, being isolated in
the home. Spouses were also exposed to psychological threats, physical violence,
and had feelings of placing one's own needs last. After the relocation, spouses
described feelings of guilt and freedom, living with grief and thoughts of death,
feelings of loneliness in the spousal relationship, and striving for acceptance
despite a lack of completion.
CONCLUSION: The existential life situation of spouses of persons with dementia is
about being in limit situations which changes when the ill person relocates to a
nursing home. This is important knowledge for health care staff to bear in mind
at nursing homes when encountering spouses.

The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality

Andersson Stefan, Erlingsson, Cristen, Magnusson Lennart, Hanson Elizabeth (2017)

Abstract [en]
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

The extended palliative phase of dementia: an integrative literature review

Hanson Elizabeth, Hellström, Amanda Sandvide Åsa, Jackson Graham A. (2018)

Abstract [en]

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

The Family Bereavement Program: efficacy evaluation of a theory-based prevention program for parentally bereaved children and adolescents

Sandler, I.N., Ayers, T.S., Wolchik, S.A., Tein, J., Kwok, Q., Haine, R.A., Twohey-Jacobs, J., Suter, J., Lin, K., Padgett-Jones, S., Weyer, J.L., Cole, E., Kriege, G. & Griffin, W. (2003)

This article presents an experimental evaluation of the Family Bereavement Program (FBP), a 2-component group intervention for parentally bereaved children ages 8-16. The program involved separate groups for caregivers, adolescents, and children, which were designed to change potentially modifiable risk and protective factors for bereaved children. The evaluation involved random assignment of 156 families (244 children and adolescents) to the FBP or a self-study condition. Families participated in assessments at pretest, posttest, and 11-month follow-up. Results indicated that the FBP led to improved parenting, coping, and caregiver mental health and to reductions in stressful events at posttest. At follow-up, the FBP led to reduced internalizing and externalizing problems, but only for girls and those who had higher problem scores at baseline.

The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives

Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin (2020)

Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives

Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin. (2020)

Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

Use of the pediatric symptom checklist to screen for psychosocial problems in pediatric primary care: A national feasibility study.

Jellinek MS, Murphy J, Little M, Pagano ME, Comer DM, Kelleher KJ. (1999)

Background

Routine use of a brief psychosocial screening instrument has been proposed as a means of improving recognition, management, and referral of children's psychosocial morbidity in primary care.

Objective

To assess the feasibility of routine psychosocial screening using the Pediatric Symptom Checklist (PSC) in pediatrics by using a brief version of the check-list in a large sample representative of the full range of pediatric practice settings in the United States and Canada. We evaluated large-scale screening and the performance of the PSC in detecting psychosocial problems by (1) determining whether the prevalence of psychosocial dysfunction identified by the PSC was consistent with findings in previous, smaller samples; (2) assessing whether the prevalence of positive PSC screening scores varied by population subgroups; and (3) determining whether the PSC was completed by a significant proportion of parents from all subgroups and settings.

Patients and Methods

Twenty-one thousand sixty-five children between the ages of 4 and 15 years were seen in 2 large primary care networks: the Ambulatory Sentinel Practice Network and the Pediatric Research in Office Settings network, involving 395 pediatric and family practice clinicians in 44 states, Puerto Rico, and 4 Canadian provinces. Parents were asked to complete a brief questionnaire that included demographic information, history of mental health services, the 35-item PSC, and the number of pediatric visits within the past 6 months.

Results

The overall prevalence rates of psychosocial dys-function as measured by the PSC in school-aged and preschool-aged pediatric outpatients (13% and 10%, respectively) were nearly identical to the rates that had been reported in several smaller samples (12%–14% among school-aged children and 7%–14% among preschoolers). Consistent with previous findings, children from low-income families were twice as likely to be scored as dysfunctional on the PSC than were children from higher-income families. Similarly, children from single-parent as opposed to those from 2-parent families and children with a past history of mental health services showed an elevated risk of psychosocial impairment. The current study was the first to demonstrate a 50% increase in risk of impairment for male children. The overall rate of completed forms was 97%, well within an acceptable range, and at least 94% of the parents in each sociodemographic subgroup completed the PSC form.

Conclusions

Use of the PSC offers an approach to the recognition of psychosocial dysfunction that is sufficiently consistent across groups and locales to become part of comprehensive pediatric care in virtually all out-patient settings. In addition to its clinical utility, the consistency and widespread acceptability of the PSC make it well suited for the next generation of pediatric mental health services research, which can address whether earlier recognition of and intervention for psychosocial problems in pediatrics will lead to cost-effective outcomes.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

User involvement in designing a web-based support system for young carers : inspiring views and systemic barriers

Elf, M. (2013)

The studies in this dissertation have their origin in the research project PS Young Support. This project aimed to develop and evaluate a web-based support system (WBSS) for young people living close to someone with mental illness. To make this support relevant, and to achieve legitimacy and trustworthiness it was found important to cooperate with prospective users in developing it through a participatory design (PD) process. The dissertation follows two lines of investigation. One of these relates to how PD can inspire new views on design, while the other is about barriers to involvement of users. Specifically, inspiring views aims at how a PD process with prospective users as co-designers has influenced the way we think about WBSSs. Moving on from the common idea of a WBSS as a stand-alone intervention, Studies I and II show that WBSSs can be used as a tool to reach real-life support. Earlier research suggests that online support is rarely the preferred support; the present research show that young carers viewed it as a starting point for reaching real-life contacts and real- life support. Furthermore, young people with poor mental health are more prone to seek support online compared with those with less poor mental health. Hence, a WBSS could serve as a means to capture the former group and offer them online support. At the same time it could serve as a tool for reaching real-life support and external services. In this way the WBSS could offer a help path to individuals in need of support. Study IV investigates meta design, i.e. how users have really used the WBSS and the conditions for redesign. The development WBSS and its implemented version are compared with respect to their intended use (thing design) and how they really were used (use design). The context of use was found to be critical, since data collected in an experimental setting may be misleading and not reflect real use. Consequently, natural settings are recommended for user feedback. The second line of investigation in this dissertation concerns systemic barriers including barriers to user influence. It is not common in PD to focus on the designers. However, Study II and III reveal two types of barriers, both of which are connected to the designers. They are "systemic" barriers as they are a part of the setting that constitutes design. They cannot really be avoided, just handled. The first barrier has to do with the fact that users and designers do not regularly share the same social conditions, and consequently that they have different assumptions, implying that they may have difficulties to understand each other. Assumptions of shared views and the fact that understanding is a process that takes time may increase the effect of this foundational difference. Study II reports crucial differences in the views of what the WBSS should support. The second barrier concerns the impact of deadlines on designers' attitudes to users' contributions. Study III reports that halfway through the design process, designers reorganized their work and put more effort into the act of producing an artefact. Along with this shift, designers' preferred type of knowledge seemed to change, from knowledge based on user experience to expert knowledge.

The genetics of addictions: uncovering the genes

Goldman, D., Oroszi, G., & Ducci, F. (2005)

The addictions are common chronic psychiatric diseases that today are prevented and treated using relatively untargeted and only partially effective methods. The addictions are moderately to highly heritable, which is paradoxical because these disorders require use; a choice that is itself modulated by both genes and environment. The addictions are interrelated and related to other psychiatric diseases by common neurobiological pathways, including those that modulate reward, behavioural control and the anxiety or stress response. Our future understanding of addictions will be enhanced by the identification of genes that have a role in altered substance-specific vulnerabilities such as variation in drug metabolism or drug receptors and a role in shared vulnerabilities such as variation in reward or stress resiliency.

Att leva med psykiska funktionshinder-livssituation och effektiva vård-och stödinsatser

Brunt D, Hansson L. (2005)

Den psykiatriska vården och det offentliga stödsystemet för personer med psykisk funktionsnedsättning är i dag huvudsakligen ett samhälls­baserat servicesystem med tyngdpunkt i öppna vårdformer. Det finns emellertid uppenbara brister i systemets förmåga att möta vård- och stödbehovet hos dessa personer, liksom det finns övergripande brister i deras livssituation i samhället som helhet. Trots omfattande reformer kännetecknas fortfarande situationen för personer med psykiska funktionshinder i många avseenden av diskriminering och andra former av stigmatisering samt ekonomisk, social och politisk marginalisering och maktlöshet. Upplevelser av bristande medinflytande och kontroll över den egna vård- och stödsituationen påverkar dem också negativt.

Trots svårigheter att implementera evidensbaserade och effektiva insatser samt starka vetenskapliga belägg för att de reformer som genomdrivits i syfte att förbättra livssituationen i många avseenden inte har nått målen, finns det ändå anledning till optimism. Det här är den andra reviderade upplagan av boken, och här redovisas rehabiliteringsinsatser och andra interventioner som visar att det finns effektiva sätt att förändra situationen.

Att leva med psykisk funktionsnedsättning vänder sig till studerande inom sociala eller vårdinriktade högskoleutbildningar, men också till personer inom vård- och stödverksamheter som i arbetet möter personer med psykiska funktionsnedsättningar.

Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom.

Riddersporre, B. (2003)

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Att möta familjer inom vård och omsorg.

Benzein, E., Hagberg, M., & Saveman, B.-I. (Eds.). (2012)

En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.

Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.

Att möta flyktingar

Angel, B., & Hjern , A. (2004)

Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.

Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.

En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.

Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.

Att möta och bemöta anhöriga i äldreomsorgen

Normann, M., & Fröling, K (2008)

Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.

Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.

Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .

Att pussla ihop ett liv : om samverkan

Swärd A-K., Franke M-L. (2007)

Den enda existerande bokenom samverkan från ett föräldraperspektiv! Den teoretiska delen om autism är mycket lättförståelig och problematiseringen utgår från FN:s regler om funtionshider som ett problem i relation till omgivningen. Texten föreslår ett förhållningssätt som bygger på samarbete kring barnets starka sidor. Boken granska också kritiskt kommunernas förmåga att organisera hjälp och stöd för de drabbade familjerna enligt LSS-lagstiftningen

Att släppa taget om den andre och att greppa tag om sig själv

Wiberg, Maria (2006)

Upplands Väsby kommun tillhör en av de få kommuner i landet som bedriver ett strukturerat
anhörigprogram. Trots att det funnits någon form av anhörigarbete i ca 15 år, de senaste 5 åren
med tydligare struktur, har verksamheten hittills inte dokumenterats.

Syftet med denna rapport är att ge en utförlig beskrivning av anhörigprogrammets innehåll,
struktur och förutsättningar. Rapporten vill också skapa en förståelse för den anhöriges
livssituation och behov av egen hjälp. "Vad familjen behöver är undervisning om drogen alkohol,
vilka problem det kroniska missbruket ger upphov till samt sjukdomen alkoholism. Familjen
behöver dessutom lära sig hur sjukdomssymtomen påverkar familjen. Familjen behöver även
hjälp med att kartlägga det egna beteendet för att förstå hur det kan överensstämma med, eller till
och med befrämja alkoholistens drickande. De måste också komma till insikt om sina egna
känslor för att realistiskt kunna förstå problemets dimensioner och vad som krävs av dem. Till
följd av detta måste de undersöka vilka alternativ de har att välja mellan för att lösa problemet.
Framför allt behöver familjemedlemmarna stöd och uppmuntran för att kunna leva sina egna liv
trots alkoholismen. Genom att göra det ökar, paradoxalt nog, chanserna att avbryta den
alkoholistiska processen" (Kinney o Leaton 1997).
Ytterligare ett syfte med rapporten är att mäta om programmet ökar den anhöriges psykiska
välbefinnande, och om programmet påverkar den anhörige beteendemönster och känslor i
relation till den beroende.
Metoden jag använt för att hitta svaren på den första frågan har varit att sammanställa det
material som finns runt de olika temana.
För att få svar på de två andra frågeställningarna har jag använt en självskattningsenkät. Dvs.
deltagarna har själva uppskattat sitt mående utifrån en enkät med 4 svarsalternativ. Mätningen har
skett vid tre tillfällen, före programmet, vid programmets slut och en månad efter programmets
slut. Antal deltagare i utvärderingen är 15 personer, uppdelat på tre olika anhörigprogram.
En svaghet med denna metod är att utvärderingen sträcker sig under en relativt kort tid. Från
första till sista mättillfället är det ca 12 veckor. Förändringsprocesser tar lång tid och för att få en
mer rättvis bild av programmets påverkan skulle en mätning efter ytterligare ett år behövas.
En ytterligare svaghet är att deltagarantalet i utvärderingen är litet. Det går därför inte att dra
några stora slutsatser av resultatet, utan snarare tendenser. Det är dock en god ansats till ett
fortsatt arbete med utvärdering av programmet. Självskattningsenkät har visat sig vara ett
fungerande kvalitetsmätningsinstrument.
Dispositionen på rapporten är följande: Del 1 innehåller den beskrivande delen av
anhörigprogrammet med en historisk tillbakablick. Del 2 är den utvärderande delen av rapporten,
där undersökningsmetoden och sammanställningen av enkätundersökningarna redovisas.
Resultaten visar att det psykiska välbefinnandet tydligt ökar för alla tre grupper över tid. Takten
för ökningen ser olika ut och det kan härledas till deltagarnas olika livssituationer under
programmet. Där deltagarna fortfarande lever med partner i ett aktivt missbruk är den anhöriges
förändring långsammare. Resultatet visar också att deltagarna upplever en förändring i huruvida
de påverkats av sin anhöriges missbruk i såväl känslor som beteendemönster. Denna förändring
är mindre samstämmig och visar ganska stora variationer i de olika grupperna.

Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar

Skerfving, Annemi (2005)

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar

Skerfving, A. (2005)

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Att tala samma språk. Gemensam struktur vid bedömning av vårdbidrag

Enström Öst C, Agdalen T, Aydin E, Josephson M, Mirjam W. (2013)

Syftet med studien är att pröva om struktur och språk enligt Klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY, kan användas vid handläggning av vårdbidragsärenden för att göra utredningar och beslut tydligare och mer enhetliga och därigenom förbättra rättssäkerheten. I tillämpningen av reglerna om vårdbidrag ska Försäkringskassan göra en individuell bedömning i varje enskilt ärende. Det finns också krav på likformighet och transparens i handläggningen. ICF-CY är utvecklat av Världshälsoorganisationen (WHO) och erbjuder ett universellt gemensamt språk för att underlätta dokumentation och kartläggning av barnets funktionsförmåga och hälsa i sin miljö.

Vårdbidraget är ett statligt stöd till föräldrar med barn som har en funktionsnedsättning. Syftet med vårdbidraget är att föräldrarna ska ha möjlighet att ge den tillsyn, vård och stöd som krävs för att barnet ska kunna utvecklas på bästa sätt.

Registeranalysen i rapporten visar på skillnader i vårdbidragets omfattning utifrån bland annat region, kön och mottagarens socioekonomiska tillhörighet. Tyvärr kan man inte säga om dessa skillnader är sakliga eller osakliga, det vill säga om de skillnader som observeras kan förklaras av barnens bedömda tillsyns- och vårdbehov.

Det finns inga uppgifter i register om grunderna för ett beviljat vårdbidrag, det vill säga vilken funktionsförmåga eller vilket tillsyns- och vårdbehov barnet har. I den här studien har information i 264 ärenden gällande förstagångsansökningar om vårdbidrag översatts till struktur och språk i ICF-CY. Rapporten redovisar det som finns skrivet om hur barnet fungerar i sin miljö när innehållet har översatts och tolkats.

När innehållet i utredningarna översätts, handlar merparten av utredningarna, både Försäkringskassans sammanfattningar och motiven för beslut som skickas till den sökande, om sådant som barnen kan göra och faktiskt gör, eller har svårigheter att utföra. Merparten av utredningarna berör aspekter på hur barnet genomför enstaka eller flera uppgifter och hur de hanterar krav medan endast ett fåtal utredningar handlar om hur barnet genomför dagliga sysslor och uppgifter som att ta hand om personliga föremål och att hjälpa andra.

Resultaten tyder på att en tillämpning av struktur och språk enligt ICF-CY i handläggningen av vårdbidrag skulle öka likformigheten, samtidigt som man skulle undvika att samla in irrelevant information och därigenom kunna spara tid i handläggningen. Om man klassificerar funktionsnedsättning på detta sätt, blir det också möjligt att dokumentera funktionsnedsättning i register på samma sätt som diagnos registreras idag, vilket underlättar utvärdering.

Att utveckla anhörigstöd

Genell Andrén K, Johansson L. (2008)

Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.

Att utveckla anhörigstöd

Matheny G. (2013)

Att utveckla anhörigstöd
Vilka är de personer som stöttar och vårdar en närstående, vilket stöd efterfrågar de och vad kan samhället och den enskilda arbetsplatsen erbjuda? Vilken värdegrund styr bilden av de anhöriga – ses de som en värdefull resurs eller är de en belastning i arbetet kring den närstående?

Ett sätt att uppfylla målen med gällande lagstiftning är att arbetsplatserna ska formulera rutiner för hur de ska stötta och samarbeta med anhöriga i det dagliga arbetet. Boken ger praktiska verktyg för hur man steg för steg, med de anhöriga själva som sakkunniga, kan utveckla arbetsplatsens anhörigstöd. Författaren beskriver den anhörigvänliga arbetsplatsen och ger ett konkret förslag till hur rutiner för anhörigstöd och anhörigsamverkan kan tas fram. Innehållet presenteras på ett lättillgängligt sätt och läsaren får många fallbeskrivningar och förslag till diskussionsämnen att utgå ifrån.

Att utveckla anhörigstöd vänder sig till arbetsgrupper/verksamheter inom vård och omsorg samt socialtjänst som vill utveckla arbetsplatsens anhörigstöd. Utvecklingsarbetet föreslås ske genom att arbetsgruppen möts vid ett antal reflektionsträffar kring bokens innehåll. Boken vänder sig både till baspersonal och ledare, och den kan dessutom utgöra ett handfast verktyg för anhörigombud och anhörigkonsulenter som utbildar och handleder arbetsgrupper inom området anhörigstöd.

Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp

Ekenberg, L. (2010)

Syftet med denna satsning på anhörigstöd var att pröva och utveckla en mo-dell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöri-ges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhe-tens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsam-mans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genom-fördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfäl-len: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt ef-ter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Lu-leågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med av-slappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upple-velse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarer-na i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mö-tet/samtalet som "kanske som det mest underskattade anhörigstödet" (Win-qvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i stör-re skala.

Att utveckla stödet till anhöriga : en kartläggning av anhörigstöd på Östermalm

Hjalmarson, I., Norman, E. (2012)

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Att utveckla stödet till anhöriga. En kartläggning av anhörigstöd på Östermalm

Hjalmarsson, Ingrid & Norman, Eva (2012)

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Att vara anhörig till en närstående med demenssjukdom. En jämförelse mellan storstad och landsbygd.

Forssell Ehrlich, K. (2015)

Anhörigas insatser för en demenssjuk familjemedlem är avsevärda och är en mycket stor
samhällsresurs. Flertalet studier kring anhörigas erfarenheter har genomförts i större städer och det är
brist på kunskap kring hur landsbygdens anhöriga upplever sin situation. Det övergripande syftet
med denna avhandling var att utveckla och fördjupa kunskapen om relationen mellan boplatsen, här
storstad och landsbygd, och anhörigas upplevelser av att ge omvårdnad till en närstående med
demenssjukdom. Avhandlingens två delstudier utgår från ett socialkonstruktionistiskt perspektiv där
människan anses konstruera sina liv både i samspel med andra och med platsen de bor på. Platsen är
inte endast ett geografiskt område utan även en plats bestående av sociala relationer. Anhöriga i
storstaden och på landsbygden antogs forma sina liv på olika sätt som kunde påverka situationen som
anhörigvårdare. Syftet med studie I var att beskriva och jämföra anhörigas reaktioner på att ge
omvårdnad till en närstående med demenssjukdom, i storstad och på landsbygd, samt att undersöka
sambanden mellan aspekter på vårdande och socio-demografiska faktorer. Den genomfördes som en
prospektiv tvärsnittsstudie med sammanlagt 102 (57 storstad+45 landsbygd) deltagare. Den svenska
versionen av The Caregiver Reaction Assessment Scale (CRA) användes och bestod av 27 positiva
och negativa påståenden fördelade inom fem delområden ("vårdar-tillfredställelse"; brist på
familjestöd; påverkan på ekonomi, hälsa och vardagsliv). Data analyserades med beskrivande statistik.
Student´s T-test användes för att undersöka skillnader, Chi-2-tester för proportioner och linjär
regressionsanalys användes för att undersöka sambanden mellan de fem delområdena och sociodemografiska
variabler. Syftet med studie II var att utveckla en fördjupad förståelse för anhörigas
förhållningssätt till sin situation, i storstad och på landsbygd, när en närstående drabbats av
demenssjukdom. Narrativa intervjuer genomfördes med sammanlagt 23 anhöriga (11 storstad+12
landsbygd). Frågorna berörde vardagsliv och arbete både nu, med en demenssjuk närstående, och
tidigare, samt boplatsens och det sociala livets betydelse. Intervjuerna analyserades utifrån en
hermeneutisk ansats. Resultatet från regressionsanalysen visade att vare sig boplats eller
utbildningsnivå hade något samband med hur anhöriga skattade sin situation (I). Flertalet anhöriga
både på landsbygden och i storstaden kände däremot en tillfredställelse med att kunna ta hand om sin
närstående trots att situationen hade stor påverkan på vardagslivet (I-II). De vuxna barnen upplevde en
konflikt mellan sina och den egna familjens behov och den sjuke förälderns omvårdnadsbehov (II)
som påverkade vardagslivet i högre utsträckning än vad det gjorde för de makar som vårdade sin
partner (I). Kvinnorna skattade en större påverkan på ekonomin och mer påverkan på vardagslivet än
männen. Men anhöriga på landsbygden tycktes få mer hjälp från familj och andra än de i storstaden
(I). Intervjustudien visade att de anhöriga på landsbygden tycktes ha en mer kollektiv syn på familjen
och parrelationen som kom till uttryck i en större acceptans för livets gång och behov av att bevara det
normala livet. Storstadens anhörigvårdare däremot tycktes ha en mer individualistisk syn, vilket kom
till uttryck i en större frustration över situationen mer präglad av pliktuppfyllelse (II). Det är
förmodligen är lika belastande vara anhörig till en närstående med demenssjukdom vare sig man bor i
storstaden eller på landsbygden. Samtidigt fanns det en variation av förhållningssätt till situationen
som anhörigvårdare, som påverkades av olika sättet att se sig på själv i förhållande till familjen och
parrelationen, vilket får implikationer för utformningen av stödinsatser.
Key words: dementia, family caregivers, qualitative research, narrative interviews, Caregiver Reaction
Assessment Scale (CRA), regression model, urban and rural areas, nursing

Att vara förälder till barn med ADHD.

Hellström A. (2007)

Broschyren ger en kortfattad introduktion till vad ADHD är, hur det kommer till uttryck i vardagen, vad vi vet om orsakerna, bemötande och förhållningssätt samt vilken behandling som finns att få.

Att vara förälder till barn med funktionsnedsättning – erfarenheter av stöd och av att vara professionell stödjare

Lindblad, B.-M. (2006)

Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd,
utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella
stödjare. Datainsamling har skett i form av berättande intervjuer med
39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män)
från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk
hermeneutisk metod.
Innebörder av att vara förälder till barn med funktionsnedsättning (studie I)
har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende
värde som en unik person och föräldrarna strävar efter att göra sitt
bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och
rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas
strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna
behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det
handlar om en strävan att möjliggöra för barnet att leva ett gott liv.
Innebörder av att få stöd av professionella (studie II) har tolkats som att
föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna
uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets
framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella,
för att kräva det stöd som föräldrarna anser att de och barnet behöver.
Innebörder av att vara professionell stödjare (studie III), består av att ha
personlig filosofi, som är integrerat i sättet att vara och handla som stödjare.
Det innebär att vara trygg i hoppet om att det alltid går att göra något för att
hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till för-
äldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att
uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta
har tolkats som en frihet från att vara bunden av byråkrati och prestige och en
möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och
föräldrar.
Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande
gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och
har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och
sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet
i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen
av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars
etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv.
Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande
relationer med andra.

Barn och unga i familjer med missbruk – vägledning för socialtjänsten och andra aktörer

Socialstyrelsen (2009)

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.

Barn och unga i familjer med missbruk: vägledning för socialtjänsten och andra aktörer

Socialstyrelsen (2009)

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.
Alla goda krafter behövs
De som möter föräldrar med missbruksproblem har ett ansvar för att försäkra sig om att barnen får adekvat stöd utifrån sina behov. Det är viktigt att yrkesverksamma inom missbruksvården särskilt uppmärksammar om det finns barn som påverkas av den vuxnas missbruksproblem. Men även de generella verksamheterna som riktar sig till alla barn och unga kan ha betydelse. Trygga och lyssnande vuxna i förskola, skola, fritidsverksamhet och föreningsliv kan bli viktiga stödjande personer och förebilder utanför familjen som kan få en avgörande positiv betydelse. De har också ett ansvar att anmäla till socialtjänsten om det finns oro för att barnet eller den unga far illa. Det är också viktigt att uppmuntra föräldrar att ansöka hos socialtjänsten om man bedömer att barnet eller den unga behöver mer stöd och hjälp.
Om socialtjänsten får en anmälan eller en ansökan, syftar en allsidig utredning, om barnets eller den ungas behov, familjens och nätverkets förutsättningar, till att komma fram till hur barnet eller den unga och familjen bäst ska kunna stödjas. Stödet kan ges inom socialtjänstens ram och av andra aktörer som har speciella verksamheter för dessa barn och unga. Flera ideella organisationer är aktiva på det här området.
Trots att de här barnen och ungdomarna har uppmärksammats särskilt i statliga utredningar och rapporter många gånger under de senaste decennierna, finns det mycket i det samlade stödet till dem som kan förbättras och samordnas. Ett bekymmer är att det saknas tillförlitlig forskning om effekterna av olika insatser.
En fördel med att det finns olika aktörer är att barn och unga i dessa familjer kan nås på olika sätt. Eftersom missbruksproblem fortfarande kan vara skambelagt drar sig många familjer för att söka hjälp. För en del kan det vara lättare att vända sig till en ideell organisation för hjälp och stöd än till myndigheter. Precis som när det gäller andra problem är det viktigt att det finns olika typer av stöd och hjälp till barn och unga som lever med missbruk i familjen.
Läsanvisning
Vägledningen vänder sig till såväl socialtjänsten som andra aktörer, som möter barn och unga i familjer med missbruk. De olika kapitlen har olika relevans för olika aktörer. Vissa upprepningar förekommer.
Kapitlet Att växa upp med missbruk i familjen ger en sammanfattning av vad man vet om omfattningen, konsekvenserna samt risk- och skyddsfaktorer. Det bör vara av intresse för alla läsare.
Kapitlet Att upptäcka att barn lever med missbruk i familjen riktar sig till alla instanser som på ett eller annat sätt kommer i kontakt med barn och unga och deras föräldrar. Det tar upp tecken på barns och ungas svårigheter, olika verksamheters ansvar, vikten av samverkan och anmälningsplikten.
Kapitlet Att bedöma barns och ungas behov riktar sig främst till socialtjänsten, men kan också vara av intresse för andra aktörer som information om socialtjänstens uppgift och utredning.
Kapitlet Stödinsatser handlar om betydelsen av helhetssyn och att insatserna behöver bygga på kunskap om risk- och skyddsfaktorer. Det ger också en beskrivning av olika stöd- och hjälpinsatser, inom socialtjänsten och i andra verksamheter.
I kapitlet Vilka insatser är effektiva? görs en kort genomgång av kunskapsläget när det gäller resultatet av olika insatser och metoder. Detta kapitel är relevant för alla aktörer.
I kapitlet Att dokumentera och följa upp insatser och verksamhet ges råd kring dokumentation och lokala uppföljningar. Syftet är att inspirera till att ständigt förbättra och utveckla den egna verksamheten och samtidigt successivt ge ett allt bättre kunskapsunderlag för valet av bästa möjliga insats för de barn och unga som behöver stöd och hjälp. Det riktar sig till alla utförare – såväl inom socialtjänsten som inom ideell verksamhet och hos andra huvudmän. Slutligen förs ett kortfattat resonemang om kostnadsaspekter av att satsa på stödinsatser för barn och unga vilkas föräldrar har missbruksproblem.

Barn och unga med medfödda funktionsnedsättningar – Behovsanalys inklusive resultat från Brukardialogberedning 3

Sand, C. (2013)

Målgruppen för behovsanalysen är barn och unga med medfödd funktionsnedsättning, som
har behov av planerade och från flera kompetensområden sammansatta åtgärder. Det vill säga
barn och unga som ingår i habiliteringens uppdrag. Exempel på några av de större grupper
som får insatser inom habiliteringen är cerebral pares, ryggmärgsbråck, muskelsjukdomar,
flerfunktionsnedsättning, utvecklingsstörning, missbildningssyndrom och autismspektrumtillstånd.
De behov som finns inom målgruppen är många gånger komplexa och flertalet har
behov av insatser från flera olika delar av hälso- och sjukvården men också av kommunen och
Försäkringskassan. Frågeställningar som behandlas i analysen är information och stöd,
tillgången till insatser, hjälpmedel och specialistläkare, intern och extern samverkan, fast
namngiven kontaktperson, vårdgaranti och likvärdig vård.
Utgångspunkten för svensk folkhälsopolitik och funktionshinderspolitik är principen om alla
människors lika värde och lika rätt, som även återfinns i barnkonventionen och i konventionen
om rättigheter för personer med funktionsnedsättning. Sedan 1997 finns en etisk plattform
med 3 grundprinciper som ska ligga till grund för prioriteringar inom hälso- och sjukvård i
Sverige, människovärdesprincipen, behovs- och solidaritetsprincipen och kostnadseffektivitetsprincipen.
I hälso- och sjukvårdslagen anges 4 prioriteringsgrupper inom
sjukvården, där vård av sjukdomar som utan behandling leder till varaktigt invalidiserade
tillstånd eller för tidig död och habilitering är högt prioriterat.
I nuläget saknas nationella riktlinjer för behovsgruppen. Vad gäller nationella kvalitetsregister
medverkar landstinget i CPUP, uppföljningsprogram av rörelseapparaten för barn och unga
med cerebral pares och i HabQ, kvalitetsregister för habilitering. HabQ startade som ett
kvalitetsregister för barn och unga med cerebral pares, 2011 inkluderades barn med autism.
Målet är att följa alla barn och ungdomar som får insatser genom habiliteringens verksamhet.
I landstinget finns vårdprocessprogram för ryggmärgsbråck och neuropsykiatri, barn och
unga.
Cirka 2 500 personer omfattas av habiliteringens insatser i länet, varav 1 600 är barn och
unga. Inom landstinget finns 3 enheter för barn- och ungdomshabilitering, vilka är olika
uppbyggda och ingår i närsjukvården i respektive länsdel. Det ökade inflödet av barn och
unga med neuropsykiatrisk problematik de senaste åren har inneburit ett ökat tryck på
habiliteringens verksamheter. Enligt verksamhetsföreträdare har det inneburit en viss
förskjutning av resurser till förmån för utredning och behandling inom neuropsykiatri, vilket
inneburit en viss undanträngningseffekt för övriga grupper inom habiliteringen. För att
hantera det ökade behovet av neuropsykiatrisk utredning och behandling har verksamheterna
även tagit till olika lösningar i samverkan med barn- och ungdomspsykiatrin i de tre
länsdelarna.
Barn- och ungdomshabiliteringen har under flera år haft brist på specialistläkare. Hösten 2012
genomförde länets barn- och ungdomshabiliteringar och barnkliniker en riskanalys gällande
bristen på specialistläkare inom barn- och ungdomsneurologi och habilitering. Riskanalysen
har bland annat lett till att 2 strategiska block för ST-läkare med inriktning neurologi inrättas
2014 som en gemensam satsning mellan habiliteringesenheterna och barnklinikerna.
8
Under våren 2013 genomförde brukardialogberedning 3 intervjuer med barn och unga med
medfödda funktionsnedsättningar samt deras föräldrar. Som förälder till ett barn med
komplexa behov är det viktigt att bli bemött på ett bra sätt i kontakterna med hälso- och
sjukvården och andra myndigheter. Det är viktigt att få tillgång till stöd och till relevant
information om diagnosen eller funktionsnedsättningen i ett tidigt skede. Det är också viktigt
att hela familjen har tillgång till olika former av stödinsatser under lång tid.
För många föräldrar tar det lång tid att vänja sig vid den nya situationen och man ägnar
mycket tid åt saker som normalt inte ingår i föräldrarollen. Det kan handla om att barnet långt
upp i ålder behöver lika mycket omsorg och passning som när han eller hon var nyfödd.
Mycket tid och pengar läggs på träning, anpassning av miljön eller att skjutsa till olika
specialaktiviteter. Oräkneliga timmar läggs på att samordna alla kontakter kring barnet med
hälso- och sjukvården, kommunen, assistenter, försäkringskassa och så vidare.
Behovet av habiliterande insatser och hjälpmedel är ofta stort hos barn och unga som har en
funktionsnedsättning. När det gäller habiliterande insatser upplever en del att dessa tenderar
att minska i takt med barnets ålder, trots att behovet är oförändrat. Många upplever även att
det är långa väntetider för utredningar. Flera synpunkter berör brister inom hjälpmedelsområdet.
Att det är långa leveranstider på nya hjälpmedel och att det tar tid att få hjälpmedel
reparerade. Man anser också att hjälpmedelssortimentet är begränsat och att systemet med
särskild prövning är krångligt och byråkratiskt. Ytterligare synpunkter handlar om bristande
tillgång till information om vilka insatser och hjälpmedel som finns att få. Många upplever att
de får söka information själva. Men det är inte lätt att leta efter information när man inte vet
vad man ska leta efter eller fråga om. Sökprocessen blir omständig och tidsödande.
Utbudet av habiliterande insatser och metoder och hjälpmedelssortiment kan se olika ut i olika
landsting och regioner. Något som de intervjuade upplever som orättvist och föräldrarna anser
att alla barn borde ha samma förutsättningar var i landet man än bor. Bristande tillgång till
specialistläkare upplevs som ett annat problem och flera uttrycker en oro för att deras barn
inte ska få tillgång till viktiga insatser som de har behov av.
Utifrån den etiska plattformen är barn och unga med medfödda funkitonsnedsättningar en
högt prioriterad grupp i samhället. Deras behov av god vård i hela vårdprocessen behöver
säkerställas för att minska risken för komplikationer och förbättra den långsiktiga prognosen
och därmed livskvaliteten för barnen.
De utvecklingsområden som identifierats i behovsanalysen finns inom områdena: Information
och stöd, Samverkan/samordning och kontinuitet och Tillgänglig, likvärdig och säker vård.

Barn och ungas hälsa, vård och omsorg

Socialstyrelsen (2013)

Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.

I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.

Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch

Barn och ungdomar med psykisk ohälsa – vem tar hand om dem?

Socialstyrelsen (2010)

På många håll saknas förebyggande och tidiga insatser för barn och ungdomar med psykisk ohälsa. Barnet riskerar att helt bli utan vård, vilket kan få livsavgörande konsekvenser. Anledningen till oklarheterna är att kommuner och landsting ger otydliga uppdrag eller inga uppdrag alls till verksamheterna.

Barn och ungdomar med rörelsehinder – deras uppfattningar om roller, relationer och aktiviteter

Skär, Lisa (2002)

Doktorsavhandling
Den forskning som hittills funnits vad gäller rörelsehindrade barn fokuserar nästan uteslutande på deras situation sett ur de vuxnas perspektiv. Men Lisa Skär tar sin utgångspunkt i att försöka förstå barnens och ungdomarnas värld utifrån deras eget perspektiv.
Det övergripande syftet med avhandlingen är att beskriva hur barn och ungdomar med rörelsehinder själva uppfattar sina roller, relationer och aktiviteter med jämnåriga och vuxna i olika miljöer.
Rörelsehindret i sig och olika miljöers otillgänglighet är två faktorer som försvårade för barnen och ungdomarna att delta i aktiviteter och därmed ha relationer med jämnåriga. Att använda rullstol eller kryckor är både tidskrävande och tar mycket energi av barnen - dessutom fungerar dessa hjälpmedel inte alltid i alla miljöer.
– Barn med rörelsehinder hinner inte alltid eller kan inte vara aktiva deltagare i olika aktiviteter. Samtidigt är det ofta är förutsättningen för att få kamrater, säger Lisa Skär.

Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter eller avlider

Socialstyrelsen (2013)

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter, eller avlider

Socialstyrelsen (2013)

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

Barn som anhöriga till flykting- föräldrar med post-traumatisk stress – en systematisk litteraturstudie Rapport 6 från projektet ”Barn som anhöriga” från CHESS, Stockholms universitet/Karolinska Institutet

Hjern Anders & Klöfvermark Josefin (2017)

Detta är den sjätte rapporten i projektet "Barn som anhöriga", som genomförs av CHESS vid Stockholms universitet/Karolinska Institutet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) på uppdrag av Socialstyrelsen. Inledningsvis ger rapporten en teoretisk översikt om barn som anhöriga till föräldrar med posttraumatisk stress. Därefter görs en systematisk granskning av den empiriska litteraturen om betydelsen av post-traumatisk stress hos flyktingföräldrar i exil för deras barns hälsa och välbefinnande.

Barn som anhöriga till patienter i vården – hur många är de? Nka Linnéuniversitetet Chess, Barn som anhöriga 2013:1.

Hjern A, Manhica H. (2013)

Den 1 januari 2010 infördes en ny lagstiftning angående hälso- och sjukvården ansvar att
ge information, råd och stöd till barn vars föräldrar har en allvarig psykisk eller fysisk
sjukdom inklusive missbruk, eller oväntat avlider. Den här rapporten syftar till att ge
övergripande bild av hur många barn som direkt berörs av denna nya lag.
Rapporten baseras i första hand på anonymiserade analyser av data om sluten vård på
sjukhus från Patientregistret under 1987–2008, och dödsfall i Dödsorsaksregistret under
1973–2008. Registerdata från Statistiska Centralbyrån har använts för att koppla föräldrar
till sina biologiska barn och definiera familjers sociala karaktäristika.
Av de barn som föddes 1987–89 hade 7,8 procent minst en förälder som vårdats inneliggande
på sjukhus på grund av psykisk sjukdom och/eller missbruk av alkohol eller
narkotika under barndomen, d v s innan de hade fyllt arton år. Psykisk sjukdom hos för-
äldern var den vanligaste orsaken som berörde 5,7 procent av barnen, medan alkoholmissbruk
berörde 2,5 procent och narkotikamissbruk 1,5 procent. Under ett enskilt år
handlar det om ca 26 000 barn som har minst en förälder som vårdas på sjukhus grund
av psykisk sjukdom eller missbruk.
Betydligt fler föräldrar har indikatorer på problem med alkohol och narkotika av mildare
grad. Om man också räknar in föräldrar som haft vårdkontakter i öppen vård på
sjukhus på grund av missbruk, eller har dömts i domstol på grund av rattfylleri eller narkotikabrott,
var det totalt 17,0 procent av barnen som berördes. Psykisk ohälsa hos föräldrar
som inte är så allvarlig att den leder till sjukhusvård är också relativt vanlig. I undersökningen
av levnadsförhållanden (ULF) 2007–11 svarade t ex 18,1 procent av föräldrar
till barn i åldern 10–18 år att de led av ängslan, ångest eller oro. Psykofarmakamedicinering
är en annan indikator på psykisk ohälsa hos föräldrar. Under ett enskilt genomsnittligt
år under perioden 2006–8 använde 10,7 procent av mödrar och 5,5 procent av fäder
till barn i åldern 1–18 år ett antidepressivt läkemedel.
Något riktigt bra mått på somatisk (=fysisk) sjukdom hos förälder som är så svår att
deras barn behöver information och/eller stöd finns inte i svenska register. I denna rapport
användes definitionen somatisk sjukdom utan missbruk hos föräldrar som var så
svår att den föranledde minst en veckas inneliggande vård på sjukhus, vilket 12,6 procent
av alla barn födda 1987–89 upplevde före sin artonårsdag. Många fler föräldrar har någon
form av kronisk sjukdom, 28,4 procent av föräldrar till barn i åldern 10–18 år i ULFundersökningen
2007–11 rapporterade t ex minst en kronisk sjukdom.
3,4 procent av alla barn födda 1973–89 hade minst en förälder som avlidit innan deras
artonårsdag. Under ett enskilt år är under perioden 2006–08 berördes ca 3 500 barn. 22
procent av de avlidna fäderna och 12 procent av de avlidna mödrarna hade indikatorer på
alkohol- och/eller narkotikamissbruk. Plötslig oväntad död hos en förälder orsakad av
självmord, våld eller olycka drabbade 600–650 barn varje år. Barn som drabbas av dödsfall
på grund av olyckor och våld hos föräldrar är ofta förskolebarn, medan andra typer av
dödsfall hos föräldrar framför allt drabbar barn i tonåren.
Missbruk och psykisk sjukdom är inte sällan en bidragande orsak till separation mellan
föräldrar. En konsekvens av detta är att många föräldrar som vårdas på sjukhus på grund
av dessa problem inte bor tillsammans med sina barn och att den förälder som bor tillsammans
med barnet ofta är ensamstående. Endast ungefär en tredjedel av fäder som
vårdas på sjukhus på grund av missbruk bor tillsammans med sina barn, mot ungefär
dubbelt så många mödrar.
6
Missbruk, sjukdom och dödsfall hos föräldrar drabbar framför allt barn som befinner
sig i en utsatt social position i det svenska samhället. Det är ungefär tre gånger så vanligt
att föräldrar i barnfamiljer med låg socio-ekonomisk position vårdas på sjukhus för någon
av dessa orsaker jämfört med föräldrar i barnfamiljer med hög socio-ekonomisk position
En social gradient finns också för dödsfall hos föräldrar, där den är större för dödsfall för
fäder än för mödrar, och särskilt stor för plötsliga oväntade dödsfall som orsakas av
självmord, våld och olyckor, dödsfall som framför allt drabbar fäder.
Föräldrar födda utanför Europa vårdas betydligt mer sällan på sjukhus grund av såväl
alkohol som narkotikamissbruk jämfört med föräldrar med svenskt ursprung, men något
oftare än andra på grund av psykisk sjukdom. Föräldrar med annat nordiskt ursprung än
svenskt vårdas oftare för såväl missbruk som psykisk sjukdom, och har och har också en
högre dödlighet än barn till föräldrar med annat svenskt eller utländskt ursprung.
Föräldrars missbruk eller psykiska sjukdom är vanliga orsaker till att barn omhändertas
för samhällsvård i Sverige. För barn som vårdats mer än fem år i samhällsvård har 61
procent åtminstone en förälder som vårdats inneliggande på grund av missbruk eller psykisk
sjukdom, och 23 procent har en förälder som har avlidit före barnen fyllt arton år.
Det stora antalet barn som potentiellt berörs av den nya lagen om information och stöd
till barn som anhöriga i hälso- och sjukvården gör det angeläget med en diskussion om
prioriteringar, och ett utvecklingsarbete kring insatser med olika grad av intensitet som
kan matchas till barn med olika nivåer av behov. Här krävs ett nära samarbete mellan
hälso- och sjukvården och socialtjänsten, och särskilt viktigt är detta för att utveckla insatser
som är ändamålsenliga för de stora behov av information och stöd kring föräldrars
psykiska sjukdom, missbruk och död som rör barn i samhällsvård. Barn till föräldrar med
kroniska fysiska sjukdomar framstår som ett område där fördjupade analyser i andra
datakällor än register är särskilt viktiga för att skapa underlag för det fortsatta utvecklingsarbetet.

Barn som anhöriga: hur går det i skolan?

Hjern, A., Berg, L., Rostila, M., Vinnerljung. (2013)

Rapport 2 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.

Denna kartläggning av hur det går i skolan för barn som berörs av allvarliga svårigheter hos förälder eller annan vuxen i familjen, har gjorts inom ramen för ett regeringsuppdrag.

Barn som anhöriga: hur går det i skolan? Nka, Linnéuniversitetet, Chess, Barn som anhöriga 2013:3.

Hjern A, Berg L, Rostila M, Vinnerljung B. (2013)

Detta är den andra rapporten av tre i projektet "Barn som anhöriga", som genomförs
av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete
med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar.
Rapportens syfte är att belysa skolprestationer i grundskolan för barn som är anhö-
riga. Vi har analyserat meritvärde och gymnasiebehörighet från årskurs 9 för 655 000
barn under 2003–2008, med fokus på barn som är anhöriga, det vill säga barn med
föräldrar som har vårdats på sjukhus på grund av missbruk, psykisk eller fysisk sjukdom
eller som har avlidit – då barnen var i åldern 0–15 år.
Bland alla barn i undersökningen var det 10,3 procent av flickorna och 13,0 procent
av pojkarna som lämnade grundskolan utan att ha uppnått gymnasiebehörighet.
Barn till föräldrar med missbruk och/eller psykisk sjukdom utgjorde tillsammans sju
procent av studiepopulationen, och framstod som den grupp bland barn som anhö-
riga som hade de minst tillfredställande skolresultaten. Av pojkar som har en förälder
som missbrukar var det 27 procent (far missbrukar) respektive 30 procent (mor
missbrukar) som lämnade grundskolan utan gymnasiebehörighet, liksom 22 respektive
23 procent av pojkar som har en förälder med psykisk sjukdom, jämfört med enbart
12 procent av pojkar från familjer utan missbruk eller psykisk sjukdom. Något
fler flickor än pojkar uppnådde gymnasiebehörighet även i dessa familjer, men
mönstret i förhållande till föräldrars missbruk och psykiska sjukdom var detsamma
som för pojkar.
Det maximala meritvärdet för en elev som går ut årskurs 9 är 320 och medianvärdet
i denna undersökning var 210. Genomsnittligt var meritvärdet, i jämförelse med
barn i familjer utan känt missbruk eller psykisk sjukdom, 45 meritpoäng lägre hos
barn till missbrukande mödrar, 39 meritpoäng lägre hos barn till missbrukande fäder
och 22 meritpoäng lägre hos barn till någon förälder med psykisk sjukdom.
Missbruk hos föräldrar, men också i viss mån psykisk sjukdom, var vanligare i familjer
som fått försörjningsstöd det år barnet avslutade årskurs 9, där föräldrarna
hade kort skolgång bakom sig och familjer där föräldrarna hade separerat. För att
undersöka betydelsen av detta för barnens skolresultat gjorde vi en analys där vi på
matematisk väg vägde in dessa faktorer tillsammans med föräldrarnas missbruk och
psykiska sjukdom. Det visade sig att så mycket som 85 procent av den ökade risken
för barn till föräldrar med missbruk och 75 procent av den ökade risken för barn till
föräldrar med psykisk sjukdom att inte uppnå gymnasiebehörighet var förknippad
med dessa tre sociala faktorer. Vår analys pekar på att det både handlar om sociala
faktorer som kan ha bidragit till uppkomsten av missbruket respektive den psykiska
sjukdomen (utbildningsbakgrund) och faktorer som troligen oftare är en konsekvens
(försörjningsstöd respektive föräldraseparation) av dessa föräldrafaktorer.
Av barnen i studiepopulationen bodde 63 procent i samma hushåll som bägge sina
biologiska föräldrar det år som de avslutade årskurs 9. Av övriga barn hade 35 procent
föräldrar som separerat och 2,1 procent en förälder som avlidit. Ungefär dubbelt
så många barn till separerade föräldrar och barn i familjer där någon förälder avlidit
lämnade grundskolan utan gymnasiebehörighet, jämfört med barn i kärnfamiljer, där
andelen var drygt åtta procent. Skillnaderna mellan barn till separerade föräldrar och
barn i familjer där någon förälder avlidit var små. Det fanns en viss skillnad mellan
könen när det gällde konsekvenserna av att ha förlorat sin mor i dödsfall, där konse-
6
kvenserna var större för flickor än för pojkar. För bägge könen var dock konsekvenserna
större av att ha förlorat en far än en mor. Sociala faktorer som föräldrars utbildningsbakgrund
och försörjningsstöd bidrog något till skillnaderna i skolresultat
mellan barn i kärnfamiljer och barn i enföräldrahushåll.
Fysisk sjukdom hos föräldrar representerades i denna studie av inflammatorisk
tarmsjukdom, multipel skleros och leukemi. Barn vars mödrar hade inflammatorisk
tarmsjukdom eller multipel skleros hade något lägre meritvärde än genomsnittet,
efter att analysen har justerats för den friska förälderns skolbakgrund, medan någon
negativ effekt av fäders sjukdom på barnens skolprestationer inte noterades. Leukemi
fick exemplifiera cancersjukdom hos föräldrar i undersökningen. Barn till föräldrar
med leukemi med dödlig utgång hade klart sämre skolprestationer än andra barn i
undersökningen, medan några skillnader från genomsnittet överhuvudtaget inte
kunde identifieras hos barn till förälder som överlevde leukemi. Det behövs dock fler
studier av barn till föräldrar som drabbas av cancersjukdom för att bekräfta dessa
resultats relevans för cancer hos föräldrar i allmänhet.
Ett genomgående mönster för samtliga grupper av barn som anhöriga var att för-
äldrars egen utbildningsbakgrund hade större betydelse för barnets skolprestationer
än förälderns sjukdom eller död, och att en lång utbildning hos föräldrar hade en viss
skyddande effekt på skolprestationerna av förälderns sjukdom eller död. Vi ser också
att barn i familjer med försörjningsstöd generellt har ett lågt meritvärde, oavsett om
föräldrarna har indikation på missbruk/psykisk sjukdom eller ej.
Resultaten från denna studie visar att föräldrars missbruk, sjukdom och död inte
sällan påverkar deras barns skolresultat på ett negativt sätt. Yrkesgrupper som möter
dessa barn bör således tänka på att hjälp med skolarbete och läxläsning kan vara en
viktig komponent i ett psykosocialt stöd. När det gäller förebyggande insatser i skolan
pekar studien i första hand på behovet av generella insatser för barn som har svårt att
få stöd i hemmet i skolarbetet oavsett orsak. Där det kan handla om barn som är anhöriga,
men likväl om barn med t ex separerade föräldrar eller föräldrar med kort
egen utbildning.
Studien pekar också på särskilt bristfälliga skolresultat hos barn där föräldrars
sjukdom och död drabbar familjer som har kontakt med socialtjänsten, antingen i
form av försörjningsstöd eller genom att barnen placerats i samhällsvård. De bristfälliga
skolprestationerna hos dessa gör socialtjänsten till en naturlig plattform för interventioner
i syfte att stödja skolarbetet hos barn i familjer med social sårbarhet,
inklusive sjukdom och död hos förälder. Både svensk och internationell forskning
pekar på att det är realistiskt att förvänta sig positiva resultat från denna typ av interventioner.
Det är därför angeläget att metoder för att stödja skolarbetet hos elever i
socialt sårbara familjer får en större spridning bland Sveriges kommuner.

Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn

Skoog, V. (2013)

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn

Skoog, V. (2013)

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Barn som har föräldrar med utvecklingsstörning

Socialstyrelsen (2007)

Rapporten vill bidra med kunskap och idéer för yrkesverksamma och bilda underlag när stöd och insatser formas och samverkan utvecklas. Publikationen bygger på forskning som kompletterats med andra studier samt med erfarenheter från yrkesverksamma.

Barn som pårörende

Storm Mowatt Haugland B, Ytterhus B, Dyregrov K, editors (2012)

Sykdom, ulykker og kriser har alltid et familieperspektiv. Det minner forfatterne av denne kunnskapsrike boken om på hver side. De stiller det viktigste av alle spørsmål: Er det barn der?
Hvor du enn befinner deg i kretsen rundt en sorg- og kriserammet familie, midt i sentrum der hjemme, som den som tar imot barnet i barnehage eller skole, eller som ansvarlig for behandling og oppfølging av den syke, trenger du denne boken. Aldri før har noen så grundig og rørende oppsummert teoretisk og praksisbasert kunnskap om pårørende barns behov. Det kan ikke sies for ofte, og det står med store bokstaver i boken: Best hjelper det barnet at mamma eller pappa får all den støtte de trenger. Når du har lest denne boken, er du i besittelse av noe helt unikt – en oppdatert empati!

Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada. En kunskapsöversikt om metoder för att ge stöd till barn

Järkestig Berggren, U., & Hanson, E. (2013)

Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en förälder blir fysiskt allvarligt sjuk.

Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada: En kunskapsöversikt om metoder för att ge stöd till barn

Järkestig Berggren Ulrika, Hanson Elizabeth (2013)

Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en blir förälder fysiskt allvarligt sjuk

Barn till föräldrar med cancer – hur många berörs och vilka är konsekvenserna i ett livsloppsperspektiv? Nka Barn som anhöriga 2016:1

Berg Lisa, Hjern Anders (2016)

Rapport nr 5 i projektet "Barn som anhöriga", som genomförs av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa hur vanligt det är att barn upplever att en förälder drabbas av en cancersjukdom, vilka konsekvenser detta har för skolprestationer i årskurs 9 samt för hälsa och social situation för unga vuxna i åldern 18–40 år.

Barn utan hem. Olika perspektiv

Andersson, G. & Swärd, H (2007)

Hur kan man förklara att det finns familjer som befinner sig i välfärdens utkant? Vad vet vi egentligen om de barn och familjer som lever mitt ibland oss, men utan tillgång till ett tryggt boende? Hur upplever de drabbade barnen situationen?

Barn utan hem belyser frågan om barn och familjer i hemlöshet ur olika perspektiv. Författarna lyfter fram de grupper som ställts utanför såväl arbetsmarknaden som socialförsäkringssystemet och den reguljära bostadsmarknaden. Fokus ligger på de drabbade barnens och deras familjers liv i utanförskap. Barnens situation belyses i ett helhetsperspektiv som inkluderar såväl aktörer som strukturer.

Boken vänder sig till universitets- och högskolestuderande inom socionom- och lärarutbildningarna och andra utbildningar inom de sociala och pedagogiska fälten samt till yrkesverksamma som kommer i kontakt med barn och familjer i svåra livssituationer.

Barn vi bekymrar oss om

Druggli, May Britt (2003)

Författaren belyser i boken sambandet mellan de vuxnas förhållningssätt, pedagogens handlande och de avvikande beteendena som barn kan uppvisa i förskolan eller i skolan. I ett nyskrivet avsnitt för den svenska utgåvan behandlar Hans Bengtsson samarbetet med socialtjänsten och de ansvars- och sekretessregler som gäller.

Barnavårdsutredningar. En kunskapsöversikt

Sundell, K., Egelund, T., André Löfholm, C., & Kaunitz, C. (2007)

I denna grundligt reviderade upplaga av Barnavårdsutredningar - en kunskapsöversikt presenteras aktuell svensk och internationell forskning inom det viktiga område som barnavårdsutred­ningar och social barnavård utgör.

Frågeställningar som berörs är bland andra:

- Vilka barn och familjer utreds?
- Hur blir de aktuella hos socialtjänsten?
- Hur genomförs barnavårdsutredningarna?
- Vilka faktorer styr socialarbetarnas riskbedömning och beslutsfattande?
- Leder barnavårdsutredningarna till att barnen får det bättre?

Boken vänder sig till socialarbetare samt till studenter på utbildningar som rör social barnavård. Den kan stimulera till diskussion och kritisk reflektion om dessa för socialtjänsten och samhället så viktiga frågor och kan även användas som utgångspunkt för fortsatt forskning.

Barndom och föräldraskap i missbrukets skugga. Barn, ungdomar och föräldrar berättar om vardagsliv och behov av stöd när föräldern har missbruksproblem

Alexanderson K, Näsman E. (2015)

Barn som växer upp i en familj där en vuxen har missbruksproblem utsätts för svåra
påfrestningar. Hur kan stödet till barnen stärkas? Regionförbundet Uppsala län och
Uppsala universitet har i ett samarbetsprojekt sökt ta fram fördjupad kunskap om
hur barn och ungdomar i den situationen ser på sitt behov av stöd och att med detta
och tidigare forskning som grund utveckla stödet till barnen och deras föräldrar.
Barn, ungdomar och föräldrar intervjuades och ett utvecklingsarbete genomfördes
tillsammans med fem kommuner. Projektet finansierades av Folkhälsomyndigheten
under 2012–2015. I den här rapporten ger vi en kort sammanfattning av huvuddragen
i det som projektet kom fram till. För ytterligare information se kommande
publikationer av Alexanderson och Näsman.

Barndom och föräldraskap i missbrukets skugga. Barn, ungdomar och föräldrar berättar om vardagsliv och behov av stöd när föräldern har missbruksproblem

Alexanderson K, Näsman E. (2015)

Barn i missbruksmiljöer (BIM) är ett forsknings- och utvecklingsprojekt som genomförts i samverkan mellan Regionförbundet Uppsala län och Uppsala universitet under 2012–2015.

I projektet har barn, ungdomar och föräldrar intervjuats och socialtjänsten i länets kommuner involverats i ett utvecklingsarbete för att utveckla stödinsatser till barn och vuxna i familjer där en förälder har problem med missbruk. Resultat från projektet redovisas i denna skrift.

Barndomen varar i generationer. Om förebyggande arbete med utsatta familjer. Andra upplagan

Killén, Kari (2009)

Barndomen varar inte bara livet ut. Den varar i generationer. Det är viktigt att stärka föräldraskapet och ge föräldrar hjälp innan de får problem. Barn som inte får hjälp att bearbeta smärtsamma upplevelser kan komma att omedvetet vidareförmedla dessa till sina egna barn. Denna bok handlar om att förebygga nästa generations omsorgssvikt och psykiska störningar.
Barndomen varar i generationer baserar sig på en referensram där anknytningsteori och anknytningsforskning är centrala inslag. Kari Killén är både kliniker, pedagog och forskare, och i denna bok knyter hon ihop teori och praktik för att förebygga problem i föräldra-barnrelationer. Denna andra upplaga är uppdaterad och bearbetad med avseende på den forskning och erfarenhet som tillkommit sedan förra upplagan från år 2000.
Boken vänder sig till alla som arbetar med barn och ungdomar i skola, hälso- och sjukvård och inom socialtjänsten, samt till studenter inom dessa områden.

Barnens rätt till information – Redovisning av vårdpersonalens svar på öppna frågor i projektet ”Barns rätt som närstående i palliativ vård”

Emme-Li Vingare, Ulla Beijer (2016)

Sammanfattning
Under hela 2014 och första delen av 2015 har ett utvecklingsprojekt som gällt Barns rätt som närstående i palliativ vård för vuxna pågått i de fyra palliativa enheterna i Landstinget Sörmland. Projektet innebar att två av enheterna var interventionsenheter (i rapporten nämnd som Grupp A) som skulle utveckla och implementera lokala handlingsplaner för barns rätt som närstående, medan de övriga två enheterna (Grupp B) skulle inte utveckla handlingsplaner under projekttiden.
Forskare från FoU i Sörmland (FoUiS) och från Mälardalens högskola involverades för att följa och dokumentera projektet. Denna FoU-rapport är en redovisning från FoUiS och omfattar personalens svar (från Grupp A och Grupp B) på de öppna/halvstrukturerade enkätfrågor som ställdes i samband med projektstarten (enkät nr 1) och efter projektets slut (enkät nr 2). I denna rapport redovisas de båda grupperna (Grupp A och B) i huvudsak tillsammans då det ger en värdefull sammantagen bild av personalens syn på och erfarenhet av barn som närstående i palliativ vård för vuxna, men vissa skillnader mellan grupperna redovisas också. Svaren berör fyra teman: miljön, verksamheten, interpersonella, samt personella faktorer.
Sammanfattningsvis kan sägas att när det gällde barnens möjligheter att ställa frågor till personalen inom palliativ vård, förekom i båda grupperna (Grupp A och B) i enkät 1 ospecificerade och lite vaga svar, som att barnen har "alla möjligheter", eller har "goda möjligheter" att göra detta. När det gällde att specificera vilka i personalgruppen som ger råd, stöd och information till barnen, hänvisade man till personer med specialfunktioner, såsom kurator eller barnrättspilot. Det fanns en tendens i första enkäten att se barns möjligheter att ställa frågor som något personbundet och icke-organiserat. Det fanns även funderingar om att det kan vara svårt att prata med barn om cancer, vilket skulle kunna tolkas som ett visst personbundet motstånd att möta barn. Här fanns dock, i uppföljningsenkäten för
interventionsenheterna (Grupp A), en tendens till att, efter arbetet med handlingsplanerna, ha fått ett mer gemensamt ansvar för att möta och informera barnen, en uppgift som gällde för alla personal, samt en ökad användning av ordet "vi".

Personalens medvetenhet om barnens rätt till information och delaktighet framkom i svaren från båda grupperna, även om den sjuke anhörige eller föräldrarna ofta hamnar i fokus. I båda grupperna fanns en uppfattning om att förbättring av den fysiska miljön, till en mer anpassad miljö för barn, lekplats/-hörna, samtalsrum, där barnen kunde slappna av och bra möten skulle kunna komma till stånd, skulle gagna kontakten med de närstående barnen. När det gällde den psykiska miljön i patientens hem fanns en tendens till perspektivförändring i interventionsgruppen (Grupp A), från den egna osäkerheten på vad föräldrarna vill att deras barn ska veta, till större säkerhet att se och möta barnen. Förutom kommentarer om praktiska hinder, angavs i både första och andra enkäten för båda
grupperna (Grupp A och B) tidsbrist som en av orsakerna till att personalen inte informerade och mötte barnen. I uppföljningsenkäten av interventionsgruppen (Grupp A) fanns dock de som inte hittade några praktiska svårigheter att tala med barn. Detta skulle kunna betyda att barn som närstående kommit mer i fokus för de interventionsenheter som ingått i projektet, att personal blivit mer medvetna, och därför i viss grad övervunnit tidsmässiga och praktiska svårigheter. I båda grupperna (Grupp A och B) fanns en efterfrågan om mer information, utbildning, stöd, handledning och specialiserade personella resurser, såsom ökad kuratorstid. En önskan fanns (särskilt från Grupp B) om att perspektivet behöver ändras i hela organisationen, mot ett mer familje- och barnorienterat synsätt. Sannolikt har de interventionsenheter (Grupp A) som ingått i projektet fått en del av detta tillgodosett. Dock fanns en oro (från Grupp A, i enkät 2) att det arbete som nu genomförts inte fullt ut skulle bevaras och utvecklas.

Barnfattigdom: om bemötande och metoder ur ett barnperspektiv

Näsman, E., Ponton von Gerber, C. & Fernqvist, S. (2012)

Drygt vart tionde barn i Sverige lever i fattigdom – det vill säga i familjer med så låg inkomst att den inte täcker ens de nödvändigaste levnadskostnaderna. För barnen kan det betyda att de inte kan följa med på skolutflykter, ta bussen till stan med sina kompisar eller köpa en glass.

På vilket sätt påverkas barn som lever länge under ekonomisk utsatthet? Hur ser barnen själva på sitt liv och på relationen till sina föräldrar? Hur bemöts de av andra barn och vuxna i skolan? Hur hanterar föräldrarna barnens situation? Och hur agerar professionella vuxna när de möter ekonomiskt utsatta barnfamiljer i skolan, inom socialtjänsten och rätten? Dessa är några av de frågor som behandlas i den här boken.

Boken bygger på intervjuer med barn och föräldrar som berättar om hur det är att leva i ekonomisk utsatthet. Personal inom skolan, socialtjänsten och förvaltningsrätten berättar i sin tur om hur de i sin professionella roll bemöter dessa familjer. Läsaren får konkreta råd om hur barn perspektivet kan tillämpas i arbetet med barnfattigdom och om hur samarbete över myndighetsgränser kan underlätta för de utsatta barnen.

Boken vänder sig till alla som möter ekonomiskt utsatta barn inom socialtjänsten, skolan och rättsväsendet, samt till universitets- och högskolestudenter och politiskt engagerade.

Barnperspektiv i LSS-handläggningen

Socialstyrelsen (2009)

Under 2008/2009 gjorde Socialstyrelsen en förstudie för att ta reda på vilka problem och möjligheter som finns kring att se till barns och ungdomars behov i utredningssammanhang utifrån lagen om stöd och service till vissa funktionshindrade, LSS. De övergripande frågeställningarna var:
Hur utreder LSS-handläggarna idag barns och ungdomars behov av insatser, och hur följs dessa insatser upp?
Vad skulle handläggarna behöva för typ av utredningsstöd för att bättre kunna bedöma barns och ungdomars behov?
Förstudien genomfördes i Jönköpings län, genom enskilda intervjuer, en webbenkät samt fokusgruppssamtal med LSS-handläggare.
Det visade sig att handläggarna inte hade något särskilt utformat stöd för att få in barnperspektiv i sina utredningar. Barns behov bedömdes på olika sätt mellan handläggare inom och mellan olika kommuner. Resultaten av enkät och intervjuer visar att det fanns ett önskemål om att öka likvärdigheten kring handläggningen i olika kommuner och därmed öka rättsäkerheten. För detta krävs en struktur som betonar barnperspektiv och som gör att LSS-handläggare får ett mer likartat arbetssätt.
I fokusgrupperna presenterades två olika modeller för att ringa in behovsområden i utredningsförfarandet, Barns behov i centrum (BBIC) respektive International Classification of Functioning, Disability and health – for Children and Youth Version, (ICF-CY) Handläggarna fick sedan diskutera vad som kunde vara användbart i deras arbete.
Resultatet av fokusgrupperna visar att handläggarna ansåg att de kunde inspireras av det barnfokus som finns inbyggt i BBIC samt av modellens processtruktur. BBIC saknar dock innehåll om hur en funktionsnedsättning ger upphov till funktionshinder och hur insatsen kan underlätta för individen att fungera i sin vardag.
När det gällde ICF så uppfattade handläggarna ICF-CY som relativt svårtillgänglig i sin struktur och de hade svårt att se hur de skulle kunna använda klassifikationen i praktiken. Handläggarna tyckte att begreppen i ICF-CY kändes bekanta då innehållet i klassifikationen handlade om funktionshinder, vardagligt fungerande och delaktighet. Handläggarna kände igen sitt eget synsätt i ICF-CY eftersom ICF-CY utgår från individer som möter funktionshinder utifrån sitt vardagsfungerande, och inte ser till social problematik eller går in djupt på föräldraförmåga. Handläggarna uppfattade att angreppssättet av funktionsprofil var tilltalande då det öppnar för ett annat sätt att tänka om funktionsnedsättningar och diagnoser.

Barnperspektiv som ideologiskt eller metodologiskt begrepp

Halldén, Gunilla (2003)

Begreppet barnperspektiv är mångtydigt. Det används som ett ideologiskt begrepp med stor retorisk kapacitet och det används i vetenskapliga sammanhang som ett metodologiskt begrepp. Artikeln diskuterar olika innebörder som kan ges åt begreppet barnperspektiv och sätter det i relation till aktuell barndomsforskning. En diskussion förs också om hur barnperspektiv kan diskuteras i relation till ett empiriskt material med barns texter som ställer frågor om hur man ska transkribera och citera ur texten. Det väcker också frågor om vilken kontext som ska utgöra bakgrund för analysen. Sättet att hantera dessa frågor är beroende av etiska ställningstaganden och av de frågeställningar och det teoretiska perspektiv som styr analysen. Artikeln argumenterar för vad som utgör ett barnperspektiv i just denna studie nämligen att utgå från barns utsagor, men i tolkningen ställa dessa utsagor i relation till diskurser om barndom. Barnperspektiv blir då både att fånga barns röster och att tolka dem som uttryck för ett diskursivt sammanhang. Barnperspektiv handlar om vilken plats barn ges i vårt samhälle, vilka generella erfarenheter som det ger barn och på vilket sätt barnen uttrycker dessa erfarenheter. Barnperspektiv blir då något utöver att återge barns perspektiv på olika fenomen.

Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård

Eklund, Rakel (2020)

Avhandling

Abstract [sv]
När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.

Barns och ungas hälsa, vård och omsorg 2013

Socialstyrelsen (2013)

Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.

I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.

Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch.

Barriers and contributors to minority older adults' access to mental health treatment: perceptions of geriatric mental health clinicians

Choi, N. G. and J. M. Gonzalez (2005)

This exploratory study examined geriatric mental health clinicians' experiences and perceptions of the circumstances in which African American and Mexican American older adults access outpatient specialty mental health treatment and the factors that impede or facilitate such access. Eighteen mental health clinicians from three outpatient geriatric mental health clinics in one urban and two rural areas in central Texas discussed their perceptions in three focus groups and/or individual interviews conducted by the authors. The clinicians identified the common circumstances in which minority older adults' access to mental health treatment involves loss and grief in later life coupled with lack of informal social support. Although clinicians confirmed existence of the access barriers identified by previous studies (lack of understanding about mental disorders, shame and stigma, cultural differences, fear and distrust of the treatment system, primary care physicians' knowledge deficit about mental disorders, and financial and transportation barriers), they also identified minority older adults' lack of information on referral processes as a serious barrier. As access contributors, physician referral; support and encouragement from family, especially adult children; availability of bilingual/bicultural clinicians; and transportation were identified. Implications of the findings are also discussed.

Blended learning networks supported by information and communication technology: An intervention for knowledge transformation within family care of older people

Hanson E, Magnusson L, Sennemark E. (2011)

Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.

Blended learning networks supported by information and communication technology: An intervention for knowledge transformation within family care of older people

Hanson E, Magnusson L, Sennemark E. (2011)

Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.

Bröderna Lejonhjärta, Bok från 6år

Astrid Lindgren. Bilder Ilon Wikland (1973)

Nangijala, där det ännu är lägereldarna och sagornas tid, det är dit man kommer när man dör. Det berättar Jonatan för sin bror Skorpan som ligger hemma i köket och hostar och är rädd för att dö. Men Jonatan säger att han inte behöver vara rädd, för de kommer att ses i Nangijala. Astrid Lindgrens saga om bröderna Lejonhjärta är en klassisk berättelse om liv och död, syskonkärlek och mod. Kapitelbok från 6 år.

Buller om huller i Mamma Grå

Hedberg, Jessica (2018)

Sammanfattning
Mamma är sig inte lik. Hon fräser, blir lätt arg och är alltid trött. Hon har blivit sjuk och behöver vila. Det är liksom huller om buller i huvudet på henne. I berättelsen får vi följa barnen Maxi och Lilla Lo som försöker förhålla sig till sin mammas mående. Är det deras fel att mamma är sjuk? Ska klumpen i magen någonsin försvinna? Det här är en berättelse som börjar i grått, men hur slutar det?

Burden in Schizophrenia Caregivers: Impact on Family Psychoeducation and Awerness of Patient Suicidality

McDonnell, G. Michael, Short, A. Robert, Berry, M. Christopher & Dyck, G. Dennis (2003)

Family caregivers of persons with schizophrenia and other psychotic disorders experience high levels of burden. Although a number of patient and caregiver predictors of burden have been identified, little research has investigated the contributions of patient depression, suicidal ideation, and substance abuse. In addition, family psychoeducation interventions have reduced patient symptoms, as well as inpatient treatment utilization; however, it is not known whether or not these interventions reduce family burden. This study- investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard-care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation; not patient's report of suicidal ideation; and that patient age not duration of the illness, were significant, independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden. Discussions focus on the relationship between burden and its predictors, and possible reasons why MFGT did not decrease burden. Modifications are proposed that may increase the impact of MFGT.

Burden of Caregivers of Patients With Bipolar Affective disorders

Bauer, R., Gottfriedsen, G.-U., Binder, H., Dobmeier, M., Cording, C., Hajak, G., & Spiessl, H. (2012)

Thirty-two problem-oriented interviews with caregivers of patients with bipolar affective disorders were analyzed using content analysis. The 722 statements of caregivers about their experiences of subjective burden because of the illness of their family members were summarized in 49 global statements and correlated by factor analysis to 10 types of burden. In particular, patients' noncompliance as well as the helplessness of the caregivers in interaction with the (changing) depressive and manic symptoms of the ill family members emerged as serious burdens on the caregivers. Whereas female caregivers suffered more from problems regarding quality of relationship with the patient, male caregivers experienced more constraints on their own autonomy, uncertainty concerning their judgment of patients' capacity, and uncertainty because of the changing symptoms of illness. The findings of this study highlight that an appreciation of caregivers' own consternation and information about how best to handle the (uncooperative) behavior of the patient should be taken into account in psychoeducational groups as well as in the daily work routine of professionals.

Burden of informal care giving to patients with psychoses: a descriptive and methodological study

Flyckt L, Löthman A, Jörgensen L, Rylander A, Koernig T. (2013)

Background:

There is a lack of studies of the size of burden associated with informal care giving in psychosis.

Aims:

To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.

Method:

Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.

Results:

One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.

Conclusion:

Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.

Keywords: Informal care giving, schizophrenia, subjective burden, objective burden, diary method, recall method

Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia‐spectrum disorders: A qualitative study

Knock J, Kline E, Schiffman J, Maynard A, Reeves G. (2011)

Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders. Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview. Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services. Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.

Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia‐spectrum disorders: A qualitative study

Knock J, Kline E, Schiffman J, Maynard A, Reeves G. (2011)

Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders.

Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview.

Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services.

Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.

By their own young hands: Delibirate self-harm and suicid ideas.

Hawton K, Rodham K, Evans E. (2006)

Self-harm in adolescents is an increasingly recognized problem, and there is growing awareness of the important role schools and health services can play in detecting and supporting those at risk. By Their Own Young Hand explores the findings of the first large-scale survey of deliberate self-harm and suicidal thinking in adolescents in the UK, and draws out the implications for prevention strategies and mental health promotion.

Six thousand young people were asked about their experiences of self-harm, the coping methods they use, and their attitudes to the help and support available. The authors identify the risk and protective factors for self-harm, exploring why some adolescents with suicidal thoughts go on to harm themselves while others do not, what motivates some young people to seek help, and whether distressed teenagers feel they receive the support they need. By Their Own Young Hand offers practical advice on how schools can detect young people at risk, cope with the aftermath of self-harm or attempted suicide, and develop training programmes for teachers. It also examines the roles of self-help, telephone helplines, email counselling, and walk-in crisis centres.

Packed with adolescents' own personal accounts and perspectives, this accessible overview will be essential reading for teachers, social workers and mental health professionals.

Bygga och använda språk : Bliss i AKK

Heister Trygg, Boel (2009)

Boken presenterar blissanvändare i olika åldrar och på olika språkliga nivåer. Den vill ge inspiration att prova blisspråket också där det inte är alldeles givet. Författaren försöker bland annat att ge svar på frågor som: Varför bliss? Hur ser blisspråket ut? Hur väljer man symboler och bygger upp en blisstavla?

Can I tell you about Bipolar Disorder? A Guide for Friends, Family and Professionals

Mainstone-Cotton Sonia (2018)

Läsålder
6-9 år
Illustratör/Fotograf Jon Birch

If a grownup you love has bipolar disorder, what does that mean? In this friendly guide, 11-year-old Josh tells all about his dad's bipolar, including what mental illness is, and how it can affect patients and their families. The guide explains in child-friendly terms how different types of bipolar affect people's feelings and behaviour. It is a comforting book that prepares young readers for the hard parts of knowing someone with bipolar, while communicating that bipolar is nothing to be afraid or ashamed of. Providing an excellent starting point for discussion both at home and in the classroom, it also includes a helpful list of recommended sources for additional support.

Can rehabilitation in the home setting reduce the burden of care for the next-of-kin of stroke victims?

Björkdahl A, Nilsson AL, Sunnerhagen KS. (2007)

BACKGROUND:
More evidence of the efficacy of caregiver interventions is needed. The aim of this study was to evaluate whether counselling in the home setting reduces the caregiver burden.
METHODS:
Thirty-six patients after stroke, median age 53 years, with a close family member, were selected for an evaluation of the burden of care and 35 participated. They were part of a randomized controlled trial, comparing rehabilitation in the home setting with outpatient rehabilitation. In the home setting, counselling about the stroke and its consequences was included. Assessments with the Caregiver Burden scale were made at 3 weeks, 3 months and one year after discharge.
RESULTS:
The burden of the 2 groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from 3 weeks to 1 year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention.
CONCLUSION:
A positive effect of counselling was seen, as the home setting burden tends to be lower after the intervention, while outpatient rehabilitation seems to adjust with time. The results suggest that counselling reduces burden and the remaining burden is associated with the patient's ability.

Cancer, a relational disease: exploring the needs of relatives to cancer patients

Sandén Ulrika, Nilsson Fredrik, Thulesius Hans, Hägglund Maria, Harrysson Lars (2019)

Abstract [en]
Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.

Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.

Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

Care coordination: integrating health and related systems of care for children with special health care needs

Committee on Children With Disabilities (1999)

Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family.

According to the Maternal and Child Health Bureau (MCHB) definition, which was later adopted by the American Academy of Pediatrics (AAP), "children with special health care needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally."1 Primary care pediatricians and other professionals caring for children with special health care needs generally acknowledge the importance of and the need for coordination of care. New initiatives from health care reform and managed care are reshaping the traditional direct clinical care role of the primary care pediatrician to include gatekeeper and coordination roles. This transition to managed systems of care from traditional fee-for-service care has important implications for aspects of care coordination. The primary care pediatrician may be required to assume even greater responsibility for providing care coordination for their patients under capitated arrangements. This policy statement reviews the importance of the primary care pediatrician's role in care coordination in the context of the medical home.

Care management and care provision for older relatives amongst employed informal care-givers

Rosenthal C, Martin-Matthews A, Keefe J. (2007)

Care management among informal caregivers includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care , the circumstances under which it occurs, its variations by caregiver characteristics and its impact on the carers, using a sub-sample of 1847 full-time employed individuals who were assisting older relatives drawn from the Canadian 'Work and Family Survey'. The analysis shows that managerial care is common, distinct from other types of care, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men.

Care Management's Challenges and Opportunities to Reduce the Rapid Rehospitalization of Frail Community-Dwelling Older Adults

Golden AG, Tewary S, Dang S, Roos BA. (2010)

Community-based frail older adults, burdened with complex medical and social needs, are at great risk for preventable rapid rehospitalizations. Although federal and state regulations are in place to address the care transitions between the hospital and nursing home, no such guidelines exist for the much larger population of community-dwelling frail older adults. Few studies have looked at interventions to prevent rehospitalizations in this large segment of the older adult population. Similarly, standardized disease management approaches that lower hospitalization rates in an independent adult population may not suffice for guiding the care of frail persons. Care management interventions currently face unique challenges in their attempt to improve the transitional care of community-dwelling older adults. However, impending national imperatives aimed at reducing potentially avoidable hospitalizations will soon demand and reward care management strategies that identify frail persons early in the discharge process and promote the sharing of critical information among patients, caregivers, and health care professionals. Opportunities to improve the quality and efficiency of care-related communications must focus on the effective blending of training and technology for improving communications vital to successful care transitions.

Lived experiences of being a father of an adult child with Schizofrenia

Nyström M, Svensson H. (2004)

The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.

Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families

Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A. (2014)

Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.

Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities

Hastings, Richard, P. (2007)

Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. (2002)

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

Loss and grief in patients with Schizophrenia: Onliving in another world

Mauritz M, Van Meijel B. (2009)

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17

Cox, D. and B. Soldo (2004)

When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.

Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010

Malmberg, B. and G. Sundström (2012)

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).

År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.

I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

 

Negotiating family responsibilities

Finch, J. and J. Mason (1993)

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review

Nock, M. K., & Ferriter, C. (2005)

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

Brewer, J. & Sparkes, A. (2011)

Drawing on data generated from a two-year ethnographic study of the Rocky Centre (achildhood bereavement organisation in the UK), this article explores the positive changes and themes of posttraumatic growth experienced by parentally bereaved young people. Although the broader study generated data from participant observation, interviews and a documentary analysis, this article focuses specifically on the interviews with 13 young people to identify the themes of posttraumatic growth that emerged from the participants' narratives. Of these, four had been recently bereaved and nine had experienced the death of a parent over 10 years ago. Interviews were transcribed verbatim and analysed for themes that reflected the young people's experiences of growing through grief. Those identified were as follows: positive outlook, gratitude, appreciation of life, living life to the full, and altruism. Each theme isdiscussed in turn, and the implications of the findings for research and practice are addressed.

Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health

Goodman, J. (2004)

BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.

Perceived burden, lived experiences and experiences of learning processes and illness management in parents of children with severe or moderate haemophilia

Myrin Westesson, Linda (2019)

Doktorsavhandling

Haemophilia is a complex condition to manage, especially for parents of newly diagnosed children, and the illness affects the whole family. The parents are deeply involved in the child's treatment, as they frequently have to administer intravenous injections at home. The overall aim was to investigate perceived burden, lived experiences and to explore experiences of learning processes and illness management in parents of children with severe or moderate haemophilia. In studies I-III, a qualitative approach was motivated to describe experiences of parenting a child with haemophilia. Study III employed a longitudinal design to explore the learning process, while study IV employed a quantitative method with a cross-sectional survey. The results reveal that the mothers often needed to become reconciled both with the fact of the child's illness and their own carriership. However, having a child with severe or moderate haemophilia was life changing for both fathers and mothers. The parents were forced into a situation where they had to learn about and manage their child's illness in daily life. Thus, a desire to become independent of health care professionals in this respect emerged as a key incentive for learning. How this learning process developed and how long it took depended on different factors. For example, parents of children with past or present inhibitors reported higher perceived burden than parents of children without a history of inhibitors. Nevertheless, independently managing home treatment was essential for the parents to feel in control of their life-world again. One conclusion is that female carriers need more knowledge about their carriership and would benefit from counselling before starting a family. One suggestion is that acceptance of the child's illness and reconciliation with the new complex family situation could be promoted with person-centred care. Furthermore, the findings underline that health care professionals need to be aware of an increased burden on parents of young children and particularly the burden on parents of young children with inhibitors.

Personlighetsstörningar. Kliniska riktlinjer för utredning och behandling. Svensk Psykiatri nr 9.

Svenska Psykiatriska Föreningen (2006)

Kliniska riktlinjer för personlighetsstörningar som nu presenteras är
nummer 9 i en serie av riktlinjer som framtagits i Svenska Psykiatriska
Föreningens regi sedan 1996. Tidigare har riktlinjer publicerats
med titlarna Schizofreni och schizofreniliknande tillstånd, Förstämningssjukdomar,
Ångestsyndrom, Alkoholproblem, Självmordsnära
patienter, Tvångsvård, Äldrepsykiatri och Ätstörningar. Dessa riktlinjer
kan beställas från Förlagshuset Gothia (www.gothia.verbum.se,
sök "psykiatri").
Människor med personlighetsstörningar har länge betraktats som
en svår patientgrupp då interaktionen med omgivningen ofta blir problematisk
och konfliktfylld. Personlighetsstörningar är vanligt förekommande
i den vuxna befolkningen. Prevalensen i vården är hög –
inte minst bland psykiatriska patienter – och samsjuklighet med andra
psykiatriska tillstånd är vanlig. Det finns ett stort behov av kunskap
om personlighetsstörningar, vilket gör att de kliniska riktlinjer
som nu presenteras är mycket angelägna och välkomna. Arbetsgruppen
med Lisa Ekselius i spetsen har på ett mycket förtjänstfullt sätt
åskådliggjort personlighetsstörningarnas kliniska uttryck, komplexitet
och drabbade personers subjektiva lidande. Ett av huvudsyftena
med de nu presenterade riktlinjerna är att göra personlighetsstörningarna
igenkännbara för oss alla som möter patienter med dessa tillstånd
i vår kliniska vardag. Genom att tidigt kunna identifiera personlighetsstörningar
hos patienter, kan man formulera realistiska behandlingsmål
och minska risken för att de hamnar i ofruktsamma
behandlingskontakter. Detta gäller inte minst många patienter som
behandlas för ett axel-I-syndrom. Idag finns en rad diagnostiska
5
hjälpmedel som kan underlätta identifiering av personlighetsstörningar.
Trots att det fortfarande råder brist på empirisk forskning inom
området finns det belägg för att dessa störningar går att behandla
framgångsrikt. Tydlig struktur samt värnande om den terapeutiska alliansen
mellan patient och behandlare är väsentliga för all form av behandling
av patienter med personlighetsstörningar.
Personlighetsstörningsproblematiken leder många gånger till funktionella
svårigheter i livet, känsla av utanförskap och subjektivt lidande.
Inte minst gäller det patienter med borderline personlighetsstörning,
där även risken för självskadebeteende och suicid är hög. Det är
hoppfullt att behandlingsmetoder som dialektisk beteendeterapi
(DBT) har visat sig vara effektiv för dessa patienter. Andra personlighetsstörningar,
främst antisocial personlighetsstörning, åsamkar
framför allt omgivningen lidande och problem. Ofta förvärras detta
av koppling till missbruk och leder inte sällan till våld och kriminalitet.
I dagens samhällsklimat är riskbedömning av upprepat våld en viktig
men grannlaga uppgift. Inom rättspsykiatrin, där många av dessa
patienter finns, används idag bedömningsinstrument som har visat sig
kunna bidra till säkrare bedömning av återfallsrisk. För patienter
utanför den rättspsykiatriska vården är riskbedömningsinstrumentet
osäkrare och det finns för närvarande inget som kan ersätta en samlad
klinisk bedömning. Det är dock viktigt att riskbedömningar görs
på ett så strukturerat sätt som möjligt av patienter med personlighetsstörning,
särskilt vid samtidig förekomst av missbruk.

Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study

Nordström, M., Dunér, E., Olin, A., & Wijk, H. (2009)

BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.

Positive parenting as a protective resource for parentally bereaved children

Haine, R.A., Wolchik, S.A., Sandler, I.N., Millsap, R.E. & Ayers, T.S. (2006)

Positive parenting was examined as a protective resource against the adverse effects of negative life events on parentally bereaved children's mental health problems. The sample consisted of 313 recently bereaved children ages 8 to 16 and their current caregiver. Both the compensatory (direct effect independent of negative life events) and the stress-buffer (interactive effect with negative life events) protective resource models were examined and child gender was explored as a moderator of both models. Results revealed evidence for the compensatory protective resource model for both child and caregiver reports of mental health problems. No evidence of the stress-buffer model or child gender as a moderator was found. Implications for the understanding of children's responses to the death of a parent and the development and implementation of preventive interventions are discussed.

Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis

Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I. (2009)

BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.

AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.

METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.

RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.

CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.

Prevention and Intervention Strategies With Children of Alcoholics.

Emshoff JG, Price AW. (1999)

Objective. This article was designed to give pediatricians a basic knowledge of the needs of children who live in families with alcoholism. It briefly presents issues involved in the identification and screening of such individuals and provides primary attention to a variety of preventive and treatment strategies that have been used with school children of alcoholics (COAs), along with evidence of their effectiveness.

Methodology. A literature search including both published and unpublished descriptions and evaluations of interventions with COAs.

Results. The scope and nature of the problems of growing up in an alcoholic home are presented. The risk and protective factors associated with this population have been used as a foundation for preventive and treatment interventions. The most common modality of prevention and intervention programs is the short-term small group format. Programs for COAs should include the basic components of information, problem- and emotion-focused coping skills, and social and emotional support. Physicians are in a unique position to identify and provide basic services and referrals for COAs. School settings are the most common intervention sites, but family and broad-based community programs also have shown promise in alcohol and other drug prevention.

Conclusions. Several COA interventions have demonstrated positive results with respect to a variety of measures including knowledge of program content, social support, coping skills, and emotional functioning. Rigorous studies are needed to understand better the complex ways children deal with parental alcoholism. A need remains for empirically sound evaluations and for the delineation of research findings.

Preventive interventions in families with parental depression: Children’s psychosocial symptoms and prosocial behaviour

Solantaus, T., Paavonen, E.J., Toikka, S., & Punamäki, R.L. (2010)

The aim is to document the effectiveness of a preventive family intervention (Family Talk Intervention, FTI) and a brief psychoeducational discussion with parents (Let's Talk about the Children, LT) on children's psychosocial symptoms and prosocial behaviour in families with parental mood disorder, when the interventions are practiced in psychiatric services for adults in the finnish national health service. Patients with mood disorder were invited to participate with their families. Consenting families were randomized to the two intervention groups. The initial sample comprised 119 families and their children aged 8-16. Of these, 109 completed the interventions and the baseline evaluation. Mothers and fathers filled out questionnaires including standardized rating scales for children's symptoms and prosocial behaviour at baseline and at 4, 10 and 18 months post-intervention. The final sample consisted of parental reports on 149 children with 83 complete data sets. Both interventions were effective in decreasing children's emotional symptoms, anxiety, and marginally hyperactivity and in improving children's prosocial behaviour. The FTI was more effective than the LT on emotional symptoms particularly immediately after the intervention, while the effect of the LT emerged after a longer interval. The study supports the effectiveness of both interventions in families with depressed parents. The FTI is applicable in cultural settings other than the USA. Our findings provide support for including preventive child mental health measures as part of psychiatric services for mentally ill parents.

Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007

Ewertzon, M. (2007)

Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.

Psychological characteristics of children of alcoholics

Sher, KJ. (1997)

More than 20 years ago, researchers first noted that children of alcoholics (COA's) appeared to be affected by a variety of problems over the course of their life span. Such problems include fetal alcohol syndrome, which is first manifested in infancy; emotional problems and hyperactivity in childhood; emotional problems and conduct problems in adolescence; and the development of alcoholism in adulthood. Although much has been learned over the ensuing two decades, a number of controversial research areas remain. In particular, debate stems from the fact that despite a common interest in COA's, clinically focused literature and research-focused literature have resulted in two distinct bodies of knowledge. This article reviews important research results, with emphasis on findings generated by the alcohol-research community. Attention also is given to examining the empirical validity of concepts that have been advanced by several influential clinicians from the COA field.

Psychopatology in children of holocaust survivors: a review of the research literature

Kellerman, N. P. F. (2001)

The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.

På väg mot hela vägen. En utvärdering av ”Hela vägens psykiatri” i Gävleborg

Finn, Bengt & Bromark, Kristina (2011)

En rad tragiska händelser i början av 2000-talet som får stor massmedial uppmärksamhet är startpunkten för utredningen Nationell psykiatrisamordning. Utredningen syftade till att se över flera av de områden som berör social omsorg och rehabilitering av personer med psykisk sjukdom eller psykiska funktionsnedsättningar. Statliga stimulansmedel avsattes att användas till kompetenshöjande åtgärder för "baspersonal" inom landstingets psykiatri och kommunernas socialtjänst. 2008 ansökte sex kommuner i Hälsingland och landstinget i Gävleborg om dessa medel och projektet som startas får namnet "Hela vägens psykiatri i Gävleborg".
Det övergripande målet med projektet "Hela vägens psykiatri i Gävleborg" är att förstärka kompetensen bland personal som i sitt dagliga arbete kommer i kontakt med personer med psykisk sjukdom eller psykisk funktionsnedsättning. Kompetenssatsningen syftar till att öka den enskildes (brukarens/patientens) möjligheter till integration i samhället och att leva ett självständigt liv.

Relatives' experiences of the Boston Psychiatric Rehabilitation approach: a qualitative study.

Jormfeldt H, Svensson B, Hansson L, Svedberg P. (2014)

The Boston Psychiatric Rehabilitation (BPR) approach is individualized and
characterized by being based entirely on the individual's unique needs and
preferences in the areas of working, learning, social contacts, and living
environment. Relatives of clients in mental health services influence the
client's possibilities for recovery by their everyday relationship. Relatives
have, however, traditionally had a subordinated role in the care of their
mentally ill family member. The perspective of relatives is an important aspect
in the development of new approaches to psychiatric rehabilitation. The purpose
of this study was thus to describe and explore relatives' experiences of the BPR
approach. Ten relatives of clients in mental health services taking part in the
BPR were interviewed. The interviews were transcribed and analyzed with a
qualitative content analysis method to explore relatives' experiences of the BPR
intervention in a county in Sweden. The findings from the interviews could be
summarized in the theme "To meet the clients' needs" consisting of three
categories: "Dependence on staffs' competence," "Responsibility for user
involvement," and "The necessity for coordination between authorities and
caregivers." The findings suggest that relatives may contribute with important
information about clients' needs related to outcome of care. Relatives'
perspectives may be of importance in future development of BPR. Further research
about the relatives' role in psychiatric rehabilitation is needed as well as
studies that compare different kinds of psychiatric rehabilitation from the
perspective of relatives.

Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?

Kjellin, Lars & Östman, Margareta (2005)

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.

Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors

Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A. (2009)

Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.

Scoping studies: towards a methodological framework

Arksey, H., & O'Malley, L. (2005)

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

Self-reported exposure to intimate partner violence among women and men in Sweden: results from a population-based survey

Nybergh, L., Taft, C., Enander, V., & Krantz, G. (2013)

Background
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.

Methods
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.

Results
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.

Conclusions
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.

Siblings of Children With Disabilities: Research Themes

Stoneman, Zolinda (2005)

Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.

Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation

Visser-Meily A, Post M, Schepers V, Lindeman E. (2005)

BACKGROUND AND PURPOSE:
The purpose of this prospective study was to identify early predictors of spouses' quality of life at 1 year after stroke.
METHODS:
At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed.
RESULTS:
About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified 'passive coping strategy of the caregiver' as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0-4% of the variance.
CONCLUSIONS:
A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.
2005 S. Karger AG, Basel

Striving to survive: Families’ lived experiences when a child is diagnosed with cancer

Björk, Maria, Wiebe, Thomas, Hallström Inger (2005)

When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.

Supportive groups for siblings of pediatric oncology patients: impact on anxiety

Houtzager, B. A., Grootenhuis, B. F. & Last, B. F. (2001)

Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7–18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation.

Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.

Survivors of suicide do grieve differently: Empirical evidence for a common sense proposition

Bailley, S.E., Kral, M.J., & Dunham, K. (1999)

Previous empirical investigations have produced mixed results on the question of whether mode of death differentially affects grief. To further investigate the influence of suicide on grief, 350 previously bereaved university students completed a questionnaire package consisting of several standardized measures. Participants were separated into four groups based on the mode of death experienced as either survivors of suicide (n = 34), accident (n = 57), unanticipated natural (n = 102), or anticipated natural (n = 157) deaths. Hierarchical multiple regression analyses indicated that suicide survivors, compared against the other groups, experienced more frequent feelings of rejection, responsibility, "unique" reactions, and more total grief reactions. Trends indicating increased levels of shame and perceived stigmatization were also evident. Aggregate factors of death "naturalness" and "expectedness" showed less influence than mode of death in influencing grief. Overall, results support previous clinical and research findings and intuitive logic in demonstrating that the grief experienced by suicide survivors includes elements that are less frequently seen in the case of nonsuicidal deaths.

The Behavior Management Flow Chart: a component analysis of behavior management strategies

Danforth, J. S. (1998)

Representative published child behavior management research was reviewed. Based upon the review, a task analysis of child behavior management strategies was conducted. The Behavior Management Flow Chart is a flow chart of the task analysis that synthesizes the research into a cohesive unit and visually depicts actions that adults may be trained to use to manage misbehavior displayed by disruptive children. A discussion compares and contrasts the Behavior Management Flow Chart with Hanf-model behavior management programs, the appropriate unit of analysis is examined, and concerns regarding integrating a wide range of research variables into a unitary model are addressed.

The child´s worries about the mother´s breast cancer: Sources of distress in school-age children

Zahlis, E.H. (2001)

Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.

The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults

Goodman, D. W. (2007)

Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.

The coping experiences of carer´s who live with someone who has schizophrenia.

Huang X, Sun F, Yen W, Fu C. (2008)

AIMS AND OBJECTIVES:
The purpose of this study was to understand the coping experiences of carers living with a schizophrenic family member. Our research may be a valuable reference for mental health professionals seeking to improve the quality of care for people with schizophrenia and their carers.
DESIGN:
We employed a qualitative descriptive phenomenological research methodology to understand the coping experiences of carers living with a schizophrenic family member.
METHODS:
Purposive sampling and in-depth, face-to-face interviews were used to collect data. When data saturation was reached, the sample size comprised 10 carers (five men and five women). The interview focused on the carer's coping experience. During the process of data collection and data analyis we established epoches (bracketing) and returned to the reality of the carers' experience to keep the data objective. Narratives were analysed according to Colaizzi's seven steps method.
RESULTS:
The two most commonly used coping mechanisms that emerged from this study were psychological coping strategies (cognitive, behavioural and emotional) and social coping strategies (religious, social and professional support). Furthermore, three factors were found in the study, including low social status, traditional help-seeking behaviours and feelings of shame.
CONCLUSION:
Findings from this study demonstrate the importance of understanding the coping experiences of carers who have a family member with schizophrenia. Further research is needed to identify more important detailed factors that affect the coping strategies of carers. Relevance to clinical practice. Community mental health care professionals need to improve the quality of care for helping carers living with a family member who has schizophrenia. It is important to develop effective coping intervention strategies that help carers cope with the stress and strain of caring for a family member with schizophrenia.

The definition of disability: what is in a name

Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S. (2006)

The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2

The earnings of informal carers: Wage differentials and opportunity costs

Heitmueller A, Inglis K. (2007)

Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.

The economic consequences of autistic spectrum disorder among children in a Swedish municipality

Järbrink, Krister (2007)

In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.

The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities

Stephenson, J. (2007)

Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.

The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research

Currier, J.M., Holland, J.M., & Neimeyer, R.A. (2007)

Abstract
Grief therapies with children are becoming increasingly popular in the mental health community. Nonetheless, questions persist about how well these treatments actually help with children's adjustment to the death of a loved one. This study used meta-analytic techniques to evaluate the general effectiveness of bereavement interventions with children. A thorough quantitative review of the existing controlled outcome literature (n = 13) yielded a conclusion akin to earlier reviews of grief therapy with adults, namely that the child grief interventions do not appear to generate the positive outcomes of other professional psychotherapeutic interventions. However, studies that intervened in a time-sensitive manner and those that implemented specific selection criteria produced better outcomes than investigations that did not attend to these factors.

The effectiveness of Talking Mats® with people with intellectual disability

Murphy, J., & Cameron, L. (2008)

People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study involving 48 people at four levels of comprehension was designed to compare the effectiveness of Talking Mats with the individual's main communication method. Thirty of the 48 participants were identified as using Talking Mats effectively. Effective use of Talking Mats was associated with functional comprehension. The study found that scores on all indicators of communication effectiveness were higher when using Talking Mats compared to main communication methods. This study identified that Talking Mats can be an effective communication resource for many people with intellectual difficulty and can help them express their views by increasing both the quantity and quality of information communicated.

The effects of child maltreatment and polymorphisms of the serotonin transporter and dopamine D4 receptor genes on infant attachment and intervention efficacy

CICCHETTI, D., ROGOSCH, F. A. & TOTH, S. L. (2011)

This investigation examined the extent to which polymorphisms of the serotonin transporter linked promoter region (5-HTTLPR) and the dopamine receptor D4 (DRD4) genes differentially influenced the development of attachment security and disorganization in maltreated and nonmaltreated infants at age 13 months, and the extent to which the efficacy of preventive interventions to promote attachment security were influenced by genetic variation. The sample consisted of 106 infants from maltreating families, participating in a randomized control trial evaluating the efficacy of two interventions, child-parent psychotherapy and psychoeducational parenting intervention, and 47 infants from nonmaltreating families. DNA samples were genotyped for polymorphisms of 5-HTTLPR, DRD4 exon III variable number tandem repeat, and DRD4-521. Attachment organization at age 1 and at age 2 was assessed with the Strange Situation for all participants, prior to and following the completion of the interventions. High rates of disorganized attachment were observed in the maltreatment compared to the nonmaltreatment group, and both interventions resulted in increased rates of attachment security at age 2. Genetic variation did not influence improvement in attachment organization among maltreated infants. Among maltreated infants, genetic variation had minimal effect on attachment organization. In contrast, among nonmaltreated infants, 5-HTTLPR and DRD4 polymorphisms influenced attachment security and disorganization at age 2 and the stability of attachment disorganization over time.

The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

Young, Z., Moghaddam, N., & Tickle, A. (2016)

OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.

METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.

RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).

CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.

The iconicity of picture communication symbols for children with English additional language and mild intellectual disability

Dada, S., Huguet, A., & Bornman, J. (2013)

The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.

The impact of hippotherapy on grieving children

Glazer, H.R., Clark, M.D. & Stein, D.S. (2004)

ABSTRACT This article looks at the use of therapeutic riding, or hippotherapy, with children who are mourning the death of a family member. Therapeutic riding is the summer program that is part of the Evergreen support group for grieving school-age children and their families. A qualitative study of the impact of the riding program is presented. The research question was whether the children, parents, and adult volunteer would view the program as encouraging the processing of grief and person development. The following themes in perceived outcomes of the program were identified: confidence, trust, and communication skills. The parents and guardians all described the therapeutic riding as a positive experience. They noted an increase in overall communication, including talk about the deceased, as well as an increase in the child's self-confidence and self-esteem. Success with the horses appeared to be important to these children, who expressed pride and joy in their accomplishments.

The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication

Nickerson, A., Aderka, I.M., Bryant, R.A. & Hinton, D.E. (2013)

There has been much controversy regarding the psychological impact of the death of a parent, partly arising from neglect of potential moderating factors. The present study uses data from the National Comorbidity Survey Replication (NCS-R) to investigate the relative impacts of age at death of parent, adverse parenting practices, and time since loss on mental health outcomes in 2,823 bereaved adults. Logistic regression analyses controlling for sex and race revealed that younger age at the time of parental death was associated with poorer mental health outcomes. Further, adverse parenting practices during childhood were related to greater psychopathology in adulthood. Results also indicated that psychological distress following the death of a parent reduces over time. Notably, each of these factors significantly predicted psychopathology when controlling for all other variables. Findings are discussed in the context of current theories of attachment and psychopathology.

The incredible years: Parents, teachers, and children training series

Webster-Stratton C. (2001)

This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.

The NAS EarlyBird Programme: partnerships with parents in early intervention

Shields, J (2001)

Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.

The psychological impact of the intifada on Palestinian children in the occupied West bank and Gaza: an exploratory study

Baker, A. M. (1990)

The mental health of 796 Palestinian children living in the occupied West Bank and Gaza Strip was assessed in terms of reported psychological status and behavioral symptoms. Results, interpreted within the context of the 1987 uprising (Intifada), indicate that exposure to political and military violence may be associated with the onset of conduct problems and fears, although active participation in the conflict may enhance self-esteem and shield children from development of psychological symptoms.

The Relationship Between Violence in the Family of Origin and Dating Violence Among College Students

Gover, A. R., Kaukinen, C., & Fox, K. A. (2008)

Prior research has established that violence in dating relationships is a serious social problem among adolescents and young adults. Exposure to violence during childhood has been linked to dating violence victimization and perpetration. Also known as the intergenerational transmission of violence, the link between violence during childhood and dating violence has traditionally focused on physical violence. This research examines the relationship between experiencing and perpetrating dating violence and exposure to violence in the family of origin. Specifically, the current research examines gender differences in the relationship between exposure to violence during childhood and physical and psychological abuse perpetration and victimization. Data were collected from a sample of approximately 2,500 college students at two southeastern universities. Findings indicate that childhood exposure to violence is a consistent predictor of involvement in relationships characterized by violence for males and females. The implications of the current research on policy are discussed.

The relative efficacy of two levels of a primary care intervention for family members affected by the addiction problem of a close relative: a randomized trial

Copello A, Templeton L, Orford J, Velleman R, Patel A, Moore L, et al. (2009)

OBJECTIVES:
A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative.
DESIGN:
A prospective cluster randomized comparative trial of the two interventions.
SETTING:
A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England.
PARTICIPANTS:
A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks.
MAIN OUTCOME MEASURES:
Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention.
RESULTS:
The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm.
CONCLUSIONS:
A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.

The role of parent training in treatment of preschoolers with ADDH

Pisterman S., Firestone P., McGrath P., Goodman J., Webster I., Mallory R. & Goffin, B. (1992)

Abstract
The efficacy of group parent training was assessed in improving compliance and time on task in preschoolers with attention-deficit disorder with hyperactivity. Positive effects were obtained on measures of child compliance, but not on measures of attention. Parental compliance-management skills and overall style of interaction were also positively affected. The use of parent training for early intervention with ADDH children is discussed.

The sense of security in care--Relatives' Evaluation instrument: its development and presentation

Krevers B, Milberg A (2015)

CONTEXT: Relatives' sense of security in their family members' palliative home
care is important, and a valid and reliable instrument is needed to measure this.
OBJECTIVES: The aim of this article is to report the development, structure, and
psychometric properties of a new instrument, the Sense of Security in
Care--Relatives' Evaluation (SEC-R), in palliative home care.
METHODS: Instrument development was based on a previous study and review of the
literature; 213 relatives (55% women) of patients in palliative home care were
recruited (response rate 73%) and participated in a structured interview based on
a questionnaire. Principal component analysis (PCA) was used to identify
subscales. The construction was tested in correlation with other scales and
questions representing concepts expected to be related to sense of security in
care. RESULTS: The PCA resulted in three subscales, namely care interaction, mastery
and patient situation, which had an explained variance of 53%. Internal
consistency of the subscales ranged from 0.76 to 0.78. The final instrument
comprises 17 items. The scales were associated with the quality-of-care process
and the relatives' situation, perceived health, quality of life, stress, general
sense of security, and general sense of security in care.
CONCLUSION: The SEC-R provides a three-component assessment of palliative home
care settings using valid and reliable scales associated with other concepts. The
SEC-R is a manageable means of assessment that may contribute to quality-of-care
measures and to further research on relatives' sense of security in care.

The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity

Fals-Stewart W, Birchler GR, Kelley ML. (2003)

The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.

Theorethical perspectives on siblings relationships

Whiteman S, Michale S, Soli A. (2011)

Although siblings are a fixture of family life, research on sibling relationships lags behind that on other family relationships. To stimulate interest in sibling research and to serve as a guide for future investigations by family scholars, we review four theoretical psychologically oriented perspectives—(a) psychoanalytic-evolutionary, (b) social psychological, (c) social learning, and (d) family-ecological systems— that can inform research on sibling relationships, including perspectives on the nature and influences on developmental, individual, and group differences in sibling relationships. Given that most research on siblings has focused on childhood and adolescence, our review highlights these developmental periods, but we also incorporate the limited research on adult sibling relationships, including suggestions for future research on this fundamental family relationship.

Time, human agency, and social change: Perspectives on the life course

Elder, G.H. Jr. (1994)

The life course has emerged over the past 30 years as a major research paradigm. Distinctive themes include the relation between human lives and a changing society, the timing of lives, linked or interdependent lives, and human agency. Two lines of research converged in the formation of this paradigm during the 1960s; one was associated with an older "social relationship" tradition that featured intergenerational studies, and the other with more contemporary thinking about age. The emergence of a life course paradigm has been coupled with a notable decline in socialization as a research framework and with its incorporation by other theories. Also, the field has seen an expanding interest in how social change alters people's lives, an enduring perspective of sociological social psychology.

Training care givers of stroke patients: economic evaluation.

Patel A, Knapp M, Evans A, Perez I, Kalra L. (2004)

Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated.

Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers.

Design A single, blind, randomised controlled trial.

Setting Stroke rehabilitation unit.

Subjects 300 stroke patients and their care givers.

Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training.

Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke.

Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers.

Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.

Treatment-seeking young adults from families with alcohol problems. What have they been through? What state are they in?

Mackrill, T., Elklit, A. & Lindgaard, H. (2012)

Aims: This study surveys the childhood experiences of treatment-seeking young adult offspring of problem drinkers (AOPDs) and their psychological state at treatment baseline. Methods: Clients (N=502) entering a Danish nationwide treatment facility for young AOPDS completed the survey. Clients completed the Adult Children of Alcoholics Trauma Inventory, The Family Tree Questionnaire, the CORE–OM 34, Major Depression Inventory, and the Work and Social Adjustment Scale at treatment start. Results: A total of 48% of the clients' mothers and 75% of the clients' fathers were problem drinkers. Both parents were problem drinkers in 25% of cases, and 27% had at least one problem drinking stepparent. Mothers had on average drunk during 11.4 years of the clients' childhood (0–18 years). Fathers had on average drunk during 13.4 years; 46% knew or believed that at least one of their parents suffered from a psychiatric illness; 44% reported physical violence; 63% reported psychological abuse; and 38% had not spoken to anyone about their family's problem. A further 20% had only spoken to a parent or sibling. Conclusions/implications: The study highlights the high degree of variation in AOPD clients' childhood experiences and in their levels of distress, corresponding with studies of non clinical samples. The study offers a bleak image of the extent of parental drinking and of other negative factors in these clients' childhood homes, coupled with the finding that clients have often not spoken to others about their parents' drinking. Mentioning parental drinking to a counsellor is thus a potentially highly significant counselling event, demanding counsellor sensitivity and attention.

Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial.

Hansson H, Rundberg J, Zetterlind U, Johnsson KO, Berglund M. (2007)

BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

Uppföljning av ändring i hälso- och sjukvårdslagen gällande fast vårdkontakt mm. Slutrapport

Socialstyrelsen (2012)

Lagändringen i hälso- och sjukvårdslagen om bland annat fast vårdkontakt är inte särskilt väl känd inom vården och bland patienter. Det visar uppföljningen som också pekar på att det finns ett stort behov av information och utbildning. Vårdgivarna behöver även införa rutiner för att tydliggöra hur fast vårdkontakt ska fungera i praktiken.

Socialstyrelsen fick i regleringsbrevet för 2011 i uppdrag av regeringen att följa upp lagändringarna från den 1 juli 2010 i hälso- och sjukvårdslagen (1982:763), HSL, om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten.

Uppföljningen ska särskilt uppmärksamma hur lagändringarna tillämpats, vilken effekt de har fått och hur väl patienter, personal och hälso- och sjukvårdsverksamheter känner till lagändringarna.

Drygt hälften av landstingen och hälso- och sjukvårdsverksamheterna uppger att de fick information om lagändringen före, eller direkt i samband med att den trädde i kraft den 1 juli 2010.

Uppföljningen visar att lagändringen i HSL om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten inte är särskilt väl känd bland hälso- och sjukvårdsverksamheterna, professionen eller patienterna.

Uppföljningen pekar också på att det finns ett stort behov av informations- och utbildningsinsatser om lagändringarna från vårdgivarnas sida. Det gäller samtliga de aktuella ändringarna i HSL, men framförallt rättigheten för patienten till en fast vårdkontakt.

Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig kan fungera som underlag för vårdgivare och verksamhetschefer i ett arbete med sådana insatser. Socialstyrelsen planerar även att ta fram ett meddelandeblad med information om de aktuella lagändringarna, och framförallt om fast vårdkontakt.

Socialstyrelsen har vidare identifierat att det finns ett behov av att vårdgivare säkerställer att förnyad medicinsk bedömning fungerar som det är tänkt. I samband med detta kan vårdgivarna även behöva kontrollera att man använder det aktuella regelverket Socialstyrelsens bedömning är att det har gått för kort tid sedan lagändringarna för att vi ska kunna uttala oss om den långsiktiga effekten av lagändringarna. Representanterna för intresseorganisationerna, läkarna och sjuksköterskorna som deltog i uppföljningen om lagändringarna är dock hittills mycket positiva till förändringarna i sig.

Uppföljningen visar också följande:

Lagändringens genomslag i hälso- och sjukvårdens styrdokument är begränsat och det kan finnas ett behov av att ta fram rutiner och olika typer av styrdokument på alla nivåer i hälso- och sjukvården. Denna typ av rutiner och styrdokument kan behövas för att skapa kontinuitet och samordning i verksamheterna.
Det råder stor osäkerhet om lagändringen i hälso- och sjukvårdsverksamheterna, framförallt när det gäller hur bestämmelsen om fast vårdkontakt ska omsättas i praktiken och vilka befogenheter den fasta vårdkontakten ska ha. Det finns ett behov för vårdgivar-na att tydliggöra detta, särskilt när det gäller samverkan med andra verksamheter.
Majoriteten av vårdcentralerna och cirka hälften av sjukhusklinikerna har inte haft några patienter som tilldelats en fast vårdkontakt. I den kommunala hemsjukvården har ca en tredjedel av verk-samheterna haft en eller flera patienter som tilldelats en fast vårdkontakt.
Informationen om fast vårdkontakt och förnyad medicinsk bedömning behöver förbättras på landstingens webbplatser och på informationssidan 1177. Information om vårdgarantin och rätten att välja vårdgivare inom den offentligt finansierade hälso- och sjukvården finns på i stort sett alla webbplatser. Information om fast vårdkontakt finns bara på ett landstings webbplats och på en minoritet av landstingens informationswebbplats 1177. Information om förnyad medicinsk bedömning är lätt att hitta på 1177 men något svårare att hitta på landstingens webbplatser.
De flesta patientnämnder har haft ärenden med koppling till lagändringen. Ärenden gällande förnyad medicinsk bedömning är vanligast.
Drygt hälften av verksamhetscheferna vid sjukhuskliniker och vårdcentraler och fyra av tio verksamhetsansvariga vid hemsjukvården uppger att de har haft stöd av Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig.

Use of eye‐pointing by children with cerebral palsy: what are we looking at?

Sargent, J., Clarke, M., Price, K., Griffiths, T., & Swettenham, J. (2013)

BACKGROUND:
Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development.
AIMS:
To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.
METHODS & PROCEDURES:
Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.
CONCLUSIONS & IMPLICATIONS:
In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Utilization of medical healthcare among people receiving long-term care at home or in special accommodation

Condelius, A., Edberg, A.-K., & Rahm Hallberg, I. (2010)

AIM:
To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1-year period in relation to informal care, multimorbidity, functional status and health complaints and to long-term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long-term care.
METHOD:
A total of 694 people receiving long-term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables.
FINDINGS:
Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = -0.060) and outpatient care (B = -0.581).
CONCLUSION:
Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.

Validation of the CHORES: A measure of school-aged children´s participation in household tasks

Dunn L. (2004)

The CHORES (Children Helping Out: Responsibilities, Expectations, and Supports) is a clinical and research tool that measures school-aged children's participation in household tasks. Separate performance and assistance scores enable examination of changes in children's responsibilities for household tasks as they mature and the work of families to promote their participation. The Self-Care and Family-Care subscales afford study of cultural aspects of household tasks that may influence children's participation and opportunities for learning. Thirty-two parents from diverse backgrounds participated in the first part of the study. Twenty-one of these parents participated in the test–retest study. The sample was culturally diverse and included parents of 6- to 11-year-old children with and without disabilities who have average or above intellect. Results from the psychometric analyses show that the CHORES has strong reliability and validity. The variance in children's task performance and overall levels of assistance supports the utility of this measure for capturing differences among children in the extent of their participation. Stability of parents' responses over time is strong both for performance (ICC, r=0.88) and for assistance (ICC, r=0.92) scores. The validity of the CHORES is supported by the parents' judgments of the importance of involving their children in household tasks. The CHORES is easy to complete, considers the parent's perspective, and provides a way to collect information on children's participation in household tasks. The CHORES provides a mechanism to learn more about factors that influence children's participation in household tasks, changes in their responsibilities over time, and outcomes from their participation in these tasks.

Women in the Middle. Their Parent-care Years

Brody, E. (2004)

Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.

Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.

Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.

Workforce capacity to respond to children whose parents have a mental illness

Maybery, D., & Reupert , A. (2006)

Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.

Young carers and their Families

Becker, S., Aldridge, J., & Dearden, C. (1998)

TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .

A day in the life of a child caring for a parent with multiple sclerosis.

Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.

Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.

The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."

Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.

School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.

I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.

A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.

The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.

It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.

What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.

So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.

"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."

Trickey, R (2008)

The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.

 

"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure

Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson (2019)

Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."

Wolff, J. F. and Agree, E.M. (2004)

Abstract

OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.

METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.

RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.

DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.

"Easing the way" for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention

Ott, C. H., Kelber, S. T., & Blaylock, M. (2010)

A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.

"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

Ducharme FC, Levesque LL, Lachance LM, Kergoat M-J, Legault AJ, Beaudet LM, et al. (2011)

Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.

"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services

Weimand BM, Hedelin B, Hall-Lord M-L, Sällström C. (2011)

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."

Westwood, S. (2013)

Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life

"Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system.

Fjose M., Eilertsen G., Kirkevold M., Grov EK. (2018)

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen

Sundström, G. (2001)

Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.

"Parent Management Training as a Treatment for Children with Oppositional Defiant Disorder Referred to a Mental Health Clinic."

Costin J (2007)

Parent Management Training (PMT) has been shown to be an empirically supported intervention in ameliorating antisocial behaviour problems. Less evidence is available to demonstrate the effectiveness of PMT in routine public-health-oriented community-based settings where the presence of comorbid disorders complicates the picture. The current study was undertaken to investigate the effectiveness of PMT as a treatment for primary school-age children with Oppositional Defiant Disorder (ODD) and comorbid disorders offered by clinical staff as part of clinical practice. An Australian sample of 94 parents of children diagnosed with ODD by structured interview was provided with eight sessions of PMT. Measures used to assess changes in child behaviour symptoms were the Eyberg Child Behavior Inventory, the Parent Stress Index Child Domain, and the Child Behavior Checklist. Clinically relevant and statistically significant outcome results were found at posttreatment and at 5 months follow-up. There was a reduction in child symptomatology but no evidence of any effect of comorbidity on outcome. These findings are important for the clinical field as they show that PMT is a robust intervention suitable for routine clinical practice even when comorbid disorders are present in addition to ODD.

"You don't want to burden them": older adults' views on family involvement in care

Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R. (2009)

Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.

“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”

Flint, A. J. (2005)

Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.

“It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological well-being in adolescents providing dementia care

Perion, Jennifer Steiner, Victoria Ames, April (2021)

According to a 2018 report by the Alzheimer's Association, an estimated 250,000 children help support a family member with dementia, but few studies exist that describe their experience as family carers. This qualitative descriptive study sought to understand the perceived psychological well-being of adolescents who assist with providing care to family members with dementia. Eleven adolescents ages 12 to 17 caring for older non-parental family members with dementia in northwest Ohio participated in one of three focus group discussions. An adult family member was surveyed about family background and level of assistance provided. The data from the two questionnaires were analyzed using descriptive statistics. Focus group transcripts were analyzed using thematic content analysis. Thematic analysis revealed six themes related to psychological well-being: 1) Feeling compassion for the family member; 2) Finding connection through fun, humor, and mutual affection; 3) Helping even though it is not always pleasant; 4) Feeling good inside about helping family "do stuff"; 5) Believing no one can do it like family; and 6) Reflecting that it is just something that they do. The findings of this study provide new insight into adolescents' experiences of dementia family care and how it affects their psychological well-being. An examination of the themes suggests that secondary caring roles were mostly positive in nature and may help adolescents forge closer family relationships, find opportunities for personal growth and development, and overcome challenges to grow more confident. These findings may also suggest ways to include adolescents in family care as a means of positive growth opportunities. •Dementia caregiving was mostly a positive experience for adolescents.•Family obligations elicited feelings of connectedness.•Adolescents found ways to overcome feelings of aversion when providing care.•Emergent themes were consistent with Ryff's dimensions of physiological well-bring.•Results may be used to develop supportive and enriching programs for families.

“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.

Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J. (2009)

OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.

“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder

Focht-Birkerts, L., & Beardslee, W.R. (1996)

This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.

”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen

Carlhed, Carina (1998)

Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal

”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”

Fröjdh, K., Håkansson, A., & Jansson, S. (2003)

OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.

”Because we know our limits”: Elderly parents´ view on intergenerational proximity and intimacy

Hjälm, A. (2012)

From an intergenerational family perspective, geographical distance and proximity have been shown to affect interaction and the extent of help and support between generations. Geographical separation and nearness hence do not only influence the family per se, but might also concern the welfare state, not least in times of population ageing. This study concerns exchange and assistance between elderly parents living very close to an adult child, and is based on interviews with 14 elderly parents. The interviews revealed that help and support flowed in both directions between the close-living generations, but that from the perspective of the elderly some types of help were more acceptable than others to give and receive. Further, the interviews suggested that living close, albeit discussed as allowing extensive interaction and support, should not be understood as a sign of wanting or even accepting more extensive help from the close-living adult child.

”No, you don’t know how we feel”: Groupwork with children facing parental loss

Chowns, G. (2008)

Groupwork with bereaved children has become increasingly common. However, working with children anticipating potential bereavement has received much less attention. Similarly, research within this area in palliative care has been notable for two things - its paucity and its failure to address the perspective of the children themselves. The author, a palliative care social worker, turned to the action research paradigm for an approach that would more effectively engage with and illuminate these children's experiences, and undertook a collaborative inquiry - where the research is conducted with rather than for, on, or about the participants - with nine children aged from seven to fifteen. Collaborative inquiry raises - and challenges - many key issues in both research and groupwork, such as voice, power and identity, ethics and competence. This article addresses a number of these issues, with a particular focus on identity.

”Over the rainbow” a prevention group for bereaved children and families in a rural area

Miller, J.S. (2010)

Akademisk Avhandling

The death of a loved one is a difficult experience for a child. However, prior research has found several characteristics that put some children at a greater risk than others. This study examined the unique needs that rural communities face trying to provide services to bereaved children and their families. The primary purpose of this study was to evaluate the effectiveness of a one-day bereavement camp for children and families in a rural area who have lost someone close to them. Participants completed quantitative and qualitative measures designed to evaluate the group. The camp was offered on four occasions, but despite intensive recruitment only seven participants attended. Although the group was well-liked and beneficial to those who attended, the recruitment and attendance difficulties suggest this may be an inefficient use of time and money for the provision of bereavement services to the community. A follow-up study was created to investigate the barriers and possible solutions to aid future programs. Fourteen key informants in the community were interviewed to address this topic and grounded theory was utilized to examine the results. Findings were consistent with the difficulties for other rural mental health programming in regards to accessibility and acceptability. Rural core providers must be aware of these unique variables in rural culture that lead to barriers to treatment and determine which strategies fit best to meet the needs of individuals in these communities.

”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat

Högberg, Anette (2009)

Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.

”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers

Smyth C, Blaxland M, Cass B. (2011)

A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.

A brief measure of social support: practical and theoretical implications

Sarason IG, Sarason BR, Shearin N, Pierce GR. (1987)

Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.

A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan

Shyu YI, Kuo LM, Chen MC, Chen ST. (2010)

Aim and objective.  To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke.

Background.  Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families.

Design.  A randomised experimental design was used.

Method.  Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach.

Results.  During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (β = 0·45; p = 0·03) than the control group. Between the sixth–twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (χ2 = 5·11; p = 0·03).

Conclusion.  Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation.

Relevance to clinical practice.  Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.

A cluster analysis of patients with schizophrenia in community care

Lora A, Cosentino U, Rossini MS, Lanzara D. (2001)

In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial

Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al. (2013)

BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.

A comparative study of nursing staff, care recipients´ and their relatives´ perceptions of quality of older people care

Hasson, H., & Arnetz, J. E. (2010)

Background.  Comparisons of different stakeholders' ratings of the quality of older people care can help to drive quality improvement.

Aim.  The aim was to compare staff, older care recipients' and their relatives' quality of care ratings.

Design.  Cross-sectional questionnaire surveys in 2003 and 2004, using a repeated measures design on an organizational level.

Methods.  Nursing staff, care recipients and relatives in two older people care organizations were included. The ratings of an overall quality grade, information, activities, general care and staff skills were compared between the respondent groups.

Results.  Care recipients in both organizations rated the overall quality grade significantly higher than nursing staff and relatives. Staff ratings of the information given to care recipients were significantly more positive than care recipients' and relatives' ratings. All three groups gave lowest ratings to the quality of activities offered to care recipients, with lowest ratings from nursing staff.

Conclusions.  Concurrent measurements of staff, care recipients and relatives' care quality perceptions can provide a broad evaluation of an organization's strength and limitations.

Relevance to clinical practice.  Staff, care recipients' and relatives' perceptions can be useful for older people care organizations and decision makers in developing care processes and outcomes of care.

A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007

Nepal B, Brown L, Ranmuthugala G, Percival R. A (2011)

Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.

A conceptual framework for examining the promise of the NORC program and Village models to promote aging in place

Greenfield , E. A., (2012)

A growing paradigm shift emphasizes efforts to promote aging in place not only by helping aging individuals and families, but also by addressing and engaging communities. This paper explores the idea of developing community supports for aging in place by examining two models that incorporate this approach into practice: Naturally Occurring Retirement Community Supportive Service Programs (NORC programs) and Villages. Drawing on research regarding social–relational aspects of communities and later-life health and well-being, we present an integrative conceptual framework positing three categories of activities and services (civic engagement and empowerment activities; social relationship building activities; services to enhance access to resources)–as well as the initial outcomes and intermediate outcomes–through which the NORC program and Village models potentially achieve their long-term goal of promoting aging in place. Based on this framework, we conclude with directions for future research on community initiatives that support aging in place.

A conceptual framework of outcomes for caregivers of assistive technology users

Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F. (2009)

Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.

A constructionist discourse on resilience

Ungar, M. (2004)

An ecological approach to the study of resilience, informed by Systems Theory and emphasizing predictable relationships between risk and protective factors, circular causality, and transactional processes, is inadequate to account for the diversity of people's experiences of resilience. In contrast, a constructionist interpretation of resilience reflects a postmodern understanding of the construct that better accounts for cultural and contextual differences in how resilience is expressed by individuals, families, and communities. Research supporting this approach has demonstrated a nonsystemic, nonhierarchical relationship between risk and protective factors that is characteristically chaotic, complex, relative, and contextual. This article critically reviews research findings that support an ecological perspective and explores the emerging literature that informs a constructionist approach to the study of resilience. It will show that an alternate constructionist discourse on resilience greatly enhances our understanding of resilience-related phenomena and our approach to interventions with at-risk youth populations.

A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse

Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al. (2014)

Objective: Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design. Method: Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization. Results: As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers. Conclusion: Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse

Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al. (2014)

OBJECTIVE:
Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design.
METHOD:
Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization.
RESULTS:
As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers.
CONCLUSION:
Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed.

A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs

Schuckit, MA., Smith, TL., Kalmijn, J., & Danko, GP. (2005)

Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations

Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol

Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items

Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.

A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation

Perrin, P. B., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J.,Rittman, M. (2010)

Abstract

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention

A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation.

Perrin PB, Johnston A, Vogel B, Heesacker M, Vega-Trujillo M, Anderson J, et al (2010)

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.

A desire to be seen: family caregivers' experiences of their caring role in palliative home care

Linderholm, M., & Friedrichsen, M. (2010)

Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

A dispositional and situational assessment of children’s coping: Testing alternative models of coping

Ayers, T.S., Sandler, I.N., West, S.G. & Roosa, M.W. (1996)

ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.

A family perspective for substance abuse: implications from the literature

Gruber KJ, Taylor MF (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.

A family perspective for substance abuse: implications from the literature.

Gruber KJ, Taylor MF. (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
Keywords: family | substance abuse | family functioning | parental alcohol use | parental drug
use | substance abuse research

A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder

Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R. (2002)

The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.

A functional analysis of resistance during parent training therapy

Patterson, G., & Chamberlain, P. (1994)

A decade of programmatic studies of resistance during parent training therapy is reviewed, including a brief description of a procedure developed for coding resistant behavior. Analyses of sequential interactions during treatment show that therapists' efforts to intervene produced immediate parental resistance. From baseline to midtreatment phases, there were increases in the therapists' efforts to intervene, which were in turn accompanied by Increases in parental resistance. Contextual variables such as parent pathology also correlated with higher levels of resistance. Decreases in resistance were associated with improvements in parental discipline practices. Parental resistance altered the behavior of the therapists, reducing their effectiveness. A regression analysis shows that improvements in discipline predicted fewer future arrests and out-of-home placement.

A future for family care and dementia intervention research? Challenges and strategies

Zarit SH, Femia EE. (2008)

Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.

A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device

Valiquette, C., Sutton, A., & Ska, B. (2010)

This article reports on the views of individuals with learning disability (LD) on their use of their speech generating devices (SGDs), their satisfaction about their communication, and their priorities. The development of an interview tool made of graphic symbols and entitled Communication, Satisfaction and Priorities of SGD Users (CSPU) is described in detail. The tool was used to support comprehension and to elicit the opinions of eight individuals with LD who had severe communication disorders. Most participants reported that they did not use their SGDs in situations in which they needed them in order to communicate effectively. The participants' parents corroborated these statements but they identified priorities that were different from their child's. The results emphasize the necessity of permitting individuals with severe communication disorders to take part in decision-making by indicating their satisfaction and priorities for intervention. Methodological issues and future use of the evaluation tool in research and in clinical settings are discussed.

A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability

Harrison, T. C. & Stuifbergen, A. (2005)

In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.

A support group programme for relatives during the late palliative phase

Henriksson, A. and B. Andershed (2007)

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

A systematic and methodological review of interventions for young people experiencing alcohol-related harm

Calabria B, Shakeshaft AP, Havard A. (2011)

Aims This review identified published studies evaluating interventions delivered outside educational settings, designed for young people with existing alcohol use problems, or who participate in behaviour that places them at high risk of alcohol-related harm, critiqued their methodology and identified opportunities for new interventions.

Methods A systematic search of the peer-reviewed literature interrogated 10 electronic databases using specific search strings, limited to 2005–09. No additional studies were found by a librarian searching other collections and clearing-houses, or by hand-searching review paper reference lists. The 1697 articles identified were reviewed against criteria from the Dictionary for the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies.

Results The methodological quality of existing studies is variable, and needs to be both more rigorous and more consistent. Particular problems include the lack of blinding outcome assessors, a reliance solely on self-report measures, highly variable consent and follow-up rates, infrequent use of intention-to-treat analyses and the absence of any economic or cost analyses. The range of interventions evaluated is currently limited to individually focused approaches, almost exclusively implemented in the United States.

Conclusions There is a great need for more intervention trials for young people at high risk of experiencing alcohol-related harm that are both methodologically rigorous and have a broader community focus, to complement the psychological interventions that currently dominate the relevant literature. Such trials would improve outcomes for high-risk young people themselves and would improve the evidence base, both in their own right and by facilitating future meta-analyses.

Care robot orientation: What, who and how? Potential users’ perceptions

Johansson-Pajala, Rose-Marie ; Thommes, Kirsten ; Hoppe, Julia A ; Tuisku, Outi ; Hennala, Lea ; Pekkarinen, Satu ; Melkas, Helinä ; Gustafsson, Christine (2020)

Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.

Care trajectories in the oldest old. Diss.

Ernsth, Bravell, M. (2007)

This thesis demonstrates relations among health, social network, ADL and patterns of care in the oldest old guided by a resource theoretical model.The analyzed data are based on two studies: the Nona study, a longitudinal study of 157 individuals aged 86 to 94 years, and the H70 study, a longitudinal study of 964 individuals aged 70 at baseline. Data were collected by interviews and to some extent in the H70 study, medical exams and medical records.The results demonstrate that perceived resources seem to affect patterns of care to a higher extent than the more objective resources in the sample of the oldest old. On the other hand, sociodemographic variables such as gender, marital status and SES, in addition to the more objective resources of having children nearby and the number of symptoms of illness predicted institutionalization during a subsequent 30-year period from the age of 70. The proportion of elderly persons' institutionalization was further significantly higher than that generally found in cross-sectional studies. ADL was one of the strongest predictors for both use of formal care and institutionalization in both samples, indicating an effective targeting of the formal care system in Sweden. The care at end of life in the oldest old is challenged by the problems with progressive declines in ADL and health, which makes it hard to fit in the dying oldest old in the palliative care system. There is a need to increase the knowledge and the possibility for care staff to support and encourage social network factors and for decision-making staff to consider factors beyond ADL.

Caregiver -- Who Copes How?

Chappell, N. L., & Dujela, C. (2009)

Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.

Caregiver burden and coping in schizophrenia and bipolar disorder: A qualitative study

Ganguly, K. K., R. K. Chadda, et al. (2010)

Caregivers of people with severe mental disorders suffer from having a considerable burden as a result of their caregiving role. They develop different kinds of coping strategies to deal with this burden. There has been a lack of qualitative studies on caregiver burden and coping, especially from non-Western populations. The present paper reports findings of a longitudinal study of burden and coping in a group of caregivers of people suffering from schizophrenia and bipolar affective disorder (BAD). Qualitative assessments were done by focus group discussions (FGDs) with the caregivers over a period of about a year. Caregivers reported burden in different areas including effects on family functioning, social isolation, financial problems, and health. They used multiple coping strategies including developing compassion in caregiving, hoping for a better future, developing faith in God, participating in religious practices, and helping others with a similar problem.

Caregiver burden and coping: A prospective study of relationship between burden and coping in caregivers of patients with schizophrenia and bipolar affective disorder

Chadda, R. K., T. B. Singh, et al. (2007)

Introduction: Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. Aim: The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. Method: One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist--Hindi Adaptation (WCC--HA). Results: Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Conclusions: Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.

Caregiver burden as a short-term predictor of weight loss in older outpatients suffering from mild to moderate Alzheimer's disease: a three months follow-up study

Bilotta, C., Bergamaschini, L., Arienti, R., Spreafico, S., & Vergani, C. (2010)

Abstract
OBJECTIVE:

To determine if caregiver burden (CB) can be an independent predictive factor of weight loss at three months in older outpatients suffering from mild to moderate Alzheimer's disease (AD) and living at home.
METHOD:

Prospective cohort study involving 105 subjects aged 70 years or more, affected by mild to moderate AD and living at home with the assistance of at least one informal caregiver, who consecutively underwent a multidimensional geriatric assessment. Body weight was re-evaluated at a three month follow-up, from December 2008 to April 2009. Those who experienced a weight loss greater than 3% of the baseline weight constituted the 'weight loss' group.
RESULTS:

Out of the 97 older participants attending follow-up, 22 (23%) had experienced a weight loss > 3%. At a multivariate logistic regression analysis, a greater CB at baseline, defined by a score of the caregiver burden inventory scale in the highest tertile (i.e. 36+ out of 96), turned out to predict weight loss at three months (odds ratio (OR) 13.93, 95% confidence interval (CI) 1.91-101.33, p = 0.009), independently of other factors associated with the 'weight loss' group such as age, functional dependence and the risk of malnutrition estimated by means of the Mini Nutritional Assessment Short Form (MNA-SF).
CONCLUSION:

For older outpatients affected by mild to moderate AD and living at home, CB constitutes a risk factor for weight loss even in the short-term, independently of other factors such as the risk of malnutrition assessed by means of the MNA-SF.

Caregiver Confidence: Does It Predict Changes in Disability Among Elderly Home Care Recipients?

Li, L. W. and S. J. McLaughlin (2012)

PURPOSE OF THE STUDY: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional self-efficacy jointly influence changes in ADL performance over time. DESIGN AND METHODS: The sample included 5,138 elderly recipients of home and community-based long-term care in Michigan. ADL performance was assessed multiple times over a 2-year period. Caregiver confidence was measured at baseline with a single item. Multilevel modeling was used to estimate the effect of caregiver confidence on changes in ADL performance over time, controlling for baseline self-efficacy, ADL performance, and other factors that might confound the relationship. Based on caregiver confidence and elder self-efficacy, we created 4 groups of elder caregiver dyads to explore the combined effect of caregiver and elder confidence on change in ADL performance. RESULTS: Elders whose caregivers were confident in their capacity for greater functional independence experienced greater improvement in ADL performance than those whose caregivers were not confident. Elders in dyads in which both members expressed confidence experienced more improvement in ADL performance than those in dyads in which either one or both members lacked confidence. IMPLICATIONS: Interventions to strengthen caregivers' confidence in their care recipients' functional capabilities may slow functional losses among home care elders. Additional research is needed to confirm these findings and identify the factors that influence caregiver confidence.

Caregiver credits in France, Germany, and Sweden: Lessons for the United States

Jankowski, J. (2011)

Recently, analysts in the United States (US) have proposed adopting caregiver credits, or pension credits, provided to individuals for time spent out of the workforce while caring for dependent children and sick or elderly relatives. The primary objective of these credits, used in almost all public pension systems in the European Union, is to improve the adequacy of old-age benefits for women whose gaps in workforce participation typically lead to fewer years of contributions, lower lifetime average earnings, and consequently lower pensions. This article examines caregiver credits in the context of future reforms to the US Social Security system, with attention given to the adequacy of current spouse and survivor benefits and how changing marital patterns and family structures have increased the risk of old-age poverty among certain groups of women. It then analyzes caregiver credit programs in selected countries, with particular focus on design, administration, and cost.

Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.

Sandstedt P., Littorin S., Cröde Widsell G., Johansson S., Gottberg K., Ytterberg C., Olsson M., Widén Holmqvist L., Kierkegaard M. (2018)

AIMS AND OBJECTIVES: This study set out to describe caregiver experience,
health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction.
BACKGROUND: Knowledge about factors related to caregivers' health-related qualityof life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included.
Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction
Checklist) and caregiver- and patient-related factors. Associations were explored
by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction.
CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction.
RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Caregiver Participation in Hospice Interdisciplinary Team Meetings via Videophone Technology: A Pilot Study to Improve Pain Management

Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., Porock, D., Collier, J., & Arthur, A. (2010)

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

Caregiver Participation in Hospice Interdisciplinary Team Meetings via Videophone Technology: A Pilot Study to Improve Pain Management

Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., Porock, D., Collier, J., & Arthur, A. (2010)

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

Caregiver responsiveness to the Family Bereavement Program: what predicts responsiveness? What does responsiveness predict?

Schoenfelder, E.N., Sandler, I.N., Millsap, R.E., Wolchik, C.B., Berkel, C., & Ayers, T.S. (2013)

Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.

Caregiver strain in Parkinson's disease and the impact of disease duration

Lökk ,J. (2008)

Abstract
AIM:
The task of managing care for patients with Parkinson's disease (PD) often falls upon a family member taking on the role as a caregiver (CG) implying a burden on these CGs. The aim of this study was to evaluate CG strain of PD patients with regarding different psychosocial domains and the influence of PD/CG duration of PD.
METHODS:
A cross-sectional telephone interview survey of 451 CGs randomly selected from the registry of the Swedish Parkinson's Disease Association. A structured questionnaire covering sociodemographic, psychosocial, and general CG factors, sleep and depression of the CG as well as issues of the patient's disease was used by 4 independent interviewers blinded to the study objective.
RESULTS:
Four hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years with 62% females. The results were stratified in 3 groups with regard to disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. General health condition of the CGs was regarded satisfactory independent of disease duration. Insufficient sleep and disease related stress were considered to be prominent in 36% and 61%, respectively, being significantly more prominent in the group with the longest disease duration. Decreased mood was reported in 31% with no difference between groups. More than 30% of CGs also experienced daily problems with tiredness and sleep disturbance; 27% hypertension; 17% muscle strain, headache and fatigue; and 14% gastro-intestinal problems most items regardless of disease duration. The most troublesome symptoms of the patients to the CGs were reported to be the motor dysfunction (58%). More than half experienced little or no understanding of their situation.
CONCLUSION:
CGs are afflicted with strain and burden in many psychosocial and somatic domains despite satisfactory general wellbeing independent of disease duration. The longer disease duration, and, accordingly CG duration, the more impact on certain domains of CG burden, however, with little understanding of their situation. These findings should be given greater consideration when organizing and planning for PD care in the health care system and the community.

Caregivers dealing with stroke pull together and feel connected

Pierce LL, Steiner V, Govoni AL, Hicks B, Thompson TL, Friedemann ML. (2004)

Changes that can accompany stroke may create considerable stress for individuals caring for the affected person. This study explored the coping process for nine rural-dwelling caregivers of persons with stroke and the responses of these caregivers to a Web-based support program. The qualitative data management program QSR N 5 was used to analyze quotes from telephone interviews and computer entries. Stories of how caregivers came together and supported one another emerged from the data collected as part of a larger study that examined the experience of caring. Friedemann's framework of systemic organization guided data analysis and interpretation. Actions demonstrated by the caregivers illustrated the process of crisis resolution through family togetherness in which nurses were included. The findings of this study aided in understanding this process and gave direction for nurses working with such clients.

Caregivers of relatives with dementia: experiences encompassing social support and bereavement

Almberg BE, Grafström M, Winblad B. (2000)

Caregivers who suffer grief after the death of a family member with dementia have received little attention in research. In this Swedish study, 30 caregivers were interviewed less than 6 months after the death of a family member with dementia. The study explored the caregivers' experiences of bereavement and social support in two stages: during the caregiving period and following death, and examined any links between the two stages. Findings showed that a central dynamic in caregiver bereavement seemed to be the support experienced, as well as the possibility of having continued support from family and/or friends. Caregivers who reported more positive appraisals during the caregiver period were likely to feel relieved after the death of a relative. They also tended to be more satisfied with their social support. (AKM).

Caregivers´ experiences of caring for an elderly next of kin in Sweden

Wester, A., Larsson, L., & Pennbrant, S. (2013)

Background: Care of elderly changed in the 1990s in Sweden; treatment sessions were shortened in particular. Consequently, patients have a greater need for care when returning home from hospital. This task may seem overwhelming and caregivers can feel lonely, worn out and resigned in their situation.
Aim: Explore how caregivers experience caring for an elderly next of kin in ordinary living.
Method: Qualitative content analysis of semi-structured interviews with eleven Swedish caregivers.
Findings: Caregivers experienced their situation as something to be endured. In particular, they felt a need for belonging, a need for controlling everyday life, and a need for support.
Conclusion: Home care nurses, health centres and home support workers should be aware of and respect caregivers' needs in terms of support.

Caregiving and cognitive function in older women

Bertrand, R. M., Saczynski, J. S., Mezzacappa, C., Hulse, M., Ensrud, K., & Fredman, L. (2012)

Objectives: Recent findings of better health outcomes in older caregivers than noncaregivers suggest a healthy caregiver hypothesis (HCH) model may be more appropriate than the stress process model for evaluating the health effects of caregiving. In a cross-sectional study, we tested the HCH on two cognitive domains: verbal memory and processing speed. Method: Participants from the Caregiver Study of Osteoporotic Fractures who had a 2-year follow-up interview were categorized as continuous caregivers (n = 194), former caregivers (n = 148), or continuous noncaregivers (n = 574). The Hopkins Verbal Learning Test (HVLT; memory) and Digit Symbol Substitution Task (DSST; processing speed) were administered at the follow-up interview. Results: Continuous caregivers had better memory performance and processing speed than continuous noncaregivers: adjusted mean scores for HVLT were 18.38 versus 15.80 (p < .0001), and for DSST were 35.91 versus 34.38 (p = .09). Discussion: Results support the HCH model for cognitive outcomes in older women caregivers; however, the relationship may be domain specific.

Caregiving and volunteering among older people in Sweden - prevalences and profiles

Jegermalm, M., & Jeppsson Grassman, E. (2009)

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.

Caregiving and Volunteering among Older People in Sweden − Prevalence and Profiles

Jegermalm, M. and E. Jeppsson Grassman (2009)

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens

Carers for older people with co-morbid cognitive impairment in general hospital: Characteristics and psychological well-being

Bradshaw LE, Goldberg SE, Schneider JM, Harwood RH. (2012)

Objective: This analysis sought to describe the characteristics and well-being of carers of older people with mental health problems admitted to a general hospital. Methods: General medical and trauma orthopaedic patients aged 70years or older admitted to an acute general teaching hospital were screened for mental health problems. Those screened positive, together with a carer, were invited to undergo further assessment with a battery of health status measurements. Carers were interviewed to ascertain strain (caregiver strain index (CSI)), psychological distress (12-item General Health Questionnaire) and quality of life (EQ-5D). Results: We recruited 250 patients to the study, of whom 180 were cognitively impaired and had carers willing to take part. After 6months, 57 patients (32%) had died, and we followed up 100 carers. Carers' own health, in terms of mobility, usual activities, and anxiety, was poor in a third of cases. At the time of admission, high carer strain was common (42% with CSI≥7), particularly among co-resident carers (55%). High levels of behavioural and psychiatric symptoms at baseline were associated with more carer strain and distress. At follow-up, carer strain and distress had reduced only slightly, with no difference in outcomes for carers of patients who moved from the community to a care home. Conclusion: Hospital staff should be alert to sources of carer strain and offer carers practical advice and emotional support. Interventions are required to prevent and manage behavioural and psychiatric symptoms at the time of acute physical illness or to alleviate their effects on carers.

Carers in Sweden: The public support they receive, and the support they desire

Jegermalm, M. and G. Sundström (2013)

•This article describes and analyses public support received by unpaid carers in Sweden

•Three types of carers were identified

•Very few carers helping someone living in a different household – the large majority of carers – received or desired support aimed directly at them

•Carers mostly wanted public services for the cared-for person

•Despite legislation in 2009 mandating municipalities to offer support to carers, very few of them know about this law

•There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support services for themselves

•Social policy needs to clarify the aims of the support provided and to take the needs of both carers and cared-for persons into account.

This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about 'typical' carers may have impeded adequate forms of support.

Carers in the welfare state : on informal care and support for carers in Sweden.

Jegermalm, M. (2005)

The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the 'heavy end' of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I).Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II).The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II).The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84.In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government's special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III).Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government's special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV).In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm.In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

Caring capital websites

Anderson, R. E. (2012)

'Caring capital' is that subset of social capital characterized by caregiving, charity and compassion when these actions are given out of a concern for the welfare of others. The relationship between caring and various forms of capital has scarcely been noticed by social scientists, either theoretically or empirically. After reviewing the concepts of caring and capital, 77 websites related to caring capital were analyzed to explore these types of questions: How large, influential and effective is the care-oriented sector of the web? How is it best to categorize the diversity of websites promoting caring capital? What social or interactive and user-generated opportunities are offered by these web sites? What implications for the future do these web organizations have? While we cannot offer any definitive answer to the question of the potential of the Internet for facilitating caring capital, this study's glimpse of the web finds only minimal charitable activity compared to the huge need for greater compassionate caring at both individual and organizational levels.

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Sutcliffe C., Giebel C., Bleijlevens M., Lethin C(4), Stolt M., Saks K., Soto ME., Meyer G., Zabalegui A., Chester H., Challis D., RightTimePlaceCare Consortium. (2017)

OBJECTIVES: To explore associations between carer burden and characteristics of
(1) the informal carer, (2) the person with dementia, and (3) the care support
network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial
relationship and living situation. Variables relating to the person with dementia
included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q),
depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity
Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The
care support network was measured using hours of caregiving (ADLs, instrumental
ADLs [IADLs], supervision), additional informal care support, and service receipt
(home care, day care). Experience of carer burden was recorded using the Zarit
Burden Interview. Logistic regression analysis was used to determine factors
associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with
characteristics of the informal carer (family relationship, specifically wives or
daughters), of the person with dementia (physical dependency in ADLs;
neuropsychiatric symptoms, in particular nighttime behaviors and irritability),
the care support network (hours of caregiving supervision; receipt of other
informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of
distressed behaviors and difficulties in ADLs by the person with dementia may be
addressed by specific nonpharmacological interventions focusing on both elements.
The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

Caring for Elder Parents: A Comparative Evaluation of Family Leave Laws

Yang, Y. T. and G. Gimm (2013)

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

Caring for older people and employment. A review of literature prepared for the Audit Commission

Pickard, L. (2004)

This literature review is concerned with caring for older people and employment, with
a particular focus on the public sector. The review has been commissioned from the
Personal Social Services Research Unit (PSSRU) by the Audit Commission.
At the request of the Audit Commission, the emphasis of the review is on two main
questions. First, there is the question of the extent to which mainstream services and
employers take into account the particular circumstances and needs of carers of older
people in their provision of services or employment practices. Second, there is the
question of the effectiveness or cost-effectiveness of carer-friendly services and
employment practices. The Audit Commission asked the researcher to consider
effectiveness and cost-effectiveness from the perspectives of the different interest
groups involved, that is, the carer, the employer, the person being cared for and the
public interest. The focus of the review is primarily on the role of public sector
employers in offering carer-friendly employment policie

Caring situation and provision of Web based support for young persons who support family members or close friends with mental illness

Ali, L. (2013)

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support.

Caring situation and provision of web-based support for young persons who support family members or close friends with mental illness

Ali, L. (2013)

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support

Akad. avh.

Caught in the middle? Occupancy in multiple roles and help to parents in a national probability sample of Canadian adults. Research Paper No. 4

Rosenthal C, Martin-Matthews A, Matthews SH (1996)

This article considers, for a Canadian national probability sample of middle-aged women and
men, the question of how typical is the experience of being "caught in the middle" between being
the adult child of elderly parents and other roles. Three roles are examined: adult child, employed
worker, and parent (and a refinement of the parent role, being a parent of a co-resident child).
Occupancy in multiple roles is examined, followed by an investigation of the extent to which adults
in various role combinations actually assist older parents and whether those who provide frequent
help are also those "sandwiched" by competing commitments. The majority of middle-aged children
do not provide frequent help to parents. Notably, the highest proportion of daughters who assist
elderly parents are those in their fifties whose children are no longer co-resident. For both sons and
daughters, being "caught in the middle" is far from a typical experience in this cross-sectional
analysis.

Child physical abuse and concurrence of other types of child abuse in Sweden – Associations with health and risk behaviors

Annerbäck, E.M., Sahlqvist, L., Svedin, C.G., Wingren, G., & Gustafsson, P.A. (2012)

Abstract
OBJECTIVE:
To examine the associations between child physical abuse executed by a parent or caretaker and self-rated health problems/risk-taking behaviors among teenagers. Further to evaluate concurrence of other types of abuse and how these alone and in addition to child physical abuse were associated with bad health status and risk-taking behaviors.
METHODS:
A population-based survey was carried out in 2008 among all the pupils in 2 different grades (15 respectively 17 years old) in Södermanland County, Sweden (n=7,262). The response rate was 81.8%. The pupils were asked among other things about their exposure to child physical abuse, exposure to parental intimate violence, bullying, and exposure to being forced to engage in sexual acts. Adjusted analyses were conducted to estimate associations between exposure and ill-health/risk-taking behaviors.
RESULTS:
Child physical abuse was associated with poor health and risk-taking behaviors with adjusted odds ratios (OR) ranging from 1.6 to 6.2. The associations were stronger when the pupils reported repeated abuse with OR ranging from 2.0 to 13.2. Also experiencing parental intimate partner violence, bullying and being forced to engage in sexual acts was associated with poor health and risk-taking behaviors with the same graded relationship to repeated abuse. Finally there was a cumulative effect of multiple abuse in the form of being exposed to child physical abuse plus other types of abuse and the associations increased with the number of concurrent abuse.
CONCLUSIONS:
This study provides strong indications that child abuse is a serious public health problem based on the clear links seen between abuse and poor health and behavioral problems. Consistent with other studies showing a graded relationship between experiences of abuse and poor health/risk-taking behaviors our study shows poorer outcomes for repeated and multiple abuse. Thus, our study calls for improvement of methods of comprehensive assessments, interventions and treatment in all settings where professionals meet young people.

Child politics. Dimensions and perspectives

Therborn, G. (1996)

The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.

Childhood bereavement: psychopathology in the 2 years postparental death

Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A. & Weller, E.B. (2006)

Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.

Childhood exposure to violence and lifelong health: Clinical intervention science and stress-biology research join forces

Moffitt, T. E., & Klaus-Grawe Think, Tank. (2013)

Many young people who are mistreated by an adult, victimized by bullies, criminally assaulted, or who witness domestic violence react to this violence exposure by developing behavioral, emotional, or learning problems. What is less well known is that adverse experiences like violence exposure can lead to hidden physical alterations inside a child's body, alterations that may have adverse effects on life-long health. We discuss why this is important for the field of developmental psychopathology and for society, and we recommend that stress-biology research and intervention science join forces to tackle the problem. We examine the evidence base in relation to stress-sensitive measures for the body (inflammatory reactions, telomere erosion, epigenetic methylation, and gene expression) and brain (mental disorders, neuroimaging, and neuropsychological testing). We also review promising interventions for families, couples, and children that have been designed to reduce the effects of childhood violence exposure. We invite intervention scientists and stress-biology researchers to collaborate in adding stress-biology measures to randomized clinical trials of interventions intended to reduce effects of violence exposure and other traumas on young people.

Childhood socioeconomic status, school failure, and drug abuse - a Swedish national cohort study

Gauffin, K., Vinnerljung, B., Fridell, M., Hesse, M., Hjern, A. (2013)

We examined prevalence of parental deaths among former out-of-home care youths at age 18 and 25, and odds of parental loss compared with peers from similar socio-economic childhood backgrounds. The study utilized Swedish national register data for 12 entire birth cohorts (1972–1983), 35 550 former out-of-home care youths and 1 138 726 cohort peers without out-of-home care experiences. Logistic regression models were used to compute odds ratios for parental loss through death.

It was especially common among former residents of long-term out-of-home care to be motherless (11%), fatherless (11–13%) or orphaned (3–4%) at age 18, compared with non-foster care peers (1%, 3% and 0.03%). Twenty-six per cent had lost at least one parent (4% among non-foster care peers). At age 25, the figures had increased considerably; 36% had lost at least one parent, compared with 7% in the majority population. Adjusted odds ratios for parental loss among long-term care youth were strikingly high, particularly for having a deceased mother. In short-term and intermediate care, most youths with deceased parents had suffered parental loss before entering foster care. For youth from long-term care, parental death after start of placement was most common.

Childhood traumatic grief: concepts and controversies

Cohen, J.A., Mannarino, A.P., Greenberg, T., Padlo, S., & Shipley, C. (2002)

Childhood traumatic grief refers to a condition in which characteristic trauma-related symptoms interfere with children's ability to adequately mourn the loss of a loved one. Current concepts of this condition suggest that it overlaps with but is distinct from uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder. This article describes the core features of childhood traumatic grief; differentiates it from these related conditions; and reviews the current research status of suggested diagnostic criteria, assessment instruments, and treatments for this condition. Implications for future clinical practice, research, and policy are also addressed.

Childhood traumatic grief: concepts and controversies

Cohen, J.A., Mannarino, A.P., Greenberg, T., Padlo, S. & Shipley, C. (2002)

Discussing childhood traumatic grief, a condition likened to uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder (PTSD), this article addresses the core features of this condition and its potential treatments. After asserting that childhood traumatic grief is not consistently differentiated from adult complicated grief, normal childhood bereavement, or PTSD, the authors distinguish uncomplicated bereavement as deep mental anguish or sorrow over a loss. After defining adult complicated grief as normal bereavement complicated by separation over the loss of a relationship, this article discusses childhood PTSD as a mental condition following an experienced or witnessed traumatic event, in order to differentiate these conditions from childhood traumatic grief. Addressing childhood traumatic grief itself, the authors distinguish this condition from those aforementioned by defining it as the encroachment of traumatic symptoms on a child's ability to grieve. Citing differences among childhood traumatic grief and uncomplicated bereavement, adult complicated grief, and PTSD, the authors argue that in childhood traumatic grief a child is so traumatized that he or she is unable to complete the tasks of uncomplicated bereavement and is plagued with horrors and fears associated with the idea of death. The authors suggest that mediating, assessing, and treating childhood traumatic grief is best accomplished by early assessment, careful appraisal of a child's family circumstances, and prompt intervention. The authors conclude that clinicians need to be better trained at recognizing the distinctions between childhood traumatic grief and other forms of grief in order to best serve their child clients

Children affected by parental illness or parental substance abuse: young carers, well-being and quality of life

Kallander, Ellen Katrine (2019)

Summary
In Norway and the Nordic countries more generally, the awareness of children affected by parental
illness or substance abuse has increased during the last 10 years. There has also been a general shift
from inpatient to outpatient care in public hospitals, and from public hospitals to primary health
care. This shift has increased the number of parents who live at home with more severe illness while
they are in active treatment. They need more informal and formal external care in their own homes.
Until recently, care for the ill, disabled, or elderly within the family has been invisible and barely
mentioned in public documents, statistics, or research reports. This applies even more for children's
caregiving activities. In 2010, the Research Council of Norway called for research of this question,
pointing out that 'little research has been conducted in this field, where children themselves serve as
informants, and more insight is needed about which interventions and measures that provide
effective help'. The main aims of the papers discussed in this thesis have been to explore:
• The extent and nature of the children's caring activities
• The positive and negative outcomes of the children's caring activities
• Factors associated with the children's quality of life (QoL)

Children and Their Life Experiences

Faureholm, J. (2010)

Keywords:
children and their life experiences;
experiences of children of parents with intellectual disabilities;
adult children, raised by parents with intellectual disabilities;
children of mothers with intellectual disabilities;
children being affected - with mothers diagnosed as having intellectual disability;
everyday life within the family, school and friends;
support from public authorities and life - as adolescents and young adults;
alternating between being children and adults;
children of parents with intellectual disabilities - risk of facing difficulties
Summary
This chapter contains sections titled:

Children and young people’s experiences of UK childhood bereavement services

Rolls, L., & Payne, S. (2007)

This paper describes the experiences of bereaved children and parents and their use of UK childhood bereavement services. It forms part of a larger qualitative study and was undertaken in the context of questions about the impact of bereavement on children and their status and participation in research, raising important methodological and ethical issues. Interviews were undertaken with 24 bereaved children and 16 parents who had used one of eight organizational case study services. Participant observation of six group interventions was undertaken. The study identified a multiplicity of bereavement experiences both within and between families. Children identified difficulties in managing and expressing their feelings, isolation, problems at school, and fear for their surviving parent. Parents found it difficult to maintain their parenting role as they struggled with their own bereavement and the disruption in their circumstances. Children and parents who participated in interventions were able to describe the significant ways in which they found it helpful, including the benefit of speaking to someone who understood their experience. Although some experienced difficulties in attending group interventions, bereaved parents welcomed the support to help them provide appropriate care for their bereaved child. By providing an "ecological niche" for bereaved children, UK childhood bereavement services contribute to meeting outcomes identified in recent policy initiatives.

Children as ‘Being and Becomings’: Children, Childhood and Temporality

Uprichard, E. (2008)

Notions of 'being' and 'becoming' are intrinsic to childhood research. Whilst the 'being' child is seen as a social actor actively constructing 'childhood', the 'becoming' child is seen as an 'adult in the making', lacking competencies of the 'adult' that he or she will 'become'. However, I argue that both approaches are in themselves problematic. Instead, theorising children as 'being and becomings' not only addresses the temporality of childhood that children themselves voice, but presents a conceptually realistic construction suitable to both childhood researchers and practitioners.

Children caring for parents with mental illness: perspectives of young carers, parents and professionals

Aldridge, Jo & Becker, Saul (2003)

Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:·[vbTab]is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;·[vbTab]provides the perspectives of children, parents and key professionals in contact with these families;·[vbTab]reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; ·[vbTab]provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;·[vbTab]makes concrete recommendations and suggestions for improving policy and professional practice;·[vbTab]contributes to the growing evidence base on parental mental illness and outcomes for children and families.

Children exposed to domestic violence and child abuse: Terminology and taxonomy

Holden, G. W. (2003)

Three definitional issues regarding children exposed to domestic violence are examined. First, the multiple ways in which a child can be exposed to violence is discussed. A taxonomy of 10 types of exposure is proposed. Nine key characteristics of domestic violence, as they relate to children and children's exposure, are then outlined. The third issue addressed concerns why children who are exposed to domestic violence can be considered victims of child maltreatment. These children, by nature of their experience in the home, are psychologically maltreated and are also at high risk for physical abuse and some risk for sexual abuse. Empirical questions concerning these definitions and taxonomies and their interrelations are discussed.

Children in precarious environments and life situations

Brodin, J. (2011)

This article is based on a project studying children growing up in precarious environments and life situations in Sweden. Data have emerged from the explorative study "Children in precarious life situations". Regardless of Sweden's long tradition in the social welfare field many children have difficulties and do not feel mentally well. The aim of this article is to increase the knowledge of children in precarious environments and life sitations and to explore the existence of exposed arenas where many children spend their everyday lives.

Children in residential and foster care – a Swedish example

Andersson, Gunvor (1999)

The article reports on a longitudinal study of children placed in a children's home in Malmö, Sweden, at the beginning of the 1980s. The 26 children, placed when younger than four years of age and staying more than four weeks in the children's home, were followed up three and nine months after leaving the children's home as well as five, ten and fifteen years later. Interviewing the parties concerned was the predominant research method. Twenty of the 26 children in the research group also had later experiences of out-of-home care, including foster care, in addition to the stay at the children's home. This article is about them, 15–20 years old when interviewed in the latest follow-up study. Three aspects of "outcome" are focused on: the degree of stability in the children's living conditions; relationships to parents and foster parents; well-being and emotional and behavior problems. Bearing in mind that the concept of well-being is relative, a cautious conclusion is that a third of the children in the study experienced well-being, a third felt "o.k.," and a third had serious problems, including criminal activities and drugs. The somewhat unclear connection between well-being, stability in living conditions, and sense of family belonging is discussed.

Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants.

Israelsson-Skogsberg, Åsa (2019)

Dissertation

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants. Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents. Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one's parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia. Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs. Ort, förlag, år, upplaga, sidor Borås: Högskolan i Borås, 2019.SerieSkrifter från Högskolan i Borås, ISSN 0280-381X ; 101 Nyckelord [en] Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life

Children of affectively ill parents: a review of the past 10 years

Beardslee W, Versage E, Gladstone T. (1998)

OBJECTIVE: To review the literature investigating the effects of parental affective illness on children over the past decade. METHOD: A computerized search of articles published over the past 10 years was completed. Articles were reviewed and relevant studies are presented. RESULTS: Over the course of the past 10 years a number of longitudinal studies have confirmed that children of affectively ill parents are at a greater risk for psychiatric disorders than children from homes with non-ill parents. Life table estimates indicate that by the age of 20 a child with an affectively ill parent has a 40% chance of experiencing an episode of major depression. Children from homes with affectively ill parents are more likely to exhibit general difficulties in functioning, increased guilt, and interpersonal difficulties as well as problems with attachment. Marital difficulties, parenting problems, and chronicity and severity of parental affective illness have been associated with the increased rates of disorder observed in these children. CONCLUSION: The presence of depression in parents should alert clinicians to the fact that their children also may be depressed and therefore in need of services

De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Wallengren Gustafsson, C. (2009)

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

Death and suicide among former child and adolescent psychiatric patients

Engqvist, U. and P. A. Rydelius (2006)

BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.

Deciding upon Transition to Residential Care for Persons Living with Dementia: why Do Iranian Family Caregivers Living in Sweden Cease Caregiving at Home?

Kiwi M., Hydén LC., Antelius E (2018)

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.

Defiant children : a clinician’s manual for parent training

Barkley, R. A. (1987)

This manual is designed to serve several purposes. First, it sets forth detailed instructions on conducting a highly effective, empirically validated program for the clinical training of parents in the management of behavior problem children. Second, it provides a series of parent handouts to be used during the course of the program. These handouts include various rating scales and forms to be completed by the parent, as well as instructions to the parent for use with each step of the program. The handouts are designed to be easy to read and brief. They are not meant to be used without training by a skilled child/family therapist. Finally, the manual outlines methods of assessment that the trainer may wish to employ in the initial evaluation of the child and family or in the periodic evaluation of treatment effects throughout training. The program was designed for children between 2 and 11 years of age. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Delaktighet i tvärinstitutionella flerpartssamtal

Bülow, P. (2012)

Delaktighet och kommunikation är centrala ideal inom vård, omsorg och socialt arbete. Men vad innebär delaktighet i praktiken och hur kan teorier om delaktighet och professionella samtal förstås i olika praktiska sammanhang? Med utgångspunkt i svensk och internationell forskning ger den här boken en djupare inblick i villkor och möjligheter för professionella samtal. I ett tvärvetenskapligt perspektiv på kommunikation presenteras exempel från nya studier på vad delaktighet innebär inom en rad miljöer: nödsamtal, akut- och specialistsjukvård, äldreomsorg, biståndsbedömning, arbetsrelaterad rehabilitering och vårdutbildning.

Boken passar väl för utbildningar till sjuksköterska, socionom, arbetsterapeut, sjukgymnast och läkare. I boken beskrivs även olika metoder för datainsamling och analys av data. Det innebär att boken med fördel kan knytas till metodundervisning och examensarbete på avancerad nivå.

Redaktörerna, Pia Bülow, Daniel Persson Thunqvist & Inger Sandén, och de övriga författarna är knutna till forskarnätverket Kommunikation i vård och omsorg (KIVOS).

Pia Bülow är lektor i socialt arbete vid Avdelningen för beteendevetenskap och socialt arbete på Hälsohögskolan i Jönköping.

Inger Sandén är lektor i vårdvetenskap vid Avdelningen för specialistutbildning vid Högskolan Väst och vid Avdelningen för omvårdnad vid Hälsouniversitetet, Linköpings universitet.

Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.

Delaktighetsmodellen – en väg mot empowerment

Gullacksen, Ann-Christine (2010)

Rapporten beskriver ett utvecklingsarbete inom FoU Skåne som haft som mål att finna former för brukare att framföra synpunkter, önskemål och krav på den verksamhet som de tar del av. Utgångspunkten har varit Empowerment - ett begrepp som här huvudsakligen använts för att belysa brukarnas möjlighet att bestämma över sina liv och erövra egenmakt - ett exempel på en botten-uppstrategi för inflytande.

Metoden som benämnts Delaktighetsmodellen har inspirerats av andra former för brukarinflytande som BIKVA och Lyttemöten från Danmark och BUKU från Sverige.

Rapportens första del är en beskrivning av processen och den implementering som skett i Skåne under tre år. Den andra delen kan ses som en fördjupning av motiven och en beskrivning av de bakomliggande teoretiska begreppen.

Deliberate self-harm behaviour in Swedish adolescent girls reports from public assessment and treatment agencies

Holmqvist R, Carlberg M, Hellgren L. (2008)

Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

Holm M, Carlander I, Fürst CJ, Wengström Y, Årestedt K, Öhlen J, Henriksson A (2015)

BACKGROUND: Family caregivers in palliative care have a need for knowledge and
support from health professionals, resulting in the need for educational and
supportive interventions. However, research has mainly focused on the experiences
of family caregivers taking part in interventions. To gain an increased
understanding of complex interventions, it is necessary to integrate the
perspectives of health professionals and family caregivers. Hence, the aim of
this study is to explore the perspectives of health professionals and family
caregivers of delivering and participating in a psycho-educational intervention
in palliative home care.
METHODS: A psycho-educational intervention was designed for family caregivers
based on a theoretical framework describing family caregiver's need for knowing,
being and doing. The intervention was delivered over three sessions, each of
which included a presentation by healthcare professionals from an intervention
manual. An interpretive descriptive design was chosen and data were collected
through focus group discussions with health professionals and individual
interviews with family caregivers. Data were analysed using framework analysis.
RESULTS: From the perspectives of both health professionals and family
caregivers, the delivering and participating in the intervention was a positive
experience. Although the content was not always adjusted to the family
caregivers' individual situation, it was perceived as valuable. Consistently, the
intervention was regarded as something that could make family caregivers better
prepared for caregiving. Health professionals found that the work with the
intervention demanded time and engagement from them and that the manual needed to
be adjusted to suit group characteristics, but the experience of delivering the
intervention was still something that gave them satisfaction and contributed to
them finding insights into their work.
CONCLUSIONS: The theoretical framework used in this study seems appropriate to
use for the design of interventions to support family caregivers. In the
perspectives of health professionals and family caregivers, the
psycho-educational intervention had important benefits and there was congruence
between the two groups in that it provided reward and support. In order for
health professionals to carry out psycho-educational interventions, they may be
in need of support and supervision as well as securing appropriate time and
resources in their everyday work.

Delivery styles and formats for different stroke information topics: patient and carer preferences

Eames S, Hoffmann T, Worrall L, Read S. (2011)

OBJECTIVE:
To identify the preferences of patients with stroke and their carers for format and delivery style, of different categories of stroke information, and whether these preferences changed over time.
METHODS:
A semi-structured questionnaire, designed to explore preferences for four topic categories was administered to 34 acute stroke unit patients and 18 carers prior to discharge and again, 3 months after discharge to 27 of these patients and 16 of these carers.
RESULTS:
Overall format preferences were a combination of face-to-face, written and telephone for both patients and carers prior to discharge. This combination continued for carers following discharge, while patients preferred face-to-face, written and alternative formats of online and audiovisual at this time. Patients and carers most frequently preferred delivery styles appeared to be a mix of active and passive delivery styles, across all topics. Access to a telephone hotline was a popular delivery style.
CONCLUSION:
Patient and carer preferences varied, supporting the need to offer a variety of formats and delivery styles at each point of contact.
PRACTICE IMPLICATIONS:
By focusing on specific formats and delivery styles for different topics, health professionals may maximise the access to, and relevance of, stroke information for patients and their carers.

Demens - Anhörig På Liv och Död

Öhman Camilla (2020)

Camilla Öhmans gripande berättelse om sin mamma som insjuknade och avled i en avancerad form av demenssjukdom som heter Frontallobsdemens. Boken är ärligt skriven om egna livserfarenheter och beskriver dem olika händelseförlopp och stadier i sjukdomen, bemötandet inom vården samt ger anhöriga konkreta råd på vägen. Som läsare kommer du även få ta del av guldkornen i en familjs historia om en stark kärlek, hyllningen till livet, föräldraskap och om envisheten att fortsätta kämpa fastän livet visar oss sin hårdaste sida.
Denna ljudbok är skapad för att hjälpa andra anhöriga som lever nära en person som är sjuk i en demenssjukdom men även för dem som önskar få en bättre förståelse om sjukdomen som sådan. Det är viktigt att belysa hur dessa personer med denna form av sjukdom och dess anhöriga bemöts av samhället idag. Det är dags att våga börja prata öppet om dessa sjukdomar för att påverka situationen med att se till att de demenssjuka ska få en bra vård, men även att dem anhöriga ska erhålla rätt stöd då livet för dem dagligen består av olika utmaningar och andra påfrestningar som riskerar dem själva att bli sjuka.

Dementia across cultural borders: Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home

Kiwi, Mahin (2018)

Doktorsavhandling

Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.

Dementia caregiver intervention research: in search of clinical significance

Schulz R, O'Brien A, Czaja S, Ory M, Norris R, Martire LM, et al. (2002)

Purpose: We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes. Design and Methods: MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer's disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful. Results: Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers. Implications: Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research.

A systematic review of internet-based self-management interventions for youth with health conditions

Stinson, J., Wilson, R., Gill, N., Yamada, J., & Holt, J. (2009)

Abstract
OBJECTIVE:
Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions.
METHODS:
Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis.
RESULTS:
While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization.
CONCLUSIONS:
There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.

Anhöriga som ger insatser till närstående med stroke. En kunskapsöversikt som beskriver olika stödprogram för anhöriga. 2016:2

Månsson Lexell Eva (2016)

På senare år har olika typer av stödprogram utvecklats, riktade till anhöriga som vårdar, hjälper eller ger stöd till personer med stroke. Det finns dock ingen konsensus kring vilket innehåll stödprogrammen bör ha, om en viss typ av stödprogram är mer effektiva och bör rekommenderas före andra eller om det saknas en viss typ av stödprogram. Syftet med denna kunskapsöversikt var därför att identifiera och presentera relevant litteratur som beskriver stödprogram riktade till anhöriga, som på olika sätt ger stödinsatser till vuxna personer med stroke, samt stödprogrammens betydelse och eventuell effekt för anhöriga. Syftet var också att ge rekommendationer för insatser inom vård och omsorg och för framtida forskning.

Anhöriga som ger omsorg till närstående : omfattning och konsekvenser

Socialstyrelsen (2012)

Omsorg människor emellan, det vill säga vård, hjälp eller stöd som ges till närstående på grund av sjukdom, funktionsnedsättning eller hög ålder, utgör en självklar del av livet för de allra flesta. Att ge omsorg kan handla om allt från att hjälpa med praktiska sysslor, ekonomi, kontakt med vård och omsorg, personlig omvårdnad, tillsyn, stimulans och umgänge. Den här rapporten presenterar resultaten av en befolkningsstudie med fokus uteslutande på omsorgsgivarens perspektiv som genomförts av Socialstyrelsen på uppdrag av regeringen. Studien genomfördes som en postenkät till ett slumpmässigt urval om cirka 15 000 individer i befolkningen, 18 år och äldre, under början av 2012. Studien belyser hur många som ger omsorg och till vem. Den beskriver också olika former av omsorg som ges och vad detta får för konsekvenser för omsorgsgivarens hälsa, sociala relationer, ekonomi och möjligheter att arbeta. Slutligen beskriver den erfarenheter av och förväntningarna på sjukvårdens och socialtjänstens stöd till omsorgsgivare.

Anhöriga som ger omsorg till närstående. Fördjupad studie av omfattning och konsekvenser

Socialstyrelsen (2014)

De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.

Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga.
I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det.
Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten.
Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete.
För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare.
Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.

Anhöriga som kombinerar förvärvsarbete och anhörigomsorg

Sand, Ann-Britt (2010)

Internationella forskningsresultat visar att ett omfattande omsorgsansvar har en negativ påverkan på arbetslivet. I denna kunskapsöversikt ges förslag på stöd och hjälp som efterfrågas av anhöriga som kombinerar anhörigomsorg och förvärvsarbete.

Anhöriga som vårdar eller stödjer närstående äldre personer : underlag till en nationell strategi

Socialstyrelsen (2020)

Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov

Anhöriga till personer med psykisk sjukdom eller funktionsnedsättning - en resurs i behov av stöd. Fokus på anhöriga till äldre nr 17

Ewertzon, M. (2010)

Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänstlagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon – doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna – beskriver här de anhörigas situation och resonerar
kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen

Anhöriga till vuxna personer med psykisk ohälsa: En kunskapsöversikt om betydelsen av stöd. Kunskapsöversikt 2015:1

Ewertzon, M. (2015)

Att vara anhörig till en person med psykisk ohälsa kan vara förenat med omfattande svå-
righeter, men också med empati och kärlek till att vilja hjälpa och stödja sin närstående.
Kontakt och stöd från personal inom vård och omsorg och andra anhöriga med liknande
erfarenheter kan vara betydelsefullt för att hantera situationen. Trots goda intentioner i
svenska styrdokument framkommer i flera utredningar och forskning, att anhörigas behov
av kontakt och anpassat stöd från vård och omsorg inte alla gånger tillgodoses i tillräcklig
omfattning.
Syftet med föreliggande kunskapsöversikt är därför att presentera exempel på stödjande
insatser för vuxna anhöriga (18 år eller äldre), till vuxna personer (18 år eller äldre) med
psykisk ohälsa och den dokumenterade betydelse och/eller effekt som stödet kan ha för
anhöriga. Det skall tilläggas att syftet inte är att jämföra eller dra slutsatser om vilka
stödinsatser som är mest betydelsefulla eller effektiva.
Litteratursökning av svensk och internationell forskning och utvecklingsarbeten genomfördes
i olika databaser. Sökningen omfattade aspekter som: psykisk ohälsa, anhöriga,
stöd och betydelse samt effekt. Efter en första granskning av 854 studier bedömdes slutligen
54 vara relevanta för kunskapsöversiktens syfte och frågeställningar. Av dessa har 18
studier genomförts i Sverige. Studierna är genomförda med såväl kvantitativa som kvalitativa
metoder.
Vid tematisk analys av studierna framkom två huvudområden. Det ena omfattade stöd
från personal inom hälso- och sjukvård och socialtjänst. Det delades in i sex delområden;
psykopedagogiska interventioner, telefonrådgivning i grupp, webbaserat stöd, samtal och
bemötande, delaktighet i vård och omsorg, samt vård och omsorg till den närstående med
psykisk ohälsa. Det andra huvudområdet omfattade stöd från personer med egen erfarenhet
som anhörig till person med psykisk ohälsa, omfattande tre delområden; ömsesidiga
stödgrupper, individuella samtalsträffar och stöd via telefon.
Insatserna hade genomförts i grupp eller individuellt likväl som direkt eller indirekt stöd,
där indirekt stöd främst riktades till den närstående med psykisk ohälsa, vilket i sin tur
kan underlätta situationen för anhöriga. Innehållet i insatserna hade stora variationer.
Några återkommande aspekter var information, utbildning, rådgivning, problemlösning
och stresshantering, delaktighet i vård och omsorg, bemötande från personal och erfarenhetsutbyte
med andra anhöriga. Resultatet indikerar att stödinsatserna på många olika
sätt kan vara betydelsefulla för anhöriga själva, såväl fysiskt, psykiskt som socialt, men
också av betydelse för att hantera situationen och på så sätt stödja sin närstående med
psykisk ohälsa. Psykopedagogiska interventioner och ömsesidiga stödgrupper som leds av
andra anhöriga var de insatser som omfattade flest studier, såväl systematiska forsknings-
översikter som enskilda studier. Resultaten av dessa indikerade minskad belastning, ökad
kunskap om sjukdomen och behandling, samt ökad möjlighet att hantera situationen.
8
Några studier indikerade också att inställningen till den närstående med psykisk ohälsa
hade förändrats, samt att socialt stöd i grupp var betydelsefullt för att minska social isolering
och känsla av ensamhet. Utvärderingarna hade i nästan alla studier genomförts inom
ett år efter insatsen avslutats, vilket medför betydande begränsningar i vilken långtidseffekt
insatserna haft. Insatserna genomfördes av olika organisationer och personer, som
landsting, kommun, intresseorganisationer, privat och projekt under avgränsad tid. I
några studier genomfördes de i samarbete mellan flera organisationer.
Resultatet i kunskapsöversikten är inte en total kartläggning av forskning som genomförts
om stöd för anhöriga till personer med psykisk ohälsa. Det är exempel på olika former av
stöd och där det finns utvärdering som beskriver dess betydelse. Det finns säkerligen fler
studier som beskriver detta område som inte inkluderats i resultatet, både i Sverige och
internationellt. Allt som framkommer i resultatet är inte överförbart eller generaliserbart
i andra sammanhang än där det genomförts. Detta på grund av metodologiska begränsningar
i vissa studier eller att det finns geografiska, kulturella eller andra aspekter som
begränsar resultatens överförbarhet.
Utifrån resultatet av kunskapsöversikten och från anhörigas erfarenheter i andra sammanhang,
kan följande områden ses som betydelsefulla att beakta vid förändring och
utveckling av stöd till anhöriga:
➢ Information på samhällsnivå; information om var vård för personer med psykisk
ohälsa och stöd för anhöriga finns att tillgå.
➢ Strukturerade former av anhörigstöd; olika former av
psykopedagogiska insatser, ömsesidiga stödgrupper, webbaserat
stöd och individuellt samtalsstöd.
➢ Bemötande från personal inom vård och omsorg.
➢ Anhörigas delaktighet i vård och omsorg.
➢ Beaktande av sekretessen ur anhörigas och deras närståendes
perspektiv såväl som ur vård- och omsorgspersonals perspektiv.
➢ Vård och omsorg av den närstående som också beaktar anhörigas behov av trygghet.
➢ Att utveckling sker i nära samarbete mellan vård och omsorg, samt intresseorganisationer
så att allas kompetens och erfarenhet tas tillvara.
Förhoppningen är att dessa exempel på stöd som framkommit i kunskapsöversikten kan
bidra till kunskap och inspiration för utveckling och förändring av stödjande insatser för
vuxna anhöriga som har en vuxen närstående med psykisk ohälsa. Det är också betydelsefullt
att det ges förutsättningar till fortsatt dokumentation och utvärdering av insatser
som andra kan ta del av.

Anhöriga till äldre personer med psykisk ohälsa. Kunskapsöversikt 2016:1

Ericsson Iréne, Persson Marie, Hanson Elizabeth (2016)

I denna kunskapsöversikt är vuxna anhöriga till en äldre person med psykisk ohälsa fokus. Eftersom psykisk ohälsa hos äldre skiljer sig från psykisk ohälsa hos yngre vuxna behöver situationen för dessa anhöriga beskrivas och deras specifika behov och stöd lyftas fram. Kunskapsöversikten inleds med en bakgrund till psykisk ohälsa hos äldre. Därefter följer en kort beskrivning av vård och omsorg för äldre med psykisk ohälsa, vilket är ett komplext område med många olika vårdaktörer. Slutligen presenteras forskning om anhöriga till vuxna med psykisk ohälsa och anhöriga till äldre.

Anhöriga äldre angår alla!, Kunskapsöversikt 2014:3

Jegermalm, M., Malmberg, B., & Sundström, G. (2014)

Anhörigomsorg är del av en komplex väv med olika nivåer, individuella, familjemässiga
och övergripande samhälleliga, där åtminstone de senare har begränsade
resurser. Denna rapport presenterar och diskuterar kunskapsläget inom
svensk och internationell forskning om anhöriga till äldre. Vi sätter den svenska
anhörigomsorgen i ett större sammanhang genom resonemang om demografiska
förutsättningar, historiska tillbakablickar och internationella utblickar. Nutid
belyses med aktuella undersökningar och vi tror att framtiden kan klaras tack
vare den allt större överlappning vi redan ser mellan många olika former av
hjälp, service, omsorg och vård. Vi ställer frågan om dessa mönster kanske förbises
i de ofta dystra, rent demografisk-ekonomiska framskrivningarna.
Rapporten redovisar många svenska undersökningar av anhörigomsorg, både
i befolkningen i stort och bland äldre. Det förefaller klart att det skett en faktisk
ökning av anhörigomsorgens omfattning från 1990-talet och början av 2000-
talet, något som flera studier visar. Resultat från en europeisk undersökning med
gemensamma frågor och svarsalternativ tyder på att anhörigomsorg är vanligare
i Nordeuropa än i Sydeuropa vilket nog strider mot gängse föreställningar.
Kanske är det i Norden vanligare att vara hjälpgivare men inte med lika omfattande
engagemang eller lika länge och man bor sällan tillsammans. Då fördelas
nog omsorgen på fler händer. I Sverige angav mindre än 1 procent att de gav
omsorg på heltid, i Spanien 5 procent. Sammantaget har, i Sverige liksom i
övriga Europa, mer än 4 av 10 i befolkningen en aktuell eller tidigare personlig
erfarenhet av att ge omsorg, och på befolkningsnivå är anhörigomsorgen klart
större än den offentliga. De flesta svenska studier visar att det är ungefär lika
vanligt bland kvinnor och män att vara givare av anhörigomsorg. Kvinnor ger
dock oftare personlig omvårdnad och de ger fler timmar omsorg än männen.
De flesta omsorgsgivare ger ganska få hjälptimmar, men timinsatserna ökar
med stigande ålder och är högst bland de äldsta. I genomsnitt ger omkring 30
procent av omsorgsgivarna daglig hjälp, men den andelen stiger till nästan 40
procent för anhörigvårdare i 65–80 årsåldern och till 80 procent för dem som är
ännu äldre. Äldre utgör således 30 procent av alla som ger omsorg, oftast till
andra äldre, men utför ungefär 4 av 10 omsorgstimmar. Äldre personer är inte
bara mottagare av omsorg utan minst lika ofta också givare.
De flesta givare av anhörigomsorg ger "lättare" former av insatser (skjutsning,
passning, tillsyn etc.), insatser som många gånger säkerligen är viktiga och kan
vara avgörande för mottagaren. Det är viktigt att se det stora spektret av anhörigomsorg
och att det också finns grupper av anhöriga (ofta äldre personer) som
gör omfattande insatser som kan påverka såväl egen hälsa som arbetsliv. Vid
små hjälpbehov – fallet för de flesta – får man lite hjälp främst av anhöriga, vid
större behov mer hjälp och då av både anhöriga och av kommunen. Delat ansvar
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är vanligt och även vad omsorgsgivare och mottagare önskar. Få önskar bära
ansvaret ensamma och få önskar att ansvaret helt ligger på det offentliga.
Historiskt utgör barn och andra anhöriga en viss trygghet på ålderdomen,
något som inte tillhör det förflutna, utan snarare kommer att få större betydelse
framöver. Anledningen är demografisk: allt fler har nära anhöriga i form av en
egen familj. Familjens relativa betydelse har ökat, inte minskat som man ibland
föreställer sig. Detta accentueras av att den offentliga omsorgen visserligen är väl
utbyggd i Sverige, men tycks ha nått gränsen för vad den kan uträtta, praktiskt
och finansiellt. Anhörigomsorgen har även socialpolitiska aspekter. Den som är
eller varit anhörigvårdare vill helst inte själv vara mottagare av omfattande anhörigvård,
utan hellre få huvuddelen av omsorgen från det offentliga. Man kan
nog förutse ännu strängare ransonering av offentliga tjänster i framtiden, där
anhöriga och marknadsbaserade tjänster är alternativen, möjligen tillsammans
med växande insatser från ideella organisationer.

Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet

Wadefjord, Anna, Gustavsson, Marita, Stenmarck, Mats & Kjellin, Lars (2009)

Tidigare forskning har visat att psykiska sjukdomar har stor inverkan inte bara på de personer som drabbas utan även på deras anhöriga, och att många anhöriga inte upplever sig vara tillräckligt delaktiga i den psykiatriska vården. Få skillnader i dessa avseenden har funnits mellan anhöriga till frivilligt vårdade och anhöriga till tvångsvårdade patienter. Denna rapport redovisar några resultat från en anhörigstudie som genomförts under perioden augusti 2004 till februari 2006 i Örebro län som en del i en större EU-finansierad europeisk studie av psykiatrisk tvångsvård, det så kallade EUNOMIA-projektet.

Syftet med Örebro-delen av EUNOMIA-projektets anhörigstudie var att undersöka hur anhöriga till frivilligt vårdade och tvångsvårdade patienter uppfattar orsak till intagning, förekomst av tvång vid intagning, bemötande av och hjälp till patienten under vården, bemö-tande av anhöriga, anhörigas delaktighet i vården samt patientens prognos.

Fyrtiofyra anhöriga till personer som intagits i psykiatrisk slutenvård i Örebro län, och som inkluderats i EUNOMIA-projektets patientstudie, tillfrågades om deltagande. Av dessa tackade 36 personer (82 %) ja till deltagande i studien, varav 25 kvinnor och 11 män. De som intervjuades var mammor, pappor, vuxna barn, syskon, make, maka eller partner, andra släktingar och närstående av annat slag. Tjugotvå av de intervjuade var närstående till frivilligt vårdade och 14 anhöriga till tvångsvårdade patienter.

Anhörigintervjun genomfördes inom fyra veckor från det att patienten skrevs in på psykiatrisk vårdavdelning. Frågorna handlade om den anhöriges relation till patienten, uppfattning om patientens möjlighet att återfå sin psykiska hälsa, bedömning av graden av tvång vid intagning, uppfattning om varför patienten blev intagen, vårdtillfredsställelse, samt om bemötande och delaktighet i och dialog med den psykiatriska vården.

Den enligt de anhöriga vanligast förekommande orsaken till att patienten blev intagen var att det förelåg allvarlig fara för eller hot mot patientens hälsa samt att patienten var oförmögen att ta hand om sig själv. Bedömningarna av vilken grad av tvång patienterna upplevde vid intagningen visade på samstämmighet mellan patienter och anhöriga. Däremot var det en större andel bland de svarande närstående än bland patienterna som ansåg att patientens behandlare eller kontaktperson förstod patienten och var engagerad i patientens behandling och vård, att patienten blev respekterad och väl behandlad på avdelningen, samt att behandlingen och vården varit till hjälp för patienten. Många anhöriga kunde tänka sig ett tvångsomhändertagande i det fall patienten skulle få samma problem igen och inte skulle vilja läggas in frivilligt.

Över 80 procent av de närstående kände sig "som vanligt", likvärdiga eller respekterade i sina kontakter med psykiatrin. Nästan 40 procent uppgav att de inte kände sig tillräckligt delaktiga i patientens vård och behandling. De som hade haft kontakt med psykiatrin under det senaste året kände sig bättre bemötta och mer delaktiga i patientens inläggning, vård och behandling än de som inte hade haft någon kontakt. Över hälften upplevde inte att de haft någon dialog med personal från psykiatrin. Svaren uttrycker stor variation med både stark kritik mot och stor tillfredsställelse med kontakterna med psykiatrin, liksom att inte alla an-höriga vill ha någon omfattande sådan kontakt.

En stor del av de närstående uttryckte optimism beträffande patientens prognos. Många trodde att deras sjuke son, dotter, förälder, make, maka, sambo, partner, släkting eller vän helt eller delvis skulle återfå sin psykiska hälsa, framför allt bland anhöriga till patienter som inte varit sjuka sedan så lång tid tillbaka.

Anhörigas insatser efter stroke är omfattande och ofta livslånga. Följderna för anhöriga behöver uppmärksammas mer, visar enkätstudie

Hulter Åsberg, K., Söderholm, A., Bjarne, D., & Johansson, L. (2014)

Studiens syfte var att beskriva konsekvenserna för anhöriga när en närstående insjuknat i stroke. Drygt 11 000 anhöriga svarade på Riks-Strokes enkäter 2010–2012.

Drygt hälften var vårdgivande anhöriga vars liv förändrats genom bundenhet till hemmet och omfattande hjälpinsatser.

Många under 65 år hade gått ner i arbetstid eller lämnat arbetslivet på grund av vårduppgiften. Denna grupp hade minst kunskap om vart de kunde vända sig för att få råd och stöd.

Anhörigas roll har blivit allt viktigare när personer med funktionsnedsättning förväntas bo kvar hemma.

Vårdgivande anhöriga behöver återkommande stöd för sin ofta livslånga vårdinsats och bör uppmärksammas också i andra kvalitetsregister.

Anhörigas uppfattningar om bostad med särskild service enligt LSS. Boendeprojektet, delrapport 17.

Carlbom, A., & Östman, M. (2007)

Sammanfattningsvis kan man säga att LSS-boende, som uttrycks av
informanterna i den här studien, har varit positivt för den boende själv och alla
som kommit i kontakt med honom eller henne. Det är tydligt i informanternas
berättelser att de och deras anhöriga, i samband med att LSS-boendet blivit
verklighet, har fått till en förändring av hela den sociala kontext de levde och
lever i. Man kan sammanfatta LSS-boendets sociala och psykologiska effekter i
några konkreta punkter för de anhöriga respektive de boende:
15
De anhöriga
De anhöriga befrias från den oro för den boendes välmående och praktiska
omständigheter som präglade vardagslivet före LSS-boendet. Detta boende
medför alltså en högre grad av vardaglig trygghet. De anhöriga får också en
avlastning av den emotionella anspänning det innebär att ha en familjemedlem
som lider av psykisk ohälsa. Dessutom erhåller de ett delat ansvar för den
familjebörda det innebär att ha en familjemedlem som lider av psykisk ohälsa. De
blir också avlastade det sociala stigma det kan innebära att ha en familjemedlem
som har ett psykiskt funktionshinder.
De boende
Den boende erhåller en struktur i vardagslivet på LSS-boendet som saknades vid
det tidigare boendet. Här finns också möjlighet att få hjälp med den personliga
omvårdnaden och att upprätta relationer specialister av olika slag, bland annat
läkare som kan övervaka eventuell medicinering. Den boende blir också avlastad
det sociala stigma som tidigare präglade relationen till framförallt grannar och
fastighetsägare.
Den generella slutsats som kan dras i den här studien är att denna form av boende
erbjuder en förhöjd livskvalité för samtliga parter. Sammantaget verkar alltså
denna boendeform gynna den psykiska hälsan för alla och kan därmed sägas bidra
till att hela samhället på ett eller annat sätt gynnas.

Anhörigas upplevelser av personalens stöd i hemtjänst och på särskilt boende

Ljungbeck, B. (2012)

Bakgrund: Mer och mer forskning har tillägnats anhörigstöd och kunskap om vilket stöd anhöriga behöver har växt fram. Studier visar att det uppstår onödiga konflikter mellan personal och anhöriga inom äldreomsorgen på grund av bristande kommunikation och förståelse för varandra. Sedan 2009 är personal skyldiga att erbjuda anhöriga stöd vilket har lett till behov av att utveckla modeller för hur personal och anhöriga kan mötas. Anhörigstöd i Partnerskap är en sådan modell. Syfte: Syftet med studien var att beskriva vilka sorters stöd som anhöriga i hemtjänst och på särskilt boende uttrycker att de behöver av personalen. Ett ytterligare syfte var att belysa om de anhöriga upplevde några förändringar i stödet efter att personalen genomgått en utbildning, "Anhörigstöd i Partnerskap". Metod: Nio semistrukturerade intervjuer har genomförts med anhöriga till äldre på särskilt boende och i hemtjänst. Intervjuerna har analyserats med en latent innehållsanalys. Resultat: I ett gott anhörigstöd ingick att veta att den äldre hade det bra, att anhöriga blev sedda av personalen, att anhöriga fick stöd av personalen i beslutsfattande och att anhöriga fick stöd av personalen i att våga släppa taget och kunna slappna av. Endast smärre förändringar efter utbildningen noterades. Slutsats: Flera viktiga aspekter av ett gott anhörigstöd har framkommit, vissa av dessa aspekter var tillgodosedda medan andra inte var det. Personalen har genom utbildningen fått verktyg för att ytterligare utveckla anhörigstödet. Möjligheten att lyckas bedöms som stor då intresset och engagemanget för att utveckla stödet till anhöriga finns bland både personal och chefer.

Anhörigkonsulentens arbete och yrkesroll

Winqvist, M. (2014)

Anhörigkonsulenter och motsvarande yrkesgrupper har en central betydelse för innehållet i och utvecklingen av anhörigstödet i landets kommuner. Nka har därför genomfört en enkätstudie med syftet att få en nationell överblick över hur denna relativt sett nya yrkesgrupp utformar och ser på sitt arbete. Denna rapport innehåller en sammanställning av svaren på denna enkät som riktade sig till landets samtliga anhörigkonsulenter.

Anhörig-omsorg och stöd

Johansson L. (2007)

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.

Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.

Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.

Anhörigperspektiv - en möjlighet till utveckling? Nationell kartläggning av kommunernas stöd till anhöriga 2019

Takter Martina (2020)

Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.

Anhörigperspektiv i äldreomsorg - ett utvecklingsprojekt

Winqvist, M., & Lerman, B. (2010)

Under 2008 – 2009 genomförde Enheten för FoU-stöd, Regionförbundet Uppsala län ett utvecklingsprojekt tillsammans med en personalgrupp vid ett särskilt boende i Enköpings kommun samt en personalgrupp vid ett hemtjänstdistrikt i Tierps kommun.

Syftet med projektet var att införa och stärka ett anhörigperspektiv i den ordinarie äldreomsorgen. Vid uppföljning hösten 2009 framkom att flera förbättringar har genomförts i verksamheterna som en följd av projektet. Projektet presenteras i den här rapporten.

Anhörigperspektiv i äldreomsorg – ett utvecklingsprojekt, FoU-rapport 2010/3.

Winqvist, M. (2010)

Den offentliga äldreomsorgen har sedan 1990-talet allt mer koncentrerats till personer med
omfattande hjälp-/stödbehov. Tröskeln till hemtjänst har höjts. Kunskaperna har samtidigt
ökat om omfattningen av den hjälp som anhöriga faktiskt ger och att denna hjälp även kan
innebära stora påfrestningar för de anhöriga. Detta har lett till att staten under senare år har
gjort stora satsningar för att stimulera utvecklingen av kommunernas stöd till anhöriga. Detta
stöd kan vara direkt eller indirekt. Det kan också beskrivas som synligt respektive osynligt.
Det personalen gör för den person som är sjuk eller funktionshindrad innebär, om det utförs
väl, ett indirekt stöd för den anhöriga. Det osynliga stödet handlar mycket om att ha god
kunskap om anhörigas villkor, förståelse av den anhörigas roll i omsorgsarbetet och för den
anhörigas personliga situation samt hur anhöriga betraktas och bemöts. I detta perspektiv är
stöd till anhöriga en angelägenhet inte bara för dem som arbetar med direkt anhörigstöd utan
för hela organisationen
Ett övergripande syfte med detta projekt har varit att utveckla och pröva metoder för att införa
och stärka ett anhörigperspektiv i vård och omsorgsverksamhet för äldre. Projektet har
genomförts tillsammans med personal i Örbyhus hemtjänstdistrikt i Tierps kommun och
personal på Tallgårdens särskilda boende för äldre i Enköpings kommun.
Projektet har genomförts i tre faser.
1. Analys. Syftet var här att få information om hur de berörda verksamheterna fungerar ur ett
anhörigperspektiv, detta som ett underlag för utvecklingsarbetet. Fokusgruppsintervjuer
genomfördes dels vid hemtjänsten och dels vid det särskilda boendet med såväl anhöriga som
personal samt vid ett senare tillfälle en fördjupad gruppintervju med anhöriga.
2. Intervention. En FoU-cirkel genomfördes, sex träffar à tre timmar, med personalgrupperna
vid hemtjänsten respektive det särskilda boendet. I cirkeln deltog även enhetscheferna och
anhörigkonsulent/anhörigrådgivare. Arbetet var processinriktat och gick ut på att utveckla ett
anhörigperspektiv (förståelse och medvetenhet) samt formulera en handlingsplan för ett
förhållningssätt till och samarbete med anhöriga. Ett genomgående inslag i FoU-cirkeln var
gruppdiskussioner och reflektion. Tanken var att deltagarna själva skulle skapa sin
verksamhets anhörigperspektiv och inte serveras någon färdig lösning. Resultaten från
analysfasen var, tillsammans med deltagarnas egna erfarenheter, ett viktigt grundmaterial för
diskussionerna i FoU-cirkeln. Andra inslag var föredrag om olika teman, informationsgranskning,
film, egna intervjuer med någon anhörig samt arbete med att formulera en
handlingsplan. Varje möte dokumenterades.
3 Uppföljning. Uppföljning av projektet gjordes på flera sätt. Cirka tre månader efter
projektets slut genomförde anhörigkonsulenten/-rådgivaren en gruppintervju med sina
respektive personalgrupper. Vid samma besök fick deltagarna också individuellt fylla i en
utvärderingsblankett. Ytterligare ca tre månader senare genomförde projektledningen återigen
en fokusgruppsintervju med samma frågeställning som i analysfasen samt en gruppintervju
kring frågan om hur anhörigperspektivet kan hållas levande och fortsätta att utvecklas.
Efter projektet kan konstateras att arbetsformen fungerat väl och varit uppskattad. Det kanske
mest betydelsefulla inslaget har varit möjligheten för personalen att i gruppdiskussioner
reflektera kring vad de hört i föredrag, sett i film, läst i artiklar och upplevt i egna intervjuer
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med anhöriga. Flera exempel gavs på förändringar som genomfördes redan medan projektet
pågick. Exempel på det är införande av telefontid för ökad tillgänglighet, förbättrad
information genom pärmsystem, nya rutiner för kontaktmannaskapet samt en utvecklad
relation mellan kontaktmannen och biståndshandläggaren.

Anhörig i nöd och lust

Johansson, L. (2012)

Den här boken vänder sig till dig som vårdar, stödjer eller hjälper din make eller maka, partner, dina barn, syskon, en förälder eller någon annan närstående. Förhoppningsvis ska den guida dig till att efter förmåga, förutsättningar och med stöd och hjälp finna balans mellan att hjälpa andra och livet i övrigt. Budskapet är att du ska tänka på dig själv, både för ditt eget bästa och för den du hjälper. För att kunna hjälpa andra måste också du själv få hjälp.

Annas oroliga mamma. En berättelse om ångestsyndrom

Jessica Hjert (2014)

"Annas mamma har en sjukdom som gör att hon alltid är rädd, men Anna förstår inte alls varför. Hon är inte ens rädd för riktiga saker, som ormar, spindlar och sådant. Nej, hon är mest rädd för saker som inte finns eller sådant som inte ens hänt. "I boken får du följa Anna och hennes mamma Eva som har en ångestsjukdom. På ett enkelt sätt får du och ditt barn genom denna berättelse lära er mer om ångestproblematik. Barn och förälder kan tillsammans läsa boken för att diskutera kring rädsla, oro och ångest. Kanske blir boken en naturlig ingång till att presentera sina egna eller en anhörigs problem? Boken kan även användas som högläsning i grupp.Jessica Hjert är beteendevetare med en kandidatexamen i psykologi. Hon har tidigare gett ut "Måste alla vara så jävla lyckliga hela tiden -Svårigheterna föräldrar inte talar om."

Annas pappa får rättspsykiatrisk vård

Alphonce, Elisabet (2011)

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

Här får vi en beskrivning hur det kan bli när en förälder blir intagen för rättspsykiatrisk vård. 

Annorlunda syskon – syskon med funktionshinder

Blomgren, Frida., Wanker, Maria (2010)

Att växa upp med ett funktionshindrat syskon

Annorlunda syskon handlar om hur det kan vara att växa upp med ett funktionshindrat syskon. Om svårigheter och glädjeämnen och hur det kan prägla de friska barnen.

Boken bygger på intervjuer med nio vuxna syskon där författaren Frida Blomgren har utgått ifrån tio frågeställningar, en för varje kapitel. Det som främst slår en är hur mycket de olika syskonen har gemensamt, både egenskaper och erfarenheter, trots att deras familjer och hemförhållanden har sett olika ut.

Många berättelser handlar om den oro för sjukdom som fanns under barndomen. När syskonen blir äldre finns också tanken på att den dag föräldrarna inte längre orkar eller är kvar i livet, kommer ansvaret att läggas på det friska syskonet. Samtidigt har många nära till glädje och de har lärt sig att inte oroa sig i onödan utan att leva i nuet.

Another Chance Hope and Health for the Alcoholic Family

Wegscheider, S. (1986)

The second edition of this classic work on recovery for alcohol families updates and expands the original, which won a Marty Mann Award as an outstanding contribution on alcohol communications. The first ten chapters of Another Chance pull the curtain back on the alcoholic family. We meet its cast of characters: the Dependent, the Enabler, the Hero, the Scapegoat, the Lost Child, the Mascot. The author then spells out a treatment plan for halting the downward spital of alcoholism -- a powerful blend of the Twelve Steps pioneered by Alcoholics Anonymous, the Family Reconstruction process developed by Virginia Satir, Wegscheider-Cruse's innovative and eclectic approach to therapy, and her own recovery from co-dependency. The second edition also addresses adult children of alcoholics, sprituality, and co-dependent therapists.

Ansvar, kärlek och försörjning. Om anställda anhörigvårdare i Sverige.

Mossberg Sand, A-B. (2000)

Avhandling

In Sweden the municipalities have the responsibility to provide the elderly, ill and disabled with the assistance they need to make home living possible. Still, most caring takes place in the family and is performed by relatives. Sometimes a relative carer can be employed and paid by the municipality to perform the help. The aim of this study is to explore the situation of employed family carers. Another purpose has been to investigate how responsibility and work are distributed between society and kin care providers. The results are based upon a project containing four partial studies; a survey investigation based on a random sample with replies from 1197 relative care providers in Sweden representing one fifth of all employed carers at the time. This was followed by an interview study comprising 40 relative care providers and care recipients. The other two partial studies were targeted at social and elderly care management and home-help service assistants respectively. The carers are made up ofthree main groups ;children, spouses and parents. There is also a smaller group with siblings, daughters-in-law, other relatives and friends. The main part ofthe kin care providers consists ofwomen, but 15 percent are men. The clas s status is principally that ofworkers and lower civil servants, although all social classes are represented. Apparently, it is not easy to combine care for relatives with a full effort in the regular labour market. Despite the fact that most women were working part-time, it was sometimes problematic to combine shorter hours with the caring. Thanks to the salary, the majority of the kin care providers have not suffered any economic losses. Apart from the bread-winning aspect, the salary has another important significance - even though the monetary sUll at times is extremely small, it is regarded as recognition of the work. One conclusion, which can be drawn from this investigation, is that the employment and salary are a very appreciated form of support. The salary is a replacement for a work effort, and it has also provided the possibility to quit or reduce other work in order to perform the care. The majority of the kin care providers are content, although many ofthem want better employment terms and higher wages - or rather conditions which correspond to other care work, and a salary which corresponds to the effort. As far as the division between the society and the kin care providers is concerned, it can be said that a lot of the re.sponsibility and work lies with the relatives. Some relatives do not want too much societal intervention, but settle with monetary replacement. Others have apparent needs of assistance, and a working situation which is inhumane. In some cases, it even amounts to a societal abuse of people's responsibility for their relatives.

Anticipated support from neighbors and physical functioning during later life

Shaw, B. A. (2005)

This study has two main objectives: (1) to assess age variations in perceived support from neighbors among a nationally representative sample of adults aged 25 to 74 and (2) to examine the association between anticipated support from neighbors and physical functioning within a subsample of older adults. The findings suggest that anticipated support from neighbors is stronger among older adults, primarily because of more frequent contact with neighbors and residential stability. Within the older subsample, an inverse association between perceived support from neighbors and functional limitations is evident. Further analyses show that this association is strongest among those with infrequent contact with family members. No differences in this association were found with respect to marital status. Taken together, it appears that anticipated support from neighbors facilitates the maintenance of functional ability among some older adults. Interventions aiming to promote successful aging by enhancing this source of support should be developed and evaluated.

Anticipatory Grief Among Close Relatives of Patients in Hospice and Palliative Wards

Johansson, Å. K. and A. Grimby (2012)

A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.

Anticipatory Grief Among Close Relatives of Persons With Dementia in Comparison With Close Relatives of Patients With Cancer

Johansson, Å. K., Sundh, V., Wijk, H., & Grimby, A. (2012)

Close relatives of persons with dementia self-reported reactions on the Anticipatory Grief Scale (AGS), were observed by nurses (Study I), and compared with relatives of cancer patients in a study using the same methodology (Study II). Study I showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The ability to cope was, however, reported high. Self-assessments and nurses' observations did not always converge, e.g. for the acceptance of the illness. The reactions of the relatives in the dementia and the cancer groups showed more similarities than dissimilarities. However, the higher number of responding spouses in the cancer group may have influenced the outcome.

Antologin: Att se barn som anhöriga - om relationer, interventioner och omsorgsansvar

Järkestig Berggren Ulrika, Magnusson Lennart, Hanson Elizabeth redaktörer (2015)

Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderråriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbat föräldrar eller syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
I denna antologi försöker forskare som deltar i eller är inbjudna till det svenska forskarnätverket "Barn som anhöriga" att utifrån aktuell forskning undersöka, beskriva och förklara innebörden i att barn är anhöriga. Olika teman lygfs såsom barns positoioner i familjen där utsatthet och beroende i relation till föräldrar beskrivs men också barns aktiva agerande i relation till föräldrar och syskon belyses.
Ett sådant exempel är när barn blir omsorgsgivare till syskon eller föräldrar, vilket också beskrivs i en internationell utblick. Vidare beskrivs hur många barn som är anhöriga i de sammanhang som hälso- och sjukvårdslagen omfattar och hur det går för dem i skolan. Ett avsnitt tar upp aktuell kunskap om befintliga interventioner för stöd till barn och föräldrar. Även stöd till anhöriga syskon och forskning om om våld i familjen belyses.
Boken vänder sig till studerande på sjuksköterske-, läkar-, socionom- och lärarprogrammet samt övriga proffessionsutbildningar som i sin yrkesverksamhet möter anhöriga barn och deras föräldrar i behov av stöd. Den ä räven avsedd för beslutsfattare, verksamhetsutvecklare, enskilda personer och idéburna organisationer som söker kunskap om barns livsvillkor som anhöriga.

Apelsinträdgården

Roca Ahlgren, Malin (2018)

Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.

Applying the Theory of Motivated Information Management to adult children's discussions of caregiving with aging parents

Fowler, C. and W. A. Afifi (2011)

Adult children are perhaps the most important source of eldercare for aging parents. Unfortunately, they rarely discuss potential eldercare arrangements with their parents prior to adopting a caregiving role, which may make adapting to the parent's transition to dependency all the more challenging. The Theory of Motivated Information Management (TMIM) is a social-psychological framework that has had success predicting information-seeking decisions about health issues. As such, it served as the theoretical basis for examining adult children's pursuit of information from their elderly parents about caregiving preferences. In addition, this study serves as the first empirical test of a revised version of the TMIM, with an expanded treatment of the role played by emotion. The results of an over-time study attest to the utility of the revised TMIM predictions in this context, and offer insight into the factors that predict adult children's decision to discuss caregiving with their parents.

Approaching the prevalence of the full spectrum of fetal alcohol spectrum disorders in a South African population-based study

May PA, Blankenship J, Marais AS, Gossage JP, Kalberg WO, Barnard R, De Vries M, Robinson LK, Adnams CM, Buckley D, Manning M, Jones KL, Parry C, Hoyme HE, Seedat S. (2013)

BACKGROUND:
The prevalence and characteristics of fetal alcohol spectrum disorders (FASD) were determined in this fourth study of first-grade children in a South African community.
METHODS:
Active case ascertainment methods were employed among 747 first-grade pupils. The detailed characteristics of children within the continuum of FASD are contrasted with randomly selected, normal controls on (i) physical growth and dysmorphology; (ii) cognitive/behavioral characteristics; and (iii) maternal risk factors.
RESULTS:
The rates of specific diagnoses within the FASD spectrum continue to be among the highest reported in any community in the world. The prevalence (per 1,000) is as follows: fetal alcohol syndrome (FAS)-59.3 to 91.0; partial fetal alcohol syndrome (PFAS)-45.3 to 69.6; and alcohol-related neurodevelopmental disorder (ARND)-30.5 to 46.8. The overall rate of FASD is therefore 135.1 to 207.5 per 1,000 (or 13.6 to 20.9%). Clinical profiles of the physical and cognitive/behavioral traits of children with a specific FASD diagnosis and controls are provided for understanding the full spectrum of FASD in a community. The spectral effect is evident in the characteristics of the diagnostic groups and summarized by the total (mean) dysmorphology scores of the children: FAS = 18.9; PFAS = 14.3; ARND = 12.2; and normal controls, alcohol exposed = 8.2 and unexposed = 7.1. Documented drinking during pregnancy is significantly correlated with verbal (r = -0.253) and nonverbal ability (r = -0.265), negative behaviors (r = 0.203), and total dysmorphology score (r = 0.431). Other measures of drinking during pregnancy are significantly associated with FASD, including binge drinking as low as 3 drinks per episode on 2 days of the week.
CONCLUSIONS:
High rates of specific diagnoses within FASD were well documented in this new cohort of children. FASD persists in this community. The data reflect an increased ability to provide accurate and discriminating diagnoses throughout the continuum of FASD.

Are Children of Holocaust Survivors Less Well- Adapted? A Meta-Analytic Investigation of Secondary Traumatization

Van IJzendoorn, M. H. (2003)

H. Keilson (1979) coined the term "sequential traumatization" for the accumulation of traumatic stresses confronting the Holocaust survivors before, during, and after the war. A central question is whether survivors were able to raise their children without transmitting the traumas of their past. Through a series of meta-analyses on 32 samples involving 4,418 participants, we tested the hypothesis of secondary traumatization in Holocaust survivor families. In the set of adequately designed nonclinical studies, no evidence for the influence of the parents' traumatic Holocaust experiences on their children was found. Secondary traumatization emerged only in studies on clinical participants, who were stressed for other reasons. A stress-diathesis model is used to interpret the absence of secondary traumatization in nonclinical offspring of Holocaust survivors.

Are parental ADHD problems associated with a more severe clinical presentation and greater family adversity in children with ADHD?

Agha, S. S., Zammit, S., Thapar, A., & Langley, K. (2013)

Although Attention Deficit Hyperactivity Disorder (ADHD) is recognised to be a familial and heritable disorder, little is known about the broader family characteristics of having a parent with ADHD problems. The main aim of this study was to investigate the relationship between parent ADHD problems, child clinical presentation and family functioning in a sample of children with ADHD. The sample consisted of 570 children with ADHD. Child psychopathology was assessed using a semi-structured diagnostic interview. Questionnaires were used to assess ADHD in the parents (childhood and current symptoms), family environment and mother/father-child relationship. Parental ADHD problems were associated with a range of adverse clinical outcomes in children with no difference in effects for mothers with ADHD problems compared to fathers with ADHD problems. Levels of maternal hostility were higher in families where mothers had ADHD problems, but reduced where fathers had ADHD problems. Parental ADHD problems index higher risk for more severe clinical presentation of ADHD in children and higher levels of family conflict (where there are maternal but not paternal ADHD problems). This study highlights that children with more severe behavioural symptoms are more likely to have a parent with persistent ADHD which has important implications when considering treatment and intervention strategies.

Are the ICF activity and participation dimensions distinct?

Jette AM, Haley SM, Kooyoomjian JT. (2003)

Objective: To test the hypothesis that distinct Activity and
Participation dimensions of the International Classification
of Functioning, Disability, and Health could be identified
using physical functioning items drawn from the Late Life
Function and Disability Instrument.
Design: A cross-sectional, survey design was employed.
Subjects: The sample comprised 150 community-dwelling
adults aged 60 years and older.
Methods: Exploratory factor analysis was used to identify
interpretable dimensions underlying 48 physical functioning
questionnaire items.
Results: Findings revealed that one conceptual dimension
underlying these physical functioning items was not suffi-
cient to adequately explain the data (X2 = 2383; p  0.0001).
A subsequent solution produced 3 distinct, interpretable
factors that accounted for 61.1% of the variance; they were
labeled: Mobility Activities (24.4%), Daily Activities
(24.3%), and Social/Participation (12.4%). All 3 factors
achieved high internal consistency with coefficient alphas of
0.90 or above.
Conclusion: Within physical functioning, distinct concepts
were identified that conformed to the dimensions of Activity
and Participation as proposed in the ICF. We believe this is
the first empirical evidence of separate Activity and
Participation dimensions within the International Classification
of Functioning, Disability, and Health classification.

Article: Specialized substance abuse treatment for women and their children. An analysis of program design

Uziel-Miller ND, Lyons JS (2000)

In the present study, 36 specialized substance abuse treatment programs for women and their children were identified and chosen for review. These programs provide a wide range of services including substance abuse, mental health and medical treatment, life skills training (i.e. vocational and parenting training), and social services (i.e. child care and transportation). A cluster analysis was conducted, and three distinct patterns of program design were identified. Results suggest that programs vary considerably regarding the extent to which comprehensive services are provided and to whom they are offered. Many programs that appear to be comprehensive fail to provide the full range of services to all those who need them. In particular, many programs for pregnant women seem to focus almost exclusively on pregnancy-related issues. As such, specialized substance abuse treatment for women may be at risk for becoming too specialized. Recommendations are made for future substance-related program planning for women and their children.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy.

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Assessing Family Caregiver Needs

AARP Public Policy Institute (2012)

Caregiver assessment is a systematic process of gathering information about a
caregiving situation to identify the specific problems, needs, strengths, and resources
of the family caregiver, as well as the ability of the caregiver to contribute to the needs
of the care recipient. Effectively assessing and addressing caregiver needs can maintain
the health and well-being of caregivers, sustain their ability to provide care, prevent or
postpone nursing home placement, and produce better outcomes for the care recipient.

Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Joseph S, Becker S, Becker F, Regel S. (2009)

BACKGROUND: Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects. METHOD: Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited. RESULTS: Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported. CONCLUSION: The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.

Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory

Östensjö S, Bjorbäkmo W, Brogren Carlberg E, Völlestad NK. (2006)

BACKGROUND:
Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements.
PURPOSE:
To examine the conceptual basis and the content of the PEDI using the ICF.
METHOD:
Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached.
RESULTS:
The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequently use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment.
CONCLUSIONS:
Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood.

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

Scharlach, A.E., Gustavson, K. & Dal Santo, T. S. (2007)

Abstract
PURPOSE:

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients.
DESIGN AND METHODS:

Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services.
RESULTS:

Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers.
IMPLICATIONS:

Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Assisting people with multiple disabilities actively correct abnormal standing posture with a Nintendo Wii balance board through controlling environmental stimulation

Shih CH, Shih CT, Chu CL. (2010)

The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board functionality for standing posture correction (i.e., actively adjust abnormal standing posture) to assessed whether two persons with multiple disabilities would be able to actively correct their standing posture by controlling their favorite stimulation on/off using a Wii Balance Board with a newly developed standing posture correcting program (SPCP). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Data showed that both participants significantly increased time duration of maintaining correct standing posture (TDMCSP) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

Assistive technology: Interventions for individuals with severe/profound and multiple disabilities.

Lancioni, G. E., Sigafoos, J., O'Reilly, M. F., & Singh, N. N. (2012)

For people with severe/profound and multiple disabilities, managing the basic necessities of daily life often poses myriad challenges. Despite great odds, advances in assistive technology are making a difference in these individuals' lives. Advances in microswitches, voice outcome communication aids, and computer-based systems are creating new opportunities for living independently, improving basic life skills, and reducing problem behaviors among individuals with combined motor, sensory, and intellectual disabilities.
This unique volume examines how education and rehabilitation can improve the lives of even those individuals most affected by severe/profound and multiple disabilities. Interventions currently in use and in experimental stages are surveyed in terms of how they work and their applicability to clients with various needs. In addition, it examines the characteristics of developmentally disabled populations and offers guidelines for choosing suitable technologies. It presents empirical evidence on the advances in improving interaction with caregivers, control of the home environment, handling self-care tasks, and other core skills.
Assistive Technology examines interventions that are innovative, respectful of the dignity of clients, and practical for ongoing use, including:
• Microswitches in habilitation programs.
• Speech-generating devices for communication and social development.
• Instructional technology for promoting academic, work, and leisure skills.
• Assistive technology for promoting ambulation.
• Orientation systems for promoting movement indoors.
• Assistive technology for reducing problem behaviors.
A state-of-the-art guide to a growing field, Assistive Technology is an invaluable resource for researchers, clinicians, graduate students as well as clinicians and allied professionals in developmental psychology, rehabilitation and rehabilitative medicine, learning and instruction, occupational therapy, speech-language pathology, and educational technology.

Association between parents' PTSD severity and children's psychological distress: a meta-analysis

Lambert, J. E., Holzer, J., & Hasbun, A. (2014)

The authors conducted a meta-analysis of studies on the correlation between parents' PTSD symptom severity and children's psychological status. An extensive search of the literature yielded 550 studies that were screened for inclusion criteria (i.e., parent assessed for PTSD, child assessed for distress or behavioral problems, associations between parent PTSD and child status examined). Sixty-two studies were further reviewed, resulting in a final sample of 42 studies. Results yielded a moderate overall effect size r = .35. The authors compared effect sizes for studies where only the parent was exposed to a potentially traumatic event to studies where both parents and children were exposed. A series of moderators related to sample characteristics (sex of parent, type of traumatic event) and study methods (self-report vs. diagnostic interview, type of child assessment administered) were also evaluated. The only significant moderator was type of trauma; the effect size was larger for studies with parent-child dyads who were both exposed to interpersonal trauma (r = .46) than for combat veterans and their children (r = .27) and civilian parent-child dyads who were both exposed to war (r = .25). Results support the importance of considering the family context of trauma survivors and highlight areas for future research.

Association between the caregiver's burden and physical activity in community-dwelling caregivers of dementia patients

Hirano A, Suzuki Y, Kuzuya M, Onishi J, Hasegawa J, Ban N, et al. (2011)

Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.

Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort

Keysor JJ, Jette AM, Coster WJ, Bettger JP, Haley SM. (2006)

Keysor JJ, Jette AM, Coster W, Bettger JP, Haley SM. Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort.

Objective

To examine whether home and community environmental barriers and facilitators are predictors of social and home participation and community participation at 1 and 6 months after discharge from an acute care or inpatient rehabilitation hospital.

Design

Cohort study.

Setting

Postacute care.

Participants

Adults (N=342) age 18 years or older with a diagnosis of complex medical, orthopedic, or neurologic condition recruited from acute care and inpatient rehabilitation facilities. The mean age ± standard deviation of participants was 68±14 years; 49% were women and 92% were white.

Interventions

Not applicable.

Main Outcome Measures

Participation in social, home and community affairs as assessed with the Participation Measure for Post-Acute Care.

Results

Adjusting for covariates, 1 month after discharge a greater presence of home mobility barriers (P<.01) was associated with less social and home participation; whereas greater community mobility barriers (P<.01) and more social support (P<.001) were associated with greater participation. At 6 months, social support was the only environmental factor associated with participation after adjusting for covariates.

Conclusions

This study provides new empirical evidence that environmental barriers and facilitators do influence participation in a general rehabilitation cohort, at least in the short term.

Key Words
Disabled persons; Environment; Outcome assessment (health care); Rehabilitation
Supported by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education (grant no. H133B990005), the National Institute of Child Health and Human Development (grant no. 5 K12 HD043444-02), and the Arthritis Foundation (arthritis investigator award).

No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.

Att fördela bistånd. Om handläggningsprocessen inom äldreomsorgen

Lindelöf, M. and E. Rönnbäck (2004)

The aim of this dissertation is to illustrate the manner in which assistance is distributed to the elderly according to the social services law in Sweden. It will focus on the processing officers/"street-level bureaucrats" who have been assigned, based on their profession, the task of assessing and deciding about the distributing of assistance. Central issues include the manner in which process officers go about their assignement and how their actual performance appears in comparision with the prescribed course of action. The dissertation´s starting pionts are in part, the legal regulations in the form of the social service law´s material and procedural rules, and in part the role as street-level bureaucrat and the construction of the client. The data which forms the basis for the conclusions of the dissertation consists of four studies conducted during the period 1995-2001. The first investigation - The Sundsvall study - is explorative and gives a first insight into how the process officers act and document the processing of a case. The process officers study is a national investigation with process officers from 27 municipalities. This second study focuses on the various ways to organise the handling process, and how these may influence the finding for assistance. The documentation study is also a national investigation of 29 municipalities. In this third study the written documentation of the case handling process is primarily exposed. Focus groups comprise the final sorce of data in which a group of processors in tree municipalities discuss their work. The process officers in the focus group describe several usual situations. With support from the various investigations, a picture appears which does not agree with prescribed course of action according to the legislation. What appears instead is a pattern of action which probably already existed before we began this work and which likely continues. This pattern of action has as we have established two faces, one of which constitutes an informal process where the actual construction of the "help-seeker" take place. Whitin the frame for this aspect, the so-called "service catalouge" has a decisive meaning, which in it´s own way is directed towards satisfying primarely physical and medical needs. The other "face" displays the formalised expresson of the informal process. This formal expression does not reveal all that is going on, only chosen elements. The action that we have found are institutionalized as an officially sanctioned institution since the practice is widely accepted and legitimized. The public intstitution is therefore built upon a pattern of action that consists both of formal rule, but primarily standards and routines which in many regards occur outside the formal rules. The consequences of a pattern of action that has been institutionalized and legitimized affects those seeking help who do not receive the individual assessment that they have a right to according to the law.

‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care.

Andréasson Frida, Mattsson, Tina, Hanson, Elizabeth (2021)

ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Marcus F. Johansson, Kevin J. McKee, Lena Dahlberg, Christine L. Williams, Martina Summer Meranius, Elizabeth Hanson, Lennart Magnusson, Björn Ekman, Lena Marmstål Hammar (2021)

Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.

Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.

Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

A Divided Old Age through Research on Digital Technologies

Poli, Arianna (2021)

Doktorsavhandling

This thesis aims at contributing to the understanding of digital inequalities among older people, by studying the involvement of older people in research on digital technologies. Some mechanisms driving old age digital inequalities are well known. For instance, people with lower social positions tend to have lower digital skills, to face technology accessibility and affordability issues, and, thus, to engage less with digital technologies compared to their counterparts. However, less attention has been paid to issues related to research and development of digital technologies, such as the involvement of older people in research evaluating new digital technologies. Previous studies indicate that participants and non-participants in research are different one another, with the former being younger, reporting higher educational levels, having better health status than the non-participants. This may bias research outcomes and lead to incorrect conclusions on the utility of digital technologies. The objective of this thesis is to investigate the link between the involvement of older people in digital technology evaluations and the research outcomes. Healthcare is used as exemplifying context in which digital technologies are used. In Study I, participation in digital health research is conceptualised, and a research tool for identifying and measuring selective participation is developed. In Study II and III, factors associated with participation in two digital health intervention studies are analysed. In Study IV, the impact of selective participation on the research outcomes of a digital health study is identified, measured, and corrected. Thesis findings show that participation of older people in digital health research is selective by age, gender, health status, job level, and digital skills, and can indicate a mechanism for digital inequalities. Selective participation biases research outcomes by overemphasising the intervention effects of the over-represented groups over those among the under-represented groups. It can cause an overestimation of the positive effects of digital health technologies due to the under-representation of those groups who do not benefit from the intervention. This promotes digital technologies which increase exclusion risks for some groups of older people and reinforce old age digital and social inequalities. Weighting procedures can be used for mitigating the impact of this mechanism on the research outcomes of intervention studies on digital technologies.

Att ha en förälder som dömts till fängelse försämrar barnens livschanser

Will Dobbie, Hans Grönqvist, Susan Niknami, Mårten Palme, Mikael Priks (2019)

Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.

Rapporten är en sammanfattning av IFAU Working paper 2019:24

Barn som närstående i Sörmland behöver stärkt stöd Resultat från Liv & Hälsa ung undersökningen 2020

Region Sörmland (2021)

Syftet med denna kartläggning är att beskriva hur många barn som är närstående till någon som
har allvarlig fysisk/psykisk sjukdom/funktionsnedsättning, missbruk eller plötsligt avlidit. Vi
beskriver också hur barn som närstående har det inom områden som rör skola, hälsa, riskbeteenden ANT (alkohol, narkotika och tobak), socialt stöd samt trivsel och framtidstro. Målet med
rapporten är att uppmärksamma livsvillkoren hos barn som närstående i Sörmland.

Benefits and barriers of technologies supporting working carers - A scoping review

Alice Spann, Joana Vicente, Sarah Abdi, Mark Hawley, Marieke Spreeuwenberg, Luc de Witte (2021)

Abstract
Combining work and care can be very challenging. If not adequately supported, carers' employment, well- being and relationships may be at risk. Technologies can be potential solutions. We carried out a scoping review to find out what is already known about technologies used by working carers. The search included academic and grey literature published between January 2000 and June 2020. Sixteen relevant publications were analysed and discussed in the context of the broader discourse on work-care reconciliation. Technologies discussed can be classified as: (a) web- based technologies; (b) technologies for direct communication; (c) monitoring technologies; and (d) task-sharing tools. Technologies can help to make work-care reconciliation more manageable and alleviate psychosocial and emotional stress. General barriers to using technology include limited digital skills, depending on others to use technol-ogies, privacy and data protection, cost, limited technological capabilities, and limited awareness regarding available technologies. Barriers specific to some technologies include work disruptions, limited perceived usefulness, and lacking time and energy to use technologies. More research into technologies that can address the needs of working carers and how they are able to use them at work is needed.

Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.

O'Sullivan, Anna, Alvariza, Anette, Öhlen, Joakim, Håkanson, Cecilia (2018)

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

Family members' expressions of dignity in palliative care: a qualitative study

Anna Sandgren, Lena Axelsson, Tove Bylund-Grenklo, Eva Benzein (2020)

Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

Glöm allt men inte mig

Grandin Philomène (2021)

Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.

Trettio år senare sjunker Izzy allt djupare in i demens.

En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.

Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

Biliunaite Ieva, Kazlauskas Evaldas, Sanderman Robbert, Truskauskaite-Kuneviciene Inga (2021)

Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.

Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.

Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project

D’Amen Barbara, Socci Marco, Di Rosa Mirko, Casu Giulia, Boccaletti Licia, Hanson, Elizabeth, Santini Sara (2022)

Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

Planera framtiden – redan idag. Ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga

Anna Pella (2021)

Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.

Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.

På tal om ålder - Psykiskt välbefinnande – oavsett generation

MIND (2021)

Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.

The Family Model Slutrapport från en genomförbarhetsstudie med medarbetare inom barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård i Region Skåne, Region Halland och Region Västra Götaland

Gisela Priebe, Ann-Louise Danlarén, Maria Afzelius (2021)

Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.

The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective

O'Sullivan Anna, Alvariza Anette, Öhlén Joakim, Larsdotter Cecilia (2021)

OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare"

Aass, Lisbeth Kjelsrud (2021)

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.

Utvärdering av familjehelger – ett stöd till utlandsveteranfamiljer Invidzonen – Försvarsmakten

Eva Sennemark, Linnéa Aldman, Elizabeth Hanson (2021)

Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.

Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.

What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt (2021)

Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.

"Childlessness at the end of life: evidence from rural Wales."

Wenger, C. G. (2009)

ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.

"Man vill ju klara sig själv". Studievardagen för studenter med Asperger syndrom i högre utbildning

Simmeborn Fleischer A (2013)

Sedan början av 2000-talet har det skett en markant ökning av studier
gällande barn och ungdomar och Autism. Dock är det så att den mesta
forskningen fortfarande är inom det medicinska området. Endast ett
fåtal av studierna rör vuxna med Asperger syndrom (AS) som studerar
på högskola/universitet. Samtidigt sker en ökning av personer med AS
som söker högre utbildning såsom högskola/universitet, vilket gör
forskning gällande personer med diagnosen AS högaktuell. Antalet studenter
med kognitiva funktionshinder, dit AS räknas, som sökt pedagogiskt
stöd på högskola/universitet i Sverige, har ökat från 1 427 studenter
2010 till 1 943 studenter 2012. När man studerar på högskola/universitet
så finns det pedagogiska stöd att tillgå, och till vardagen
finns Lagen om stöd och service till vissa funktionshindrade (LSS) och
Socialtjänstlagen (SoL) som personer med AS har möjligheter att söka
stöd genom. Personer med AS kan ibland ha svårt att utnyttja stödsystem
som kräver att man själv identifierar och uttalar sina behov av stöd.
Denna avhandling fokuserar på personer med AS i högre utbildning och
stöd.
I doktorsavhandlingen ingår två studier: Studie I som är en fallstudie
och Studie II, som är en enkätstudie. Bindningspunkten för studierna är
studenter med AS som fått pedagogiskt stöd i sin utbildning vid högskola/universitet.

‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: The siblings' perspectives.

Moyson T, Roeyers H. (2012)

BACKGROUND:
The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling.
METHOD:
As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory.
RESULTS:
Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world.
CONCLUSIONS:
This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.

’Young Carers’ and Disabled Parents: time for a change of direction

Newman, T. (2002)

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.

”Hon är inte adhd, hon är min syster!” En kvalitativ studie om upplevelser av att växa upp med ett syskon med adhd. C-uppsats

Stephansson, Karin & Schelin, Robert (2008)

Författare: Karin Stephansson & Robert Schelin
Syfte: Att undersöka hur det kan vara att växa upp med en bror eller syster med diagnosen
adhd, hur livssituationen/syskonskapet hanterats, samt hur de har påverkats och hur det
eventuellt fortsätter att påverka dem i vuxenlivet. Syftet var även att undersöka syskonens
upplevelser och behov av socialt stöd under uppväxten.
Frågeställningar:
• Vilka upplevelser finns hos personer som vuxit upp med ett syskon med adhd?
• Hur upplever syskon att de har påverkats av att växa upp med en bror eller syster med
adhd?
• Hur har syskonskapet hanterats?
• I vilken utsträckning finns det behov av socialt stöd under uppväxten för syskon till
barn med adhd?
Metod: Studien är kvalitativ och bygger på intervjuer med åtta personer som vuxit upp med
ett eller flera syskon med diagnosen adhd. Intervjupersonerna består av både kvinnor och män
i åldrarna 17- 29 år.
Resultat: Resultatet visade att samtliga syskon upplevt att syskonrelationen och
familjesituationen innehållit mycket bråk som enligt intervjupersonerna var mer än vanligt
syskonbråk. Samtliga intervjupersoner ansåg att det fått ta ett stort ansvar under uppväxten.
Detta har upplevts som både positivt och negativt. Det har gjort dem ansvarsfulla men några
kände även att det lagts för mycket ansvar på dem och detta alldeles för tidigt i relation till
deras dåvarande ålder. Studien kunde påvisa en koppling mellan kommunikationen inom
familjen och upplevelsen av att ha vuxit upp med ett syskon med adhd. De intervjupersoner
som ansåg att kommunikationen inom familjen varit god och öppen beskrev upplevelser och
erfarenheter av syskonskapet som mer positivt än de intervjupersoner som ansåg att
kommunikationen inom familjen varit bristfällig.
Nyckelord: Attention Deficit/Hyperactivity Disorder (adhd), syskon, coping, socialt stöd,
systemteori

A Comprehensive Review and a Meta-Analysis of the Effectiveness of Internet-Based Psychotherapeutic Interventions

Barak, A., Hen, L., Boniel-Nissim, M., & Shapira. NA. (2008)

Internet-based psychotherapeutic interventions have been used for more than a decade, but no comprehensive review and no extensive meta-analysis of their effectiveness have been conducted. We have collected all of the empirical articles published up to March 2006 (n = 64) that examine the effectiveness of online therapy of different forms and performed a meta-analysis of all the studies reported in them (n = 92). These studies involved a total of 9,764 clients who were treated through various Internet-based psychological interventions for a variety of problems, whose effectiveness was assessed by different types of measures. The overall mean weighted effect size was found to be 0.53 (medium effect), which is quite similar to the average effect size of traditional, face-to-face therapy. Next, we examined interacting effects of various possible relevant moderators of the effects of online therapy, including type of therapy (self-help web-based therapy versus online communication-based etherapy), type of outcome measure, time of measurement of outcome (post-therapy or follow-up), type of problem treated, therapeutic approach, and communication modality, among others. A comparison between face-to-face and Internet intervention as reported on in 14 of the studies revealed no differences in effectiveness. The findings of this meta-analysis, and review of additional Internet therapy studies not included in the meta-analysis, provide strong support for the adoption of online psychological interventions as a legitimate therapeutic activity and suggest several insights in regard to its application. Limitations of the findings and recommendations concerning Internet-based therapy and future research are discussed.

A meta-analysis of parent training: Moderators and follow-up effects

Lundahl, B., Risser, H. J., & Lovejoy, C. M. (2006)

A meta-analysis of 63 peer-reviewed studies evaluated the ability of parent training programs to modify disruptive child behaviors and parental behavior and perceptions. This analysis extends previous work by directly comparing behavioral and nonbehavioral programs, evaluating follow-up effects, isolating dependent variables expressly targeted by parent training, and examining moderators. Effects immediately following treatment for behavioral and nonbehavioral programs were small to moderate. For nonbehavioral programs, insufficient studies precluded examining follow-up effects. For behavioral programs, follow-up effects were small in magnitude. Parent training was least effective for economically disadvantaged families; importantly, such families benefited significantly more from individually delivered parent training compared to group delivery. Including children in their own therapy, separate from parent training, did not enhance outcomes.

Combining informal care and work: supporting carers in the workplace

Arksey H. (2002)

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

Community participation patterns among preschool-aged children who have received Part C early intervention services

Khetani M, Graham JE, Alvord C. (2013)

Background

We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services.
Methods

Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities.
Results

Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2–3, 4–5, or 6–9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7–9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities.
Conclusion

Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young children's community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.

Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods

Hodgins, DC., & Shimp, L. (1995)

Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.

Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach

Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J. (2003)

Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.

Implementing child-focused family nursing into routine in adult psychiatric practice: Hindering factors evaluated by nurses

Korhonen T, Vehviläinen-Julkunen K, Pietilä A-M. (2008)

Keywords:
child;family nursing;family nursing interventions;psychiatric nursing
Aims and objectives.  The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.

Background.  There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.

Design and methods.  Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.

Results.  Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.

Conclusion.  To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.

Relevance to clinical practice.  The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.

Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.

Dawe S, Harnett PH, Rendalls V, Staiger P. (2003)

Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.

Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Dentinger E, Clarkberg M. (2002)

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

Inte bara Anna : asperger och stress

von Zeipel Elisabet, Alm Kerstin (2015)

Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.

Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.

Intentional communication acts expressed by children with severe disabilities in high-rate contexts

Bruce, S. M., & Vargas, C. (2007)

The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.

Interaction between adult patients’ family members and nursing staff on a hospital ward

Åstedt-Kurki, Päivi, Paavilainen, Eija, Tammentie, Tarja, Paunonen-Ilmonen, Marita (2001)

The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.

Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.

Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.

Interdisciplinary Studies of Childhood Ethics: Developing a New Field of Inquiry

Carnevale, F. A., Campbell, A., Collin-Vezina, D., & Macdonald, M. E. (2013)

The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.

Internet-based parent management training: A randomized controlled study

Enebrink, P., Högström, J., Forster, M., & Ghaderi, A. (2012)

OBJECTIVE:
The current study evaluated the efficacy of an Internet-based parent-training program for children with conduct problems. Dose-response ratio and costs for the program were also considered.
METHOD:
Parents of 104 children (aged 3-12 years) were randomly allocated to either parent training or a waitlist control condition. Diagnostic assessment was conducted at baseline and parent ratings of child externalizing behaviors and parent strategies were completed before and after treatment and at 6-month follow-up.
RESULTS:
At post-treatment assessment, children whose parent(s) had received the intervention showed a greater reduction in conduct problems compared to the waitlist children. Between group intent-to-treat effect sizes (Cohen's d) on the Eyberg Intensity and Problem scales were .42 and .72, respectively (study completers .66 and 1.08). In addition, parents in the intervention group reported less use of harsh and inconsistent discipline after the treatment, as well as more positive praise. Effects on behavior problems were maintained at 6-month follow-up.
CONCLUSIONS:
The results support the efficacy of parent training, administered through Internet, with outcomes comparable to many of the group-based parent training programs. The efficacy, low cost, and higher accessibility make this intervention a fitting part in a stepped-care model.

Interpersonal interactions and relationships (D710-D799).

Bailey SN, Lach LM, Byford-Richardson K. (2012)

Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice

Stover, C. S., Meadows, A. L., & Kaufman, J. (2009)

The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].

Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens

Vinnerljung B, Sallnäs M. (2008)

In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers

Sandberg, J., Eriksson, H., Holmgren, J., & Pringle, K. (2016)

The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.

De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.

Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?

Sloper, P., Greco, V., Beecham, J., & Webb, R. (2006)

Background  Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.

Methods  A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).

Results  The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.

Conclusions  Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.

Personlig assistans som yrke

Socialstyrelsen (2007)

Den övergripande handikappolitiska målsättningen är att främja jämlikhet i levnadsvillkor och full delaktighet i samhällslivet för människor med funktionshinder. Assistansreformen, som är en av denna handikappolitiks viktigaste åtgärder, har inneburit att en ny yrkeskategori vuxit fram – personliga assistenter. Det beräknas att ungefär 50 000 personer arbetar som personliga assistenter i Sverige. Inför framtiden uppskattas behovet öka till cirka 60 000.

Den här studiens syfte är att utifrån svensk forskning och annan empirisk kartläggning sammanställa och analysera de yrkesmässiga problem som personliga assistenter möter i sitt arbete. Häri ingår att kartlägga frågeställningar relaterade till de personliga assistenternas yrkesroll och identifiera områden som bör utvecklas. I rapporten återges studier av personliga assistenters arbetssituation och upplevelser av yrkesområdet. Aktuell lagstiftning refereras i förekommande fall i fotnot men då rapportens syfte inte är att återge denna eller andra regler kring området hänvisar författaren till andra källor för sakkunnig återgivning av dessa.

Många personliga assistenter berättar om arbetsglädje, givande samvaro med den assistansanvändare de bistår, variationsrika arbetsdagar och om upplevelser av ett viktigt och meningsfullt arbete. Den särskilda arbetssituationen som ofta inbegriper en arbetsplats i brukarens hem, en nära och intim samvaro samt insyn i privata relationer innebär dock att yrkesrollen innehåller en rad potentiella svårigheter. Samtidigt som många vittnar om tillfredsställelse med arbetet som personlig assistent har yrket låg status, en låg lönebild, betraktas som ett genomgångsyrke och omfattas av rekryteringsproblem. Det sistnämnda har även påverkat vilka områden som forskningen främst berört. Vidare förekommer det sällan en uppdelning på olika anordnare utan kooperativ, kommunala och privata anordnare beskrivs gemensamt.

I myndighetsrapporter och forskningssammanställningar framträder tydligt att personlig assistans är ett bristyrke såväl som ett genomgångsarbete. Vid en granskning av anställningsförhållanden, anställningstrygghet, tjänstgöringsgrad, arbetstider och lön framträder brister som ger upphov till oro bland de personliga assistenterna samt innebär en osäker anställningssituation. De personliga assistenterna uppfattar ibland en oklar ansvarsuppdelning mellan arbetsgivare och arbetsledning, vilket kan innebära utsatthet och ett svagt stöd i arbetssituationen. Studier av arbetslednings-/chefsuppgifter som introduktion, arbetsbeskrivning, utvecklingssamtal, handledning, fortbildning, personalmöten och kvalitetsarbete visar att de personliga assistenternas arbetsförhållanden skiljer sig markant åt. Här framkommer att det hos många assistansanordnare finns anledning till organisatoriska förbättringar.

Arbetsmiljöverket har bedrivit en relativt omfattande arbetsmiljötillsyn riktad gentemot assistansanordnare. Genom att arbetsområdet är nytt har det funnits oklarheter om ansvar och arbetsformer, framförallt till följd av att arbetsplatsen i många fall är förlagd till assistansanvändarens hem. I många fall saknas rutiner för ett fungerande arbetsmiljöarbete. Det handlar om systematisk information, riskinventering, uppföljning etc. Genom de inspektioner som genomförts inom vissa distrikt har information och förtydliganden kunnat spridas vilket påverkat arbetsmiljöarbetet och arbetsmiljön på ett positivt sätt.

Förutom de organisatoriska bristerna kan arbetsmiljöproblemen hänföras dels till risker för fysisk skada till följd av tunga lyft och belastning, dels till psykosociala arbetsmiljörisker till följd av exempelvis oklara arbetsbeskrivningar, kommunikationsproblem eller oklarheter i kontakten med assistansanvändare eller anhöriga samt otillräckligt arbetsledarstöd. Särskilt framstår de personliga assistenternas ensamarbete, utan kontakt med kollegor, som ett av de största arbetsmiljöproblemen. Detta kan kombineras med att assistenter upplever hot och våld i sitt arbete samt att assistansanvändarnas livsstil kan orsaka konkreta arbetsmiljöproblem för den personliga assistenten. Det framgår i ett flertal studier av personlig assistans att assistenterna uppfattar sitt yrke som betydelsefullt. Här innefattas en tillfredställelse med att medverka till att förbättra livssituationen för assistansanvändaren samt att det är en privilegierad arbetssituation att kunna ägna sig åt en person, utan kraven att på kort tid behöva räcka till för många personers hjälpbehov.

Just arbetet med en enskild person kan dock även innebära nackdelar ur ett arbetstillfredsställelseperspektiv. Det kan upplevas som påfrestande att umgås intensivt med en person hur väl man än kommer överrens. Många assistenter upplever även att en stor del av arbetet innebär väntan och passivitet vilket kan vara nog så påfrestande. En nära relation kan innebära svårigheter att skilja mellan arbete och fritid och mellan yrkesroll och privatliv. Vidare är det inte ovanligt att assistansanvändarens funktionshinder innebär en försämring över tid och det är känslomässigt svårt att se hur en person man kommit nära försämras.

I en analys skildras vad forskning och andra empiriska kartläggningar belyst avseende den personliga assistentens relationer till olika personer och grupper som man möter i sin yrkesutövning. I fokus är i första hand relationen till assistansanvändaren, vilket innefattar diskussion kring arbetsuppgifter, fördelning av arbetet och arbetsbeskrivning. Det framgår att för den personliga assistenten kan det vara av stor vikt att arbetsuppgifterna är tydligt klargjorda då assistenterna annars kan uppfatta sig som utnyttjade. Vidare skildras asymmetrin i förhållandet mellan assistansanvändare och assistent, där det i flera studier framgår att brukaren är beroende av sin assistent men att även assistenten befinner sig i ett sårbart läge genom assistansanvändarens arbetsledning och självbestämmande över av vem, hur och när assistansen ska utföras.

För många assistenter ingår även motivationsarbete i arbetsuppgifterna. Att arbeta för en assistansanvändare med begränsad autonomi kan vara en utmaning. Assistenterna ställs inför uppgiften att styra brukaren och samtidigt balansera detta gentemot rätten till självbestämmande. Det framgår i studierna att det kan vara frustrerande när assistansanvändarens preferenser är skilda från assistentens. Här framträder även att assistenterna upplever svårigheter med att hantera de krav som ställs på sjukgymnastik och aktiviteter från anhöriga eller andra yrkesgrupper när dessa förväntningar går emot assistansanvändarens vilja.

Ett särskilt stycke tar upp anhörigassistentens situation. Här belyser studierna att funktionen som assistent till en nära anhörig innebär en särskild assistansroll. Många anhörigassistenter upplever sig inte heller som i första hand personliga assistenter. Förutom att arbetsbördan ofta är stor och går utöver den egentliga arbetstiden känner dessa assistenter såväl tillfredsställelse med att kunna bistå som omgivningens misstro och en oro inför framtiden. I övrigt behandlas assistentens relation till assistansanvändarens familj, assistans till barn, relationen till anhöriga, mellan assistenter, till arbetsgivare, till god man, andra yrkeskategorier och till allmänheten. Det framgår av forskning, myndighetsrapporter och citat från intervjuer med personliga assistenter att yrkesrollen personlig assistent har låg status. Allmänhetens bild, säger en assistent, är att vem som helst kan arbeta som personlig assistent. De låga formella kraven på utbildning, efterfrågan på assistenter, lönen, ryktet om att assistansarbetet är ett tillfälligt genomgångsarbete och arbetets karaktär med personlig omvårdnad och hemarbete förstärker bilden. Beskrivningarna av den personliga assistenten som brukarens armar och ben, redskap, en tyst skugga som smälter in i tapeten etc. bidrar också till en negativ yrkesbild i en tid då framåtanda, självständighet och initiativförmåga premieras och betraktas som eftersträvansvärda egenskaper inom arbetslivet i övrigt.

I rapportens avslutande kapitel sammanfattas de i forskningsstudierna och övriga empiriska kartläggningar identifierade utvecklingsområdena inom personlig assistans som yrke. Utan inbördes ordning är det som här lyfts fram otrygghet i anställningen, ensamarbete, lön, osäkerhet vad gäller arbetsuppgifter, arbetsmiljö, arbetsgivaransvar och arbetsledning, svårigheter att hålla isär yrkesutövande och privatliv, tjänstgöringsgrad, fortbildning, yrkesstatus samt yrkesidentitet.

Avslutningsvis diskuteras utbildning för personliga assistenter, en eventuell profilering samt kunskapsuppbyggnad som områden som bör utvecklas. Utbildning till personlig assistent är en omtvistad frågeställning. Då det bedrivs ett antal utbildningar på gymnasienivå, som arbetsmarknadsutbildning, vid folkhögskolor och som uppdragsutbildning vid universitet finns det all anledning att närmare granska detta område. I den fortsatta diskussionen om relevant utbildning för personliga assistenter borde dessa utbildningar inventeras och utvärderas. Dessutom föreslås att en eventuell profilering av assistansyrket ska övervägas utifrån dels den kompetenshöjning det innebär samt att detta skulle öppna upp för utvecklingsmöjligheter inom yrket. Slutligen konstateras att det finns en begränsad vetenskaplig kunskapsproduktion kring personlig assistans. Utifrån det stora antal personer som berörs som assistansanvändare, anhöriga och personliga assistenter är detta anmärkningsvärt och otillfredsställande.

Personlig assistent som yrke

Socialstyrelsen (2007)

I denna rapport analyseras de yrkesmässiga problem som personliga assistenter möter i sitt arbete utifrån befintlig svensk forskning och annan empirisk kartläggning.

Personlig assistent: en rättighet, ett yrke.

Dehlin, Ann-Marie (1997)

Boken består av tre delar där del I beskriver Historik - Lagar kring personlig assistans. Del II tar upp den personliga assistentens arbetssituation och beskriver hur det kan vara att arbeta som personlig assistent. Sista delen speglar brukarens situation, beskriver hur det kan upplevas att ta emot personlig assistans, arbetsgivaransvar samt hjälpmedelsberoende och hjälpmedelsansvar.

Boken kan användas i utbildning av personliga assistenter som ett diskussionsunderlag i utbildningssituationer för assistenter eller handläggare av assistans. Olika teman kan tas upp på personalmöten med brukare och assistenter, för att öka förståelsen för ett ömsesidigt arbete. Anhöriga till brukare eller brukaren själv kan få tips att tänka på inför uppläggning av assistans. En ökad förståelse för familjer och handikappade personers livssituation är också en avsikt med boken.

Denna bok kan överhuvudtaget användas som ett stöd för dem som på något sätt i sitt privatliv, arbete, studier eller yrkesutövande kommer i kontakt med personer som är berättigade till, eller arbetar som personlig assistent.

Perspektiv på en skola för alla.

Brodin J, Lindstrand P. (2010)

Perspektiv på en skola för alla
Frågan om en skola för alla eller inkluderande undervisning väcker många känslor och tankar. Vad betyder egentligen en skola för alla och hur förhåller vi oss till den? Är inklusion bara ett politiskt, socialt och ideologiskt mål eller betyder det någonting mer? I denna reviderade upplaga presenterar författarna nya forskningsrön om inkludering.

Pharmacotherapy for parents with attention-deficit hyperactivity disorder (ADHD): Impact on maternal ADHD and parenting

Chronis-Tuscano, A., & Stein, M. A. (2012)

Given the high heritability of the disorder, attention-deficit hyperactivity disorder (ADHD) is common among parents of children with ADHD. Parental ADHD is associated with maladaptive parenting, negative parent-child interaction patterns and a diminished response to behavioural parent training. We describe our previous research demonstrating that stimulant medications for mothers with ADHD are associated with reductions in maternal ADHD symptoms. Although limited beneficial effects on self-reported parenting were also found in our study, the impact of ADHD medications on functional outcomes related to parenting and family interactions may not be sufficient for many families. Many questions remain with regard to how best to treat multiplex ADHD families in which a parent and child have ADHD. In particular, future studies are needed: (1) to evaluate how best to sequence pharmacotherapy, psychosocial treatment for adult ADHD and behavioural parenting interventions; (2) to determine the best approach to maintaining treatment effects over the long term for both parents and children; and (3) to identify individual predictors of treatment response.

Phase I evaluation of the television assisted prompting system to increase completion of home exercises among stroke survivors

Lemoncello R, Sohlberg MM, Fickas S, Albin R, Harn BE. (2011)

PURPOSE. Effective delivery of dysphagia exercises requires intensive repetition, yet many brain injury survivors demonstrate difficulty adhering to home programmes. The Television Assisted Prompting (TAP) system provides a novel method to deliver intensive in-home therapy prompts. Specific research questions compared the effectiveness of the TAP system to typical practice on programme adherence, satisfaction and caregiver burden. METHOD. A within-participant alternating treatment design with random assignment of treatment condition compared exercise programme adherence across TAP and typical practice delivery conditions, replicated across three participants. Data included quantitative programme completion rates, satisfaction survey reports and caregiver burden questionnaire results, as well as qualitative interview findings. RESULTS. A large treatment effect was demonstrated for two participants; exercise programme completion rates increased by 6-17 times typical practice levels with the TAP system. TAP supported sustained practice over the course of the experiment for the third participant despite minimal differences between conditions. Participants reported high satisfaction and endorsed the TAP system. There was no significant change in caregiver burden. CONCLUSION. The TAP system provided a novel assistive tool to support home programme completion of intensive exercise regimens for clients with cognitive impairment and care providers with significant burden. Future research must ensure continued development of a reliable and intuitive system.

Physiology and neurobiology of stress and adaptation: central role of the brain

McEwan, B.S. (2007)

The brain is the key organ of the response to stress because it determines what is threatening and, therefore, potentially stressful, as well as the physiological and behavioral responses which can be either adaptive or damaging. Stress involves two-way communication between the brain and the cardiovascular, immune, and other systems via neural and endocrine mechanisms. Beyond the "flight-or-fight" response to acute stress, there are events in daily life that produce a type of chronic stress and lead over time to wear and tear on the body ("allostatic load"). Yet, hormones associated with stress protect the body in the short-run and promote adaptation ("allostasis"). The brain is a target of stress, and the hippocampus was the first brain region, besides the hypothalamus, to be recognized as a target of glucocorticoids. Stress and stress hormones produce both adaptive and maladaptive effects on this brain region throughout the life course. Early life events influence life-long patterns of emotionality and stress responsiveness and alter the rate of brain and body aging. The hippocampus, amygdala, and prefrontal cortex undergo stress-induced structural remodeling, which alters behavioral and physiological responses. As an adjunct to pharmaceutical therapy, social and behavioral interventions such as regular physical activity and social support reduce the chronic stress burden and benefit brain and body health and resilience.

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pilot evaluation of a group therapy program for children bereaved by suicide

Daigle, M.S., & Labelle, R. J. (2012)

Abstract
BACKGROUND:
Thousands of children are bereaved each year by suicide, yet there exists very little literature specifically on the psychological care, programs, and interventions available to help them.
AIMS:
(1) To build and validate theoretical models for the Group Therapy Program for Children Bereaved by Suicide (PCBS); (2) to test these models in a preliminary evaluation.
METHODS:
In the first part, we built theoretical models, which were then validated by scientists and clinicians. In the second part, the sessions of the PCBS were observed and rated. The participating children were tested pre- and postprogram.
RESULTS:
Positive changes were observed in the participating children in terms of basic safety, realistic understanding and useful knowledge, inappropriate behaviors, physical and psychological symptoms, child-parent and child-child communication, capacity for social and affective reinvestment, actualization of new models of self and the world, self-esteem, awareness and use of tools, cognitive, verbal, written and drawing abilities, cognitive dissonance, ambivalence, antagonism, and isolation.
CONCLUSIONS:
The changes reported in the bereaved children show that the PCBS has some efficacy.

Nere för räkning, eller ... : om livet med ett svårt sjukt barn

Jansson Eva (2011)

Den här boken handlar om en familj med ett svårt hjärnskadat barn och två friska småsyskon. Boken beskriver deras nioåriga resa. Vi får följa och lära oss om en liten men viktig grupp barn, känna ilska och sorg men också mycket hopp, glädje och stolthet. Vi följer familjens vardag i motgång och medgång. Kampen för en så bra vård som möjligt och ett innehållsrikt liv för den svårt hjärnskadade dottern. Vi får ta del av syskonens och föräldrarnas känslor och får en inblick i hur det är att leva med assistenter i hemmet under dygnets alla timmar. Boken berör många områden och det märks att författaren har fått möta mycket under åren.
Läs och upplev hur någonting som från början ser mycket mörkt ut blir allt ljusare. En stark och engagerande bok med fokus på möjligheter.

Neuropsychological assessment (4th ed.).

Lezak, M. D. (2004)

Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:

The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation

Newborns with impairment: Discourses of Hospital Staff

Vehkakoski, Tanja (2007)

The birth of a baby with an impairment goes against dominant cultural ideals about a happy event. Therefore, the interaction between professionals and parents is particularly important, from the hospital maternity ward to the home. In this article, the author examines both the representations of neonatal impairments constructed by professionals and the consequent subject positions for these babies with impairments. The study is based on interview data collected among 19 staff members of one Finnish county hospital. The author analyzed the data by means of qualitative discourse analysis and concludes that it would be important for health care professionals to provide many-sided elements for parents to consider in the construction of the image of their baby other than traditional tragically and negatively biased cultural interpretations.

Next of kin’s conceptions of the quality of care in psychiatric setting: A phenomenographic study

Schröder, Agneta, Wilde-Larsson, Bodil & Ahlström, Gerd (2007)

The next of kin play a decisive role in the care provided for patients. This and their unique experience of psychiatric care make it important to include them when defining quality of care. The aim of the present study was to describe how next of kin perceive the concept of quality of care in the case of psychiatric care. Twelve next of kin were included in a qualitative interview study and a phenomenographic approach was used for the analysis of the interviews. The next of kin described quality of care mainly from their own perspective but also to a large extent from the patient's perspective as well. Five descriptive categories resulted: dignity, security, participation, recovery, and health-promoting surroundings. Good relations and communication between staff, patients, and next of kin emerged as the central factors regarding the quality of psychiatric care. The next of kin asked for information about psychiatric illnesses and wanted to cooperate in the care. They avoid telling others about their family member's psychiatric illness because of a feeling of shame and guilt. Staff education regarding such feelings and stigmatization could be useful in furthering the understanding of the next of kin's distress and developing interventions to alleviate it. Clinical practice can be improved by guidelines and instruments developed on the basis of this study.

Challenges and Recommendations for the Developments of Information and Communication Technology Solutions for Informal Caregivers

Alhassan Yosri, Ibrahim Hassan (2020)

Abstract
Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.

Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.

Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.

Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.

Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

Challenges in conceptualizing social support

Vangelisti, L. Anita (2009)

Although research on social support has generated findings that are key to the study of social and personal relationships, scholars have yet to deal with a number of conceptual issues that affect how social support is defined and measured. Research on hurt feelings provides some interesting insights concerning the conceptualization of support. Based on this research, as well as a review of the literature on social support, the current article describes several issues that scholars ought to consider as they conceptualize, evaluate, and study social support processes.

Challenges of combining work and unpaid care, and solutions: A scoping review

Spann A, Vicente J, Allard C, Hawley M, Spreeuwenberg M, de Witte L (2019)

Abstract
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discusse

Challenging Childhoods: Young people’s accounts of ‘getting by’ in families with substance use problems

Backett-Milburn, K., Wilson, S., Bancroft. A., & Cunningham-Burley, S. (2008)

Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to 'get by' in their challenging childhoods, showing how the protective factors thought to promote 'resilience' were seldom in place for them unconditionally and without associated costs.

Characteristics of Drug-Abusing Women With Children in Residential Treatment: A Preliminary Evaluation of Program Retention and Treatment Completion.

Simons L. (2008)

An ex post facto study was conducted to investigate treatment outcomes for 80 women and 168 children admitted into a residential substance-abuse treatment program. The results indicated childhood emotional neglect is a barrier for remaining in and completing treatment for African-American women with comorbid psychological disorders but not for those with crack cocaine dependent disorders. African-American women with comorbid psychological disorders were also three times more likely to dropout of treatment. In addition, there were relatively few differences for between drug-exposed and nonexposed children. However, the results indicated that children of substance-abusing women who completed treatment were more likely to have behavioral problems, to receive early intervention services, and to have mothers as legal guardians by the end of treatment. Implications for gender-specific interventions for African-American women and their children in residential treatment are discussed.

Child witnesses to domestic violence: A meta-analytic review

Kitzmann, K. M., Gaylord, N. K., Holt, A. R., & Kenny, E. D. (2003)

This meta-analysis examined 118 studies of the psychosocial outcomes of children exposed to interparental violence. Correlational studies showed a significant association between exposure and child problems (d = -0.29). Group comparison studies showed that witnesses had significantly worse outcomes relative to nonwitnesses (d = -0.40) and children from verbally aggressive homes (d = -0.28). but witnesses' outcomes were not significantly different from those of physically abused children (d = 0.15) or physically abused witnesses (d = 0.13). Several methodological variables moderated these results. Similar effects were found across a range of outcomes, with slight evidence for greater risk among preschoolers. Recommendations for future research are made, taking into account practical and theoretical issues in this area.

Childhood bereavement and peer support: epidemiology, identification of evaluation constructs, and the promotion of resilience

Hulsey, E.G. (2009)

Akad. Avh.

The death of a close family member is a profound insult to a child's developmental course. Though early research assumed that childhood bereavement was a risk factor for mental and behavioral disorders in childhood and adult life, recent research has taken an ecological view of childhood development and considers a child's exposures to risk and protective factors. Yet, it remains unclear as to how many children are affected by the death of a close family member each year and how peer support groups can help children to adapt to such an adverse event. This dissertation represents three distinct stages in the development of a comprehensive evaluation for an agency that provides a peer support service for bereaved children and their families. First, a primary question that arose during initial consultations with the agency was to determine how many children are affected annually within Pennsylvania. This led to an exploration of the epidemiology of childhood bereavement. The methods and data sources used to produce these estimates were critically evaluated and modified to offer a new interpretation of available data. Second, it was important to identify constructs that could be used in an outcomes evaluation of the peer support program. Focus groups were used to explore the perceived benefits of attending peer support groups among caregivers and teens who had attended a spring session at the center. The intention to use focus groups was to increase the validity of constructs and, ultimately, the results of an outcomes evaluation.Third, after identifying evaluation constructs a feasibility study was conducted to pilot an outcomes evaluation instrument. The study involved 30 families who attended the spring 2007 sessions at the center. Results suggested that peer support programs can improve children's coping efficacy while helping to improve their caregivers' perception of social support. The program also improved both children and caregivers' sense that they are not alone in their grief.As demonstrated in this dissertation, including the loss of siblings and primary caregiving grandparents in prevalence estimates of childhood bereavement and applying resilience theory to peer support research is of public health relevance.

Childhood bereavement services: issues in UK service provision

Rolls, L. & Payne, S. (2004)

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole.

Childhood poverty and social exclusion. From a child´s perspective

Ridge, T. (2002)

Childhood poverty has moved from the periphery to the centre of the policy agenda following New Labour's pledge to end it within twenty years. However, whether the needs and concerns of poor children themselves are being addressed is open to question. The findings raise critical issues for both policy and practice - in particular the finding that children are at great risk of experiencing exclusion within school. School has been a major target in the drive towards reducing child poverty. However, the policy focus has been mainly about literacy standards and exclusion from school. This book shows that poor children are suffering from insufficient access to the economic and material resources necessary for adequate social participation and academic parity.Childhood poverty and social exclusion will be an invaluable teaching aid across a range of academic courses, including social policy, sociology, social work and childhood studies. All those who are interested in developing a more inclusive social and policy framework for understanding childhood issues from a child-centred perspective, including child welfare practitioners and policy makers, will want to read this book.Studies in poverty, inequality and social exclusion seriesSeries Editor: David Gordon, Director, Townsend Centre for International Poverty Research.Poverty, inequality and social exclusion remain the most fundamental problems that humanity faces in the 21st century. This exciting series, published in association with the Townsend Centre for International Poverty Research at the University of Bristol, aims to make cutting-edge poverty related research more widely available. For other titles in this series, please follow the series link from the main catalogue page.

Childhood socio-economic status, school failure and drug abuse: a Swedish national cohort study

Gauffin K, Vinnerljung B, Fridell M, Hesse M, Hjern A. (2013)

AIM: To investigate whether socio-economic status (SES) in childhood and school failure at 15 years of age predict illicit drug abuse in youth and young adulthood. DESIGN, SETTING AND PARTICIPANTS: Register study in a Swedish national cohort born 1973-88 (n = 1,405,763), followed from age 16 to 20-35 years. Cox regression analyses were used to calculate hazard ratios (HR) for any indication of drug abuse. MEASUREMENTS: Our outcomes were hospital admissions, death and criminality associated with illicit drug abuse. Data on socio-demographics, school grades and parental psychosocial problems were collected from censuses (1985 and 1990) and national registers. School failure was defined as having mean school grades from the final year in primary school lower than -1 standard deviation and/or no grades in core subjects. FINDINGS: School failure was a strong predictor of illicit drug abuse with an HR of 5.87 (95% CI: 5.76-5.99) after adjustment for age and sex. Childhood SES was associated with illicit drug abuse later in life in a stepwise manner. The lowest stratum had a HR of 2.28 (95% CI: 2.20-2.37) compared with the highest stratum as the reference, when adjusted for other socio-demographic variables. In the fully adjusted model, the effect of SES was greatly attenuated to an HR of 1.23 (95% CI: 1.19-1.28) in the lowest SES category, while the effect of school failure remained high with an HR of 4.22 (95% CI: 4.13-4.31). CONCLUSIONS: School failure and childhood socio-economic status predict illicit drug abuse independently in youth and young adults in Sweden.

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of Depressed Mothers 1 Year After the Initiation of Maternal Treatment: Findings From the STAR*D-Child Study

Pilowsky D, Wickramaratne P, Talati A, Tang M, Hughes C, Garber J, et al. (2008)

Objective: Maternal depression is a consistent and well-replicated risk factor for child psychopathology. The authors examined the changes in psychiatric symptoms and global functioning in children of depressed women 1 year following the initiation of treatment for maternal major depressive disorder. Method: Participants were 1) 151 women with maternal major depression who were enrolled in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and 2) their eligible offspring who, along with the mother, participated in the child STAR*D (STAR*D-Child) study (mother-child pairs: N=151). The STAR*D study was a multisite study designed to determine the comparative effectiveness and acceptability of various treatment options for adult outpatients with nonpsychotic major depressive disorder. The STAR*D-Child study examined children of depressed women at baseline and involved periodic follow-ups for 1 year after the initiation of treatment for maternal major depressive disorder to ascertain the following data: 1) whether changes in children's psychiatric symptoms were associated with changes in the severity of maternal depression and 2) whether outcomes differed among the offspring of women who did and did not remit (mother-child pairs with follow-up data: N=123). Children's psychiatric symptoms in the STAR*D-Child study were assessed using the Schedule for Affective Disorders and Schizophrenia for School-Age Children—Present and Lifetime Version (K-SADS-PL), and maternal depression severity in the STAR*D study was assessed by an independent clinician, using the 17-item Hamilton Depression Rating Scale (HAM-D). Results: During the year following the initiation of treatment, maternal depression severity and children's psychiatric symptoms continued to decrease over time. Decreases in the number of children's psychiatric symptoms were significantly associated with decreases in maternal depression severity. When children's outcomes were examined separately, a statistically significant decrease in symptoms was evident in the offspring of women who remitted early (i.e., within the first 3 months after the initiation of treatment for maternal depression) or late (i.e., over the 1-year follow-up interval) but not in the offspring of nonremitting women. Conclusions: Continued efforts to treat maternal depression until remission is achieved are associated with decreased psychiatric symptoms and improved functioning in the offspring.

Children of Mothers with Intellectual Disability: Stigma, Mother-Child Relationship and Self-esteem

Perkins, TS., Holburn, S., Deaux, K., Flory, MJ., & Vietze. PM. (2002)

Background  We investigated mother–child relationships and self-esteem of typical children of mothers with intellectual disability.

Methods  Eighteen girls and 18 boys from various ethnic groups were administered questionnaires to assess: (a) attachment style; (b) caregiver style; (c) perception of maternal stigma; and (d) self-esteem. The children were also asked to list the identities or roles that they play in life.

Results  Results suggested that: (a) the relationship between the child's perception of stigma and attachment to the mother is mediated by the warmth of the mother's caregiving style; and (b) if the child has an avoidant or anxious/ambivalent attachment to the mother, self-esteem tends to be lower. Furthermore, multiple identities contribute to positive self-esteem among these children.

Conclusions  Results are discussed in relation to the model presented and the consistency of the findings with attachment theory.

Children of Mothers with Serious Substance Abuse Problems: An Accumulation of Risks.

Conners NA, Bradley RH, Mansell LW, Liu JY, Roberts TJ, Burgdorf K, et al. (2003)

This study examines the life circumstances and experiences of 4084 children affected by maternal addiction to alcohol or other drugs. The paper will address the characteristics of their caregivers, the multiple risk factors faced by these children, their health and development, and their school performance. Data were collected from mothers at intake into 50 publicly funded residential substance abuse treatment programs for pregnant and parenting women. Findings from this study suggest that children whose mothers abuse alcohol or other drugs confront a high level of risk and are at increased vulnerability for physical, academic, and social-emotional problems. Children affected by maternal addiction are in need of long-term supportive services.

Children of parents with intellectual disability: Facing poor outcomes or faring okay?

Collings, S., & Llewellyn, G. (2012)

Background Children of parents with intellectual disability are assumed to be at risk of poor outcomes but a comprehensive review of the literature has not previously been undertaken.
Method A database and reference search from March 2010 to March 2011 resulted in 26 studies for review.
Results Two groups of studies were identified. The first investigated an association between parental intellectual disability and child outcomes where there was significant disadvantage. Some findings suggest low parental intellectual capacity can negatively impact child outcomes, but others indicate child development approaches population norms. A second, small group of studies explored narrative accounts of childhood to find that social exclusion, bullying, and stigma are commonplace. Removal from parental care emerged as a significant risk for this group of children.
Conclusions Studies focusing on child development represent 85% of the literature but reach no consensus about likely developmental or behavioural outcomes. Children studied usually come from clinical populations or other high-risk groups, and are typically young children.

Children with medical complexity: an emerging population for clinical and research initiatives

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011)

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Children´s perceptions of parental multiple sclerosis

Cross, T., & Rintell, D. (1999)

Semi-structured interviews were conducted with 7-to-14-year-old children of parents with multiple sclerosis (MS; N = 21) to examine children's perceptions of MS, and a content analysis was conducted. Children observed visible and 'invisible' symptoms and affective distress. Few children had information about the physiological process of MS. The most frequent categories of causal beliefs were fate or chance, contagion and congenital/hereditary factors. Many children mentioned their own or other people's behaviour as influences on the course of MS. No children believed that parents' MS would get worse. Children need developmentally appropriate information, reassurance about their effect on parents and their own risk of contracting MS, and discussion of the stress on the family. The study suggests the value of psycho-educational intervention for many families with MS.

Children’s adjustment to parental death

Tremblay, G.C. & Israel, A.C. (1998)

Keywords:
parental death;childhood grieving;bereavement intervention
This article reviews the evidence regarding the effects of parental death on children's acute and long-term psychological adjustment, as well as the clinical literature describing interventions for bereaved families. The risk of adjustment difficulties for bereaved children has shown no consistent relation to complications of grieving, but is instead largely accounted for by an increased probability of inadequate care following the loss of a parent. The literature describing interventions for bereaved families offers little formal evaluation, and reflects our incomplete understanding of children's grief responses, and thus of appropriate treatment goals. Further research should focus on more molecular analysis of grief processes, including grief-related interactions between children and parents, and should take into account developmental variation in children's needs and experiences. The use of multiple informants of child and parent behavior is strongly recommended, and the unique contributions of longitudinal research in understanding children's adjustment to loss are highlighted.

Children’s experiences of information, advice and support from healthcare professionals when their parent has a cancer disease - experiences from an oncological outpatient department

Marie Golsäter,Susanne Knutsson, Karin Enskär (2021)

Purpose: This study was carried out in order to evaluate children's experiences after taking part in the pilot clinical intervention "See Me" aimed at supporting children as relatives.
Method: A qualitative explorative design with interviews was chosen, with analyses using an inductive approach. Interviews were conducted with 19 children (9 aged 7–12 years and 10 aged 13–18 years). The younger children were asked to draw a picture of a person in hospital, using the Child Drawing: hospital (CD:H) instrument to measure the child's level of anxiety. The older children completed the Caring Professional Scale (CPS) as a measure of the caring approach in their encounter with the nurse.
Results: The interviews with the children show that: they felt expected and welcomed at the hospital; they needed knowledge about their parent's situation; they needed information and participation based on their individual situation; and they needed the nurse to offer them information and support. The results from the pictures showed that one child had above-average levels of anxiety. The older children reported that the nurses were Competent Practitioners, but to a lesser degree that they were Compassionate Healers. Conclusions: The results of this pilot study indicate that the structure of "See Me" could be used as a starting point to ensure that children as relatives receive information, advice, and support. Further the results indicate that both CD:H and CPS could be used to evaluated children's experiences of support when a parent has a long-term illness.

Children’s experiences of parental mental illness: a literature review

Gladstone, B. M., Boydell, K. M., Seeman, M. V., & Mckeever, Patricia, D. (2011)

Abstract
AIM:
This paper provides a review of published qualitative research on children's experiences of parental mental illness.
METHODS:
We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers.
RESULTS:
Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience--the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness.
CONCLUSIONS:
Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike.

Children’s voices – Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation

Nilsson S, Björkman B, Almqvist A-L, Almqvist L, Björk-Willén P, Donohue D, et al. (2013)

Objective: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated.
Methods: Conceptual paper based on narrative review.
Results: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions.
Conclusion: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.

Children's adjustment to a parent's stroke: determinants of health status and psychological problems, and the role of support from the rehabilitation team

Visser-Meily A, Post M, Meijer AM, Maas C, Ketelaar M, Lindeman E. (2005)

OBJECTIVE: To investigate the support given to young children of patients with stroke by rehabilitation teams and to identify characteristics of the patients, spouses and children that relate to children's adjustment 2 months after the patient's discharge. SUBJECTS AND METHODS: Seventy-seven children (< or =18 years of age) of patients with stroke consecutively admitted to inpatient rehabilitation were included. Adjustment was measured with the Child Behaviour Check List, Child Depression Inventory and Functional Status II. Multilevel regression analyses were conducted to identify determinants of adjustment. RESULTS: Half of the children received some form of support from a rehabilitation team. Receiving more support was related to more severe disability of the parent with stroke, but not to the child's health or behavioural problems at the start of the stroke victim's inpatient stay. At the start of rehabilitation, 54% of the children had subclinical or clinical problems. Children's adjustment 2 months after their parent's discharge was related to the strain on spouses and not to the patients' characteristics or those of the support. CONCLUSION: The children's adjustment was related to the strain perceived by the healthy parent. There is a need for support that focuses on the experience of children of patients with stroke, regardless of stroke severity.

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

Abstract
PURPOSE:
This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Children's loneliness: A comparison of rejected and neglected peer status.

Asher SR, Wheeler VA. (1985)

Recent research indicates that a considerable number of children report extreme feelings of loneliness and that unpopular children are more lonely than popular children. In the present study, we assessed feelings of loneliness of two subgroups of unpopular children, those who were sociometrically rejected versus those who were sociometrically neglected. Data on popular, average, and controversial children were also collected. Results from 200 third- through sixth-grade children indicated that rejected children were the most lonely group and that this group differed significantly from other status groups. Neglected children did not differ from higher status peers. Overall, the results provide added evidence of the utility of the distinction between neglected versus rejected status and provide support for earlier conclusions that rejected children are more at risk than are other status groups.

Children's perceptions and experiences of care giving: A focus group study

Earley, L., Cushway, D. & Cassidy, T. (2007)

The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.

Children's perceptions and experiences of care giving: A focus group study (PDF Download Available). Available from: https://www.researchgate.net/publication/232937648_Children's_perceptions_and_experiences_of_care_giving_A_focus_group_study [accessed Nov 15 2017].

Choice and preference assessment research with people with severe to profound developmental disabilities: A review of the literature

Caltenco, H., Larsen, H. S., & Hedvall, P. O. (2005)

Since the last major empirical review on choice interventions and preference assessments among people with severe to profound developmental disabilities (Lancioni, O'Reilly, & Emerson, 1996) the body of research in this area has grown extensively. This paper reviews thirty studies carried out between 1996 and 2002 that have been sorted into four categories. These categories are (a) building choice opportunities into daily contexts; (b) assessing the effects of choice making on various parameters of behavior; (c) assessing preferences; and (d) assessing the effectiveness of various preference assessment formats. The main findings in these studies were that choice interventions led to decreases in inappropriate behavior and increases in appropriate behavior, and that various preference assessments could be used to identify reinforcing stimuli. The findings are discussed in relation to technical and practical rehabilitation questions. Potential issues for future research are also examined.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson