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Informell och formell vård hos äldre personer i ordinärt boende – förändringar och samspel över tid 2001-2015 i SNAC projektet

Anders Wimo, Ron Handels, Sölve Elmståhl, Cecilia Fagerström, Laura Fratiglioni, Ulrika Isaksson, Ole Larsen, Johan Sanmartin Berglund, Britt-Marie Sjölund, Anders Sköldunger, Maria Wahlberg (2020)

Anhöriga och andra närståendes informella insatser utgör en stor del av de samlade insatserna hos äldre personer. Resultat från olika undersökningar tyder på att de närståendes insatser är 2-3 gånger så omfattande som den formella vården och omsorgen i det ordinära boendet (i Sverige i huvudsak som hemtjänst) och hos demenssjuka personer är de närståendes insatser än mer omfattande.
Från SNAC projektet har tidigare en vetenskaplig artikel publicerats som analyserar s k baslinjedata från perioden 2001-2003. Förutom att bekräfta att de närståendes insatser är mycket mer omfattande än hemtjänstens, så visades också att det finns risk att felskatta omfattningen om inte befolkningsbaserade data (t ex SNAC) används. Resultatet visade också att närståendes insatser till personer med demenssjukdom också var mer omfattande jämfört med ej demenssjuka.

Socialdepartementet gav SNAC i uppdrag att följa upp resultatet från den studien och
analysera tidstrender i samspelet mellan informell och formell vård hos personer äldre än 80 år i ordinärt boende, med eller utan kognitiv funktionsnedsättning, i SNAC-projektet, något som resulterat i denna rapport.

Informing children of their parent's illness: A systematic review of intervention programs with child outcomes in all health care settings globally from inception to 2019

Charlotte Oja, Tobias Edbom, Anna Nager, Jörgen Månsson, Solvig Ekblad (2020)

Abstract
Introduction: Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found helpful in the interventions aimed at informing children of their parent's illness.

Methods: This review was registered with PROSPERO and conducted in accordance with PRISMA guidelines. Five health and social science databases were searched from inception to November 2019 to identify original, peer-reviewed articles in English describing effective interventions. The authors selected and reviewed the studies independently, and any inconsistencies were resolved by discussion in face-to-face meetings and emails. A descriptive synthesis of evidence-based concepts from quantitative and qualitative studies was conducted.

Results: A total of 13 892 titles and 144 full-text articles were reviewed with 32 selected for final inclusion, 21 quantitative, 11 qualitative and no mixed-method studies published from 1993 to November 2019. Most of the research was conducted in mental health, including substance abuse (n = 22), but also in cancer care (n = 6) and HIV care (n = 4). Most studies using quantitative method showed a small to moderately positive statistically significant intervention effect on the child's level of internalized symptoms. Content analysis of the results of studies employing qualitative methodology resulted in four concepts important to both children and parents in interventions (increased knowledge, more open communication, new coping strategies and changed feelings) and three additional concepts important to parents (observed changes in their children's behavior, the parent's increased understanding of their own child and the relief of respite).

Conclusions: In the literature there is evidence of mild to moderate positive effects on the child's level of internalized symptoms as well as concepts important to children and parent's worth noting when trying to bridge the still existing knowledge gaps. In further efforts the challenges of implementation as well as adaptation to differing clinical and personal situations appear key to address.

Infoteket om funktionshinder

LUL (2012)

Infoteket om funktionshinder är till för dig som har en funktionsnedsättning, är anhörig eller arbetar med barn, ungdomar eller vuxna med funktionsnedsättningar i skola eller annan verksamhet.

På Infoteket kan du läsa och låna aktuell litteratur, filmer, söka information på webben, tala med experter och lyssna på föreläsningar. Här finns lästips och faktablad inom olika diagnoser och funktionsnedsättningar att hämta.

Infrared-based communication augmentation system for people with multiple disabilities

Chen SC, Tang FT, Chen YL, Chen WL, Li YC, Shih YY, et al. (2004)

Purpose: This study describes an eyeglass-type infrared-based communication board for the nonspeaking with quadriplegia. Method: This system is composed of four major components: a headset, an infrared transmitting module, an infrared receiving/signal-processing module, and a main controller, the Intel-8951 microprocessor. This design concept was based on the use of an infrared remote module fastened to the eyeglasses which could allow the convenient control of the input motion on the keys of a communication board, which are all modified with infrared receiving/signal-processing modules. For system evaluation, 12 subjects (all men, 21-45 years old, six normal subjects as the control group and six nonspeaking with quadriplegia as the experimental group) were recruited. Results: The average accuracy of the control group and the experimental group were 93.1 ± 4.3% and 89.7 ± 5.5%, respectively. The average time cost of the control group and the experimental group were 78.3 ± 8.7 s and 89.9 ± 10.2 s, respectively. An independent t-test revealed that the differences in the average accuracy and the average time cost of the control group and the experimental group were not significant (p > 0.05). Conclusions: The increase of opportunity to communicate using the infrared-based communication board would help people with multiple disabilities to socialize actively. © 2004 Taylor & Francis Ltd.

In-home online support for caregivers of survivors of stroke: a feasibility study.

Pierce LL, Steiner V, Govoni AL (2002)

The primary aim of this feasibility study was to determine if caregivers (n = 5) were willing and able to use Caring-Web, a Web-based intervention for support, from their home Internet connection for 3 months. The caregivers' perceived health and satisfaction with caring, as well as the care recipients' use of healthcare services, were recorded. The experience of caring (problems and successes) was examined. Data were collected via weekly online surveys and e-mail discussions. Descriptive analyses revealed that the 3 caregivers who completed the study were satisfied with Caring-Web. Caregivers rated their health as average to excellent and their satisfaction with caring as good. Care recipients averaged 6 calls/visits to a medical office with one emergency room visit and subsequent hospitalization. Major problems for the caregivers included dealing with medical conditions about which they lacked knowledge. Content analysis of the e-mail discussions revealed that subjects sought information about medical conditions related to caring for the survivor of the stroke. Major successes for the caregivers involved communicating effectively with the care recipient and returning to everyday life with family and friends.

Inifrån utanförskapet. Om att vara annorlunda och delaktig

Gustavsson, Anders (2001)

Den här boken handlar om förutsättningarna för delaktighet och integration av människor som uppfattas som annorlunda eller avvikande. Författaren försöker vända på det traditionella synsättet att det är "vi" som integrerar "dem". För att istället låta de berörda själva komma till tals. En viktig erfarenhet från den undersökningen som boken bygger på är i grund och botten att våra möjligheter att förstå integrationen kräver att vi tar reda på hur den uppfattas av dem det gäller.
Huvudpersonerna är vad man brukar kalla lindrigt utvecklingsstörda. De tillhör "den första integreringsgenerationen". De har växt upp under den tid som integrering och normalisering varit den officiella handikappolitiken i Sverige. Boken handlar om hur vardagstillvaron gestaltar sig för dem. De berättar om ett utanförskap som vi känner igen från andra likartade situationer. Samtidigt uppvisar de personer som boken handlar om också en anmärkningsvärd tilltro till sin rätt att vara delaktiga i alla livssammanhang. Deras tilltro tycks bland annat bygga på ett stöd som de fått från andra med likartade erfarenheter och perspektiv på intellektuella

Initial Findings on Preventive Intervention for Families with Parental Affective Disorders

Beardslee, W.R., Hoke, L., Wheelock, I., Rothberg, P.C., van de Velde, P., & Swatling, S. (1992)

Abstract
OBJECTIVE:
The purpose of this study was to develop a clinician-based cognitive, psychoeducational, preventive intervention for families with parental affective disorder that would be suitable to widespread use, test its feasibility and safety, and define the areas affected by the intervention. The intervention was designed to increase understanding of parental illness and resilience in the children.
METHOD:
The authors studied the first seven families (14 parents) to receive the intervention. Enrollment criteria included affective disorder during the preceding year in at least one parent, presence of at least one child between the ages of 8 and 14 years who was not psychiatrically ill at the time of participation, and willingness to participate in the research study. The intervention consisted of parent, child, and family sessions. Assessment included semistructured interviews with parents about affective disorders, standard ratings of marital satisfaction and therapeutic alliance, and a recently developed semistructured interview to assess response to the intervention.
RESULTS:
Overall satisfaction with the intervention was rated moderate to high by parents. No harm was reported. Ten of 14 parent subjects reported five or more behavior and attitude changes that they attributed to the intervention. The most frequent behavior and attitudinal changes reported were increased discussion of the illness and related issues and increased understanding of information about affective illness.
CONCLUSIONS:
The authors conclude that the intervention is safe and feasible in families with parental affective disorder.

Inledning till: 2008 Standards for bereavement Care in the UK, Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Översättning: Grimby, A. Johansson, Å K.

Grimby, A., & Johansson, Å. K. (2009)

De nationella, grundläggande riktlinjerna för sörjandestöd i U.K.
Behovet
Förlust av en nära anhörig är oftast den mest förödande upplevelsen i ens liv. Även om
tillvaron aldrig mer blir sig lik, finner de flesta ett sätt att anpassa sig till förlusten. Det är
normalt och naturligt att sörja. För vissa människor blir det emellertid alltför svårt eller
traumatiskt utan extra stöd.
Vid sådana tillfällen, när människor är som mest sårbara, kan organisationer med
välutvecklat och utbildat sörjandestöd erbjuda en rad lämpliga och professionella
stödformer. För första gången i U.K. finns nu en uppsättning riksomfattande, godkända
riktlinjer eller normer som garanterar att detta stöd är tryggt, lämpligt och etiskt.
Riktlinjerna och Principerna
Riktlinjerna för sörjandestöd (The Bereavement Care Standards) i detta dokument är
under ständig bearbetning. De är generellt formulerade och inte några föreskrifter. De
behöver anpassas till individuella behov och omständigheter samt tillgång till lokala
stödmöjligheter. Nyckeln till användningen av riktlinjerna utgörs av etiska principer (The
set of Ethical Principles) som kan användas universellt, oavsett om stödet är riktat till en
enskild individ eller en grupp. Dessa principer hjälper till att ange kvaliteten på det
sörjandestöd som erbjuds.
Riktlinjerna och Principerna avser att:
• Ge ett nationellt erkännande för det ovärderliga stöd som tillhandahålls av redan
befintliga sörjandestödsgrupper.
• Stärka förtroendet bland användare och finansiärer genom att sörjandestödet
arbetar efter en nationell standard.
Riktlinjer för sörjandestödet från "UK Council" (Rådet i U.K.)
Denna organisation upprättades för att föra arbetet med Riktlinjerna framåt. Riktlinjerna
är inte huggna i sten för att gälla för all framtid; därför kommer Rådet att svara för att de
ständigt revideras i takt med att nya erfarenheter görs.
Medlemskap i Rådet kommer från
• de fyra organisationerna i "The National Bereavement Consortium"
• enskilda och serviceorganisationer från hela U.K.
• personer med uttalat intresse för sörjandestöd i U.K.
En viktig utgångspunkt är att alla medlemmar i Rådet skriver under på de etiska
principerna.

Innan man vet

Elisabet O Klint (2020)

"Jag drömmer om att jag pratar för oss båda och vi lyssnar tillsammans på det jag berättar. Då ser jag honom le, skratta och gestikulera för att visa sina känslor. Hade jag kunnat göra honom lyckligare, gladare och tryggare? Eller, var han kanske lycklig, och inom sig tacksam, att jag fanns där hela tiden? Vilka av hans handlingar var egentligen hans, och vilka var ett resultat av sjukdom?"

Innan man vet är en finstämd skildring av en kvinnas dilemma i kärlek och i sorg. I denna självbiografiska berättelse får vi följa Elisabet O Klint genom dagboksanteckningar som gestaltar livet såsom det tedde sig. I hopp om att förstå, och förbättra. Gripande åskådliggör hon den livssituation som uppstod när hennes man drabbades av ALS och frontallobsdemens, två livshotande sjukdomar utan botemedel.

Insatser för personer med psykiska funktionsnedsättningar. Kommunernas användning av stimulansbidragen 2007-2010

Socialstyrelsen (2011)

Rättstillämpningen
Den nya vårdformen som trädde i kraft den 1 september 2008 tycks fungera bättre för rättspsykiatrins patienter än för patienter inom den psykiatriska tvångsvården. Patienter inom rättspsykiatrin har längre vårdtider och får insatser som är mer anpassade efter individuella behov. Förutsättningarna för att slussa ut personer till öppen rättspsykiatrisk vård är på så sätt bättre jämfört med dem som förs över till öppen psykiatrisk tvångsvård. De sistnämnda patienterna har i regel kortare vårdtid än fyra veckor och behandlas för en psykiatrisk diagnos i ett akut skede. Behandlingsinsatserna innebär oftast att symtom medicineras.

Chefsöverläkare och annan personal verksamma inom sluten psykiatrisk tvångsvård har relativt kort tid på sig för att bedöma vad som är adekvata insatser för en patient som ska föras över till öppen psykiatrisk tvångsvård och för att upprätta en samordnad vårdplan. I nästan hälften av de fall när patienter överförts till öppen psykiatrisk tvångsvård har kommunerna saknat kännedom om detta. Det beror i regel på att chefsöverläkaren bedömt att patienterna enbart behövt insatser från landstinget med krav på medicinering och regelbunden kontakt med den öppna psykiatriska mottagningen. Någon med kommunen samordnad vårdplan har då inte upprättats. Socialstyrelsen avser att uppmärksamma den sittande Psykiatriutredningen (S2008:98) på de brister i lagstiftningens tillämpning som myndigheten sett när det gäller öppen psykiatrisk tvångsvård.

Otillräcklig kunskap om effekten för den enskilde
En uppföljning av det slag som nu gjorts ger föga kunskap om vårdformens effekter för den enskilde, dvs. om den motsvarar den enskildes förväntningar och bidrar till ökad livskvalitet. Återkommande uppföljningar om hur människor med psykiska funktionsnedsättningar bor och om de har meningsfull sysselsättning saknas. Det saknas också undersökningar om hur de anser sig bemötta inom såväl vård och omsorg som samhället i övrigt tillhandahåller. Socialstyrelsen anser att bättre och mer ingående kunskap om livssituationen för personer med psykiska funktionsnedsättningar förutsätter en intensifierad metodutveckling för att ta fram, bearbeta och analysera data om socialtjänstens effekter för klienter.

Statsbidraget och kommunernas arbete
Socialstyrelsen har under åren 2007 - 2010 förmedlat sammanlagt 520 miljoner kronor i statsbidrag till kommunerna för att stimulera dem att förbättra sina sociala insatser för de personer med psykisk funktionsnedsättning som vårdas i öppen tvångsvård.

Förändringsarbete tar tid att förankra och genomföra om effekten ska bli varaktig. Detta framgår av det material Socialstyrelsen haft tillgång till under arbetet med uppföljningen. Kommunerna har också olika förutsättningar att använda statsbidraget för de ändamål för vilka det är avsett. Det handlar t.ex. om kommunernas kännedom om vilka insatser som fungerar och som motsvarar de enskildas behov och vilka förbättringsområden som bör prioriteras och som det finns beredskap för.

Mål och måluppfyllelse
Regeringen har satt upp fem mål för statsbidraget.

Mål 1.
Det ska finnas effektiva och formaliserade strukturer för samarbete mellan kommun och landsting kring personer som varit föremål för åtgärder inom den psykiatriska tvångsvården.

Sedan januari 2010 då bestämmelsen om att kommunen ska ingå formaliserade, övergripande överenskommelser med landstinget om samarbete i fråga om personer med psykisk funktionsnedsättning har över hälften av kommunerna träffat sådana överenskommelser med respektive landsting. Socialstyrelsen anser att samverkan mellan kommuner och landsting utvecklas positivt och bedömer att mål 1 har goda förutsättningar att uppnås när det gäller formaliserade och övergripande strukturer för samarbete. Men för att målet ska vara uppnått ska samverkansstrukturerna också vara effektiva. Kommuner och landsting behöver fortsätta arbetet med gemensamma policydokument, avtal och överenskommelser.

Mål 2.
Det ska finnas kunskap om de behov personer med psykisk funktionsnedsättning har så att utbyggnaden av verksamheter ges förutsättningar att motsvara målgruppens behov av stödinsatser.

Ett fåtal kommuner har inventerat målgruppen och dess behov på ett heltäckande sätt. De flesta kommuner och stadsdelar har på ett tidigt stadium undersökt hur många personer som kan förväntas bli föremål för den nya vårdformen. Det är emellertid betydligt fler personer som förts över till öppen vårdform än vad kommunerna känt till. Socialstyrelsen anser att kommuner i samverkan med respektive landsting kontinuerligt behöver inventera målgruppen och dess behov av stödinsatser för att mål 2 ska uppnås.

Mål 3.
Det ska finnas ett varierat utbud av flexibla och individanpassade lösningar (t.ex. boende och sysselsättning) som kan tillgodose behovet för de personer som får den nya vårdformen.

Kommuner och stadsdelar har uppmärksammat i allt högre grad boende och sysselsättningsområdet. I vilken utsträckning målet om flexibla och individanpassade lösningar är uppfyllt är svårt att bedöma. I vilken mån mål 3 uppnås får bedömas utifrån alla de satsningar som gjorts och görs inom psykiatriområdet.

Mål 4.
Personalen ska ha tillgång till relevant vägledning, handledning och fortbildning

Kommunerna har i hög grad satsat på kompetensutveckling för att utveckla sina arbetsmetoder och för att kunna tillgodose enskildas behov på ett professionellt sätt. Socialstyrelsen bedömer att mål 4 har goda förutsättningar att uppnås.

Mål 5.
Återintagningar ska inte bero på att kommunerna har otillräckliga stödinsatser

Mål 5 är problematiskt att följa upp då det oftast är flera, och ofta komplexa orsaker som ligger till grund för återintagningar. Kommuner och landsting är också i vissa avseenden oeniga om både hur bestämmelserna om överföring till öppen psykiatrisk tvångsvård ska tolkas och när återintagningar ska ske. Socialstyrelsen anser att det är svårt att bedöma om återintagningarna endast är en följd av kommunernas bristande sociala insatser. Det är oftast flera aktörer inblandade, förutom kommunen, öppenvårdsmottagningar, sjukvårdsinrättning och den enskilde samt i vissa fall också beroendemottagningar.

Insatser mot psykiska problem hos barn och ungdomar. Statens offentliga utredningar

SOU 1998:31 (1998)

Utredningen har anlagt ett folkhälsoperspektiv på barns och ungdomars psykiska hälsa. En grundläggande funktion för varje samhälle är att skapa gynnsamma förhållanden för det uppväxande släktet. Föräldrarna ansvarar för att barnet får sina behov av omvårdnad, trygghet och god fostran tillgodosedda. Samhällets stöd och vård skall komplettera föräldrarnas insatser, och ske i samspel med dem. Vi konstaterar att insatser utvecklas. Vi fokuserar två generella verksamheter som har stor betydelse och potential i folkhälsoarbetet: mödra- och barnhälsovården samt skolans elevvård.

Insatser till barn och unga som lever i familjer med missbruks- eller beroendeproblem: en kunskapsöversikt

Rehnman, Jenny & Andrée Löfholm, Cecilia (2009)

Resultatet visar att det för närvarande inte finns något tillförlitligt underlag för insatser till barn och unga med föräldrar som har missbruksproblem. När det gäller insatser till barn och unga med föräldrar som har någon psykisk funktionsnedsättning saknas också vetenskapligt stöd för att uttala sig om hur effektiva insatserna är. Det finns dock en utvärdering som bedöms ha medelgod tillförlitlighet, och den gäller insatsen Beardslees familjeintervention som är riktad till familjer där någon av föräldrarna har en depression. Utvärderingen av Beardslees familjeintervention visade att insatsen inte var mer effektiv än den föreläsningsinsats som den jämfördes med.

Effekterna av familjeinterventionen eller föreläsningsinsatsen har emellertid inte satts i relation till en icke-insats (placebo eller väntelista) eller någon annan insats som kan antas vara standardbehandling, och därför går det för närvarade inte att uttala sig om insatsens effektivitet.

Resultatet från översikten ska inte tolkas som att det inte finns några insatser som är verksamma och som kan ge stöd till barn och unga som lever i familjer med missbruksproblem eller med förälder som har en psykisk funktionsnedsättning. Problemet är att det i dagsläget inte går att värdera om de insatser som förekommer har en positiv effekt. Därför behövs både svenska utvärderingar och lokala uppföljningar av de befintliga insatserna genomföras.

Insatser år 2010 för vuxna personer med missbruks- och beroendeproblem och för övriga vuxna

Socialstyrelsen (2011)

I denna rapport redovisas statistik över socialtjänstens insatser för vuxna med missbruks- och beroendeproblem samt övriga vuxna år 2010. Statistiken är en del av Sveriges officiella statistik (SOS). Den innehåller uppgifter om de insatser som är individuellt behovsprövade och som beslutats enligt socialtjänstlagen (2001:453), i fortsättningen förkortad SoL, eller lagen om vård av missbrukare i vissa fall (1988:870), i fortsättningen förkortad LVM. De insatser socialtjänsten ger utan biståndsbeslut ingår inte.

Vuxna med missbruks- och beroendeproblem

Som vuxna räknas i denna statistik huvudsakligen personer som är 21 år eller äldre. I statistiken redovisas de personer som den 1 november eller någon gång under år 2010 hade något beslut om insatser enligt SoL och LVM på grund av problem med sitt missbruk av alkohol, narkotika, läkemedel eller lösningsmedel.

Av de vuxna personer med missbruks- och beroendeproblem som hade pågående insatser den 1 november 2010 hade knappt 6 200 personer bistånd som avser boende (samma nivå som 2009) och cirka 11 700 personer individuellt behovsprövade öppna insatser (även det på ungefär samma nivå som år 2009).
Knappt 2 900 personer hade insatser inom heldygnsvård den 1 november 2010, vilket var en ökning med 8 procent jämfört med antalet den 1 november 2009. Av dessa personer vårdades 90 procent på frivillig grund.
Antalet personer med frivillig institutionsvård (enligt SoL) den 1 november 2010 var 8 procent fler i jämförelse med föregående år, medan antalet som har vårdats i familjehem (enligt SoL och LVM) minskade med 2 procent.
Antalet tvångsvårdade personer på institution (enligt LVM) den 1 november 2010 uppgick till 285, vilket innebär att antalet tvångsvårdade har ökat med 18 procent jämfört med året innan.
Ungefär 23 procent av de vuxna med missbruks- och beroendeproblem som mottog bistånd som avser boende den 1 november 2010 var kvinnor. Inom de individuellt behovsprövade öppna insatserna var andelen kvinnor drygt 30 procent och inom heldygnsvården drygt 25 procent. Andelen kvinnor som tvångsvårdades enligt LVM den 1 november 2010 var 36 procent.

Övriga vuxna

Gruppen övriga vuxna definierar Socialstyrelsen som personer 21 år eller äldre med problem som inte är relaterade till eget missbruk av alkohol, narkotika, läkemedel, lösningsmedel eller kombinationer av dessa. I denna statistik redovisas till exempel de insatser som ges enligt SoL på grund av spelmissbruk, hemlöshet, behov av stöd i föräldrarollen samt på grund av en anhörigs missbruk och insatser riktade till att hjälpa våldsoffer.

Den 1 november 2010 fick drygt 9 200 personer av kategorin övriga vuxna bistånd som avsåg boende, vilket är cirka 5 procent fler än 1 november 2009.
Cirka 6 900 personer fick individuellt behovsprövade öppna insatser den 1 november 2010, vilket innebär en ökning med 2 procent i jämförelse med 1 november 2009.
Antalet som vistades frivilligt på någon institution den 1 november 2010 uppgick till 330 personer. Antalet har inte förändrats sedan 2009.
81 personer hade beslut om familjehemsvård den 1 november 2010, även det på samma nivå som 2009.

Integrated programs for mothers with substance abuse issues and their children: A systematic review of studies reporting on child outcomes

Niccols A, Milligan K, Smith A, Sword W, Thabane L, Henderson J. (2012)

BACKGROUND:
Integrated treatment programs (those that include on-site pregnancy-, parenting-, or child-related services with addiction services) were developed to break the intergenerational cycle of addiction, potential child maltreatment, and poor outcomes for children.
OBJECTIVES:
To examine the impact and effects of integrated programs for women with substance abuse issues and their children, we performed a systematic review of studies published from 1990 to 2011.
METHODS:
Literature search strategies included online bibliographic database searches, checking printed sources, and requests to researchers. Studies were included if all participants were mothers with substance abuse problems at baseline; the treatment program included at least 1 specific substance use treatment and at least 1 parenting or child treatment service; the study design was randomized, quasi-experimental, or cohort; and there were quantitative data on child outcomes. We summarized data on child development, growth, and emotional and behavioral outcomes.
RESULTS:
Thirteen studies (2 randomized trials, 3 quasi-experimental studies, 8 cohort studies; N=775 children) were included in the review. Most studies using pre-post design indicated improvements in child development (with small to large effects, ds=0.007-1.132) and emotional and behavioral functioning (with most available effect sizes being large, ds=0.652-1.132). Comparison group studies revealed higher scores for infants of women in integrated programs than those not in treatment, with regard to development and most growth parameters (length, weight, and head circumference; with all available effect sizes being large, ds=1.16-2.48). In studies comparing integrated to non-integrated programs, most improvements in emotional and behavioral functioning favored integrated programs and, where available, most effect sizes indicated that this advantage was small (ds=0.22-0.45).
CONCLUSIONS:
Available evidence supports integrated programs, as findings suggest that they are associated with improvements in child development, growth, and emotional and behavioral functioning. More research is required comparing integrated to non-integrated programs. This review highlights the need for improved methodology, study quality, and reporting to improve our understanding of how best to meet the needs of children of women with substance abuse issues.

Integrated programs for mothers with substance abuse issues and their children: A systematic review of studies reporting on child outcomes.

Niccols A, Milligan K, Smith A, Sword W, Thabane L, Henderson J. (2012)

BACKGROUND:
Integrated treatment programs (those that include on-site pregnancy-, parenting-, or child-related services with addiction services) were developed to break the intergenerational cycle of addiction, potential child maltreatment, and poor outcomes for children.
OBJECTIVES:
To examine the impact and effects of integrated programs for women with substance abuse issues and their children, we performed a systematic review of studies published from 1990 to 2011.
METHODS:
Literature search strategies included online bibliographic database searches, checking printed sources, and requests to researchers. Studies were included if all participants were mothers with substance abuse problems at baseline; the treatment program included at least 1 specific substance use treatment and at least 1 parenting or child treatment service; the study design was randomized, quasi-experimental, or cohort; and there were quantitative data on child outcomes. We summarized data on child development, growth, and emotional and behavioral outcomes.
RESULTS:
Thirteen studies (2 randomized trials, 3 quasi-experimental studies, 8 cohort studies; N=775 children) were included in the review. Most studies using pre-post design indicated improvements in child development (with small to large effects, ds=0.007-1.132) and emotional and behavioral functioning (with most available effect sizes being large, ds=0.652-1.132). Comparison group studies revealed higher scores for infants of women in integrated programs than those not in treatment, with regard to development and most growth parameters (length, weight, and head circumference; with all available effect sizes being large, ds=1.16-2.48). In studies comparing integrated to non-integrated programs, most improvements in emotional and behavioral functioning favored integrated programs and, where available, most effect sizes indicated that this advantage was small (ds=0.22-0.45).
CONCLUSIONS:
Available evidence supports integrated programs, as findings suggest that they are associated with improvements in child development, growth, and emotional and behavioral functioning. More research is required comparing integrated to non-integrated programs. This review highlights the need for improved methodology, study quality, and reporting to improve our understanding of how best to meet the needs of children of women with substance abuse issues.

Integrating Family Caregivers into Palliative Oncology Care Using the Self- and Family Management Approach

Schulman-Green D., Feder S. (2018)

Integrating Family Caregivers into Palliative Oncology Care Using the Self- and
Family Management Approach. Schulman-Green D, Feder S.
OBJECTIVE: To describe the integration of family caregivers into palliative
oncology care using the Self- and Family Management Framework.
DATA SOURCES: Peer-reviewed journal articles.
CONCLUSION: The role of family caregivers in palliative oncology includes
focusing on illness needs, activating resources, and living with cancer. Several
factors may serve as facilitators of or barriers to these activities. A growing
number of interventions support family caregivers' involvement in palliative
oncology care.
IMPLICATIONS FOR NURSING PRACTICE: Nurses should identify who the family
caregiver is, confirm ability and willingness, discuss patients' and family
caregivers' goals for cancer care, activate resources, and promote ongoing
communication to support changing needs.

Intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Controlled clinical trial with follow-up assessment six months after discharge.

Gräsel E, Biehler J, Schmidt R, Schupp W. (2005)

OBJECTIVE:
An intensified transition concept between neurological inpatient rehabilitation and home care was investigated for effects on the functional status of stroke patients and the physical and emotional health of their carers.
DESIGN:
Controlled clinical trial allocating patients to intervention group (intensified transition on ward II) or control group (standard transition on ward I); patients were allocated to whichever ward had a vacancy. Follow-up assessment was carried out six months after discharge.
SUBJECTS:
Seventy-one patients and their family carers were included, of which nine cases dropped out. Therefore 62 stroke patients with persisting disability and their family carers were available for assessment at follow-up--33 patients in the intervention group, 29 patients in the control group.
INTERVENTION:
The intensified transition concept consisted of therapeutic weekend care, bedside teaching and structured information for relatives during the second phase of the rehabilitation.
MAIN MEASURES:
Patients were assessed with the Barthel Index, Functional Independence Measure, Ashworth Spastic Scale, Frenchay Arm Test, and Timed Up and Go Test. The carers completed SF-36, and were assessed using the Giessen Symptom List, Depression Scale and Burden Scale for Family Caregivers.
RESULTS:
The intensified transition did not lead to significant change in the functional status of the patients or in the physical and emotional health of the family carers. Within the first four weeks after discharge, the patients in the intervention group had fewer new illnesses. In the observation period the use of outpatient care services was more frequent in the intervention group than in the control group.
CONCLUSION:
Even though there are few differences of moderate intensity between the two groups the intensified transition programme does not affect either the functional status of the stroke patients or the health of the carers.

Intensivvårdsdagbok i Sverige: betydelse och tillämpning

Johansson Maria (2019)

Avhandling

Syfte
Avhandlingens övergripande syfte är att undersöka hur intensivvårdsdagboken upplevs av närstående och vårdpersonal inom intensivvård samt att bidra till utvecklingen av nationella riktlinjer avseende dagbokens utformning, innehåll och tillämpning.
Delsyften
I Att undersöka hur närstående upplever en intensivvårdsdagbok, när en
sjuk familjemedlem vårdas på IVA.
II Att undersöka hur närstående upplever en intensivvårdsdagbok, när den
sjuke familjemedlemmen inte överlever vistelsen på IVA.
III Att undersöka hur vårdpersonalen upplever användandet av
intensivvårdsdagbok.
IV Att undersöka tillämpningen av intensivvårdsdagbok på olika
intensivvårdsavdelningar i Sverige samt bidra till riktlinjer när det gäller
dagbokens utformning, innehåll och användning.

Abstract [en]
Aim: The overall aim of the thesis was to explore how the Intensive Care Unit (ICU) diary was experienced by family members, family members of non-survivors and nursing staff in the ICU setting, thereby contributing to the development of national clinical practice guidelines regarding the structure, content and use of the ICU diary.
Methods: A qualitative design was employed for all four studies: a hermeneutic approach was adopted in studies I and II, whilst a qualitative descriptive design with the use of focus groups interviews was chosen in study III. An Instrumental Multiple Case Study design was carried out in study IV.
Main Findings: The diary symbolised the maintenance of relationships with the patients and was a substitute for the usual opportunities for communication. The diary was instrumental in meeting the needs of the majority of participant family members. The diary provided the means to be present at the patient's bedside, to feel involved in caregiving, to maintain hope and to relay relevant information. If the critically ill family member did not survive the stay in the ICU, the diary acted as a form of bereavement support by processing the death of the patient. Nevertheless, some family members found the diary too public an arena to write in as the diary entries indicated visiting patterns which in turn provoke feelings of guilt when the visits were infrequent. Further, not knowing what to write was another source of pressure.
Nursing staff experienced that writing diaries often felt meaningful and led to an increased motivation and engagement in patient care and family support. They expressed that they felt they did something good for the patient and family members. Thus, the diary can be seen as a way to promote person-centred care, where family members were offered to participate in the care. However, in the absence of guidelines or clear guidelines about the use of an ICU diary, then not many patients actually received a diary.
Conclusions: Practice guidelines concerning ICU diaries would help to ensure the more widespread and consistent use of diaries for all ICU patients. As family members may benefit from the diary, even if the patient may not always be able to do so. The ICU diary can be seen as a tool to help promote person-centred care by directly involving family members and providing a human touch, thus helping to counterbalance the highly technical physical environment of ICU.

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 the teacher and the congenitally deafblind child

Vervloed MPJ, Van Dijk RJM, Knoors H, Van Dijk JPM. (2006)

EMPIRICAL DATA on the development of interaction, communication, and language in deafblind children is very rare. To fill this gap, a case study was conducted in which the interaction between a teacher and a deafblind boy age 3 years 4 months was analyzed. Sequential analysis of their interaction confirmed some general clinical impressions about interaction with deafblind children, and provided the basis for suggestions on how the interaction pattern might be changed.

Interaction, inclusion and students with profound and multiple disabilities: Towards an agenda for research and practice

Arthur-Kelly M, Foreman P, Bennett D, Pascoe S. (2008)

The needs of students with profound and multiple disabilities (PMD) have received more attention in the educational research and best practice literature over the past decade, especially in relation to the importance of maximising their social and communicative engagement. However, perhaps as a function of their low incidence rate and resultant difficulties in obtaining research funding, there appears to be little in the way of a coherent vision for research in the international literature. In this paper we argue the need for a systematic programme of research into the nature of learning processes and outcomes for members of this group. Several issues emerge from a review of selected literature and from some recent observational data and descriptive case studies collected in special and inclusive classrooms. First, there is the importance of identifying ways of better understanding the complex experiences of members of this population, with particular attention to the ongoing contribution of behaviour state assessment as a means of measuring individual alertness and responsiveness. We argue that improved uptake of this approach will do much to advance our knowledge of life quality for this population and assist in more fully evaluating the effectiveness of educational interventions. Second, we explore the potential of social and communicative engagement in a variety of settings as a means of enhancing learning and participation in this group. We suggest that interpersonal variables are the key to improvements in educational support for this vulnerable group. Potential directions in research and practice are explored. © 2008 The Authors.

Intergenerational transmission of dating aggression as a function of witnessing only same sex parents vs. opposite sex parents vs. both parents as perpetrators of domestic violence

Jankowski M. K., Leitenberg, H., Henning, K., & Coffey, P. (1999)

The present study examined the association between witnessing interparental violence as a child, and the risk for perpetrating and being the victim of dating aggression as an adult, in an undergraduate sample. Specifically, this study tested a modeling hypothesis whereby witnessing a same sex parent vs. an opposite sex parent exclusively in the aggressor role would be more highly associated with risk for perpetrating dating aggression. Similarly, observing a same sex parent vs. an opposite sex parent as exclusively a victim of marital aggression would be associated with risk for being a victim of dating aggression. A same sex modeling effect was found for perpetration of dating aggression. Respondents who witnessed only their same sex parent perpetrate physical marital aggression were at increased risk for perpetrating physical dating aggression, whereas respondents who witnessed only their opposite sex parent perpetrate were not. A same sex modeling effect, however, was not found for being a victim of dating aggression. Rather, risk for victimization by dating aggression was associated only with witnessing bidirectional marital violence. Implications of these results, limitations of the present study, and ideas for future research are discussed.

International Classification of Functioning, Disability and Health

WHO (2001)

The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. As the functioning and disability of an individual occurs in a context, ICF also includes a list of environmental factors.

ICF is the WHO framework for measuring health and disability at both individual and population levels. ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on 22 May 2001(resolution WHA 54.21) as the international standard to describe and measure health and disability.

Since 2001, ICF has been demonstrating a broader, more modern view of the concepts of "health" and "disability" through the acknowledgement that every human being may experience some degree of disability in their life through a change in health or in environment. Disability is a universal human experience, sometimes permanent, sometimes transient. It is not something restricted to a small part of the population.

ICF focuses on impact. This creates a foundation and a common framework allowing all conditions to be compared using a common metric - the impact on the functioning of the individual.

Furthermore, ICF looks beyond the idea of a purely medical or biological conceptualization of dysfunction, taking into account the other critical aspects of disability. This allows for the impact of the environment and other contextual factors on the functioning of an individual or a population to be considered, analyzed, and recorded.

Internet-based support for rural caregivers of persons with stroke shows promise.

Pierce LL, Steiner V, Govoni AL, Hicks B, Cervantez Thompson TL, Friedemann ML. (2004)

The purpose of this pilot study was to test the feasibility of providing Internet-based education and support intervention to caregivers living in rural settings, including caregivers' satisfaction with the intervention. A secondary aim was to explore their experience of caring. Nine adult caregivers of persons with stroke were enrolled in this descriptive study from rehabilitation centers in northwestern Ohio and southeastern Michigan. They were given access to the intervention, Caring∼Webe©, for three months. Data were collected from participants' bimonthly interviews, as well as e-mail communications. Procedures were tested and found valid, and caregivers were willing and able to use Caring∼Web. Using Friedemann's framework of systemic organization, a coding system was developed for analyzing the qualitative data on the experience of caring. Five main themes emerged from these data. These findings help expand knowledge about caregivers dealing with stroke.

Interpreting the communication of people with profound and multiple learning difficulties

Porter J, Ouvry C, Morgan M, Downs C. (2001)

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Inter-rater Reliability of Activity Limitations by ICF Codes and Qualifiers: ICF Codes Corresponding to FIM

Asakawa Y, Sato Y, Usuda S. (2010)

[Purpose] This study aimed to evaluate the inter-rater reliability of the evaluation scores of activity limitation in the International Classification of Functioning, Disability and Health (ICF) using the "Criteria for Activities and Participations" proposal. [Subjects] The subjects were 10 patients with cerebrovascular disorders living in a support center for people with disabilities. [Methods] Two physical therapists (PT) classified each evaluation item of the Functional Independence Measure (FIM) into corresponding ICF activity codes. Then, a full-time nurse and a part-time PT scored the activity limitations of each subject and calculated the weighted κ of each evaluated item using a flowchart-type questionnaire for the FIM and the scoring criteria shown in the proposal, "Criteria for Activities and Participations" in ICF. [Results] The range of the weighted κ of each item in FIM was 0.44-1.00, and that of ICF was 0.50-1.00. Our results demonstrate high inter-rater reliability for more than 70% of items scored by both evaluations. [Conclusion] The results of the present study suggest that the ICF scores of activity limitations are sufficiently applicable to clinical practice using the proposal, "Criteria for Activities and Participations".

Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship

Holmgren J, Emami A, Eriksson LE, Eriksson H. (2014)

This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.

Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship.

Holmgren J, Emami A, Eriksson LE, Eriksson H. (2014)

This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.

Intervening With Foster Parents to Enhance Biobehavioral Outcomes Among Infants and Toddlers

DOZIER, M., BICK, J. & BERNARD, K. (2011)

Children in foster care face a number of challenges that threaten their ability to form attachment relationships with foster parents and to regulate their behavior and biology. The authors describe the Attachment and Biobehavioral Catch-Up (ABC) intervention, an evidence-based intervention aimed at helping foster children develop trusting relationships with foster parents and develop better biological and behavioral regulation. The authors present research that led to the development of the ABC intervention, outcome research of randomized clinical trials, and a case example of a foster parent and child who participated in the ABC intervention. Finally, issues related to the broader system of care that are likely to affect children's adjustment (e.g., foster caregiver commitment and placement stability) are discussed.

Intervention outcomes among HIV-affected families over 18 months

Rotheram-Borus MJ, Rice E, Comulada WS, Best K, Elia C, Peters K, et al. (2012)

We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.

Intervention outcomes among HIV-affected families over 18 months

Rotheram-Borus, M.J., Rice, E., Scott Comulada, W., Best, K., Elia, C., Peters, K., li, L., Green, S., & Valladares, E. (2012)

Abstract
We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.

Intervention studies for caregivers of stroke survivors: a critical review

Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman E. (2005)

The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.

Interventions aiming to improve school achievements of children in out-of-home care: a scoping review

Forsman, H. & Vinnerljung, B. (2012)

The educational underachievement of children in out-of-home care has been known for decades. In this scoping review, we compiled and analyzed – with a narrative approach – evaluated interventions that aimed to improve foster children's school achievements. Despite a comprehensive searching strategy, only eleven relevant studies were found, indicating that little has been done in intervention research to improve educational outcomes for children in public care. Nine out of the eleven interventions reported some positive results. Literacy was improved in most studies, while evaluated attempts to enhance numeracy skills yielded mixed results. Positive results came from a range of different interventions, e.g. tutoring projects and structured individualized support. We conclude that most focused interventions seem to improve foster children's poor academic achievements, but tutoring projects have so far the best empirical support from evaluations with rigorous designs. Also there's a definite need for more intervention research.

Interventions with video feedback and attachment discussions: Does type of maternal insecurity make a difference?

BAKERMANS-KRANENBURG, M. J., JUFFER, F. & VAN IJZENDOORN, M. H. (1998)

Parents' insecure representations of attachment are associated with lower parental sensitivity and insecure infant–parent attachment relationships, leading to less optimal conditions for the children's socio-emotional development. Therefore, two types of short-term intervention were implemented in a group of lower middle-class mothers with an insecure representation of attachment as assessed with the Adult Attachment Interview. In one group of mothers, the intervention efforts were directed at promoting maternal sensitivity by means of written information about sensitive parenting and personal video feedback. In the other group, additional discussions about the mothers' early attachment experiences took place, aiming at affecting the mothers' attachment representation. The interventions were implemented during four home visits between the 7th and the 10th month after the baby's birth. Preliminary results on 30 mothers pointed at an intervention effect: Mothers in both intervention groups were more sensitive at 13 months than mothers in a control group, t(28) = −2.3, effect size d = .87, p = .01. Mothers who were classified as insecure dismissing tended to profit most from video feedback, whereas mothers who were classified as insecure preoccupied tended to profit most from video feedback with additional discussions about their childhood attachment experiences, F(1,16) = 1.9, d = .65, p = .19. © 1998 Michigan Association for Infant Mental Health

Interviews with children of persons with a severe mental illness: investigating their everyday situation

Östman, M. (2008)

Research on children of persons with a severe mental illness focuses predominantly on parents' and others' perceptions. Children of mentally ill parents form a vulnerable group that has not been adequately paid attention to in psychiatric care institutions. Comparatively little is known about the children's recognition of their parents and the everyday situation of these families. The aim of the study was to investigate experiences of their life situation in children 10-18 years of age in a family with a parent with a severe mental illness. Eight children were interviewed concerning their everyday life situation. The interviews were analysed inspired from using thematic analysis. From the analysis of the material emerged aspects concerning the following themes: need for conversation, love for their family, maturity, experience of fear and blame, feelings of loneliness, responsibility and associated stigma. This study highlights the situation experienced by children of severely mentally ill persons who also are parents. The study may be found to be a basis for inspiring structured interventions and treatments programmes including children of the adult patients seeking psychiatric treatment.

Gabriellas resa: I skuggan gömmer sig solkatterna

Elisabeth Hagborg, Tove Hennix (2009)

I Gabriellas liv finns mycket mörker. Det finns händelser som kastar skuggor ... där mardrömmar kan gömma sig och minne kan lura.Men i det mörka finns också små stänk av ljus. Gabriella behöver hjälp att låta ljuset växa. Hjälp att resa tillbaka in i skuggan, städa ur och låta solkatterna dansa.
I den här boken har Elisabeth Hagborg samlat många års yrkeserfarenhet av vad det kan innebära att växa upp i ett dysfunktionellt hem och tillsammans med illustratören Tove Hennix skapat en bok om Gabriella.

GAKK – grafisk AKK

Ida Andersson (2007)

Om saker, bilder och symboler som alternativ och kompletterande kommunikation.

Galenskap och återhämtning – vägar till ett nytt liv för psykiskt sjuka människor

Neugeboren, Jay (2001)

Natur och Kultur. 2001.Inbunden med skyddsomslag, 410 sidor, 23,5x15,5cm. 700 gram. Nära nyskick, anteckningar på pärmens insida.Jay och Robert Neugeboren växte upp i en judisk familj i New York under komplicerade och kaotiska emotionella förhållanden. Jay blev framgångsrik skönlitterär författare - Robert drabbades av svår psykisk sjukdom och skulle komma att åka in och ut på mentalsjukhus i fyra decennier. Han skulle underkastas alla tänkbara slags behandlingar - många med svåra biverkningar - men utan att få någon verklig hjälp. Galenskap och återhämtning är Jays bok om den fyra år yngre brodern och den psykiatriska vårdapparatens fullständiga misslyckanden att ge denne en anständig vård. Men det är framför allt en bok om hopp. Neugeborens budskap är att även svåra psykiska sjukdomar som schizofreni i hög grad är behandlingsbara. De kanske inte går att bota helt med det finns hjälp för dessa människor och hopp om återhämtning. Detta kan ske med hjälp av bra medicinsk behandling, adekvat psykoterapi men framför allt genom ett personlig engagemang hos personerna i den sjukes omgivning. Neugeboren berättar också om många spännande och dramatiska möten med andra människor som lärt sig att leva fullvärdiga liv trots svår psykisk sjukdom

Gemensam planering – på den enskildes villkor

Stenhammar, Ann-Marie & Flyckt, Karin (2007)

Socialstyrelsen har på regeringens uppdrag tillsammans med Skolverket och Specialpedagogiska institutet analyserat förutsättningarna för att samordna de individuella planer som ett barn, en ungdom och en vuxen person med funktionshinder kan ha. Med funktionshinder menas det komplexa sambandet mellan förekomst av en sjukdom, skada eller liknande och begränsad aktivitet och delaktighet. Särskild uppmärksamhet har ägnats åt vad som behöver förändras i regelverken.

Den huvudsakliga frågeställningen har varit vad som hindrar och stödjer gemensam individuell planering i regelverk, hos organisationer och hos aktörer (det senare avser personalen som är anställd i de berörda verksamheterna). Ytterligare en frågeställning har varit om gemensam planering kan innebära några negativa konsekvenser för den enskilde.

Förutsättningarna för samordnad och gemensam planering har analyserats på tre nivåer: individnivå, organisationsnivå och nationell nivå. Kunskapen om de två förstnämnda nivåerna bygger på skriftlig och muntlig information från brukarföreträdare, personal, verksamhetsansvariga och myndighetsföreträdare i Sverige och i Norge. På den tredje nivån, som berör rapportens huvudresultat, har kunskap inhämtats genom granskning av de bestämmelser om individuella planer som finns i lagar, förordningar eller i för sammanhanget relevanta förarbeten och myndighetsföreskrifter. Ett antal analysfaktorer har använts som stöd för granskningen. De lagstiftningsområden som valts ut för granskning är socialtjänst, hälso- och sjukvård och skollagsreglerade verksamheter samt integration, socialförsäkring och arbetsmarknad. Förutsättningarna för gemensam planering har analyserats utifrån sambandet mellan de tre nivåerna. Rapportens bilaga visar en översikt av bristande överensstämmelser mellan de berörda regelverken.

Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach

Jones L, Totsika V, Hastings RP, Petalas MA. (2013)

Parenting a child with autism may differentially affect mothers and fathers. Existing studies of mother–father differences often ignore the interdependence of data within families. We investigated gender differences within-families using multilevel linear modeling. Mothers and fathers of children with autism (161 couples) reported on their own well-being, and their child's functioning. Mothers reported higher levels of distress compared with fathers, and child behavior problems predicted psychological distress for both mothers and fathers. We found little evidence of child functioning variables affecting mothers and fathers differently. Gender differences in the impact of child autism on parents appear to be robust. More family systems research is required to fully understand these gender differences and the implications for family support. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Gender perspective on informal care for elderly people one year after acute stroke

Gosman-Hedström, G. and L. Claesson (2005)

BACKGROUND AND AIMS: The aim of the one-year follow-up was to evaluate formal care and the situation of informal caregivers from a gender perspective. METHODS: The present study targeted elderly persons (n = 147) living in their own homes 12 months after acute stroke, 94 women and 53 men. The median age of the women was 81 years and the men 80 years. RESULTS: A statistically significant gender difference was seen in living conditions. Eighty percent of the women were living alone compared with 28% of the men (CI 48-56%). The informal care given far exceeded that provided by the community: 65% of these elderly people had some kind of informal care and 44% received formal care from the community. There was a gender difference in daily informal personal care, 24% of men and 16% of women (CI 2-18%), and in daily informal household assistance (CI 15-43%). Formal care was provided by the community significantly more frequently to women (56%) than men (23%) (CI 21-45%). The women more frequently had community-based help with house-cleaning (CI 23-39%) and they also more frequently received help with personal care (CI 1-10%). CONCLUSIONS: This study showed statistically significant gender differences in the use of informal and formal care. Elderly caregivers' situations must be given greater attention, since informal care to stroke survivors represents a far greater burden than the care that is provided by the community. Most of the caregivers were elderly women, and preventive intervention measures should be developed in order to enable them to manage their everyday lives.

Gender roles and social policy in an ageing society: The case of Japan

Makita M (2010)

This article reviews the major underpinnings of the Japanese welfare state in the context of social care from a feminist perspective. In Japan, family-care responsibilities have traditionally been assigned to women; hence, care has long been a women's issue. However, as the social contract of a male breadwinner and a "professional housewife" gradually fades out, Japanese women find more opportunities to renegotiate their caring roles. Of course, this social transformation did not occur in isolation, it was influenced by patterns in economic development, state policies and mainly demographic changes. All this has stimulated new state responses in the form of social welfare expansion that arguably aim to relieve women of the burdens of family-care. The issue remains, however, as to whether Japan would be able to recognise that the main structural issues of population ageing do not originate from demographic changes, but from a strict gendered division of labour and gender inequality.

Gender symmetry, sexism, and intimate partner violence

Allen, C. T., Swan, S. C., & Raghavan, C. (2009)

This study of a predominantly Hispanic sample of 92 male and 140 female college students examines both gender symmetry in intimate partner violence (IPV) and inconsistent relationships found in previous studies between sexist attitudes and IPV. Results indicate that although comparable numbers of men and women perpetrate and are victimized in their relationships with intimate partners, the path models suggest that women's violence tends to be in reaction to male violence, whereas men tend to initiate violence and then their partners respond with violence. Benevolent sexism was shown to have a protective effect against men's violence toward partners. Findings highlight the importance of studying women's violence not only in the context of men's violence but also within a broader sociocultural context.

Gender, work, and attitudes

Kotsadam, A. (2011)

The thesis consists of four self-contained papers. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.

Gender, work, and attitudes

Kotsadam, A. (2011)

Abstract The thesis consists of four self-contained papers. Paper 1: The long term effect of own and spousal parental leave on mothers' earnings We take advantage of the introduction of a Norwegian parental leave reform in 1993 to identify the causal effect of parental leave on mothers' long-term earnings. The reform raised the total leave period by seven weeks, but reserved four weeks for the father. The reform process was fast, so all mothers were already pregnant at the time of the policy announcement. Applying a regression discontinuity design we find that women who had their last child immediately after the policy change had higher mean yearly earnings from 1995 to 2005 and long-run yearly earnings (in our last year of data in 2005) compared to women who had their last child immediately before the reform. However, the estimate is sensitive to extreme observations, to restrictions regarding eligibility, and to the exclusion of observations within a window of three days before and after the reform. Paper 2: Do laws affect attitudes? An assessment of the Norwegian prostitution law using longitudinal data (Forthcoming in International Review of Law and Economics) The question of whether laws affect attitudes has inspired scholars across many disciplines, but empirical knowledge is sparse. Using longitudinal survey data from Norway and Sweden, collected before and after the implementation of a Norwegian law criminalizing the purchase of sexual services, we assess the short-run effects on attitudes using a difference-indifferences approach. In the general population, the law did not affect moral attitudes toward prostitution. However, in the Norwegian capital, where prostitution was more visible before the reform, the law made people more negative toward buying sex. This supports the claim that proximity and visibility are important factors for the internalization of legal norms. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states

Genetic and environmental influences on ADHD symptom dimensions of inattention and hyperactivity: A meta-analysis

Nikolas, M., & Burt, S. A. (2010)

Behavioral genetic investigations have consistently demonstrated large genetic influences for the core symptom dimensions of attention-deficit/hyperactivity disorder (ADHD), namely inattention (INATT) and hyperactivity (HYP). Yet little is known regarding potential similarities and differences in the type of genetic influence (i.e., additive vs. nonadditive) on INATT and HYP. As these symptom dimensions form the basis of the current Diagnostic and Statistical Manual of Mental Disorders subtype classification system, evidence of differential genetic influences would have important implications for research investigating causal mechanisms for ADHD. The current meta-analysis aimed to investigate the nature of etiological influences for INATT and HYP by comparing the type and magnitude of genetic and environmental influences each. A comprehensive literature search yielded 79 twin and adoption studies of INATT and/or HYP. Of these, 13 samples of INATT and 9 samples of HYP were retained for analysis. Results indicated that both dimensions were highly heritable (genetic factors accounted for 71% and 73% of the variance in INATT and HYP, respectively). However, the 2 dimensions were distinct as to the type of genetic influence. Dominant genetic effects were significantly larger for INATT than for HYP, whereas additive genetic effects were larger for HYP than for INATT. Estimates of unique environmental effects were small to moderate and shared environmental effects were negligible for both symptom dimensions. The pattern of results generally persisted across several moderating factors, including gender, age, informant, and measurement method. These findings highlight the need for future studies to disambiguate INATT and HYP when investigating the causal mechanisms, and particularly genetic influences, behind ADHD.

Genetic and Familial Environmental Influences on the Risk for Drug Abuse: A National Swedish Adoption Study

Kendler KS, Sundquist K, Ohlsson H, Palmér K, Maes H, Winkleby M, et al. (2012)

CONTEXT: Prior research suggests that drug abuse (DA) is strongly influenced by both genetic and familial environmental factors. No large-scale adoption study has previously attempted to verify and integrate these findings. OBJECTIVE: To determine how genetic and environmental factors contribute to the risk for DA. DESIGN: Follow-up in 9 public databases (1961-2009) of adopted children and their biological and adoptive relatives. SETTING: Sweden. PARTICIPANTS: The study included 18 115 adopted children born between 1950 and 1993; 78 079 biological parents and siblings; and 51 208 adoptive parents and siblings. MAIN OUTCOME MEASURES: Drug abuse recorded in medical, legal, or pharmacy registry records. RESULTS: Risk for DA was significantly elevated in the adopted offspring of biological parents with DA (odds ratio, 2.09; 95% CI, 1.66-2.62), in biological full and half siblings of adopted children with DA (odds ratio, 1.84; 95% CI, 1.28-2.64; and odds ratio, 1.41; 95% CI, 1.19-1.67, respectively), and in adoptive siblings of adopted children with DA (odds ratio, 1.95; 95% CI, 1.43-2.65). A genetic risk index (including biological parental or sibling history of DA, criminal activity, and psychiatric or alcohol problems) and an environmental risk index (including adoptive parental history of divorce, death, criminal activity, and alcohol problems, as well as an adoptive sibling history of DA and psychiatric or alcohol problems) both strongly predicted the risk for DA. Including both indices along with sex and age at adoption in a predictive model revealed a significant positive interaction between the genetic and environmental risk indices. CONCLUSIONS: Drug abuse is an etiologically complex syndrome strongly influenced by a diverse set of genetic risk factors reflecting a specific liability to DA, by a vulnerability to other externalizing disorders, and by a range of environmental factors reflecting marital instability, as well as psychopathology and criminal behavior in the adoptive home. Adverse environmental effects on DA are more pathogenic in individuals with high levels of genetic risk. These results should be interpreted in the context of limitations of the diagnosis of DA from registries.

Genetic and non-genetic influences on the development of co-occurring alcohol problem use and internalizing symptomatology in adolescence: a review

Saraceno L, Munafó M, Heron J, Craddock N, van den Bree MBM. (2009)

AIMS:
Alcohol problem use during adolescence has been linked to a variety of adverse consequences, including cigarette and illicit drug use, delinquency, adverse effects on pubertal brain development and increased risk of morbidity and mortality. In addition, heavy alcohol-drinking adolescents are at increased risk of comorbid psychopathology, including internalizing symptomatology (especially depression and anxiety). A range of genetic and non-genetic factors have been implicated in both alcohol problem use as well as internalizing symptomatology. However, to what extent shared risk factors contribute to their comorbidity in adolescence is poorly understood.
DESIGN:
We conducted a systematic review on Medline, PsycINFO, Embase and Web of Science to identify epidemiological and molecular genetic studies published between November 1997 and November 2007 that examined risk factors that may be shared in common between alcohol problem use and internalizing symptomatology in adolescence.
FINDINGS:
Externalizing disorders, family alcohol problems and stress, as well as the serotonin transporter (5-HTT) S-allele, the monoamine oxidase A (MAOA) low-activity alleles and the dopamine D2 receptor (DDR2) Taq A1 allele have been associated most frequently with both traits. An increasing number of papers are focusing upon the role of gene-gene (epistasis) and gene-environment interactions in the development of comorbid alcohol problem use and internalizing symptomatology.
CONCLUSIONS:
Further research in adolescents is warranted; the increasing availability of large longitudinal genetically informative studies will provide the evidence base from which effective prevention and intervention strategies for comorbid alcohol problems and internalizing symptomatology can be developed.

Genomförande av FoU-cirkel

Johansson, L. (2007)

Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. L. Johansson and K. Renblad.

Getting evidence into practice: ingredients for change

Rycroft-Malone J, Harvey G, Kitson A, McCormack B, Seers K, Titchen A. (2002)

Mounting pressure is being exerted to ensure that the delivery of care is evidence-based and clinically effective. However, the challenge this presents to practitioners is complex. The authors propose that successful implementation of evidence into practice is a function of three elements: the nature of the evidence; the context in which the change is to take place; and the way the process is managed. A framework has been developed to represent these factors. For those about to embark on implementation work, this article closes by highlighting a number of key questions for consideration, stimulated by the framework.

Getting in touch' with people with severe learning disabilities

Caldwell, P. (1997)

This article explores innovative and interactive ways of working with people who have severe learning disabilities, special needs and/or challenging behaviour who, despite the efforts of those who support them, are not able to respond to attempts to interact with them. It examines the possibilities of communicating by using people's own behaviours and outlines how these methods of interaction can be developed into a 'language' which people with these disabilities recognize and find motivating. Entering into a person's world in a way that is not confusing or threatening may allow him/her to move from solitary self-stimulation to shared activity. People with these disabilities will then become aware of a world outside their own (sometimes they are aware of this but are unable to make a connection between what they perceive and themselves), and begin to understand their relationship to it. Surprise is an important element as it shifts attention from the inner space to the source of the intervention. A number of examples illustrate a range of person-centred approaches and the variety of disabilities that may be assisted.

Glöm ej dom som glömmer: Studie av stöd och insatser för unga personer med demenssjukdom och deras anhöriga i en kommun i Mellansverige

Strömqvist, Lina (2008)

Syftet med studien var att ta reda på hur insatser, stöd och samordning var utformat kring unga personer med demenssjukdomar och deras anhöriga i en kommun i Mellansverige. Med unga personer med demenssjukdomar avses de som är yngre än 65 år när de får diagnosen. De här personerna är mitt i livet när de drabbas av en sjukdom som förknippas med äldre människor och åldrande. Livssituationen kan se helt annorlunda ut än för äldre personer som drabbas av sjukdomen, därför bör stödet till dem vara utformat på ett annat sätt. Studien Metoden som användes i studien var kvalitativa intervjuer. Urvalet gjordes genom ett både strategiskt och snöbollsurval för att få en översikt av hur samordning, insatser och stöd var utformat i kommunen. Respondenterna i studien var en kurator inom landstinget, en biståndshandläggare, en LSS-handläggare, en demensspecialiserad undersköterska och en anhörigkonsult på kommunen. Som analysmetod användes Grounded Theory då forskningsmaterialet om unga personer med demenssjukdomar inte var tillräckligt omfattande.

Glömskans spår - Demens från ett anhörigperspektiv

Larsson Mari (2020)

Boken handlar om min tid som demensanhörig. Den innehåller också råd och tips till anhöriga samt egna skrivna dikter. Mer information om boken finns på min bokblogg www.vingpenna.blogspot.se.

Första upplagan 2009, nytryck 2020

Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work Support

Gordon, T. A. (2013)

This study explored the dimensionality of grief with a sample (n = 180) of caregivers of deceased loved ones; utilizing a positive grief scale, additional data were collected about perceptions of social worker practice behaviors in end-of-life care. Results revealed the presence of both positive and negative aspects of grief. Supportive social work practice behaviors at the end of life were present at least 52.2% of the time and specific practices were analyzed as to their association with positive or negative grief reactions. Results from this study suggest that grief is a multidimensional process and that social work practice behaviors can support positive aspects of grief with clients in all fields of practice.

Good grieving – an intervention program for grieving children

Heiney, S.P., Dunaway, N.C. & Webster, J. (1995)

Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.

Good grieving – an intervention program for grieving children

Heiney, S.P., Dunaway, N.C., & Webster, J. (1995)

Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.

Gôrbra för äldre : En film om gemenskap, tillgänglighet & välfärdsteknologi för ett gôrbra boende

Göteborgs stad (2012)

Göteborg, Norrköping och Västerås har försöksverksamhet inom Teknik för äldre II , ett regeringsuppdrag på Hjälpmedelsinstitutet. Uppdraget är att stödja utvecklingen av ny teknik och bättre boende för äldre och anhöriga. Göteborgs försöksverksamhet kallas Gôrbra för äldre och pågår 2011–2012. FoU i Väst utvärderar Gôrbra för äldre. I utvärderingen ingår en ekonomisk analys som ett bidrag till en samhällsekonomisk diskussion.

Grandma’s hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

Green, Sara (2001)

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive interviews. Findings of the survey indicate that: 1) grandparents are a common source of weekly assistance-significantly more common than other relatives or friends and neighbors; 2) where grandparents participate, the number of other sources of support is also higher; and 3) help from grandparents has a positive, while the number of other sources of help has a negative, relationship to parental ability to maintain a positive emotional outlook and to avoid physical exhaustion. Findings of the interactive interviews suggest that: 1) grandparent participation can promote pride and "normalized attitudes" by helping grandparents to get to know the child with a disability on an intimate basis; 2) when grandparents do not participate, parents may feel the need to manage the information given to and the emotional responses experienced by grandparents who have not had a chance to get know and love the child through frequent, direct contact; and 3) parents are very concerned that if grandparents themselves begin to need help due to increased age and disability, they will not ask for it because of fear that parents are already overburdened by the unusual demands of their parenting roles

Grandparent Support for families of children with Down´s Syndrome

Hastings, Richard, Thomas, Hannah & Delwiche, Nicole (2002)

Background Although grandparents are recognized as an important source of support for families of children with intellectual and other disabilities, there has been very little research in this area. The aim of the present paper is to present a brief overview of the literature, and to present data from a preliminary study of relationships between parental stress and grandparent support and conflict.

Methods Sixty-one parents of children with Down's syndrome (34 mothers and 27 fathers) completed questionnaires on grandparent support and conflict. Parents also completed the Friedrich Short Form of the Questionnaire on Resources and Stress (QRS) with scoring amended to include a depression sub-scale.

Results The main findings were: (1) grandparent support and conflict were associated with mothers' but not fathers' ratings of stress on the QRS, and (2) both grandparent support and conflict made independent contributions to the prediction of mothers' stress on at least one dimension of the QRS.

Conclusions Practical implications of the results for interventions designed to encourage grandparent support for families are discussed. Issues for further research and methodological problems with the study are also identified

Grief in childhood: fundamentals of treatment in clinical practice

Pearlman, M.Y., D’Angelo Schwalbe, K., & Cloitre, M. (2010)

Children vary in their response to the death of a loved one. Some children develop relatively few symptoms or problems, while others face significant or prolonged symptoms, such as posttraumatic stress disorder or anxiety. Similarly, children vary in their circumstances and preferences. Thus, clinicians who work with bereaved children must customize interventions to meet the specific needs of each individual child.
This book presents Integrated Grief Therapy for Children — an evidence-based model for treating bereaved children that draws extensively on cognitive–behavioral, family systems, and narrative approaches to therapy. The model shows clinicians how to assess the needs of bereaved children, treat common distressing symptoms (depression, posttraumatic stress disorder, anxiety, and behavioral problems), and address the grief itself while fostering resilience.
Because emotional and behavioral problems following grief are manifested in different ways, the model allows for flexibility based on the age, symptom presentation, and needs of the child. And because the inclusion of a surviving parent or caregiver is critical to working with grieving children, the model involves the parent in the interventions.
With a thorough literature review on bereavement in childhood, extensive case examples and dialogues to illustrate therapeutic techniques, and over 20 activity handouts that therapists can photocopy and use in sessions, this book provides everything needed to treat bereaved children.

Grief in childhood: fundamentals of treatment in clinical practice

Pearlman, M.Y., D’Angelo Schwalbe, K., & Cloitre, M. (2010)

Children vary in their response to the death of a loved one. Some children develop relatively few symptoms or problems, while others face significant or prolonged symptoms, such as posttraumatic stress disorder or anxiety. Similarly, children vary in their circumstances and preferences. Thus, clinicians who work with bereaved children must customize interventions to meet the specific needs of each individual child.
This book presents Integrated Grief Therapy for Children — an evidence-based model for treating bereaved children that draws extensively on cognitive–behavioral, family systems, and narrative approaches to therapy. The model shows clinicians how to assess the needs of bereaved children, treat common distressing symptoms (depression, posttraumatic stress disorder, anxiety, and behavioral problems), and address the grief itself while fostering resilience.
Because emotional and behavioral problems following grief are manifested in different ways, the model allows for flexibility based on the age, symptom presentation, and needs of the child. And because the inclusion of a surviving parent or caregiver is critical to working with grieving children, the model involves the parent in the interventions.
With a thorough literature review on bereavement in childhood, extensive case examples and dialogues to illustrate therapeutic techniques, and over 20 activity handouts that therapists can photocopy and use in sessions, this book provides everything needed to treat bereaved children.

Grief related to the experiences of being the sibling of a child with cancer

Jenholt Nolbris, M., Enskär, K., & Hellström, AL. (2013)

Abstract
BACKGROUND:
Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support.
OBJECTIVE:
The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer.
METHODS:
A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data.
RESULTS:
Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond.
CONCLUSION:
Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death.
IMPLICATION FOR PRACTICE:
This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.

Group intervention for children of drug-addicted parents--using expressive techniques

Peleg-Oren N. (2002)

Children of an addictive parent generally suffer from negative repercussions and constitute "a population at risk," in need of special therapeutic intervention. This article explores the difficulties confronting these children and the group intervention for children aged 8–11, lasting 18 months as a therapeutic intervention to help them. The description includes the group intervention framework, the expressive and non-verbal techniques used, and the rationale as well as the theoretical basis for using these techniques. The unique contribution of this article lies in the demonstration of using expressive group therapy and particularly of non-verbal techniques with children of addicted parents, with abundant examples stemming from the topics dealt with by the group.

Group interventions for children at-risk from family abuse and exposure to violence

Johnston, J.R. (2003)

This paper describes the rationale, content, and preliminary data on outcome effectiveness of a therapeutic curriculum designed for groups of children from highly conflicted and violent families, implemented in family agency and school settings. Data for 223 children (ages 5–14 years, most of whom were from single-parent, indigent, ethnic minority families) who participated in the study indicate that the majority had been exposed to multiple types of stressful and traumatic events. These include separation and loss of a parent or caretaker, exposure to spousal and child abuse, neighborhood violence, and having a family member in trouble with the law. The absence of a control group makes it difficult to determine to what extent the positive outcomes can be attributed to the group intervention. However, a pre- and post-assessment of the children's behavioral problems and social competence by clinicians, teachers, and parents showed significant improvement in their functioning over a six-month follow-up. Conclusions are drawn as to the basic elements of group interventions that are ecologically and economically.

Group work for bereaved children: a team approach

Beswick, G. & Bean, D. (1996)

This article provides a review of the current literature relating to child bereavement. The author also describes the setting up, running and evaluation of group work for bereaved children, and examines how these experiences can help to inform future best practice.

Intimate partner violence and birth outcomes: A systematic review

Boy, A., & Salihu, H. M. (2004)

Abstract
OBJECTIVE:
There is a lack of comprehensive information on the relationship between domestic physical and emotional violence and pregnancy outcomes. Accordingly, we undertook this systematic review of the literature to examine the evidence on the association between physical and emotional abuse and pregnancy outcomes.
STUDY DESIGN AND METHOD:
A comprehensive literature search was carried out using pertinent key words that would retrieve any research article pertaining to the topic. This was supplemented by cross-referencing of the articles. A total of 296 articles were found; case reports and articles that failed to satisfy the study inclusion criteria were removed and 30 articles were included in the review.
RESULTS:
Overall, adverse pregnancy outcomes, including low birth weight, maternal mortality and infant mortality are significantly more likely among abused than nonabused mothers. Abused pregnant mothers present more often than nonabused mothers with kidney infections, gain less weight during pregnancy, and are more likely to undergo operative delivery. Fetal morbidity, such as low birth weight, preterm delivery, and small size for gestational age are more frequent among abused than nonabused gravidas. The risk for maternal mortality is three times as high for abused mothers. Black abused mothers are 3-4 times as likely to die as their white counterparts. Unmarried victims are also three times as likely to die as married abused mothers. Intimate partner violence is also responsible for increased fetal deaths in affected pregnancies (about 16.0 per 1000).
CONCLUSION:
Intimate partner violence is often a life-threatening event to both the mother and the fetus. This, in addition to the heightened level of feto-maternal morbidity and mortality, represents clear-cut justification for routine systematic screening for the presence of abuse during pregnancy.

Intimate Partner Violence and Children's Memory

Gustafsson, H. C., Coffman, J. L., Harris, L. S., Langley, H. A., Ornstein, P. A., & Cox, M. J. (2013)

The current study was designed to examine the relation between intimate partner violence (IPV) and children's memory and drew from a socioeconomically and racially diverse sample of children living in and around a midsized southeastern city (n = 140). Mother-reported IPV when the children were 30 months old was a significant predictor of children's short-term, working, and deliberate memory at 60 months of age, even after controlling for the children's sex and race, the families' income-to-needs ratio, the children's expressive vocabulary, and maternal harsh-intrusive parenting behaviors. These findings add to the limited extant literature that finds linkages between IPV and children's cognitive functioning and suggest that living in households in which physical violence is perpetrated among intimate partners may have a negative effect on multiple domains of children's memory development.

Intimate Partner Violence and Preschoolers’ Explicit Memory Functioning

Jouriles, E. N., Brown, A., McDonald, R., Rosenfield, D., Leahy, M., & Silver, C. (2008)

This research examines whether parents' intimate partner physical violence (IPV) relates to their preschoolers' explicit memory functioning, whether children's symptoms of hyperarousal mediate this relation, and whether mothers' positive parenting moderates this relation. Participants were 69 mothers and their 4- or 5-year-old child (34 girls). Mothers completed measures of IPV, children's hyperarousal symptoms, parent-child aggression, and positive parenting. Measures of explicit memory functioning were administered to preschoolers. As expected, IPV correlated negatively with preschoolers' performance on explicit memory tasks, even after controlling for parent-child aggression and demographic variables related to preschoolers' memory functioning. Preschoolers' hyperarousal symptoms did not mediate the relation between IPV and explicit memory functioning, but mothers' positive parenting moderated this relation. Specifically, the negative relation between IPV and preschoolers' performance on 2 of the 3 explicit memory tasks was weaker when mothers engaged in higher levels of positive parenting. These findings extend research on IPV and children's adjustment difficulties to explicit memory functioning in preschoolers and suggest that mothers can ameliorate the influence of IPV on preschoolers' memory functioning via their parenting.

Into adulthood: a follow-up study of 718 youths who were placed in out-of-home care during their teens

Vinnerljung B. & Sallnäs M. (2008)

ABSTRACT 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.

Into adulthood: a follow‐up study of 718 young people who were placed in out‐of‐home care during their teens - ResearchGate. Available from: http://www.researchgate.net/publication/230164185_Into_adulthood_a_followup_study_of_718_young_people_who_were_placed_in_outofhome_care_during_their_teens [accessed Aug 5, 2015].

IQ, scholastic performance and behaviour in sibs raised in contrasting environments.

Dumaret A (1985)

Medium- and long-term effects of types of placement of the offspring of lower class families have been studied. The progeny of 28 mothers was reconstituted. The subjects were divided into three groups: 35 children abandoned and adopted early in privileged environments (A), 46 'biological mother-reared' children remaining in their disadvantaged social environments (B) and 21 children raised in institutions or foster homes (C). Analyses focused on IQ, scholastic performance and behaviour. Results show that the social environment has important effects: the differences between the three groups are very significant. For A and B groups tested in the schools, comparisons were made with the classmates. For the C group the effects of long-term emotional deprivation are superimposed on the effects of the social environment.

Is disclosure therapeutic for children following exposure to traumatic violence?

Graham-Bermann, S. A., Kulkarni, M. R., & Kanukollu, S. N. (2011)

Trauma theory suggests that to recover from exposure to traumatic events, such as exposure to violence, therapeutic interventions should include opportunities to disclose and to process the fearful and stressful events. Yet little is known about the circumstances that foster disclosure of such information in therapeutic environments by children and related mental health outcomes for those children. In this study, the process of disclosure was examined among children ages 6 to 12 years (N = 121) in a community-based intervention program for children exposed to intimate partner violence (IPV). Therapists documented children's spontaneous disclosure in their group. Mothers and children completed demographic and standardized attitudinal and mental health questionnaires. Fifty-two percent of children spontaneously disclosed during therapy. Child ethnicity, harm to the child, internalizing behavioral adjustment problems, and engagement in therapy predicted disclosure. Disclosure within the group was associated with gains for individual children in internalizing behavioral adjustment problems and improvement in attitudes and beliefs concerning the acceptability of violence.

Is there intergenerational transmission of trauma? The case of combat veterans' children

Dekel, R., & Goldblatt, H (2008)

This article is a review of the literature on intergenerational transmission of posttraumatic stress disorder (PTSD) from fathers to sons in families of war veterans. The review addresses several questions: (1) Which fathers have a greater tendency to transmit their distress to their offspring? (2) What is transmitted from father to child? (3) How is the distress transmitted and through which mechanisms? And finally, (4) Which children are more vulnerable to the transmission of PTSD distress in the family? Whereas the existing literature deals mainly with fathers' PTSD as a risk for increased emotional and behavior problems among the children, this review also highlights the current paucity of knowledge regarding family members and extrafamilial systems that may contribute to intergenerational transmission of PTSD or to its moderation. Little is also known about resilience and strengths that may mitigate or prevent the risk of intergenerational transmission of trauma.

Israeli preschoolers under Scuds: a 30-month follow-up

Laor, N., Wolmer, L., Mayes, L. C., Gershon, A., Weizman, R., & Cohen, D. (1997)

OBJECTIVE:
Longitudinal studies of children exposed to traumatic events show contrasting findings regarding their symptomatic change over time. The present study reports on a 30-month follow-up of preschool children and their mothers who had been exposed to Scud missile attacks.

METHOD:
Families displaced during the Gulf War after their homes had been damaged by the missile attack and a control group whose homes remained intact were interviewed about posttraumatic and general symptomatology, the mothers' capacity to control images, and the children's adaptive behavior.

RESULTS:
Stress symptoms decreased in the displaced children but not in their mothers. Both reported more posttraumatic symptoms than did the control group. No differences in the children's adaptive behavior were observed. Posttraumatic symptoms of the displaced children correlated with the mothers' avoidant symptoms. The mothers' avoidant symptoms at follow-up were statistically explained by the mothers' symptoms during the war and their capacity for image control, the duration of displacement, and the cohesion of the family.

CONCLUSIONS:
The maternal stress-buffering capacity constitutes a central element in children's protective matrix and is crucial in minimizing long-term internal suffering of traumatized preschool children.

Issues of social support: The family and home care

Silverstone B, Horowitz A. (1987)

Stroke is one of the oldest but least understood diseases, and it is one of the major public health problems facing the elderly. Recent epidemiological investigations have found that the incidence of stroke has been underestimated by about 50%, and that the burden of disease is highest in minority populations. Recent clinical and basic neuroscience research indicates that stroke is neither unpredictable nor irreversible. Many risk factors for stroke are readily identifiable, and evidence-based treatment may be used to reduce the likelihood of stroke among those at risk. Rapid diagnosis and evaluation of stroke and transient ischemic attack and their treatment, including surgery, anticoagulation, antiplatelet and other medical therapies, reduce the chance of recurrence. More aggressive treatment of blood pressure, even among patients who are not necessarily hypertensive, may also reduce the risk of future strokes. Once ischemic stroke has occurred, emergent therapy using thrombolysis may significantly reduce disability, even among the elderly. This review presents an update on definitions of stroke and its subtypes, stroke epidemiology, and the results of recent studies of stroke prevention and acute treatment.

'It has been a good growing experience for me': Growth experiences among African American youth coping with parental cancer

Kissil, K., Niño, A., Jacobs, S., Davey, M., & Tubbs, C. Y. (2010)

This qualitative focus group study describes posttraumatic growth experiences of African American adolescents currently coping with parental breast cancer. Twelve adolescents participated in three focus groups assessing their experiences with parental cancer. Spontaneous accounts of posttraumatic growth were reported by all participants. A content analysis revealed reports in four of the five domains of posttraumatic growth identified by Tedeschi and Calhoun (1996) which included: greater appreciation for life, enhanced interpersonal relationships, increased sense of personal strengths, and changed priorities. An additional domain, change in health behaviors and attitudes, also emerged. These findings add important knowledge to the developing field of research in posttraumatic growth in populations where available research is scarce, especially among adolescents and racial minorities.

Jag har en sjukdom men jag är inte sjuk - tio år senare.

Christina Renlund, Mustafa Can, Thomas Sejersen (2015)

Hur är det att var barn och ha en mamma med stark hjärna och hjärta, men muskler som är svaga? Vilka frågor och farhågor är det som dyker upp i ett barns funderingar? Och hur kan vi hjälpa och stödja ett barn att förstå? Vi får i ett kapitel i denna bok ta del av hur Liam 6 år, hans familj samt psykolog Christina Renlund finner sätt att hantera situationen. Liam berättar om sina funderingar och rädslor medan mamma Ninnie berättar om sina. Vad är kopplat till hennes sjukdom och vad tillhör det som Liam i den ålder han befinner sig i, ändå skulle fundera över. Efterhand som Liam växer och hamnar i nya situationer dyker nya utmaningar upp. Vi får bland annat ta del av hur det är när Liam ska börja skolan och Ninnie väljer att en dag komma med till skolan och berättar om sin muskelsjukdom för barnen, och hur stolt Liam är över sin mamma!
Christina Renlund lotsar oss i egenskap av psykolog, med mångårig erfarenhet av att träffa familjer i liknande situationer, genom olika utmaningar Liam och hans familj har att hantera. Samtalen och funderingarna varvas med råd och tydliggörande. Om vikten av att tidigt prata med barnen och rusta dem med kunskap och svar att använda när frågorna kommer och på det viset göra barnen tryggare.

Jag oxå! Dödsviktigt

Mia Berg, Anna Lindholm (form) (2012)

En mamma eller pappa dör och halva världen försvinner. Trots det går det att växa upp och fortsätta leva ett helt liv. Här möter du människor du känner igen som klarat det och hittat glädjen och uppfyllt drömmar.
Mediamannen Peter Settman, coachen och författaren Elizabeth Gummesson, sångaren Patrik Isaksson och musikern Marina Schiptjenko. Alla förlorade de en förälder som barn och här berättar de sina historier.
Det är rakt på sak om dödsbesked, förtvivlan och saknad. Men också fullt med hopp, livsglädje och bilder av den där särskilda sortens styrka och beslutsamhet. Den som kommer sen, när man inser att man klarar av även det som är riktigt svårt.
Dödsviktigt är till dig som förlorat din mamma eller pappa. Du ska veta att det finns fler som tänker och känner som du.
Dödsviktigt är till dig som står bredvid och inte vet vad du ska göra. Du får tips om vad du kan säga och hjälp att förstå vad döden gör med dem som blir kvar.
Dödsviktigt är också till alla er andra som någon gång sagt orden "om jag dör". Varje år förlorar över 3000 barn i Sverige en förälder och de lär sig tidigt att vi inte lever för alltid. Döden är en del av livet, allas liv. Och den blir lättare att leva med om vi gör det tillsammans. Därför är det dödsviktigt att prata om döden.

Jag vill säga något

Helena Alvesalo (2006)

Filmen vänder sig till den som vill inspireras till att använda TAKK, tecken som alternativ och kompletterande kommunikation. Vi får följa fyra barn i deras vardag. De är i olika åldrar och i olika behov av att kunna kommunicera. Gemensamt är att de och deras omgivning använder TAKK varje dag, i alla sammanhang.

Jag är med! Om personlig assistans och barns delaktighet i familjeaktiviteter.

Wilder J, Axelsson AK. (2013)

Boken handlar om att underlätta möjligheterna till delaktighet i familjens vardagsliv för barn och ungdomar som har omfattande funktionsnedsättningar. Boken bygger på erfarenheter och tankar från föräldrar till barn med personlig assistans samt deras personliga assistenter. Förhoppningen är att deras tips och idéer ska bidra till upptäckten av nya situationer och samspelsmöjligheter i vardagen som man kanske inte riktigt fått syn på än.

Boken erbjuder fördjupning om delaktighet, barns lärande och utveckling i familjen och konkreta tips om hur man kan arbeta för att underlätta barns delaktighet. Boken kan användas som en huvudbok för samtal om hur vardagslivet kan gestalta sig när barn har personlig assistans.

Boken riktar sig till föräldrar, personliga assistenter, anhöriga och personer som arbetar med barn och ungdomar som har omfattande funktionsnedsättningar. Författare är Jenny Wilder, forskare vid högskolan i Jönköping och forskare/ möjliggörare på Nationellt kompetenscentrum anhöriga (Nka), Anna Karin Axelsson, doktorand vid högskolan i Jönköping och Maggan Carlsson, handledare på Föreningen JAG.

Jag är också viktig. Att växa upp med en familjemedlem som är sjuk eller funktionshindrad

Sundsröm, Elina (2012)

- Jag skrev den här boken för att det är så viktigt för anhöriga barn att få plats, få stöd i andra och veta att de får känna alla känslor som ibland upplevs som »förbjudna« när man lever med en familjemedlem med funktionshinder eller sjukdom. Det hade jag behövt när jag var barn, hade en mamma som blivit förlamad och rullstolsburen och vi hade assistenter som gjorde det svårt att ha en privat familjesituation.

Elina Sundström är frilansjournalist och utbildar sig till vetenskapsjournalist. Hon är även utbildad ayurvedisk massageterapeut samt har skrivit Engagemangsguiden: en handbok om ideellt engagemang och volontärarbete som gavs ut av Rädda Barnens Ungdomsförbund år 2009.

Boken är för dig som arbetar inom hälso- och sjukvård, barnomsorg eller på annat sätt är i kontakt med barn och unga. Den ger dig kunskap, inspiration och verktyg för att ge unga anhöriga stöd, råd och information.

Den är också för dig som själv är ung anhörig, och innehåller särskilda reflektions- och diskussionspunkter riktade till dig.

Jag är också viktig. Om att vara ung anhörig.

Elina Sundström (2012)

Att växa upp som barn till en anhörig som är sjuk eller har ett funktionshinder innebär ofta påfrestningar som situationen i familjen för med sig. Alla familjer är olika, men för de unga anhöriga finns det ofta gemensamma erfarenheter. Dessa barn och unga kan behöva stöd och uppmärksamhet.

Unga anhöriga tar ofta på sig ett stort ansvar i sin familj. Då kan det finnas behov av bland annat praktisk hjälp i hemmet, men också av att få prata om de egna känslorna. Men ett barn med en sjuk eller funktionshindrad familjemedlem behöver inte nödvändigtvis må dåligt, och man vill ofta inte bli särbehandlad. Även om situationen i familjen kan föra med sig besvärligheter, kan den också föra samman familjen och vara en källa till styrka. I boken ser vi exempel på olika reaktioner och vägval.

Jag är också viktig innehåller intervjuer med professionella, unga anhörigas berättelser - några berättar själva, andra har blivit intervjuade - samt diskussionsunderlag och frågor för vidare reflektion. I boken finns även litteraturförslag och en organisationsförteckning.

Jag. Har. Inga. Ord. Kvar.

Anna Bergfors (2020)

Denna prosasamling föddes ur mitt behov av tröst.

Mitt behov av att sätta ord på mina känslor utifrån min vuxnes sons missbruk.

Orden tröstar mig och jag hoppas att mina ord även ska ge dig tröst.

Med dessa ord vill jag att du ska förstå att du som anhörig inte är ensam och det finns inget rätt eller fel i hur vi känner och vad vi känner.

Din anhöriges missbruk handlar inte om dig. Även om det såklart påverkar dig och det vi anhöriga måste göra för att leva ett anständigt liv är att förhålla oss till detta, att hitta strategier som funkar för oss.

Vi kommer använda olika strategier men Du har rätt att leva ditt liv som du önskar, du har rätt att inneha huvudrollen i ditt liv.

Denna prosasamling hjälper inte min son ur sitt missbruk men den hjälper mig att andas.

Julie-Om att växa upp med en förälder som inte räcker till.

Gunilla O. Wahlström (2006)

En bok som har romanens form men som bygger på verkliga händelser och ger en inblick i hur barn kan ha det idag. Julie växer upp med en psykiskt sjuk mamma.Boken bygger på autentiska händelser som några personer valt att berätta om och beskriver på ett bra sätt hur det kan vara att växa upp med en förälder som är psykiskt sjuk.

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 Like Any Other Family? Everyday Life Experiences of Mothers of Adults with Severe Mental Illness in Sweden

Piuva K, Brodin H (2020)

Abstract
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers' experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers' experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.

Kan anhöriga samarbeta med ogin offentlig omsorg?

Sundström, G. (2015)

Eventuellt stöd till anhöriga blir en kommunal fråga och tidigare fanns, med stor lokal variation och skönsmässighet, många anhörigvårdare formellt anställda som vårdbiträden ("anhörigsamariter"), en billig lösning för kommunen och välkommet för de anhöriga. Numera nästan avskaffat, skriver Gerdt Sundström här i en debatterande artikel om anhörigvårdare.

Kategorisering av barn i förskoleåldern – styrning och administrativa processer

Lutz, Kristian (2009)

The present thesis investigates, analyses and critically discusses the manner in which children with special needs are categorised in the Swedish preschool. The emergence of the category and its construction depends on a number of truths concerning children, related to historical and cultural processes in society. A main focus of the thesis is to investigate how legitimacy is established for the practice of defining deviance among preschoolers, and analyse the knowledge and rationalities that prevail in discursive practice. As part of this, the ways of defining children with special needs as a group are clarified, as well as the administrative procedures for handling their cases throughout the organisation. The study combines two strands within discourse analysis: classical discourse analysis with origins in Foucaults work and critical disourse analysis (CDA). The concept governmentality was used to make an analytical matrix, adapted to prescool practices. Data has been collected in a disadvantaged district belonging to the conurbation of a Swedish major city. Empirical material includes recording of an administrative meeting, application documents, interviews and national policy documents. The study shows that the categorisation have different effects and functions in different contexts. Implemental perspective: The practice of development evaluation of preschoolers has increased the written documentation, often based on techniques originating in compulsory school. These techniques are frequently ill adapted to the curriculum of the Swedish preschool, which emphasise the competent child and clearly encourages the child's agency in preschool activities. Evaluation techniques also play the role of an incentive driving towards increasing individualisation. Educators tend to distance themselves from generalising concepts, and often assume a relational standpoint to defining deviance in children, but adapt to techniques that require a more individually based practice, which places the problems with the child. When parents consent to submit application documents, power is transformed to a range of professional actors, and a client-expert relationship is established. Administrative perspective: On the management level, the child primarily is subject to an economical rationality, and is expected to fit into existing preschool activities. The empirical material of this thesis does not display the inclusive perspective which occupies such a prominent position in special education discussions concerning compulsory school. The administrative conversation observed in the study was characterised by a quantitative approach, concerning resources for children who are considered deviant. Discussions at the meeting did not concern any aspect of the quality of the support offered, and the relationship between children and educators was reduced to a number of resouce hours per child. Societal (professional) perspectives: In an analysis of how resources for children with special needs are allocated in the city district, results will depend on which type of knowledge and rationalities are judged to be legitimate. Children who received a diagnosis delivered by a physician, or who are in the course of being investigated at the habilitation centre, obtain the largest support measures. A pattern supported by national policy documents, who constitute a steering mechanism towards implementation in educational establishments. Development evaluations in preschool can be seen as a step in Foucaults term psycomplex , where psychology is manifested in the institutions dealing with preschool children and their activities. The close historical link between pedagogy and developmental psychology, combined with a general development in society towards giving the individual perspective a central position, may contribute to the dominance of psychiatric assesments in explaining deviance among preschoolers. - See more at: http://www.skolporten.se/forskning/avhandling/kategoriseringar-av-barn-i-forskolealdern-styrning-administrativa-processer/#sthash.qpaeHiJ3.dpuf

KBT inom barn och ungdomspsykiatrin

Öst L-G. (2010)

Kognitiv beteendeterapi (KBT) är en alltmer efterfrågad behandlingsform. Boken beskriver hur KBT kan tillämpas vid en rad olika psykiatriska diagnoser: separationsångest och paniksyndrom, generaliserat ångestsyndrom, specifi ka fobier, social fobi, tvångssyndrom, depression, beteendestörning och trotssyndrom, ADHD, ätstörningar, tics och Tourettes syndrom samt autism och självskadande beteende. Tillstånden beskrivs utifrån gällande diagnostiska kriterier, därefter visas hur KBT-modellen och beteendeanalysen kan se ut för respektive tillstånd och hur behandlingen kan läggas upp. Till de olika diagnoserna finns kliniska fallvinjetter. Boken avslutas med en översikt av det empiriska stödet för KBT vid de olika psykiska störningarna hos barn och ungdomar. Boken är avsedd som kursbok för all grundutbildning inom psykoterapi med KBT-inriktning. Den är också lämpad för professionellt verksamma behandlare.

Group-based parent training programmes for improving emotional and behavior adjustment in children from birth to three years old

Barlow J, Smailagic N, Ferriter M, Bennett C, Jones H. (2010)

BACKGROUND:
Emotional and behavioural problems in children are common. Research suggests that parenting has an important role to play in helping children to become well-adjusted, and that the first few months and years are especially important. Parenting programmes may have a role to play in improving the emotional and behavioural adjustment of infants and toddlers. This review is applicable to parents and carers of children up to three years eleven months although some studies included children up to five years old.
OBJECTIVES:
To:a) establish whether group-based parenting programmes are effective in improving the emotional and behavioural adjustment of children three years of age or less (i.e. maximum mean age of 3 years 11 months); b) assess the role of parenting programmes in the primary prevention of emotional and behavioural problems.
SEARCH STRATEGY:
We searched CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, Sociofile, Social Science Citation Index, ASSIA, National Research Register (NRR) and ERIC. The searches were originally run in 2000 and then updated in 2007/8.
SELECTION CRITERIA:
Randomised controlled trials of group-based parenting programmes that had used at least one standardised instrument to measure emotional and behavioural adjustment.
DATA COLLECTION AND ANALYSIS:
The results for each outcome in each study have been presented, with 95% confidence intervals. Where appropriate the results have been combined in a meta-analysis using a random-effects model.
MAIN RESULTS:
Eight studies were included in the review. There were sufficient data from six studies to combine the results in a meta-analysis for parent-reports and from three studies to combine the results for independent assessments of children's behaviour post-intervention. There was in addition, sufficient information from three studies to conduct a meta-analysis of both parent-report and independent follow-up data. Both parent-report (SMD -0.25; CI -0.45 to -0.06), and independent observations (SMD -0.54; CI -0.84 to -0.23) of children's behaviour produce significant results favouring the intervention group post-intervention. A meta-analysis of follow-up data indicates a significant result favouring the intervention group for parent-reports (SMD -0.28; CI -0.51 to -0.04) but a non-significant result favouring the intervention group for independent observations (SMD -0.19; CI -0.42, 0.05).
AUTHORS' CONCLUSIONS:
The findings of this review provide some support for the use of group-based parenting programmes to improve the emotional and behavioural adjustment of children with a maximum mean age of three years eleven months. There is, insufficient evidence to reach firm conclusions regarding the role that such programmes might play in the primary prevention of such problems. There are also limited data available concerning the long-term effectiveness of these programmes. Further research is needed.

Growing Up and Growing Old. Ageing and Dependency in the Life Course

Hockey, J., James, A. (1993)

Ranging across disciplinary boundaries, this book analyzes metaphors of dependency in differing contexts - the body, the family, work and leisure. Combining a robustly critical analysis with breadth of interdisciplinary sweep, Growing Up and Growing Old challenges the stigmatizing role that stereotypes can play in the lives of particular groups of people.

Growing up with parents who have learning difficulties

Booth, W., & Booth, T. (1998)

For this article we drew on material from a study in which we explored how people who were brought up in a family headed by a parent or parents with learning difficulties managed the transition to adulthood. Using evidence from in-depth interviews, we provided an assessment of how the now-adult children came through what would generally be seen as a risk-filled upbringing. Despite the problems they encountered in their childhood, many of which originated outside the home, most of the informants had maintained a valued relationship with their family and remained close to their mother.

Gråtens betydelse för patienter och närstående i palliativ hemsjukvård [Lic.].

Rydé, K. (2007)

AbstraktGråt är vanlig bland patienter och närstående men sällan studerat i palliativ vård. Gråten kan vara ett sätt för patienter och deras närstående att uttrycka sorg och hantera en situation fylld av stress som är orsakad av förluster, många allvarliga symtom och en nära förestående död.Studiernas övergripande syfte var att bidra till en djupare förståelse för vilken betydelse gråten har för patienter och deras närstående i palliativ hemsjukvård: Vad innebär gråten och hur påverkar den de berörda? Bandinspelade intervjuer gjordes med 14 patienter med cancersjukdom och 14 närstående i palliativ hemsjukvård. För att få en djupare förståelse genomfördes arbetet med ett hermeneutiskt metodologiskt angreppssätt enligt Gadamer.Resultatet visade att patienterna (studie I) beskrev olika dimensioner och funktioner av gråt; Intensiv och förtvivlad gråt för att ge uttryck för akuta behov: Stilla och sorgsen gråt som medvetet förlöste känslor; Tyst och tårlös gråt som en skyddande strategi. Som en tolkning av helheten sågs patienternas gråt (studie I) som ett sätt att uttrycka en inre känslomässig kraft, framkallad av olika faktorer, som orsakade förändringar i den nuvarande inre balansen. Genom att gråta öppet men också inombords skapades eller upprätthölls balansen. Studie (II) visade att de närstående upplevde att gråten var beroende av olika förutsättningar som attityder och mod, tid, trygghet, ärliga och tillitsfulla relationer. Omskakande och oroande händelser, utmattning i brist på egen tid och sympati från andra var omständigheter som utlöste gråten. De närstående försökte göra det bästa möjliga för patienten genom att anpassa eller dölja gråten, allt för att underlätta bördan och skapa en positiv motvikt till lidande och sorg. Tolkningen av helheten (studie II); närståendes gråt kunde vara ett uttryck för att dela något tillsammans för gemenskap, tröst och stöd eller att söka sig till ensamhet för enskildhet och återhämtning.Sammanfattningsvis kan gråten ses som en copingstrategi eftersom den reducerar spänningar och skapar befrielse, upprätthåller balans, ger tröst, ny energi och tillfällen för enskildhet. Det är ett sätt att uttrycka lidande men på samma gång kräver gråten energi och ger känslor av skam.En viktig del i professionens arbete bör därför vara att tillåta gråten, lyssna, vara närvarande, uppmuntra uttryck av känslor men också ge utrymme för enskildhet. Läkaren, sjuksköterskan och andra i teamet kan lindra patientens och närståendes känslor av skam och sårbarhet genom att bekräfta, legitimera olika uttryck för gråt och därmed skapa en tolerant, säker och trygg omgivning.

Guilt and shame in end-of-life care : the next-of-kin´s perspective

Werkander Harstäde, C. (2012)

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.
Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.
Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.
Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Guilt and shame in end-of-life care : the next-of-kin´s perspective

Werkander Harstäde, C. (2012)

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.

Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.

Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Guilt and shame in end-of-life-care – the next-of-kin’s perspective

Harstäde Werkander, Carina (2012)

Akademisk avhandling

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.

Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.

Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Haja ADHD : Om nuets förbannelse, hjärnans skärmsläckare och vikten av dagdrömmeri

Björn Roslund (2018)

Haja adhd tar med dig på en spännande och initierad djupdykning i hur det är vid adhd och inte minst varför.

Varför har personer med adhd så svårt för att njuta av framtida segrar, och hur hänger det ihop med avhopp från utbildningar och drogers lockande låga?

Är det psykedeliska drömspel som hjärnans skärmsläckare (default mode network) bjuder oss på bara ett ointressant bakgrundsbrus, eller rent av huvudpersonen i kunskapen om vad adhd egentligen är?

Hur kan jammande jazzmusiker skapa förståelse för hur grupper av hjärnregioner spelar tillsammans, men också duckar för varandra?

Hur kan adhd vara så starkt kopplat till risker, eller rent av undergångsfaktorer, men samtidigt ha psykiatrins bästa prognos?

Med energi och lätthet förmedlar psykiatern Björn Roslund avancerad kunskap som gör skillnad i hur vi ser på och kan leva med adhd. Boken är skriven för dig som själv har adhd, anhöriga och för alla nyfikna som vill lära sig mer.

Han är god som saltlakrits: om att få ett syskon med cystisk fibros

Ranung, Moa (2019)

Barn och ungdom

Lillebror har hamsterkinder och stjärnögon. Han har också en ovanlig sjukdom som heter cystisk fibros. Den syns inte på honom men han kommer alltid att ha den. Ibland pussar jag honom på pannan. Då smakar det jättemycket salt. Han är god som saltlakrits. Boken är för barn eller syskon till barn med cystisk fibros, eller andra som har ett barn med cystisk fibros i sin närhet. På ett pedagogiskt och lekfullt sätt förklaras sjukdomen genom en storebrors ögon

Handbook for the study of parental acceptance and rejection

Rohner R. (1991)

A Handbook containing description of the theoretical basis for study of parental acceptance and rejection, interpersonal relationships, and mental health outcomes related to these relationships. Measures to assess parent-child relations, intimate partner relations, behavioral control, discipline, parenting education, and other issues are included in the Fourth Edition of the Handbook.

Handbook of bereavement research: consequences, coping and care

Hansson, R.O., Stroebe, W. & Schut, H. (2001)

New research continues to challenge our assumptions about the fundamental nature and course of grief: its roots in our biology, our emotions, our cognitions, and our social interactions. The Handbook of Bereavement Research provides a broad view of diverse contemporary approaches to bereavement, examining both normal adaptation and complicated manifestations of grief.
In this volume, leading interdisciplinary scholars focus on three important themes in bereavement research: consequences, coping and care. In exploring the consequences of bereavement, authors examine developmental factors that influence grief both for the individual and the family at different phases of the life cycle. In exploring coping, they describe exciting new empirical studies about how people can and do cope with grief, without professional intervention. Until recently, intervention for the bereaved has not been scientifically guided and has become the subject of challenging differences of opinion and approach.
Chapters in the care section of the volume critically examine interventions to date and provide guidance for assessment and more empirically guided treatment strategies. The Handbook provides an up-to-date comprehensive review of scientific knowledge about bereavement in an authoritative yet accessible way that will be essential reading for researchers, practitioners, and health care professionals in the 21st century.

Hannahs mamma får en fobi

Alphonse Elisabet (2011)

text och illustrationer: Elisabet Alphonse

barn/ungdom

Boken handlar om Hannahs mamma och hur en getingfobi kan påverka en förälders vardag.

Health and Care in an Enlarged Europe.

Alber J, Köhler U. (2004)

Examining quality of life in 28 European countries, including the acceding and candidate countries as well as the current Member States of the EU, this report explores how Europeans perceive their health, to what extent they display healthy and unhealthy lifestyles, how easily they can access their national health care system and how satisfied they are with its performance.The analysis is based on data from the European Commission's Eurobarometer survey carried out in the acceding and candidate countries in Spring 2002 and standard EU 15 Eurobarometers. A summary of this report is also available

Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish general population

Berglund E, Lytsy P, Westerling R (2015)

BACKGROUND: Informal caregiving by relatives is a great resource for individuals
as well as for society, but the caregiving role is associated with health
problems for the caregiver. This study aimed to compare caregivers' self-rated
health, number of recent days with poor health and psychological wellbeing with
that of non-caregivers in a general Swedish population.
METHODS: From 2004 to 2013, 90,845 Swedish people completed a postal
questionnaire about their health, number of recent days with poor health during
last month, psychological wellbeing and if they were performing caregiving or
not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and
negative binomial regression models were used to investigate associations between
being a caregiver or not and health and wellbeing. Negative binomial regression
was used to assess the relation between caregiver status and recent days with
poor health or functioning.
RESULTS: Eleven percent reported having a caregiving role. Caregivers reported
poorer self-rated health compared to non-caregivers, also in adjusted models;
odds ratio (OR): 1.07 with a 95% confidence interval (CI): 1.01-1.13. Caregivers
also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22,
CI: 1.15-1.30. Caregiving status was associated with more recent days with poor
physical health and more recent days with poor mental health.
CONCLUSIONS: This study suggests that caregivers have worse perceptions in
self-rated health and psychological wellbeing compared with non-caregivers,
indicating that the role of caregiver is adversely associated with health. This
association also appears in terms of reporting days of poor health in the last
month. The underlying mechanism of these associations, including the potential
detrimental health effects of being a caregiver, needs to be investigated in
longitudinal studies.

Health at a glance 2011. OECD indicators

OECD (2011)

This second edition of Government at a Glance almost doubles the number of available indicators of OECD governments' performance, to nearly 60.
The indicators compare the political and institutional frameworks of government across OECD countries as well as government revenues and expenditures, employment, and compensation.
This publication provides evidence for policy makers by measuring the performance of governments in a comparative perspective. This also allows countries to benchmark their performance against other countries.
There are also indicators describing government policies and practices on integrity, e-government and open government, and introduce several composite indexes summarising key aspects of public management practices in human resources management, budgeting, procurement, and regulatory management.

Health Behaviors Among Baby Boomer Informal Caregivers

Hoffman GJ, Lee J, Mendez-Luck CA. (2012)

Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors -- smoking, sedentary behavior, and regular soda and fast-food consumption -- as well as a global health-risk measure. Results: Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Implications: Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness.

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care

Ekstedt M, Stenberg U, Olsson M, Ruland CM (2014)

Being a family member of a patient who is being treated in an acute care setting
for cancer often involves a number of challenges. Our study describes Norwegian
cancer care health professionals' perceptions of family members who served as
family caregivers (FCs) and their need for support during the in-hospital cancer
treatment of their ill family member. Focus group discussions were conducted with
a multidisciplinary team of 24 experienced social workers, physicians, and nurses
who were closely involved in the patients' in-hospital cancer treatment and care.
Drawing on qualitative hermeneutic analysis, four main themes describe health
professionals' perceptions of FCs during the patient's in-hospital cancer care:
an asset and additional burden, infinitely strong and struggling with
helplessness, being an outsider in the center of care, and being in different
temporalities. We conclude that it is a challenge for health care professionals
to support the family and create room for FC's needs in acute cancer care. System
changes are needed in health care, so that the patient/FC dyad is viewed as a
unit of care in a dual process of caregiving, which would enable FCs to be given
space and inclusion in care, with their own needs simultaneously considered
alongside those of the patient.

Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia

Dahlrup B, Nordell E, Steen Carlsson K, Elmståhl S. (2014)

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia

Dahlrup B, Nordell E, Steen Carlsson K, Elmståhl S. (2014)

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

Health Education Needs of Patients with Schizophrenia and their Relatives

Gumus, Aysun Babacan (2008)

The purpose of this study was to determine the health education needs of patients with schizophrenia and their relatives. A total of 80 patients and 80 relatives were included in the study. The data were collected using Descriptive Characteristics Questionnaire and Evaluation of Health Educational Needs Form. The subjects that patients and their relatives felt they had the greatest need to learn more about were general information about schizophrenia, coping with symptoms of schizophrenia, and communication and social relationships. It was determined that the patients' health education needs were affected by their employment status, income level, and longest place of residence, and their relatives' health education needs, by their marital status, degree of family relationship, educational level, income level, whether or not they were a member of an association or group, and whether or not they had received education about schizophrenia. On the basis of the health education needs identified by the patients with schizophrenia and their relatives, a health education program should be prepared.

Health-promoting conversations about hope and suffering with couples in palliative care.

Benzein, E., & Saveman, B. (2008)

BACKGROUND:
Families living with a dying relative face existential challenges which need to be met by caregivers in a dialogue.
AIM:
To describe couples' experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care.
METHOD:
Data comprised semi-structured evaluative interviews with six couples. Each couple together had previously participated in three health-fostering conversations with nurses. Data were analyzed by content.
RESULT:
Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. It gave them the opportunity to unburden themselves, as well as a way of learning and finding new strategies for managing daily life.
CONCLUSION:
Health-promoting conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and families in the palliative context.

Hela människan-hjulet en samtalsmodell för livskunskap & känsla av sammanhang

Hagborg, E., Jonsson, K Y., & Salmson, K. (2010)

Hela människan-hjulet är en handfast och praktiskt inriktad metodbok för alla som vill arbeta med stödgrupper för barn, unga, vuxna eller familjer. För att på ett ansvarsfullt sätt kunna arbeta med stödgrupper krävs grundläggande kunskaper inom många olika livsområden. Detta belyses i bokens teoretiska första del som handlar om genus och etik, alkohol och droger, fattigdom och folkhälsa, stödfunktioner och prevention, lek, kreativitet, livsåskådning samt känslor. På denna teoretiska kunskapsbas, tron på mänskliga rättigheter och speciellt barnkonventionen, vilar metodiken i Hela människan-hjulet. I andra delen finns instruktioner och arbetsmaterial till de gruppträffar som utgör den praktiska tillämpningen av metoden. Materialet kan även laddas ner från www.studentlitteratur.se/helamanniskanhjulet. Metoden är utarbetad och prövad i praktiska och professionella sammanhang mot bakgrund av stor teoretisk kunskap och passar yrkesverksamma inom de flesta områden inom socialt arbete eller stödjande verksamheter.

Held to ransom : parents of self-harming adults describe their lived experience of professional care and caregivers.

Lindgren B-M, Åström S, Hällgren Graneheim U. (2010)

The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.

Help for bereaved children: a preventative approach

Davies, C. (1996)

This paper describes the work undertaken with children and adolescents who have lost a significant person in their lives through death. The author works with the paediatric nurse member of a palliative care team running groups for children and adolescents who have been bereaved.

The aim of the project is to invite the child/adolescent as soon as possible after bereavement to participate in groups with others who are grieving. This groups allow participants to express their feelings through art, play and discussion in a safe and confidential environment.

It is hoped by using a preventative approach such as this, that the incidence of some of the results of unresolved childhood grief, such as failed relationships, depression and ill-health in adult life can be minimised.

Key worker services for disabled children: the views of parents

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2007)

This study reports the findings from 68 interviews with parents of disabled children who are users of seven key worker schemes in England and Wales. The interviews which lasted for one hour each, were tape-recorded, transcribed and analysed according to both a priori and emerging themes. The findings from this study have implications for policy and practice, for example, the necessity of protected time for key workers, the necessity of conveying clear information about the key worker's role, the importance of access to training and information for the key worker, the need for key workers to be proactive, and for their involvement in care plan and review meetings.

Key worker services for disabled children: the views of staff

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2006)

Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N = 50), managers (N = 7) and members of multi-agency steering groups (N = 32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.

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.

Komet för föräldrar. En randomiserad effektutvärdering av ett föräldraprogram för barns beteende problem.

Kling Å, Sundell K, Melin L, Forster M. (2006)

En av de viktigaste riskfaktorerna för våldsbrottslighet är tidiga beteendeproblem. Barn som är okoncentrerade och bråkiga riskerar i högre utsträckning att misslyckas inlärningsmässigt och få kamratproblem. Det ökar i sin tur risken för mer allvarliga former av antisociala aktiviteter som alkohol- och drogmissbruk, kriminalitet samt psykisk ohälsa. Det finns alltså påtagliga fördelar med att så tidigt som möjligt försöka hjälpa barn som ofta bråkar och bryter mot normer. Föräldraträning är den bästa metoden för att minska dessa problem hos barn. Ingen annan metod har bättre forskningsstöd. I denna rapport undersöks om det i Sverige utvecklade föräldraträningsprogrammet Komet kan hjälpa föräldrar att bättre hantera beteendeproblem hos det egna barnet. Utvärderingen omfattar Komet i ordinarie verksamhet och har genomförts i form av en randomiserad kontrollerad studie med 159 föräldrar till barn i åldrarna tre till tio år som av föräldrarna bedömdes vara bråkiga och trotsiga. Familjerna lottades till ett av tre alternativ: den ordinarie versionen av Komet, en kortversion av Komet samt en grupp som fick vänta en termin på behandling (väntelista). Data samlades in före interventionernas start samt efter fyra respektive tio månader. Den sista mätningen omfattade endast familjer som fått någon av Komet-versionerna. De familjer som ej deltagit i datainsamlingen vid fyra respektive tio månader (13%) har inte tillåtits snedvrida randomiseringen. I stället har deras sista mätvärde flyttats fram och använts för bortfallet. Detta sätt att hantera bortfall är det rekommenderade. Resultaten visar att Komet ökat föräldrarnas föräldrakompetenser vid fyramånadersmätningen samt minskat barnens beteendeproblem och ökat deras sociala kompetenser. Jämfört med gruppen som befunnit sig på väntelista hade den ordinarie versionen av Komet starka effekter på föräldrakompetenser (ES =.89) och beteendeproblem (ES =.68) och medelstarka på sociala kompetenser (ES =.41). För kortversionen av Komet var motsvarande effekter svaga till medelstarka (ES =.39,.35 resp.14). Effekterna av Komet förefaller stabila eller ökande efter i genomsnitt tio månader. Efter kompensation för väntelistans resultat efter fyra månader (motsvarande resultat efter tio månader saknas) har det ordinarie Komet mycket starka effekter för föräldrakompetenser (ES = 1.05) och barns beteendeproblem (ES =.92) samt starka för sociala kompetenser (ES =.69). För kortversionen av Komet var effekterna något lägre (.61,.55 resp.38). De positiva effekterna av den ordinarie versionen av Komet är enligt två meta-analyser i nivå med eller överträffar de genomsnittliga effekterna i andra föräldraträningsprogram. Barnens minskade beteendeproblem kunde kopplas till de förändrade föräldrabeteendena; ju bättre föräldrakompetens föräldrarna visade desto färre beteendeproblem hos barnen. Sökord. Föräldraträning, bråkiga barn,

Kommunernas insatser för personer med psykiska funktionshinder

Socialstyrelsen (2003)

Psykiatrireformen trädde i kraft 1995. Reformen syftade till att förbättra livssituationen för personer med psykiska funktionshinder och öka deras möjligheter till gemenskap och delaktighet i samhället. Reformen omfattar främst personer som bedöms ha långvariga och allvarliga funktionsnedsättningar p.g.a. en psykisk sjukdom och som är i behov av stöd-, vård- och rehabiliteringsinsatser för att få en bättre livssituation. De åtgärder som föreslogs i propositionen skulle inriktas på att ge ett mer effektivt och samordnat samhällsstöd till målgruppen. Kommunernas ansvar förtydligades när det gäller att planera och samordna de insatser som personer med psykiska funktionshinder behövde. Förtydligas gjorde också kommunernas ansvar för att utveckla boendeformer och verksamheter för sysselsättning.

Regeringen konstaterade dock 2003 att det fortfarande finns brister i den psykiatriska vården och den sociala omsorgen. I oktober 2003 tillkallade därför regeringen (dir. 2003:133) en nationell psykiatrisamordnare med uppgift att se över väsentliga frågor inom vård, social omsorg och rehabilitering av psykiskt sjuka och personer med psykiska funktionshinder.

Socialstyrelsens utvärdering av psykiatrireformen (1999) visade att den hade fått en god start men ännu inte "satt sig". Det ansågs dock viktigt att reformarbetet fortsatte på bred front både lokalt och nationellt. I utvärderingen konstaterades vidare att det behövdes en aktiv, tydlig och sammanhållen tillsyn för att stödja en god verksamhetsutveckling.

Inom ramen för det Nationella programmet för tillsyn över socialtjänsten togs 2001 ett första steg till en utveckling av tillsynen i denna riktning. Länsstyrelserna och Socialstyrelsen beslutade då att kraftsamla sina resurser i en gemensam tillsyn över kommunernas insatser för personer med psykiska funktionshinder. Även kommunernas ansvar för hälso- och sjukvård har ingått i tillsynen. Kraftsamlingen har genomförts i form av ett tillsynsprojekt under åren 2002–2004. Samtliga tjugoen länsstyrelser har deltagit, dock i olika omfattning. Fyra delgranskningar har genomförts:

Tillsyn av samtliga kommuners planering av verksamheten för personer med psykiska funktionshinder på ledningsnivå, våren 2002.
Tillsyn av socialtjänstens arbete med enskilda personer med psykiska funktionshinder i ett urval av kommuner, 2002–2003.
Tillsyn av kvalitet och innehåll i verksamheter för boende och sysselsättning i ett urval av kommuner, 2002–2003.
Uppföljning av den första delundersökningen på några problemområden, hösten 2004.
För att åstadkomma en kraftsamling krävs även en samverkan mellan den sociala tillsynens aktörer och tillsynen över kommunernas hälso- och sjukvård. För det senare svarar Socialstyrelsens sex regionala tillsynsenheter. Även kommunernas ansvar för viss hälso- och sjukvård ingår därför i tillsynen.

Projektet har haft expertstöd från Socialpsykiatriskt kunskapscentrum i Västerbotten. En referensgrupp till tillsynsprojektet med representanter från Riksförbundet för Social och Mental Hälsa (RSMH) och Schizofreniförbundet har följt tillsynen och deltagit i såväl planeringen av tillsynsprojektet som i analysen av resultatet.

Tillsynsfrågor
De områden som granskats i tillsynen utgår från kommunernas ansvar för personer med psykiska funktionshinder. Huvudfrågan i tillsynen har varit: Är verksamheten så beskaffad att tillräckligt goda förutsättningar skapas för att personer med psykiska funktionshinder "får möjlighet att delta i samhällets gemenskap och att leva som andra" (5 kap. 7 § SoL)? Fyra huvudfrågor har ansetts vara centrala för tillsynen. De är:

Tar kommunerna sitt ansvar för att skaffa sig kännedom om personer med psykiska funktionshinder och nå de personer som har behov av socialtjänstens insatser?
Tar kommunerna sitt ansvar att styra och planera sin verksamhet för personer med psykiska funktionshinder?
Tar kommunerna sitt ansvar att tillhandahålla ett varierat utbud av insatser med god kvalitet?
Tar kommunerna sitt ansvar för att enskilda personer med psykiska funktionshinder får ett behovsstyrt, samordnat och rättssäkert stöd?

Kommunernas stöd till anhöriga som vårdar äldre : ett brukarperspektiv. Meddelande 2001:30

Seitl, C. (2001)

Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.

Kommunernas stöd till anhöriga som vårdar äldre : ett brukarperspektiv. Meddelande 2001:30

Seitl, C. (2001)

Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. Övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.

Kommunikation genom teknik–ur ett vardagsperspektiv

Rydeman, B., & Zachrisson, G. (2004)

En studie i två delar rörande målgruppen barn med grava rh – kontaktanvändare: Del 1: Inventering och beskrivning av dynamiska kommunikationsprogram och styrsätt (bl.a. MindMouse/CyberLink), del 2: Kommande interventionsstudie.

Projektet har en egen hemsida www.kommed.nu där du kan läsa mer. Där finns bl a rapporter och en mängd annan intressant information att hämta.

Projektansvariga: Gerd Zachrisson DART och Bitte Rydeman, DAKO i Halland.

Medel: 2-årigt projekt med stöd från HI - "IT i praktiken"

Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar

Wilder, J (2014)

Nationellt kompetenscentrum anhöriga, Nka, har fått i uppdrag av Socialdepartementet
att utveckla ett nationellt kunskapsstöd till föräldrar och anhöriga till barn och ungdomar med flerfunktionsnedsättningar. Syftet med kunskapsstödet är att underlätta kunskapsinhämtning, erfarenhetsutbyte och nätverkskontakter för anhöriga

Kommunikativ omvårdnad

Boel Heister Trygg (2008)

Om alternativ och kompletterande kommunikation för personer med demens, förvärvad hjärnskada och grav utvecklingsstörning

Kompisboken om sorg

Lotta Polfeldt (2006)

För de allra flesta händer det inte. Men varje år mister fler än 3 000 barn och ungdomar en förälder eller ett syskon. Då är det viktigt att ha bra kompisar. Men hur ska en bra kompis vara när något så svårt händer? Finns det saker man helst inte ska göra eller säga? Törs man fråga om dödsfallet? Kan man vara precis som vanligt och skratta och skoja? I den här boken får du träffa några barn och ungdomar som förlorat en nära anhörig. Hur var deras kompisar då? Vad var bra och vad var kanske inte lika bra? Du får också träffa några kompisar.

Kompletterande anknytningsperson på förskolan

Hagström, B. (2010)

Barn till föräldrar med psykisk ohälsa är en eftersatt grupp. Syfet med denna studie är att studera pedagogers utveckling som kompletterande anknytningsperson i relation till en tre årig fortbildning.Fortbildnigen ägde rum samtidigt som pedagogerna arbetade och innehöll teorier om barns utveckling, nämligen anknytningsteori, Affektteori samt Sterns teori om barns självutveckling.En narrativ metod användes och narrativen analyserades i relation till fortbildningens innehåll, teorier om pedagogers lärande och teorier om tidig utveckling.
Resultatet diskuteras utifrån pedagogers arbete med utsatta barn i förskolan, lärarutbildningens innehåll och fortbildning samt samverkan.

Kort om ADHD hos barn och vuxna. En sammanfattning av Socialstyrelsens kunskapsöversikt

Mossler & Kadesjö (2004)

ADHD – uppmärksamhetsstörningar och impulsivitet/hyperaktivitet (attention deficit hyperactivity disorder) – bedöms vara ett av de mest studerade tillstånden inom medicinen. Man har beräknat att ungefär tre till sex procent av alla barn i skolåldern har ADHD. Det är ca två till tre gånger vanligare med ADHD hos pojkar än flickor. Huvudsymtomen vid ADHD är uppmärksamhetsstörning, impulsivitet och hyperaktivitet/överaktivitet. Barn med ADHD har svårt att vänta, att kontrollera känslor och humör. Många har ett oförutsägbart beteende. Flertalet har problem med att planera
och organisera sin tillvaro – har brister i vad som kallas hjärnans exekutiva funktioner. En betydande andel barn med ADHD har svårigheter i samspelet med andra. De kan ha svårt att finna meningsfulla fritidsaktiviteter. Det är mycket vanligt att barn och ungdomar med ADHD är ängsliga, osäkra och saknar tilltro till sin förmåga. Många misslyckanden ökar risken för uppgivenhet, oro och depression.

Kortare vårdtid efter utbildning i affektiv sjukdom

Tidemalm, D., Johnson, L., Hulterström, A., Omerov, S., & Åberg Wistedt, A. (2007)

Vårdtiden blir kortare om patienter med affektiv sjukdom och deras närstående erbjuds utbildning. Det visar resultat av en undersökning vid Affektivt centrum i Norra Stockholms psykiatri, S:t Göran, vid jämförelse av vårdkonsumtion hos patienter före och efter deltagande i ett utbildningsprogram.

Deltagarnas subjektiva tillfredsställelse med utbildningen var hög. Många i såväl patient- som närståendegruppen uppgav att de kunde använda kunskaper från utbildningen till att hantera sjukdomen.

Kort-tids-boende. En kameleont i äldreomsorgen

Westlund, Peter (2009)

Ett kort-tids-boende är förbundet med föreställningen att behoven inte bara är omfattande, utan också övergående och kortvariga. Så är det i princip. I realiteten tycks många korttidsvistelser handla om att man inte vet hur det förhåller sig med behoven – om de är övergående eller inte. Av den anledningen tenderar korttidsboendet att vara både en väntplats och en vändplats. En plats för väntan, såväl aktivt som passivt, på att flytta till särskilt boende och en plats varifrån den enskilde vänder hemåt igen – en vändplats.

Ett korttidsboende har således många och skiftande funktioner och kan se ut lite hur som helst. Det kan vara alltifrån insprängda platser till relativt smalt specialiserade enheter, därav benämningen kameleont.

Korttidsplats – vårdform som söker sitt innehåll

Meinow, B., & Wånell, S. E. (2011)

Denna rapport har kommit till på uppdrag dels från Södermalms stadsdelsförvaltning,
dels Äldreförvaltningen i Stockholms stad. Bakgrunden
är önskemålet från såväl Södermalms stadsdelsnämnd som stadens
äldrenämnd att se vilken roll korttidsvården har och kan ha, och om de
prioriteringar som skett under 2000-talet gagnat de äldre. Korttidsplats,
som är det begrepp Socialstyrelsen rekommenderar, har olika funktioner,
och inkluderar korttidsvård efter sjukhusvistelse, växelvård, avlastning
av anhörig och vård i livets slutskede.
På uppdrag av Södermalms stadsdelsförvaltning har en randomiserad
studie genomförts där de som ansökte om korttidsplats men fick avslag
lottades så att hälften, interventionsgruppen, fick korttidsplats medan
kontrollgruppen gick direkt hem med de insatser stadsdelsförvaltningen
beviljat. Denna studie utökades med ett uppdrag från Socialstyrelsen att
studera alla som skrivs ut från sluten vård under en månad till hemmet
på Södermalm. På uppdrag av Äldreförvaltningen har dessa båda studier
kompletterats med en genomgång av artiklar och rapporter om korttidsvård
samt analys av data avseende stadens korttidsvård.
De som kommer till ett korttidsboende befinner sig i en mycket skör
situation i livet. Korttidsplats för återhämtning, mobilisering och fortsatt
rehabilitering efter sjukhusvård utvecklades i hela landet efter Ädelreformen,
och har fortsatt att sedan dess öka i många kommuner. Bidragande
orsak har varit allt färre vårdplatser och kortare vårdtider i den
somatiska vården samt att fler har hemtjänst och färre bor i särskilt
boende.
Andelen äldre som erhåller korttidsplats varierar mellan landets
kommuner, liksom mellan Stockholms stadsdelar. I Göteborg hade 2008
1,4 procent av de som är 65 år och äldre korttidsplats, i Stockholm var andelen
0,25 procent.
I Stockholms stad har antalet som beviljas korttidsplats minskat sedan
2001. Det är främst korttidsvård efter sjukhusvistelse som minskat,
medan korttidsvård som anhörigstöd endast minskat marginellt. Minskningen
är tydligast för de äldre kvinnorna, under en fyraårsperiod 2007-
2010 minskade antalet kvinnor 85 år och äldre som fick korttidsplats från
186 till 82, för männen var minskningen från 116 till 88 personer.
Några skäl till att korttidsplats numera sällan erbjuds efter sjukhusvistelse
är att inte förlänga vårdkedjan och att staden inte erbjuder rehabilitering
inom korttidsvården eftersom rehabilitering i ordinärt boende är
ett landstingsansvar. Effekten kan dock bli att den äldre inte får
tillräcklig tid för att hämta krafter och träna så att hon kan klara sin
vardag bättre själv. Mycket talar för att en ytterligare tids vård för vissa
2
äldre kan vara kostnadseffektiv för samhället och innebära ökad trygghet
för den äldre. Resultaten från den randomiserade studien på Södermalm
tyder bl.a. på
Interventionsgruppen förbättrade sin rörelseförmåga i genomsnitt mer än
de som skrevs ut till hemmet
Andelen som minskade sitt vårdberoende var större i interventionsgruppen
jämfört med dem som skrevs ut till hemmet
Indexvärdet för den hälsorelaterade livskvaliteten ökade för interventionsgruppen,
för dem som skrevs ut direkt till hemmet var den nästan
oförändrad (statistiskt signifikant skillnad).
Signifikant större förbättring när det gäller oro/nedstämdhet samt förmågan
att klara huvudsakliga aktiviteter bland de äldre som fick korttidsplats.

Inga skillnader i kostnad för äldreomsorg (korttidsplatsen inräknad!).
Tydlig tendens till att äldre som hade fått korttidsvård blev inlagda på
sjukhus i mindre utsträckning under ett år efter utskrivning jämfört med
de äldre som skrevs direkt ut till hemmet.
Tydlig tendens till en lägre dödsrisk under ett års tid efter utskrivning
bland äldre som hade fått korttidsvård.
Det blev således inte dyrare för interventionsgruppen, som fick korttidsplats,
än för gruppen som inte lottades att få den insatsen, däremot blev
det bättre för interventionsgruppen i flera avseenden.
En form som nästan försvunnit i Stockholms stad är korttidsplats i
väntan på plats i vård- och omsorgsboende. Detta skäl till att bevilja korttidsplats
har kritiserats bl.a. av Socialstyrelsen.
Korttidsvården har en viktig roll genom att ge anhöriga avlastning. En
förutsättning för att korttidsvården ska vara en fungerande avlastning för
den anhörige är att den har ett socialt innehåll i vardagen och att den
anhörige också uppmärksammas. Pensionat Hornskroken och Kinesen i
Stockholm är goda exempel. Korttidsboende med denna inriktning måste
fokusera både på den som vistas på korttidsplatsen och den anhörige.
Korttidsvård kan också användas som sviktplats. Det saknas statistik för
denna vårdform, varför det är svårt att bedöma i vilken utsträckning den
utnyttjas så. I Stockholms län finns möjlighet till direktinlägg på geriatrisk
klinik. Det kan finnas skäl att följa upp om korttidsplats skulle
kunna användas när behovet främst är att få vila upp, äta och återhämta
kraft genom god omvårdnad och den geriatriska platsen när det krävs mer
av medicinsk behandling och/eller rehabilitering.
3
Vård i livets slutskede är i Stockholms stad ovanligt i korttidsvården.
Staden saknar korttidsenheter med palliativ inriktning. I stället erbjuds
plats på vård- och omsorgsboende, vilket inte är helt adekvat i den livsfasen.

Beskrivningarna av vardagen på korttidsboendet andas ofta innehållslöshet,
torftighet både i det sociala innehållet och i boendemiljöerna. Det
saknas alltför ofta tydliga beställningar från biståndshandläggaren vad
som är syftet med vistelsen, och genomförandeplaner som visar vad korttidsvården
ska kunna ge. För att korttidsvården ska kunna utvecklas och
få den roll den kan ha behövs tydlighet i beställningen till korttidsvården,
tydlighet i biståndsbeslutet och tydliga genomförandeplaner hos utföraren.

För att detta ska bli möjligt måste korttidsvården få mer renodlade uppdrag,
med inriktning på t.ex. svikt, rehabilitering, avlösning och vård i
livets slutskede. Det krävs mer specialisering, inte att allt blandas på
samma enhet. Viktigt är också att inte blanda personer med demenssjukdom
med dem som är kognitivt klara.

Kris och utveckling

Cullberg, Johan (2001)

Människans liv kantas av psykiska kriser. En del utlösta av plötsliga och oväntade, svåra händelser; andra hör det normala livet till. Krisen är ofta en förutsättning för utveckling och mognad, men den kan också leda till livslång psykisk invaliditet om inte den drabbade får sakkunnig hjälp

Det är trettio år sedan den första utgåvan av Johan Cullbergs klassiska bok Kris och utveckling kom 1975. Den har lästs och uppskattats av hundratusentals svenskar - såväl av studenter som av människor som själva befinner sig i kris eller kommer i kontakt med människor i krislägen. Den har också översatts till flera andra språk.

Mycket i samhället, liksom inom psykiatrin, har förändrats. Det har inneburit att en omarbetning av boken känts angelägen, även om grundstrukturen står kvar. Kvar står också den hoppfulla synen på krisen som en hävstång för den mänskliga utvecklingen. Boken har kompletterats med ett avsnitt om katastrofpsykiatri och sena stressreaktioner av docent Tom Lundin.

Krisstöd vid olyckor, katastrofer och svåra händelser: att stärka människors motståndskraft

Hedrenius, S. & Johansson, S. (2013)

Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.

Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.

Krisstöd vid olyckor, katastrofer och svåra händelser: att stärka människors motståndskraft

Hedrenius, S., & Johansson, S. (2013)

Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.

Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.

Helpful citizens and caring families: Patterns of informal help and caregiving in sweden in a 17-year perspective

Jegermalm, M. and E. J. Grassman (2012)

This article reports on an analysis of informal help and caregiving in Sweden with, for the first time, a focus on patterns of change over 17 years regarding scope, type of caregivers and the recipients of help. The discussion is based on results from a national survey repeated four times between 1992 and 2009. In the 1990s, the figures were stable, but from the late 1990s to 2009, there seems to have been a dramatic increase in the extent of informal help giving. Concerning types of helpers, the patterns implied involvement not only from family members, but also from other types of helpers. Two interpretative perspectives were used in the analysis: the first from recent welfare state changes and the substitution argument; the second from the present debate on civil society and its possible and changing role. These perspectives represent two partly complementary approaches to the understanding of the dynamics of informal involvement in contemporary Swedish society.

Helping your children cope with cancer. A guide for parent and families.

Van Dernoot, P. (2005)

Cancer is bad news. It' s frightening to even think about it. Now think how frightening it would be for your children to know you have cancer. How do you tell them? How do you deal with the trauma and the pain? How do you prepare for the emotional and psychological upheaval a family endures when a parent has cancer? Peter Van Dernoot has gathered the real-life stories and experiences of over twenty parents who have been diagnosed with cancer. They share their deepest fears and their highest hopes as they provide the reader with invaluable advice, guidance and inspiration. Now including all-new stories from parents and advice from professional counselors, this groundbreaking book is a very special gift from families affected by cancer to families affected by cancer

Hemmet som arenan för äldres och funktionshindrades rehabilitering

Tamm, Maret & Lindqvist, Rafael (2004)

Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.

His helping hands-adult daughter's perceptions' of fathers with caregiving responsibility

Eriksson H, Sandberg J, Holmgren J, Pringle K. (2013)

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

Holocaust Icons: Symbolizing the Shoa in History and memory

Stier, O. B. (2015)

The Holocaust has bequeathed to contemporary society a cultural lexicon of intensely powerful symbols, a vocabulary of remembrance that we draw on to comprehend the otherwise incomprehensible horror of the Shoah. Engagingly written and illustrated with more than forty black-and-white images, Holocaust Icons probes the history and memory of four of these symbolic relics left in the Holocaust's wake.

Jewish studies scholar Oren Stier offers in this volume new insight into symbols and the symbol-making process, as he traces the lives and afterlives of certain remnants of the Holocaust and their ongoing impact. Stier focuses in particular on four icons: the railway cars that carried Jews to their deaths, symbolizing the mechanics of murder; the Arbeit Macht Frei ("work makes you free") sign over the entrance to Auschwitz, pointing to the insidious logic of the camp system; the number six million that represents an approximation of the number of Jews killed as well as mass murder more generally; and the persona of Anne Frank, associated with victimization. Stier shows how and why these icons—an object, a phrase, a number, and a person—have come to stand in for the Holocaust: where they came from and how they have been used and reproduced; how they are presently at risk from a variety of threats such as commodification; and what the future holds for the memory of the Shoah.

In illuminating these icons of the Holocaust, Stier offers valuable new perspective on one of the defining events of the twentieth century. He helps readers understand not only the Holocaust but also the profound nature of historical memory itself.

Home Care Services for Sick Children. Family, healthcare and health-economic perspectives

Castor, Charlotte (2019)

Dissertation

Families with sick children often prefer home care to hospital care, and home care services (HCS)
are increasing worldwide with limited evidence on how to provide high quality HCS in different
settings. This thesis aims to provide a comprehensive view of HCS for sick children when provided
by county-based HCS organized to care for adults and children.
A convergent mixed methods design with data-collection 2015–2019 was used. Phenomenographic
analysis of interviews with 36 HCS healthcare professionals showed that caring for children was a
challenging but rewarding task. Hermeneutic phenomenology was used to analyse 37 family
member's lived experience of HCS as a possibility to strengthen family life and health when trustful
alliances were built with HCS healthcare professionals. A review of referrals to HCS during a threeyear period showed that 171 children with various ages, diagnoses and caring needs received HCS.
Calculations of one year's healthcare costs for 32 children who received care both at the hospial
and by HCS showed no increase in costs compared to estimated costs for only hospital care. Annual
productivity losses due to 25 parents' absenteeism from work, estimated from questionnaire-based
data, showed continued productivity losses during periods of HCS.
With trustful alliances between families, HCS and paediatric departments, cost-sustainable countybased HCS can be provided with high levels of family acceptability and positive effects on family
life and health in sick children of various ages, illnesses and stages of illness. However, unequal
accessibility and utilization may jeopardize care based on child and family needs.

Home environments of mothers with mental retardation

Keltner, B. (1994)

A prospective study of 38 mothers with IQs less than 75 and 27 mothers with IQs over 85 who were also low income was conducted. This study was designed to distinguish between children's developmental risk associated with maternal disability and risk related primarily to poverty. Findings from administration of the HOME inventory showed that mothers with intellectual limitations had significantly lower scores, indicating greater developmental risk for their children due to environmental deprivation. Most of the variance between groups was found on the interaction subscale. This suggests that strategies focused on interaction will be beneficial in assisting mothers with intellectual limitations in raising their children.

How adult beliefs shape the speech communities of a child who has multiple disabilities

Tucker, P. J. and R. R. Kretschmer (1999)

Ethnographic and micro-ethnographic techniques were used to investigate how the strategies employed by two adults (a mother and a physical therapist) to initiate and maintain interactions with a 2-year-old child with multiple disabilities were reflective of the adult partner's beliefs and values about communication in general and about this child in particular. Results indicate that the physical therapist believed in using the child's existing abilities as the primary reference point for establishing a speech community with the child. The mother used the demands of the larger, mostly nondisabled speech community as her primary reference point. How these differences affect the nature of the child's membership and level of independence in these speech communities is discussed

How can web-based training facilitate a more carer friendly practice in community-based health and social care services in Norway? Staff experiences and implementation challenges

Hanssen, H. Norheim, A. Hanson, E. (2017)

It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012-2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners' attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.

How children cope with mother's breast cancer

Issel LM, Ersek M, Lewis FM. (1990)

Few studies have focused on the child of a parent with cancer. Family systems and cognitive development theories suggest that the mother's illness affects the children and that families take action to help them. This study describes the ways in which school-age children cope with the mother's breast cancer and the ways in which their families help them cope. The results are based on semistructured interviews with 81 children 6-20 years old whose mothers had been diagnosed with breast cancer within the past two-and-a-half years. Interviews were tape-recorded, transcribed, and content analyzed. Eighty-four percent agreement on interrater reliability was achieved using three independent trained coders. Children and families used four types of strategies: acted as though they were in her shoes, carried on business as usual, tapped into group energy, and put her illness on the table. Parents, other family members, the children's friends, and adult friends helped the children. The results suggest ways that clinicians can understand the effect of the mother's breast cancer from the child's perspective and thus facilitate both the child's coping and the family's attempts to help the children.

How family members of a person suffering from mental illness experience psychiatric care

Sjöblom L-M, Wiberg L, Pejlert A, Asplund K. (2008)

Objective The aim of this study was to describe the experience of contact with formal psychiatric care, as narrated by family members of a person suffering from mental illness. Method The study was based on a qualitative design. Focus-groups with 16 family members were transcribed and interpreted using qualitative content analysis. Findings The findings present four themes; being disappointed with formal psychiatric care, being in need of understanding from and collaboration with formal psychiatric care, being positive about the care and the own contribution to the care and being subjected to preconceived ideas. The findings were interpreted as the families relationship with formal psychiatric care being characterized by a struggle for power. Conclusion To create a healthy situation for the families and thereby improve the situation for the patient, representatives of formal care should carefully consider how the families should be involved. Key words Family, focus groups, mental health, nursing, qualitative research

How older adults and the informal carers prevent falls: An integrative review of the literature

Wilkinson A, Meikle N, Law P, Yong HJ, Butler P, Kim J. (2018)

Abstract
Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons.

Aim: To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines.

Data sources: Health sciences databases for full text articles published in English plus reference list searching of included articles.

Review method: An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes.

Results: Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence.

Conclusions: The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines.

Hur bedömer man behov som kolliderar? En kvalitativ vinjett- och inervjustudie om biståndshandläggares hantering av etiska dilemman i ärenden där makar har olika behov och önskemål

Juslin Ellen (2015)

Det övergripande syftet med denna studie är att genom undersökning och analys söka en
förståelse för hur individens självbestämmande beaktas och hur intressemotsättningar mellan
makar hanteras av några av Stockholms stads biståndshandläggare. Studien fokuserar på
intressemotsättningar i form av att den ena maken/makan vill bo kvar hemma medan den
andra maken/makan inte orkar med den påfrestning det innebär att ha en vårdkrävande
make/maka i hemmet. Studien innefattas av tio av Stockholms stads biståndshandläggares
ageranden och reflektioner kring de etiska dilemman som uppstår i ärenden där makars behov
och/eller åsikter om stödinsatser kolliderar. Syftet kan benas upp i följande övergripande
frågeställningar:
- Hur reflekterar handläggare kring självbestämmande för en hjälpbehövande äldre
person och kring stöd till maken/makan?
- Hur reflekterar handläggare kring möjliga ageranden då den äldre personen och
dennes makes/makas åsikter går isär?
- Hur uppfattar biståndshandläggare handlingsutrymmet för att kunna stödja båda den
äldre och dennes make/maka?

Hur hjälper jag mitt barn?

Tytti Solantaus, Antonia Ringbom (2007)

Boken vänder sig till psykiskt sjuka föräldrar och försöker förklara de känslor och reaktioner barnet kan ha inför föräldrarnas svårigheter. Man tar upp skuldkänslor och skam samt uppmuntrar till att söka hjälp från någon annan vuxen eller t ex barnavårdscentralen.

Hur kan kommuner planera för äldres boende nu och i framtiden? : Resultat och erfarenheter från projektet Inte(GR)erad bostadsplanering med fokus på äldre

Nordenhielm, S (2012)

Idag finns inte tillräckligt med goda och tillgängliga bostäder som kan möta behoven hos en åldrande befolkning. Kommunerna äger frågan om bostadsplaneringen för äldre, men vilken kunskap och information behöver kommunerna för att kunna planera för goda och attraktiva bostäder för äldre? Och hur kan den kunskapen hämtas in? I projektet Inte(GR)erad bostadsplanering med fokus på äldre har FoU i Väst/GR, GR Planering och GR-kommunerna Ale, Härryda, Kungälv, Mölndal och Tjörn samverkat kring dessa frågor. I denna skrift sammanfattas arbetssätt, resultat och erfarenheter från projektet.

Hur många barn växer upp med föräldrar som har alkoholproblem? – Resultat från en systematisk litteraturöversikt

Ramstedt Mats (red) (2019)

Sammanfattning
Mot bakgrund av osäkerheten om hur många barn i Sverige som växer upp med föräldrar som
har alkoholproblem genomfördes en litteraturöversikt inom området av den internationella
vetenskapliga litteraturen och av den nordiska "grå litteraturen", dvs. studier som inte publicerats i vetenskapliga tidskrifter. Tanken var att resultaten i dessa översikter skulle ligga till
grund för att ta fram skattningar av hur stor denna grupp av utsatta barn är i Sverige idag.
Översikten identifierade endast 23 vetenskapliga studier som skattat hur många barn som växer
upp med föräldrar som har alkoholproblem. Dessa studier var begränsade till USA, Norden och
Storbritannien. Genomgången av nordisk grå litteratur identifierade ytterligare 9 studier.

Hur påverkas vuxna barn av att ha en åldrande förälder?

Norén, Anna (2020)

Sammanfattning
Denna rapport undersöker hur vuxna barns arbetsutbud och hälsa påverkas av att ha en åldrande förälder i behov av omvårdnad. I uppsatsen undersöks det ökade omvårdnadsbehovet dels under föräldrars sista år i livet och dels som följd av en stroke. Effekten av att ha en åldrande förälder med förhöjt omvårdnadsbehov studeras genom att jämföra söners och döttrars sysselsättning, inkomst och hälsa före och efter det att föräldern dör respektive får en stroke. Studien visar att sysselsättning och inkomst sjunker något under förälderns sista år i livet, men att effekten är störst under det år, och året efter, förälderns död. Det finns också tecken på att döttrars sjukskrivning ökar det år föräldern avlider. Däremot påverkas inte sysselsättning och inkomst bland vuxna barn till föräldrar som drabbas av stroke. Det finns heller inga tydliga könsskillnader i effekterna. Sammantaget tyder resultaten på förälderns omsorgsbehov har en begränsad påverkan på vuxna söners och döttrars arbetsutbud.

Kvalitet i fritidshem. Skolverkets Allmänna råd och kommentarer

Skolverket (2007)

De allmänna råden riktar sig till både kommunen och den personal som arbetar på fritidshemmet och illustrerar hur ansvarsfördelningen mellan kommun och verksamhet ser ut. Det är Skolverkets förhoppning att dessa allmänna råd med kommentarer kommer att ligga till grund för diskussioner om hur verksamheten kan bedrivas och att de ska ge ett gott stöd för att utveckla verksamheten.

De befintliga allmänna råden kan tillämpas till dess att de nya allmänna råden har beslutats.

Kvalitet i äldreomsorg ur ett anhörigperspektiv

Magnusson Lennart, Hanson ELizabeth, Larsson Skoglund Annica, Ilett Richard, Sennemark Eva, Barbabella Francesco, Gough Ritva (2016)

Nationellt kompetenscentrum anhöriga, Nka, har tagit fram rapporten "Kvalitet i äldreomsorg ur ett anhörigperspektiv" på uppdrag från Socialdepartementet. Rapporten ingår i den nationella kvalitetsplanen för äldreomsorgen.
I rapporten framgår det tydligt att trygghet är själva förutsättningen för att kunna skapa bästa och mesta möjliga välbefinnande för anhöriga och äldre närstående. Andra viktiga byggstenar är tillhörighet, delaktighet och betydelsefullhet. Det finns också ett behov av kompetensutveckling – både i verksamheterna och hos de anhöriga. I kunskapssammanställningen framgår också att anhöriga och äldre närstående tenderar att bemötas och behandlas olika beroende på den utbildning, arbete och social position personen har. Detsamma gäller kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder. Rapporten tar upp en rad åtgärder för att utveckla kvaliteten i vården och omsorgen för äldre ur ett anhörigperspektiv.

Kvarboende eller flyttning på äldre dar. En kunskapsöversikt

Larsson K. (2006)

Rapporten sammanställer aktuell kunskap om de äldres boende, både ordinärt (det vill säga att bo "hemma") och särskilt boende. Syftet är också att beskriva faktorer som leder till flyttning respektive kvarboende på äldre dagar

Den så kallade kvarboendeprincipen, att samhället ska möjliggöra för den enskilde att kunna bo kvar i sitt eget hem, har varit den officiella policyn i decennier. Äldre personers faktiska möjlighet att bo kvar påverkas av en mängd faktorer som hälsa, familjeförhållanden, ekonomi samt bostädernas tillgänglighet för dem med funktionsnedsättning

Kvinnors och mäns återhämtning från psykisk ohälsa

Schön, Ulla-Karin (2009)

Rapport i Socialt arbete 130. Doktorsavhandling

The overall aim with this thesis is to describe and analyze women's and men's recovery processes. More specifically, the aim is to determine what women and men with experience of mental illness describe as contributing to the personal recovery process. The point of departure for the studies was 30 in-depth interviews conducted with 15 men and 15 women. The selection of interview subjects was limited to individuals who had been treated in 24-hour psychiatric care and diagnosed as having schizophrenia, psychosis, a personality disorder, or a bipolar disorder.

Four studies have been carried. Study 1 was a baseline article that examined what people in recovery from mental illness outline as facilitating factors to their recovery. The results that emerged from that study indicated areas for further analysis to condense the understanding of the recovery process. In study 2 the similarities and the differences in recovery described by women and men were examined. In Study 3 women's and men's meaning-making with reference to severe mental illness facilitate the recovery process were studied. The forth study explored how peer-support contribute to women's and men's recovery from mental illness.

The results emphasize recovery from mental illness as a social process in which relationships play a key role in creating new identities beside the mental illness. For a majority of the participants meeting peers facilitated the recovery process. The participants described how peer support meant an end to isolation and became an arena for identification, connection, and being important to others. Throughout these recovery processes the impact of gender has been emphasized. The results from this thesis provide new insight into gender as an important factor in understanding the recovery processes. The results from the four studies emphasize the mental patient, the psychiatric interventions and the individual recovery strategies as being influenced by gender constructions.

Känslomässig tillgänglighet hos traumatiserade flyktingfamiljer. Anknytningsbaserad behandlingsmodell för späd- och småbarn och flyktingföräldrar med PTSD

Brendler-Lindqvist, M., Daud, A., & Hermanson Tham, J. (2012)

Emotional Availability among Traumatized Refugee Families
Red Cross Centre for Tortured Refugees in Stockholm, Sweden, started in 2011 a clinical
research pilot project in order to prevent second generation traumatization among children of
tortured and war-traumatized parents with complex Post-traumatic Stress Disorder, PTSD.
The project runs in co-operation with Karolinska Institutet, Department of Women's and
Children's Health, Child and Adolescent Psychiatric Unit. The aim of the project was to
explore and evaluate a treatment program based on attachment theory and trauma theory for
parents and infants, age 0-24 months.
The early relation of mother-infant is fundamental for the survival of the infant and basic for
development of a child's social, emotional and cognitive health and capacity. According to
research parents with complex, PTSD, risk to transform their symptoms to their children.
The theoretical reference is based on attachment theory and Emotional Availability Scale,
EAS, as an investigating instrument. A clinical sample according to the project criteria was
selected. Five refugee families from the Middle East with established complex PTSD diagnos
have been participated in the treatment program, consisting of psycho pedagogical family
interventions, interplay therapy and group interventions.
The preliminary results of this pilot project indicated an outstanding need for developing a
treatment program focusing on mother and child emotional availability within refugee
families as a preventive intervention. This is the first report of a three-year project, financed
by Stiftelsen Allmänna Barnhuset.

Känslornas betydelse I funktionshindrade barns livsvärld

Hautaniemi, Bozena (2004)

The aim of my study is to describe and understand disabled children's special way of understanding and relating to the surrounding world. The thesis is based on an empirical study of six severely disabled children, lacking language and speech, aged from nine months to five years. The children were studied by video recordings in Händelsriket, a center organised to offer them different kinds of rich stimulation. One important finding was that the children expressed a non-verbal, meaning making competence that I decided to further explore. First, I tried to interpret the children's competence in the frame of psychoanalytic and psychodynamic theories, which turned out to be difficult as these theories were based on assumptions linked to the tradition of René Descartes, making a clear difference between Cogito and body, nature and culture. In this tradition, human consciousness is based on the acquisition of language and the development of the sphere of symbols. As a consequence, the mentioned theories could not help us to understand the embodied, non-verbal competence of the disabled children. Many of these theorists also argue that their theories have little relevance for disabled children.However, the phenomenological tradition, inspired by among others Edmund Husserl, Martin Heidegger and Maurice Merleau-Ponty, was of much more help in the analysis of the disabled children's activities in Händelsriket. In the theory of the lifeworld, Husserl´s and Merleau-Ponty´s, for instance, introduces two different kinds of intentionality indicating an embodied consciousness of great relevance to the empirical findings.Another important empirical finding was that feelings, and the expression of feelings, seemed to play an important role in the children's non-verbal, meaning making competence. As a consequence of this I have decided to include a discussion of research on feelings, emotions and affects. Based on the critique of the distinction between feelings, emotions and affects in social and anthropological research, I have decided to base my analysis on the concept of feelings.In the empirical analyses I discuss the role of feelings in the disabled children's perception, consciousness, communication and interaction with other people. I found that the meaning making processes based on feelings and expression of feelings contributed to the development of the children's personal styles of understanding their life-world. It also played an important role in the thematisation of their experiences, antecipations of objects, extensions and restrictions of their experiential horizons and their mastering of challenging experiences. The feelings also played important roles in the children's communicative competence and in their interaction with other people and the development of mutual closeness, understanding and community. In short, the feelings could be understood as important constituents of the life-world of the severely disabled children, their understanding of themselves and of the surrounding world.

Kärlek och stålull

Pipping, Lisbeth (2004)

"Min barndom var full av slag och psykisk misshandel. Jag var alltid rädd, varje dag, varje timme, varje minut och varje sekund. Rädd för min mamma, rädd för mina klasskamrater, rädd för han som utnyttjade oss, rädd för allt. Det fanns nästan ingen trygghet att finna i min barndom.
Jo, det fanns en plats där jag kunde känna mig trygg, även om det tog tid att våga vara trygg hos mina sommarföräldrar. Deras gård var en oas. Där fann jag en trygghet under de sommarveckor jag bodde
långt bort från mamma. Där fick jag provsmaka hur det kunde vara och hur det borde vara att få vara ett litet barn. Men det var bara de där sommarveckorna. En tid som liksom bara var till låns för snart skulle jag hem till min mamma igen, tillbaka till rädslan och utsattheten. Jag ville inte åka hem till när sommaren var slut, jag grät då jag tvingades att åka till mamma igen"

I Kärlek och stålull skildrar Lisbeth Pipping på ett personligt och levande sätt sin uppväxt med en utvecklingsstörd mamma, en svårt alkoholiserad pappa och två småsystrar. Läsaren får ta del av en barndom i misär, bristande omsorg och kärlek...

Labor market work and home care´s unpaid caregivers: A systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work

Lilly M, Laporte M, Coyte P. (2007)

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.

Labor Market Work and Home Care´s Unpaid Caregivers: A Systematic Review of Labour Force Participation Rates, Predictors of Labor Market Wtihdrawal, and Hours of Work

Lilly M, Laporte M, Coyte P. (2007)

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.

Landstingens och kommunernas möjlighet att samverka kring vård och omsorg

Direktiv (1999:42). (1999)

En särskild utredare tillkallas med uppgift att beskriva och analysera de problem som finns i dag vid samverkan mellan landstingens hälso- och sjukvård och kommunernas vård och omsorg på områden där det finns behov och intresse av att samverka. Utredaren skall vidare lämna förslag till lösningar som förbättrar möjligheterna till samverkan mellan kommuner och landsting på dessa områden.

Language development and language disorders

Bloom, L., & Lahey, M. (1978)

This book provides a synthesis of research findings in normal language development as well as a practical approach to the evaluation and treatment of children with language disorders. Its 21 chapters are divided into six topical sections: language description, normal language development, deviant language development, goals of language learning based on normal development, correlates of language disorders, and facilitating language learning. Each chapter concludes with a summary and a list of suggested readings. The book includes appendixes that set forth conventions for transcription of child language recordings and video recorded data, present definitions of language content categories, and list instruments for assessing language and language-related behaviors. An extensive bibliography of related resources and author and subject indexes are also provided. (GW)

Language within our grasp

Rizzolatti, G. and M. A. Arbib (1998)

In monkeys, the rostral part of ventral premotor cortex (area F5) contains neurons that discharge, both when the monkey grasps or manipulates objects and when it observes the experimenter making similar actions. These neurons (mirror neurons) appear to represent a system that matches observed events to similar, internally generated actions, and in this way forms a link between the observer and the actor. Transcranial magnetic stimulation and positron emission tomography (PET) experiments suggest that a mirror system for gesture recognition also exists in humans and includes Broca's area. We propose here that such an observation/execution matching system provides a necessary bridge from'doing' to'communicating',as the link between actor and observer becomes a link between the sender and the receiver of each message.

Lek med mig

Hartman, Ann-Marie & Larsson, Lena (2010)

Häftet riktar sig särskilt till den som har ett barn med synskada, men de innehåller tips och idéer som fungerar för alla barn med behov av extra stimulering de första åren. Se även Lek mera med mig.

Lek mera med mig

Hartman, Ann-Marie & Larsson, Lena (2010)

Häftet riktar sig särskilt till den som har ett barn med synskada, men de innehåller tips och idéer som fungerar för alla barn med behov av extra stimulering de första åren. Se även Lek med mig.

Lenas mamma får en depression

Alphonce Elisabet (2009)

text och illustrationer: Elisabet Alphonce

barn/ungdom

En berättelse om hur en förälder kan vara när hon drabbats av depression.

Less is more: meta-analyses of sensitivity and attachment interventions in early childhood

BAKERMANS-KRANENBURG, M. J., VAN, I. M. H. & JUFFER, F. (2003)

Is early preventive intervention effective in enhancing parental sensitivity and infant attachment security, and if so, what type of intervention is most successful? Seventy studies were traced, producing 88 intervention effects on sensitivity (n = 7,636) and/or attachment (n = 1,503). Randomized interventions appeared rather effective in changing insensitive parenting (d = 0.33) and infant attachment insecurity (d = 0.20). The most effective interventions used a moderate number of sessions and a clear-cut behavioral focus in families with, as well as without, multiple problems. Interventions that were more effective in enhancing parental sensitivity were also more effective in enhancing attachment security, which supports the notion of a causal role of sensitivity in shaping attachment.

Leva livet – medan det pågår Ett inspirationsmaterial kring frågor som rör livet och döden för personer med flerfunktionsnedsättning och deras anhöriga

Nationellt kompetenscentrum anhöriga (2020)

För personer med flerfunktionsnedsättning är livet ofta skört och anhöriga tvingas förhålla sig till tankar om döden på ett mer påtagligt sätt än de flesta andra. I denna skrift har vi på Nationellt kompetenscentrum anhöriga (Nka) samlat berättelser från familjer, yrkesverksamma och specialister med olika erfarenheter avseende detta ämne och sammanställt det i fem kapitel. Nka är ett nationellt kunskapscentrum för anhörigfrågor och anhörigstöd, vars huvudsakliga uppgift är att vara ett expertstöd till kommuner, regioner och enskilda utförare. I uppdraget ingår också att ge kunskapsstöd direkt till föräldrar och andra anhöriga till personer med flerfunktionsnedsättning. Verksamheten startade i januari 2008 och bedrivs på uppdrag av Socialdepartementet via Socialstyrelsen.
Vi hoppas att berättelserna ska bidra till att samtal om livet och döden för personer med flerfunktionsnedsättning ska få en mer naturlig plats inom familjen och dess omgivning, samt i mötet med vården, omsorgen och det övriga samhället.

Levnadsförhållanden

Statistiska Centralbyrån (2006)

Statistiken beskriver levnadsförhållanden för olika grupper i befolkningen 16 år och äldre i olika avseenden: boende, ekonomi, hälsa, fritid, medborgerliga aktiviteter, sociala relationer, sysselsättning och arbetsmiljö, trygghet och säkerhet.

Lidandet som kamp och drama

Wiklund, Lena (2002)

Akademisk avhandling

Denna studie syftar till att via utformandet av en teoretisk modell nå ökad förståelse för hur människan erfar lidandet. Studien, som har en hermeneutisk ansats, fokuserar lidandet som drama och kamp, vilka beskrivs som lidandets form och substans.
Data insamlades genom samtal med informanter från två kontext. Den ena informantgruppen som utgjordes av nio personer med drogrelaterade problem valdes med utgångspunkt i ett antagande om att missbruket härrör från ett livslidande. De övriga informanterna (nio stycken) söktes inom ett till det yttre kontrasterande kontext, de hjärtopererade patienternas. De texter dessa samtal genererade tolkades sedan med utgångspunkt i en hermeneutisk ansats, som hämtat metodologisk inspiration av Ricoeur och Helenius. Tolkningen ägde rum i flera steg och det meningsbärande söktes genom naiv tolkning, analys av textens struktur samt genom ett sökande efter alternativa tolkningar. Tolkningsprocessen resulterade en uppsättning teser vilka relaterades till undersökningens teoretiska perspektiv samt till en begreppsanalys av 'kamp'.
Den teoretiska modellen tar fasta på lidandets kamp som en kamp mellan värdighet och skam, lust och olust. Denna kamp kan gestaltas i lidandets drama där människan på olika sätt söker lindring i lidandet. Detta kan ske genom att man försöker besegra lidandet, avtäcka det eller försonas med det. Ytterligare ett sätt att söka lindring är att ge upp lidandets kamp och resignera. I den teoretiska modellen gestaltas även hur människan kan förhålla sig till kampen på olika sätt beroende på vilket perspektiv hon har inför framtiden. Då människan uppfattar att framtiden präglas av ett hot om avskurenhet och död förhåller hon sig till livet på ett sådant sätt att lidandet dominerar. Om uppfattningen om framtiden präglas av liv och gemenskap kan hon förhålla sig till kampen som hälsa.
När lidandet blir outhärdligt förlorar människan sin förankring i tiden. I och med att människan isoleras i nuet kan lidandet bemästras och begränsas till en konkret situation. För att en rörelse i hälsoprocesserna skall äga rum måste människan emellertid relatera till tiden. Relationen till en annan människa och skapandet av en lidandeberättelse innebär en möjlighet till förankring i tiden och därmed också till helande.

Life after a stroke event. With special reference to aspects on prognosis, health and municipality care utilization, and life satisfaction among patients and their informal caregivers.

Olai, L. (2010)

Stroke medför en plötslig och påtaglig förändring av livet för den drabbade och för anhöriga. Efter sjukhusvistelsen för-sätts de i en ny livssituation och ställs in-för många nya problem. Eftersom antalet personer som lever efter genomgången stroke ökar, på grund av förbättrad över-levnad, medför det ökade insatser inom vårdens olika grenar, främst kommunala insatser men också ökade krav och för-väntningar på att anhöriga ställer upp som vårdare.Syftet var att öka kunskapen om stroke-patienters och deras anhörigas situation efter utskrivning från sjukhus. Studie-populationen bestod av 390 konsekutiva strokepatienter, 65 år eller äldre, samt anhöriga som gett hjälp och stöd åt pa-tienten.Den prognostiska förmågan hos sjukhus-personal, avseende patientens framtida hälsotillstånd, hjälpbehov samt boende-form, var signifikant bättre än slumpen. Personalen tenderade att vara alltför optimistisk i sina bedömningar. De fakto-rer som påverkade prognosens korrekthet var aktivitetsgrad och ensamboende före insjuknandet samt påverkad kognitiv för-måga och hjälpbehov vid utskrivningen. God uppfattning om prognosen är viktig såväl för patienter och anhöriga som för vårdpersonalen, bland annat i samband med utskrivningsplanering från sjukhuset.Risken för återinsjuknande och död mins-kade kraftigt från cirka 14% tidigt i efter-förloppet till en stabil nivå på 2-5% efter ett halvår. Cirka 2-3% av patienterna fick sjukhusvård vid ett givet tillfälle under det första året. Motsvarande vårdutnyttjande inom primärvården var 10% och i den kommunala äldreomsorgen 65%. Den kommunala vården svarade således för den största vårdinsatsen efter utskriv-ningen.De vanligaste intervjubaserade hälso-problemen under det första året gällde perception, rörlighet och sömn, medan de vanligaste journalbaserade problemen var smärta, inkontinens samt problem med andning och cirkulation. Kognitions-, rörlighets- och trötthetsproblem tende-rade att samvariera, vilket kan utnyttjas för att identifiera svårfångade problem. Nästan samtliga patienter rapporterade problem någon gång under året men få vid ett givet tillfälle. De faktorer som bestämde storleken av anhörigas insatser var patientens kogni-tiva förmåga, släktskap, given kommunal äldrevård, samt patientens kön. De an-hörigas upplevda börda ökade med den givna hjälpinsatsen, om kommunal äldre-vård getts, släktskap, låg kognitiv förmå-ga och patientens ålder. Både informell och formell vård ökade. Slutligen fanns det en påtaglig parallellitet avseende ång-est och depression samt livskvalitet, som innebar att ju mer ansträngd patientens situation var, desto värre var situationen för den anhörige

Life after stroke. Outcome and views of patients and carers

Jönsson, Ann-Cathrin (2007)

Det finns i Sverige idag över 100 000 personer vilka överlevt insjuknande i stroke (blodpropp eller blödning i hjärnan). Varje år inträffar ca 20 000 ? 25 000 nyinsjuknanden och ca 5 000 - 10 000 återinsjuknanden i stroke. Vanliga symtom både vid det akuta insjuknandet, och senare efter genomgången akutsjukvård och rehabilite-ring, är förlamningar, talrubbningar, sväljningsproblem, kommunikationsproblem, störd rumsuppfattning, svårigheter att uppfatta och tolka sina sinnen och balansrubbningar. Dödligheten ligger på ca 15-20 % de första veckorna efter insjuknandet. Ungefär en tredjedel av patienterna har relativt lindriga eller övergående symtom, men av de överlevande har 35-40 % funktionshinder av stor betydelse för det dagliga livet. Stroke är den vanligaste orsaken till funktionshinder hos vuxna, vilket innebär sämre förmåga att kunna utföra vardagliga aktiviteter, som förflyttning, hygien, att äta, osv.

Life events and peer substance use and their relation to substance use problems in college students

Taylor, J. (2006)

Substance use disorders among college students are not well understood, and the present study examined the relationship of two environmental factors to alcohol and drug use problems in 616 (316 women) college students. Participants completed measures assessing substance use problems, life events, and substance use among peers. Alcohol use problems were significantly associated with higher drug use problems and regular use of illicit drugs among friends. Drug use problems were significantly associated with male gender, higher alcohol use problems, regular use of alcohol and drugs among friends, illicit drug use among romantic partners, and higher numbers of negative life events. Results extend previous research and suggest that college students who experience multiple negative life events and/or affiliate with substance using friends and romantic partners may be at risk for developing a substance use problem.

Life situation as next of kin to persons in need of care - chronic sorrow, burden and quality of life

Liedström Elisabeth (2014)

Nursing research has been performed during the last 20-30 years, about the next of kin's vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin's relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Life Situation as Next of Kin to Persons in Need of Care: Chronic Sorrow, Burden and Quality of Life

Liedström, E. (2014)

Aim and Objectives: To increase the understanding of next of kin's life situation in the context of supporting persons who are long term ill, disabled and/or older by describing their experienced burden and quality of life and also the relationship between QoL, burden and socioeconomic variables.

Methods: Cross-sectional, descriptive and correlative design. Eighty-four next of kin answered two questionnaires: the Caregiver Burden Scale and the Subjective Quality of Life.

Results: Next of kin experienced a high burden in their life situation although they, at the same time, experienced a good quality of life. In the results gender differences were found. Females next of kin to a higher extent were disappointed, more emotionally involved, and they also estimated their economic situation as more unsatisfactory than the males next of kin.

Conclusion: Healthcare personnel meet next of kin, persons in need of care, within all healthcare and social care in society.Therefore it is important to have a general knowledge and ability to understand the next of kin's life situation, thus making it possible to focus the nursing interventions on individual support regardless of the care receiver's diagnosis.

Life situations and the care burden for stroke patients and their informal caregivers in a prospective cohort study

Olai, L., Borgquist, L., & Svärsudd, K. (2015)

BACKGROUND:
The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective.
METHODS:
A total of 377 Swedish stroke patients, aged ≥ 65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score.
RESULTS:
Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient's functional ability, low received municipal social service support, closeness of patient-caregiver relation, and short distance to patient's home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient's age, sex, functional ability, and patient-caregiver relationship. CB score increased with amount of informal caregiver support, patient's age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time.
CONCLUSIONS:
There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Life situations and the care burden for stroke patients and their informal caregivers in a prospective cohort study

Olai L, Borgquist L, Svärdsudd K. (2015)

BACKGROUND: The purpose of this study was to analyse whether the parallel life
situation between stroke patients and their informal caregivers (dyads) shown in
cross-sectional studies prevails also in a longitudinal perspective.
METHODS: A total of 377 Swedish stroke patients, aged ≥ 65 years, and their 268
informal caregivers were followed from hospital admission and one year on.
Analyses were based on patient interviews, functional ability (MMSE) score,
Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD)
score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity
score. Similar information was obtained by postal questionnaires from informal
caregivers, also including information on the nature and amount of assistance
provided and on Caregiver Burden (CB) score.
RESULTS: Before index admission informal caregivers provided care on average 5 h
per week and after discharge 11 h per week (P < 0.0001). Support volume was
associated with patient sex (more for men), low patient's functional ability, low
received municipal social service support, closeness of patient-caregiver
relation, and short distance to patient's home. Significant positive associations
within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score
(P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient's
age, sex, functional ability, and patient-caregiver relationship. CB score
increased with amount of informal caregiver support, patient's age, and with low
functional ability and low amount of municipal social service support. All these
associations were constant across time.
CONCLUSIONS: There was an association within the dyads regarding anxiety score,
NHP score, and activity score. CB score was generally high.

Lifeworld in co-designing with informal carers.

Andréasson Frida, Aidermark Jan, Magnusson Lennart, Strömberg Anna, Hanson Elizabeth (2019)

The purpose of this paper is to reflect on carers' experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach
This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas' concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings
Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers' ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value
Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers' needs and ideas, and at the same time balance this with proposed research outcomes.

Möta den som sörjer - Flera perspektiv på sorg efter dödsfall -

Inger Benkel (2020)

Sorg efter ett dödsfall är en mångfacetterad process. Det finns mycket som kan inverka på sorgens process och behovet av stöd som den sörjande kan behöva. Boken har ett psykosocialt per­s­pektiv på sorgeprocessen och beskriver olika omständigheter och faktorer som kan påverka den som sörjer.
Boken vänder sig till den som i sitt arbete möter sörjande, som vill lära sig mer om sorg och till den som har någon som sörjer i sin omgivning. Kanske kan den som själv är i en sorgeprocess känna igen sig i bokens beskrivningar av sorg.

Mötets magi – om samspelsbehandling och vardagens välgörande möten

Neander, Kerstin (2011)

Resultaten visade på tydliga positiva effekter för både föräldrar och barn avseende föräldrastress, anknytningsmönster, psykiskt välmående och att barnen uppvisade färre problem. I intervjuerna beskriver familjerna att det oftast är relationen till behandlarna som blir avgörande för hur behandlingen lyckas. Hur uppstår då möten som kan bli avgörande för familjernas möjlighet till förändring och hur kan professionella bli "betydelsefulla personer" som gör skillnad i familjen och barnens liv? Kerstin Neander, med lång klinisk erfarenhet, reflekterar kring aktuell forskning och praktikens möjligheter och utmaningar. Boken ger både en möjlighet att fördjupa sig i anknytningsteori och samspelsbehandlingens utvecklingshistoria och ringar in viktiga utvecklingsområden för samhället att satsa på för att alla föräldrar och barn ska få så goda förutsättningar som möjligt att utvecklas tillsamman

Narkotikabruket i Sverige

Statens folkhälsoinstitut (2010)

Hur många människor i Sverige använder narkotika och hur ser deras livssituation ut? Dessa två frågor har legat till grund för sju olika studier vars resultat redovisas i den här rapporten. Resultaten från flera av studierna kan forma ett nytt underlag för att underlätta framtida inriktningar och policybeslut. Rapporten visar bland annat oroväckande narkotikavanor hos yngre personer och tydliga könsskillnader i narkotikavanorna i vissa grupper, ofta förknippad med olika levnadsvillkor för män och kvinnor. En uppdelning via preparat i de flesta av undersökningarna har gett mycket värdefull information om olika substansers genomslag i samhället, och bland vilka grupper.

Narrative exposure therapy: A short-term intervention for traumatic stress disorders after war, terror, or torture

Schauer, E., Neuner, F. & Elbert, T. (2005)

This book is the first practical manual describing a new and successful short-term treatment for traumatic stress and PTSD called Narrative Exposure Therapy (NET). The manual provides both experienced clinicians and trainees with all the knowledge and skills needed to treat trauma survivors using this approach, which is especially useful in crisis regions where longer-term interventions are not possible. NET has been field tested in post-war societies such as Kosovo, Sri Lanka, Uganda, and Somaliland. Its effectiveness was demonstrated in controlled trials in Uganda and Germany. Single case studies have also been reported for adults and children. Three to six sessions can be sufficient to afford considerable relief. Part I of this manual describes the theoretical background. Part II covers the therapeutic approach in detail, with practical advice and tools. Part III then focuses on special issues such as dealing with challenging moments during therapy, defense mechanisms for the therapist, and ethical issues.

Narrative Research. Reading, Analysis and Interpretation

Lieblich, A., Tuval-Mashiach, R., & Zilber, T. (1998)

Using a new model for the classification of types of readings, this book shows how to read, analyze and interpret life story materials.

The authors introduce four models: holistic-content reading; holistic-form reading; categorical-content reading; and categorical-form reading. They present two complete narratives so that readers can compare the authors' interpretations against the actual text as well as analyze the stories on their own. The subsequent chapters provide readings, interpretations and analyses of the narrative data from the models.

National normative and reliability data for the revised Children's Manifest Anxiety Scale.

Reynolds CR, Paget KD. (1983)

Administered the revision of the Children's Manifest Anxiety Scale (RCMAS) to 4,972 6–19 yr olds from 13 states representing all geographic regions of the US. Norms are reported for White males, White females, Black males, and Black females separately at each age level for the total anxiety scale, 3 subscales of anxiety, and a lie scale. MANOVA demonstrated performance on the RCMAS to be a complex function of these factors. Reliability was satisfactory for all groups except Black females below the age of 12 yrs. (17 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)

National Research C. Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities.

Warner KE, Boat TF, O'Connell ME (2009)

Contributors

National Research Council; Division of Behavioral and Social Sciences and Education; Institute of Medicine; Board on Children, Youth, and Families; Committee on the Prevention of Mental Disorders and Substance Abuse Among Children, Youth and Young Adults: Research Advances and Promising Interventions; Mary Ellen O'Connell, Thomas Boat, and Kenneth E. Warner, Editors
Description

Mental health and substance use disorders among children, youth, and young adults are major threats to the health and well-being of younger populations which often carryover into adulthood. The costs of treatment for mental health and addictive disorders, which create an enormous burden on the affected individuals, their families, and society, have stimulated increasing interest in prevention practices that can impede the onset or reduce the severity of the disorders.

Nationell kartläggning – stöd till barn vars föräldrar har kontakt med psykiatrin

Renberg, Hannele (2007)

Det finns ett intresse på olika håll i landet och en önskan att utveckla metoder, där barnen
till vuxenpsykiatrins patienter verkligen uppmärksammas och deras röst blir hörd.
Dock saknar hälften av de psykiatriska klinikerna, som har besvarat enkäten
"handlingsplaner och rutiner" för hur man möter barn till föräldrar med psykisk sjukdom.
Själva enkäten skickades ut februari 2006.
Många efterfrågar också ett formaliserat uppdrag för att uppmärksamma barnen. Utifrån
svaren visar det sig att de orter där man har satsat på arbeta fram rutiner och
handlingsplaner uppmärksammar man patienternas barn på olika sätt. På dessa ställen har
man också personer som har det övergripande ansvaret för dessa frågor.
Många anser att det ska finnas någon eller några personer på kliniken som har det
övergripande ansvaret att se till att rutinerna fungerar och att patienternas barn
uppmärksammas. Dessa personer ska ha möjlighet att själva kunna ta del av det som händer
på området och sedan föra kunskapen vidare.
På många håll har man jobbat i projekt för att arbeta fram handlingsplaner. Efter att
projektet har upphört har det varit svårt att hålla barnperspektivet levande.

Även om man har rutiner och handlingsplaner anser 87 % av svarade att de saknar en
modell att arbeta efter.
Från Västerbotten nämner man Beardslee familjeintervention som en fungerande metod.
Där har man sedan våren 2005 haft utbildningar i metoden.
Även i enkätsvaret från Säter i Dalarna nämner denna metod. De vill att flera behandlare
ska få möjlighet att utbilda sig i metoden.
Från psykiatrin södra Ytterös behandlingsenhet i Stockholm nämner man att de använder i
Beardslee inspirerade samtal.
Det som gör denna familjeintervention unik är att det är en metod där man gör insatser för
den sjuka föräldern, friska föräldern, barnen (intervju med varje barn för sig) och slutligen
hela familjen.
Man använder sig av en manual som ger struktur till samtalen med fokus på föräldraskapet
och barnen.
För övrigt nämner man vid enkätsvaren olika typer av samtal, där man tar upp barnens
situation och informerar om förälderns sjukdom. Man har familjesamtal antingen
tillsammans med föräldrarna eller att personalen träffar enbart barnen.
3På många ställen finns det barngrupper. Kommunen håller oftast i barngrupperna, men på
några få ställen håller vuxenpsykiatrin själva i dessa. På något ställe har man barngrupper
tillsammans med kommunen, barnpsykiatrin och kyrkan. På några få ställen har man
parallella föräldragrupper.
Speciellt i större städer har man olika typer av barngrupper t.ex. barn i familjer där någon
har en psykossjukdom, barn i familjer med missbruk och barn i familjer, där det har
förekommit våld.
Däremot finns inte någon enhetlig linje, då det gäller vilken typ av manual man använder i
barngrupperna.
Man saknar också i stor utsträckning rutiner för att ta hand om barnen i samband med en
förälders suicidförsök eller suicid.
Man kan dra den slutsatsen, att de kliniker som har handlingsplaner och rutiner också i
större utsträckning har barnrelaterade samtal.
Kliniker som saknar rutiner har i betydligt mindre utsträckning barnrelaterade samtal.
Har man rutiner och handlingsplaner har man också väl fungerande samverkansrutiner med
t.ex. socialtjänsten, barnpsykiatrin och barnhälsovården.
Det finns en önskan om en enhetlig metod hur man ska möta barnen till vuxenpsykiatrins
patienter.
Många efterfrågar också om ett nationellt nätverk så att man ska kunna jobba vidare med
dessa frågor

Nattfrid? Om tillsyn på natten för äldre personer med hemtjänst

Abrahamson Löfström, C., Larsson, N. (2012)

Om tillsyn på natten för äldre personer med hemtjänst. Projektet "Nattfrid" handlade om att erbjuda äldre personer i eget boende tillsyn på natten med hjälp av en webbkamera istället för eller som ett komplement till tillsyn genom personligt besök. Under perioden september 2011 till och med oktober 2012 genomfördes projektet i tre kommuner, Göteborg, Järfälla och Varberg. 23 personer fick tillsyn på natten via webbkamera. Rapporten innehåller en utvärdering av projektet. FoU-enheterna FoU i Väst/GR och FOU har undersökt de äldre personernas, anhörigas och nattpersonalens upplevelser av tillsyn via webbkamera. De har också gjort en kostnadsmässig jämförelse mellan de båda formerna av tillsyn.

Navigeringskurs för anhöriga till personer med demenssjukdom. En utvärdering av ett projekt på Dalens minnesmottagning. Rapport 2013:6.

Sonde, L., & Gurner, U. (2013)

Anhörigkonsulenterna i stadsdelarna Enskede-Årsta-Vantör, Farsta, Skarpnäck
och Södermalm, tillsammans med minnesmottagningen vid Capio geriatrik på
Dalens sjukhus, genomförde under hösten 2012 en navigeringskurs för anhöriga.
Målgruppen var anhöriga till personer som nyligen genomgått en minnesutredning.
Syftet med kursen var att ge deltagarna kunskaper om demenssjukdomar
och information om vilka resurser kommun och landsting har för att möta upp de
drabbades och anhörigas behov.
Navigeringskursen gavs som en föreläsningsserie vid sju tillfällen på torsdagseftermiddagar.
Varje tillfälle varade ungefär 90 minuter och genomfördes i minnesmottagningens
lokaler. I navigeringskursen gavs information om demenssjukdomar,
kognition och bemötande, hjälpmedel, krisbearbetning samt om kommunens
stöd till anhöriga.
Stiftelsen Stockholms läns Äldrecentrum fick ett uppdrag att undersöka om navigeringskursen
tillför anhöriga användbar kunskap och ger dem en bättre navigeringsförmåga
i den vård och omsorg som erbjuds.
Undersökningen genomfördes med hjälp av intervjuer med deltagare och anordnare
före och efter navigeringskursen, samt med deltagarna sex månader efter
kursens avslut.
Deltagarna uppskattade navigeringskursen. En majoritet trodde att kursen gjort
dem bättre rustade att möta framtida utmaningar. Att kursen vände sig till både
barn, barnbarn och vänner förutom make/maka var också uppskattat. Samtidigt
var både deltagarna och anordnarna överrens om att navigeringskursen kan och
bör utvecklas.
För kursansvariga är det viktigt att rikta fokus på att för att kunna navigera behöver
anhöriga, förutom kunskap om själva sjukdomen, hjälpmedel och bemö-
tande, även kunskap om hur den vård och omsorgssituation ser ut som de ska
navigera i efter det att minnesutredningen är klar.
I rapporten ges ett antal förslag till förbättring och utveckling av navigeringskursen.
För att öka antalet deltagare bör ett formaliserat erbjudande om kursen ges
till samtliga anhöriga i samband med utskrivning från minnesmottagningen.
Kurstiderna behöver anpassas till förvärvsarbetande anhöriga som nu har svårt
att komma ifrån arbetet. Ett kurskompendium bör tas fram för att hålla informationen
aktuell. Föreläsarskaran behöver breddas utanför kretsen anhörigkonsulenter
och personal från minnesmottagning, t.ex. primärvård, biståndshandläggare
och ansvariga från dagvårdverksamheter, hemtjänst och särskilt boende.

Need for Support and participation in treatment differencies among subgroups of relatives to compulsory and voluntarily admitted mentally ill individuals

Östman, Margareta & Hansson, Lars (1999)

The need for support and participation in treatment of relatives to voluntarily and compulsorily admitted patients was addressed in a study of the quality of mental health services in two Swedish county councils. The aims of the study were to investigate differences in the above aspects between subgroups of relatives, the differences between two years of investigation, 1986 and 1991, and the differences between relatives of voluntarily and compulsorily admitted patients. The relatives investigated consisted of 79 spouses, 118 parents and 31 grown-up children. The results showed that there were only minor differences between the subgroups concerning their participation in care. Grown-up children experienced significantly less need of support and received less help for this need. In 1991, relatives participated more in the care situation, were more interested in support with regard to their own life situation, and also showed more positive attitudes towards the psychiatric services than in 1986. The relatives of the voluntarily admitted patients felt more involved in the patient's treatment, whereas the relatives of those compulsorily admitted felt less involved and perceived obstacles to admission.

Needs of elderly patients in palliative care

Wijk H, Grimby A. (2008)

A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.

Neglected victims of murder: children’s witness to parental homicide

Burman, S., & Allen-Meares, P. (1994)

Abstract
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Neglected victims of murder: children’s witness to parental homicide

Burman, S. & Allen-Meares, P. (1994)

Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Negotiating lay and professional roles in the care of children with complex health care needs

Kirk, Susan (2001)

eywords:
parental involvement;children with complex health care needs;role negotiation;nursing roles;community-based care
Negotiating lay and professional roles in the care of children with complex health care needs

Background. Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

Aims of the paper. To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

Design. Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

Findings. From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

Conclusion. This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent–professional relationships that are characterized by conflict rather than partnership.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices.

Olaison, A. (2009)

Studien tar sin utgångspunkt i de bedömningsprocesser äldre personer genomgår för att få tillgång till hjälp i hemmet. Bedömningsprocessen där äldre, deras anhö-riga och kommunala behovsbedömare deltog studerades ur ett kommunikativt perspektiv. Interaktionen vid behovsbedömningssamtalet fungerar som en pro-blemlösningsprocess. Den äldre personens redogörelse för behov förhandlas diskursivt i interaktionen och tre olika berättelselinjer identifierades, baserade på om de sökande betraktar hemtjänsten som ett intrång, som ett komplement och stöd eller som en rättighet. När olika åsikter uttrycks har de äldre sista ordet i enlighet med Socialtjänstlagens föreskrifter. En slutsats är att de anhörigas roll i behovsbedömningsprocessen inte är definierad och att ett familjeperspektiv sak-nas. I studien analyserades också bedömningsprocessens institutionella struktur. De äldre behovssökande processas till att bli klienter, deras behov anpassas till dokumentationens ramverk och kategoriseras i enlighet med institutionella kate-gorier. I transfereringen av tal till text redovisas inte samtliga element i samtalet. Två typer av utredningstext identifierades, den faktaorienterade och den händelse-orienterade. I studien diskuteras det marknadsekonomiska tänkande som kommit att påverka bedömningsprocessen genom byråkratisering vilket står i motsatsställ-ning till det individcentrerade perspektiv som lagen förespråkar. Introduktionen av marknadsmodeller i det gerontologiska sociala arbetet har medfört en inbyggd motsättning och utgör ett välfärdspolitiskt dilemma. Förbättrade kommunikativa metoder behövs för att uppnå en holistisk bedömningsprocess.

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.

Next-of-kin's conceptions of medical technology in palliative homecare

Munck B, Sandgren A, Fridlund B, Mårtensson J. (2012)

Aims and objectives. Describe next-of-kin's conceptions of medical technology in palliative homecare. Background. Next-of-kin to palliative patients are in an exposed position with increasing responsibility. The more involved they are in the care, the greater caregiver burden they describe. Medical technology has become increasingly common in palliative homecare, and previous research suggests that the devices transform the homes to a hospital ward, thus shifting responsibility from the personnel to the next-of-kin. Design. An explorative descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Method. Interviews with 15 next-of-kin to patients in palliative homecare were analysed in a seven-step process where 10 conceptions emerged in five description categories. Results. Medical technology in palliative homecare required next-of-kin's responsibility in monitoring or providing practical help. It also implied uncertainty among the next-of-kin because of worries about its safety or because of an improper handling. The technology trespassed on daily life because it restricted and affected the private sphere. Medical technology enabled comfort as it implied security and was a prerequisite for the patient to be cared for at home. It also required an adjustment to comprehend and manage the medical technology. Conclusions. Medical technology resulted in an increased caregiver burden and uncertainty among the next-of-kin. Although it meant restrictions and affected their social life, they had great confidence in its possibilities. Relevance to clinical practice. It is important to limit the amount of personnel and materials in the home to avoid trespassing on the family's daily life. Medical personnel also have to be sensitive to what next-of-kin have the strength to do and not use them as informal caregivers.

Nondirective counseling. Effects of short training and individual characteristics of clients [Akademisk avhandling].

Rautalinko E. (2004)

Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper I­III) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.

Nonverbal narratives: Listening to people with severe intellectual disability

Dennis, R. (2002)

This article describes an exploratory study that examined the perspectives of practitioners who spend much of their working day listening to and in some ways "interpreting" for people with severe intellectual disabilities. On the basis of focus group interviews with 23 professional disability-sector workers, including speech therapists, psychologists, and human service workers, the article reports on the importance of a practitioner's values and experience in successful interactions with individuals who rely on self-developed nonsymbolic communication repertoires. The article includes a discussion of the likelihood of including individuals with severe intellectual disabilities in narrative research.

Normaliseringsprincipen

Nirje, Bengt (2003)

ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.

Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.

Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.

Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.

Normbrytande beteende i barndomen. Vad säger forskningen?

Andershed A-K, Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling.

Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

Normbrytande beteende I barndomen. Vad säger forskningen?

Andershed A-K & Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling. Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

Developing the concept of family involvement and alienation questionnaire in the context of psychiatric care

Ewertzon, M., K. Lützén, et al. (2008)

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden

Weber Falk, Megan (2020)

Avhandling

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Differences in social support of caregivers living with partners suffering from COPD or dementia

Nordtug B, Krokstad S, Sletvold O, Holen A. (2013)

BACKGROUND: Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. OBJECTIVES: This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. METHODS: A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. RESULTS: For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. CONCLUSIONS: Differences in caregivers' needs for social support were related to their partner's disease. IMPLICATIONS FOR PRACTICE: Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.

Differentiating activity and participation of children and youth with disability in Sweden: A third qualifier in ICF-CY?

Granlund M, Arvidsson P, Niia A, Björck-Åkesson E, Simeonsson RJ, Maxwell G, et al. (2012)

OBJECTIVE:
This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.
DESIGN:
Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.
RESULTS:
Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.
CONCLUSIONS:
The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors

Whiteneck G, Dijkers MP. (2009)

Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.

For rehabilitation and disability research, participation and environment are 2 crucial constructs that have been placed center stage by the International Classification of Functioning, Disability and Health (ICF). However, neither construct is adequately conceptualized by the ICF, and both are difficult to measure. This article addresses conceptual and methodologic issues related to these ICF constructs, and recommends an improved distinction between activities and participation, as well as elaboration of environment. A division of the combined ICF categories for activity and participation into 2 separate taxonomies is proposed to guide future research. The issue of measuring participation from objective and subjective perspectives is examined, and maintaining these distinct conceptual domains in the measurement of participation is recommended. The methodological issues contributing to the difficulty of measuring participation are discussed, including potential dimensionality, alternative metrics, and the appropriateness of various measurement models. For environment, the need for theory to focus research on those aspects of the environment that interact with individuals' impairments and functional limitations in affecting activities and participation is discussed, along with potential measurement models for those aspects. The limitations resulting from reliance on research participants as reporters on their own environment are set forth. Addressing these conceptual and methodological issues is required before the measurement of participation and environmental factors can advance and these important constructs can be used more effectively in rehabilitation and disability observational research and trials.

Dignity in the end of life care : what does it mean to older people and staff in nursing homes? Diss.

Dwyer, L-L. (2008)

The discussion of a palliative care and a dignified death has almost exclusively been applied to people dying of cancer. As people are getting older and are living longer, nursing homes have become an important place for end-of-life care and death. Dignity is a concept often used in health care documents but their meaning is rarely clarified.The main aim of this thesis was to gain a deeper understanding of what dignity meant to older people in end of life care as well as to nursing home staff. The thesis comprises four studies. The first and second study involved older people living in nursing home settings studied from a hermeneutic perspective. In the first study twelve older people in two nursing homes were interviewed two to four times over a period of 18–24 months during 2002–2003. Altogether, 39 interviews were analyzed by a hermeneutic method. Dignity was closely linked to self-image and identity. The themes of unrecognizable body, dependence and fragility constituted threats to dignity. The third theme, inner strength and sense of coherence, seemed to assist the older people in maintaining dignity of identity. In the second study the aim was to acquire a deeper understanding of how three older women from study I, created meaning in everyday life at the nursing home. A secondary analysis was carried out and showed meaning in everyday life was created by an inner dialogue, communication and relationships with others. The third study was to explore nursing home staff members' experience of what dignity in end-of –life care means to older people and to themselves.Totally 21 interviews with staff were carried out and analyzed through a qualitative content analysis. The meaning of older people's dignity was conceptualized as feeling trust, which implied being shown respect. Staff members' dignity was conceptualized as maintaining self-respect. Dignity was threatened in situations where staff experienced themselves and the older people as being ignored and thereby marginalized. The fourth study was carried out through focus groups discussions with 20 staff members about seven older peoples dying death and care. The analyses showed that conversations and discussions about death were rare. Death was surrounded by silence. It was disclosed that the older dying person's thoughts and attitudes of death were not explicitly known. A dignified death meant alleviation of bodily suffering and pain and meaningfulness. The staff's ethical reasoning mainly concerned their experience of a gap between their personal ideals of what a dignified end of life should include and what they were able to provide in reality, which could result in conscious stress. Staff members need training and support. End of life care demands competence and teamwork.A challenge for future care of older people would be to develop a nursing home environment in which human dignity is promoted.

Disability pension in young adulthood among former child welfare clients. A national cohort study.

Hjern A & Vinnerljung B (2015)

Using longitudinal register data on all persons born in Sweden 1973–1978, we report on prevalence of disability pension among young adults who were child welfare clients during their formative years, and explore risk factors for this long-term outcome. For most child welfare subgroups, prevalence approached or exceeded ten percent. Multivariate logistic regression analyses found high crude odds ratios of disability pension among child welfare alumni. These were substantially reduced – but not obliterated – after adjustments for a host of background factors. Decomposition analyses revealed that child welfare alumni's poor school performance and low educational attainment accounted for most of the confounding effects. We also found that child welfare clients with a disability pension had far higher rates of psychosocial problems in their adult lives than other peers with a disability pension.

Child welfare alumni should be regarded as a high risk group for future disability pension and for permanent exclusion from the labor market. Rates of suicidal behavior in adult age were extreme among some subgroups of child welfare alumni with a disability pension, which should be communicated to agencies who are likely to meet these groups (eg. primary health care).

Disability Politics. Understanding our past, changing our future

Campel, Jane & Oliver, Mike (1996)

This powerful book presents a series of perspectives on the process of self-organisation of disabled people which has taken place over the last thirty years. The 1980s saw a transformation in our understanding of the nature of disability, and consequently the kinds of policies and services necessary to ensure the full economic and social integration of disabled people. At the heart of this transformation has been the rise in the number of organisations controlled and run by disabled people themselves. Through a series of interviews with disabled people who have been centrally involved in the rise of the disability movement, the authors present a new collective history which throws light on the politics of the 1980s, and offers insights into future political developments in the 1990s and on into the twenty-first century.

Disability Rights and the denial of Young Carers. The dangers of zero-sum arguments

Aldridge, Jo & Becker, Saul (1996)

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

Disability Rights and the denial of Young Carers. The dangers of zero-sum arguments

Jo Aldridge & Saul Becker (1996)

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

Discharge Planning of Stroke Patients: the Relatives´ Perceptions of Participation.

Almborg, A.-H., Ulander, K., Thulin, A., & Berg, S. (2009)

Aims.  To describe relatives' perceived participation in discharge planning for patients with stroke and identify correlates to perceived participation.

Background.  Stroke affects both patients and their relatives and previous research shows that relatives were often dissatisfied with their perceived involvement in discharge planning and the information they get.

Design.  Prospective cross-sectional study.

Methods.  The study comprised 152 consecutively enrolled relatives (mean age = 60·8 years) of acute stroke patients admitted to a stroke unit in southern Sweden during 2003–2005. Data were collected through interviews 2–3 weeks after discharge using 'Relative's Questionnaire about Participation in Discharge planning'. This instrument measures perceived participation in three subscales: R–Information–Illness, R–Information–Care/support, and R–Goals and Needs. The Overall Rating of Relative's Perceived Participation in Discharge Planning was measured by a visual analogue scale (VAS) (1–10 score).

Results.  Among the relatives, 56–68% reported positively according to R–Information–Illness, but 46–53% perceived that they did not receive any information about care/medication/rehabilitation/support. About 80% perceived no participation at all in goals and needs. The mean value of the VAS was 3·89 (SD 3·40) score. Regression analyses revealed that longer stay at hospital, patients with higher education, and relatives of female patients and female relatives were associated with relatives' perceptions of higher participation in discharge planning.

Conclusions.  Relatives perceived that they needed more information and knowledge about stroke and care/medication/rehabilitation/support. They also needed to be more involved in goal-setting and in identifying patient needs. Professionals should take into consideration these associated variables to improve relatives' perceived participation.

Relevance to clinical practice.  Clinicians should give more attention to the altered situation of stroke patients' relatives when planning for continuing care and when setting postdischarge goals for the patients. The professionals need to develop strategies to involve relatives in sharing information, goal-setting and needs assessment in discharge planning.

Discharged from hospital and in need of home care nursing : experience of older persons, their relatives and care professionals

Rydeman, I. (2012)

Background and aim: The discharge process (DP) is full of well-known risks. The general aim of this thesis was to shed more light into how different stakeholders experience the DP and evaluate the older persons' and their relative's preparedness for life at home after hospital discharge. Materials and methods: Both qualitative (Studies I, II, IV) and quantitative (Study III) research methods were selected. In Study I different care professionals (n=32) were interviewed in eight focus groups. Study I used a phenomenological method. In Study II older persons with home care nursing (HCN) and their relatives (n=26) were interviewed, and a grounded theory method was used. In Study III data were collected through a questionnaire among older persons and their relatives (n=152) and the questionnaire's psychometric properties were evaluated. Study IV was based on the data in Studies I and II and used an excursive interpretation based on a phenomenological approach and reflective lifeworld research. Results: The older persons and their relatives, as well as the care professionals, viewed the DP as ambiguous. Care and planning were described as fragmented. Three themes were important for care professionals' cooperation, actions and the outcome of the DP, but also associated with various difficulties and problems. The main concern of the older persons and their relatives was worry about not being sufficiently prepared for life at home. A theoretical model was created that illustrates whether the older persons and their relatives felt prepared or unprepared for life at home at discharge. The care professionals' skills were shown to be of utmost importance to satisfy the preparatory needs of the older persons and their relatives in three significant areas. The questionnaire showed that fifty-three per cent of the older persons and their relatives reported being insufficiently prepared. Factors associated with being insufficiently prepared were poor health at the time of the discharge and not asking for information. The DP is shown to be a critical event with illness making the meaning of life's fragility abruptly explicit and an unpredictable threat to getting on with one's life. The DP is characterised by experiences of being in-between that is contextual, bodily and existential for the older persons and the relatives accentuating their vulnerability. The relationship with care professionals and others, bodily conditions and life circumstances influence the in-between experience. Without the professional support and cooperation among them in the DP, the older persons run the risk of being lost and powerless throughout the DP. Conclusions: The DP deeply affects older persons and their relatives. When care professionals use a disease-led approach in their encounter with older patients and follow solely medical routines, they may lose focus on the patients' health processes. The older persons' and their relatives' experiences of exposedness and vulnerability due to illness, bodily, existential or contextual uncertainty indicate a threatening existence in the DP. The older persons and their relatives can easily be lost in an in- between experience illuminating the difficulties embedded in the illness, care and the DP in an older person's life. Care professionals need to acknowledge the individual and their everyday world and give follow-up support at home. This would make the DP a strong bridge between the hospital and home. The PPLH questionnaire developed from the theoretical model can be used to provide information that may prove useful in improving the DP from the perspective of older persons and their relatives and also as an assessment tool to identify and satisfy needs among older persons and their relatives both at hospital and at home.

Discovering indices of contingency awareness in adults with multiple profound disabilities

Saunders RR, Saunders MD, Struve B, Munce AL, Olswang LB, Dowden PA, et al. (2007)

We conducted two studies to examine parameters of social attention in contingency awareness training using switch activation with individuals who had multiple profound disabilities. In Study 1 we compared leisure devices and social attention as reinforcing stimuli with 5 individuals. Results indicated the reinforcing qualities of social attention over leisure devices with 2 individuals and documented the importance of session length in training. In Study 2 we investigated idiosyncratic behaviors as indicators of responsiveness with 3 of the 5 original participants as they activated switches. Behavior changes during switch activation versus nonactivation times in the leisure device and social attention conditions suggested volitional movement supporting contingency awareness and preference. Implications for clinical practice are discussed. © American Association on Intellectual and Developmental Disabilities.

Discrepancy between Mother and Child Perceptions of Their Relationship: I. Consequences for Adolescents Considered within the Context of Parental Divorce

Pelton J, Forehand R. (2001)

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

Discrepancy between Mother and Child Perceptions of Their Relationship: I. Consequences for Adolescents Considered within the Context of Parental Divorce

Pelton J, Forehand R. (2001)

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

Disenfranchised grief: Recognizing hidden sorrow

Doka, K. J. (1989)

A rich and full exploration of the myriad of instances where a mourner is deprived of the catharsis shared grief brings. Provides numerous interventions designed to help patients recognize and explore their loss, and find meaningful and appropriate ways to resolve their grief.

Diskriminerad, trakasserad och kränkt

Skolverket (2009)

I denna rapport redovisas den första delen av regeringsuppdraget om diskriminering. Den omfattar en undersökning om barns, elevers och studerandes uppfattningar om och upplevelser av situationer där diskriminering och trakasserier förekommer i förskolan, grundskolan, obligatoriska särskolan, gymnasiesärskolan, särvux och gymnasieskolan samt i den kommunala vuxenutbildningen/SFI. De övriga delarna i detta regeringsuppdrag finns redovisade dels i Skolverkets rapport "Tillgänglighet till skolors lokaler och valfrihet för elever med funktionsnedsättning", dels i Skolverkets rapport "Barn- och elevskyddslagen i praktiken. Förskolors, skolors och vuxenutbildningens tillämpning av lagen"

Disorganized attachment in early childhood: Meta-analysis of precursors, concomitants, and sequelae.

VAN IJZENDOORN, M. H., SCHUENGEL, C. & BAKERMANS-KRANENBURG, M. J. (1999)

During the past 10 years nearly 80 studies on disorganized attachment involving more than 6,000 infant-parent dyads have been carried out. The current series of meta-analyses have established the reliability and discriminant validity of disorganized infant attachment. Although disorganized attachment behavior is necessarily difficult to observe and often subtle, many researchers have managed to become reliable coders. Furthermore, disorganized attachment shows modest short- and long-term stability, in particular in middle class environments, and it is not just a concomitant of constitutional, temperamental, or physical child problems. The predictive validity of disorganized attachment is established in terms of problematic stress management, the elevated risk of externalizing problem behavior, and even the tendency of disorganized infants to show dissociative behavior later in life. In normal, middle class families, about 15% of the infants develop disorganized attachment behavior. In other social contexts and in clinical groups this percentage may become twice or even three times higher (e.g., in the case of maltreatment). Although the importance of disorganized attachment for developmental psychopathology is evident, the search for the mechanisms leading to disorganization has just started. Frightening parental behavior may play an important role but it does not seem to be the only causal factor involved in the emergence of disorganized attachment.

Disorganized infant attachment and preventive interventions: A review and meta-analysis

Bakermans-Kranenburg, M. J., Van Ijzendoorn, M. H., & Juffer, F. (2005)

Infant disorganized attachment is a major risk factor for problematic stress management and later problem behavior. Can the emergence of attachment disorganization be prevented? The current narrative review and quantitative meta-analysis involves 15 preventive interventions (N = 842) that included infant disorganized attachment as an outcome measure. The effectiveness of the interventions ranged from negative to positive, with an overall effect size of d = 0.05 (ns). Effective interventions started after 6 months of the infant's age (d = 0.23). Interventions that focused on sensitivity only were significantly more effective in reducing attachment disorganization (d = 0.24) than interventions that (also) focused on support and parent's mental representations (d = −0.04). Most sample characteristics were not associated with differences in effect sizes, but studies with children at risk were more successful (d = 0.29) than studies with at-risk parents (d = −0.10), and studies on samples with higher percentages of disorganized attachment in the control groups were more effective (d = 0.31) than studies with lower percentages of disorganized children in the control group (d = −0.18). The meta-analysis shows that disorganized attachments may change as a side effect of sensitivity-focused interventions, but it also illustrates the need for interventions specifically focusing on the prevention of disorganization.

Disorganized infant attachment and preventive interventions: a review and meta-analysis (Structured abstract).

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

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Disorganized infant attachment and preventive interventions: a review and meta-analysis (Structured abstract).

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

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Do community-based support services benefit bereaved children? a review of empirical evidence

Curtis, K. & Newman, T. (2001)

Abstract
AIMS:
To consider the evidence of effect from English language, empirically based quantitative evaluations of community-based interventions for bereaved children; community-based interventions being understood as those taking place outside a clinical setting.
METHODS:
MedLine, PsychInfo, Applied Social Sciences Index and Sociological Abstracts were searched for documents containing the words 'child', 'bereavement' and 'program', 'group', 'intervention', 'support' or 'evaluation'. The criterion for inclusion was that studies use a control group or pre- and post-test measurements using a standardized instrument.
RESULTS:
Nine relevant studies were identified. However, empirical evidence of positive outcomes for children was limited and compromised by methodological weaknesses in the design of the studies. Small sample sizes, irregular attendance, high levels of attrition, short time scales between pre- and post-testing and difficulty in developing appropriate instrumentation, including assessment of adherence to the agreed intervention programme, all created problems.
CONCLUSIONS:
The case for universal inclusion of this group of children in such support programmes remains unproven, and further exploration of the outcomes of a range of different community interventions is required, with a specific focus on long-term and/or unwanted effects and evaluation of the basis for referral.

Does Early Bereavement Counseling Prevent Ill Health and Untimely Death?

Grimby A., Johansson ÅK. (2008)

Fifty elderly bereaved men and women, who received bereavement counseling by a physician and a psychologist at 3 separate occasions during the year after loss, were followed during another 10 years in regard to morbidity and mortality, as some earlier studies have indicated increased risk during widowhood. Days of hospital care and mortality rates during 5 and 8 years, respectively, were the primary outcome variables. A group of representative married subjects was used for comparison purposes. The results showed no difference between the groups in the number of days of care before loss, nor did the days of hospital care after the loss differ. The mortality rate was similar in both groups. This may suggest that bereavement counseling has a preventive effect regarding health and survival, but this should be further evaluated in controlled studies before counseling programs can be recommended.

Does early caregiving matter? The effects on young caregivers’ adult mental health

Shifren, K., & Kachorek, L.V. (2003)

Limited information is available on the long-term effects of providing care for adults when caregiving begins in childhood in the United States. The current study provided an examination of the effects of youthful caregiving on the mental health of these persons when adults, and provided a description of their early family relations. Twenty-four individuals, 21 to 58 years old, were given brief phone interviews with semistructured questions about their early caregiving experiences, and then they completed questionnaires on their early caregiving experiences, mental health, and early parent–child relations. To be included, respondents must have provided primary caregiving assistance (i.e., bathing, feeding, etc.) for a parent or adult relative when the caregiver was under 21 years old. Results showed that the sample reported more positive mental health than negative mental health, though 42% had high depressive scores on the total CES-D. Individuals who reported fathers as too protective reported less current positive mental health. Early caregiving is not associated with poor mental health in adulthood for many young caregivers. However, some individuals do appear at risk of depression in adulthood.

Evidence-based treatment and practice: New opportunities to bridge clinical research and practice, enhance the knowledge base, and improve patient care

Kazdin, A. (2008)

The long-standing divide between research and practice in clinical psychology has received increased attention in view of the development of evidence-based interventions and practice and public interest, oversight, and management of psychological services. The gap has been reflected in concerns from those in practice about the applicability of findings from psychotherapy research as a guide to clinical work and concerns from those in research about how clinical work is conducted. Research and practice are united in their commitment to providing the best of psychological knowledge and methods to improve the quality of patient care. This article highlights issues in the research- practice debate as a backdrop for rapprochement. Suggestions are made for changes and shifts in emphases in psychotherapy research and clinical practice. The changes are designed to ensure that both research and practice contribute to our knowledge base and provide information that can be used more readily to improve patient care and, in the process, reduce the perceived and real hiatus between research and practice.

Examination of the communication interface between students with severe to profound and multiple intellectual disability and educational staff during structured teaching sessions

Bunning K, Smith C, Kennedy P, Greenham C. (2011)

Background Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. Method An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Results Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and objects were used by the teachers for the purpose of communication, whereas vocalisation and gesture were used by the students. Conclusions Despite differences in the availability of communication skills, both student and teacher were able to make their respective contributions to the interaction during classroom activity. Features of the student-teacher interface retained critical features seen in studies of more able individuals with intellectual disability. Scaffolding provided by teachers appears to be relevant to the communicative contributions of individuals functioning at the earliest stages of communication. The coding framework based on structural-functional linguistics provides some new potential for examining and enhancing the communication interface between individuals with S-PMID and the people who support them.

Examining the cost per caregiver of an intervention designed to improve the quality of life of spousal caregivers of stroke survivors.

Parker EK, Swint JM, Godwin KM, Ostwald SK. (2012)

BACKGROUND AND PURPOSE:
There is a growing consensus among healthcare researchers that, within the field of family caregiving, cost-effectiveness research is needed to determine which programs have the greatest benefit for family members. This study examines the cost per caregiver of an intervention designed to improve the quality of life of spousal caregivers of stroke survivors.
METHOD:
Cost data from the CAReS study were analyzed to determine the cost of the intervention per caregiver.
RESULTS:
The cost of the intervention per caregiver was $2,500 at the 2009 median wage estimate. It was $1,700 at the 2009 10 percentile wage estimate and $3,500 at the 2009 90 percentile wage estimate.
CONCLUSIONS:
This study provides a prototype cost analysis from which researchers can build. In future analyses, costs should be tracked at a participant level so uncertainty can be calculated using the bias-corrected percentile bootstrapping method and plotted to calculate cost-effectiveness acceptability curves, enabling cost-effectiveness comparisons between interventions.

Examining the impact of familiarity on faucet usability for older adults with dementia

Boger J, Craig T, Mihailidis A. (2013)

Background: Changes in cognition caused by dementia can significantly alter how a person perceives familiarity, impacting the recognition and usability of everyday products. A person who is unable to use products cannot autonomously complete associated activities, resulting in increased dependence on a caregiver and potential move to assisted living facilities. The research presented in this paper hypothesised that products that are more familiar will result in better usability for older adults with dementia. Better product usability could, in turn, potentially support independence and autonomy. Methods: This research investigated the impact of familiarity on the use of five faucet designs during 1309 handwashing trials by 27 older adults, who ranged from cognitively intact to the advanced (severe) stages of dementia. Human factors methods were used to collect empirical and self-reported data to gauge faucets' usability. Participants' data were grouped according to cognition (i.e., no/mild, moderate, or severe dementia). Logistic regression, ranking by odds, and Wald tests of odds ratios were used to compare performance of the three groups on the different faucets. Qualitative data were used in the interpretation of quantitative results. Results: Results indicated that more familiar faucets correlated with lower levels of assistance from a caregiver, fewer operational errors, and greater levels of operator satisfaction. Aspects such as the ability to control water temperature and flow as well as pleasing aesthetics appeared to positively impact participants' acceptance of a faucet. The dual lever design achieved the best overall usability. Conclusions: While work must be done to expand these findings to other products and tasks, this research provides evidence that familiarity plays a substantial role in product usability for older adults that appears to become more influential as dementia progresses. The methods used in this research could be adapted to analyse usability for other products by older adults with dementia.

Executive functions

Diamond, A. (2013)

Executive functions (EFs) make possible mentally playing with ideas; taking the time to think before acting; meeting novel, unanticipated challenges; resisting temptations; and staying focused. Core EFs are inhibition [response inhibition (self-control--resisting temptations and resisting acting impulsively) and interference control (selective attention and cognitive inhibition)], working memory, and cognitive flexibility (including creatively thinking "outside the box," seeing anything from different perspectives, and quickly and flexibly adapting to changed circumstances). The developmental progression and representative measures of each are discussed. Controversies are addressed (e.g., the relation between EFs and fluid intelligence, self-regulation, executive attention, and effortful control, and the relation between working memory and inhibition and attention). The importance of social, emotional, and physical health for cognitive health is discussed because stress, lack of sleep, loneliness, or lack of exercise each impair EFs. That EFs are trainable and can be improved with practice is addressed, including diverse methods tried thus far.

Existentiell ensamhet hos sköra äldre personer: ett närståendeperspektiv.

Larsson, Helena (2020)

Avhandling
Svenska

The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people's experiences and to describe significant others' and family care advisors' views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept 'frail older people' was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.

Experience of caregiving: Relatives of people experiencing a first episode of psychosis

Tennakoon L, Fannon D, Doku V, O'Ceallaigh S, Soni W, Santamaria M, et al. (2000)

Investigated the dimensions of caregiving and morbidity in caregivers of people with first-episode psychosis. Caregivers (aged 16–68 yrs) of 40 people with first-episode psychosis (aged 18–39 yrs) were interviewed at home about their experience of caregiving, coping strategies, and distress. Results found that caregivers used emotional and practical strategies to cope with participants' negative symptoms and difficult behaviors and experienced more worry about these problems. They increased supervision when the participants displayed difficult behaviors. 12% of caregivers were suffering from psychiatric comorbidity as defined by the General Heath Questionnaire (D. P. Goldberg and V. F. Hillier, 1979). Those living with the participant had more frequent visits to their general practitioner. It is concluded that at first-episode psychosis caregivers are already having to cope with a wide range of problems and are developing coping strategies. Caregivers worried most about difficult behaviors and negative symptoms in participants. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Experience of siblings of children treated for cancer

Nolbris, M., Enskar, K., & Hellstrom, A-L. (2007)

Abstract
The aim was to obtain an understanding of the experience in everyday life of being a sibling when a brother or sister is receiving treatment for a cancer disease or has completed treatment. In order to illuminate the experience of the siblings themselves a phenomenological-hermeneutic method was used. Ten siblings were asked, in the form of a broad-based, open question, to tell about their experience of being the sibling of a brother or sister in this situation. There was an awareness of sibling-ship as a special relation since the brother or sister had got cancer. This feeling was very strong and close, and when needed the sibling admitted a protective and advocacy role. The siblings felt difficulties to always be loyal with the brother or sister needs and demands from other interests. They lived a new life and periods of ups and down following the condition of the brother or sister. Everyday life varied from joy to a life filled with worries and anxiety. Siblings experienced feelings of an existential nature, such as quality of life and death.

Experiences and nursing support of relatives of persons with severe mental illness [Elektronisk resurs].

Weimand, B. M. (2012)

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness.
Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography.
Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives' encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV).
Conclusions: Relatives' lives are intertwined with the life of their severely mentally ill next of kin. Relatives' overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives' needs, and support must be adapted to the individual relative.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences in a group of grown up children of mentally ill patients

Knutsson-Medin, L., Edlund, B. & Ramklint, M. (2007)

children of psychiatric patients;mental health services;offspring at risk;parental mental illness;qualitative methods;resilience
Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

Experiences in a group of grown-up children of mentally ill parents

Knutsson-Medin L, Edlund B, Ramklint M. (2007)

Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers

Eriksson H, Sandberg J, Hellström I. (2013)

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.
BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.
METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.
RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.
CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.
IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers

Experiences of loss and chronic sorrow in persons with severe chronic illness

Ahlström, Gerd (2007)

Aims and objectives.  The aims of the present study were to describe losses narrated by persons afflicted with severe chronic physical illness and to identify the concomitant occurrence of chronic sorrow.

Background.  Reactions connected with repeated losses are referred to in the literature as chronic sorrow, which has recently been described in conjunction with chronic illness.

Design.  A qualitative study with an abductive approach of analysis, including both inductive and deductive interpretations.

Method.  The study is based on 30 persons of working age with average disease duration of 18 years. The average age was 51 years. All of the persons had personal assistance for at least three months because of considerable need for help in daily life due to physical disability. Each person was interviewed twice. There was also an independent assessment of the deductive results concerning chronic sorrow.

Experiences of parents with a son or daughter suffering from Schizophrenia

Ferriter M, Huband N. (2003)

Parents of 22 patients diagnosed with schizophrenia, and receiving care in a secure forensic setting, were interviewed to elicit their views on the causes of the disorder, the emotional burden and the helpfulness of others when seeking support. Pathological parenting theories of causation were rated the least important, and biological and life-event models the most. Stress, loss and fear were the most commonly reported reactions. Violence, withdrawal and verbal aggression were most often identified as behaviours causing difficulty. Many participants felt guilt, usually in the absence of being blamed. Family members and self-help groups were recalled as being of most help, and professional staff were considered to be of least help. Parenting a son or daughter with schizophrenia frequently causes considerable emotional distress, often with perception of unhelpful responses from professional staff. Parents often blame themselves for the disorder, even when not blamed by others. Guilt does not appear to arise from belief in a pathological parenting model of schizophrenia. Factors contributing to self-blame in this group are discussed, together with suggestions for appropriate therapeutic intervention.

Experiences with using information and communication technology to build a multi-municipal support network for informal carers

Torp S., Bing-Jonsson P., Hanson E. (2013)

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

Explorascope: Stimulation of language and communicative skills of multiple handicapped children through an interactive, adaptive educational toy

Hummels C, van der Helm A, Hengeveld B, Luxen R, Voort R, van Balkom H, et al. (2007)

Very young non- or hardly-speaking children with severe disabilities need active guidance to stimulate interaction with their environment in order to develop their communicative and linguistic skills. Augmentative and alternative communication (AAC) systems can help this process, provided that they are tuned to this specific user group. LinguaBytes is a research programme, which aims at developing an interactive and adaptive educational toy that stimulates the language and communicative skills of multiple-handicapped children with a developmental age of 1-4 years. In this article we show which guidelines we consider essential for developing this tool. We have developed several concepts based on these guidelines, of which we elucidate Explorascope (E-scope). E-scope consists of a tangible toy-like interface that is adaptable to an individual child with respect to his or her cognitive, linguistic, emotional and perceptual-motor skills. A first user test shows that E-scope is promising and useful for this user group.

Exploring access to care among older people in the last phase of life using the behavioural model of health services use: a qualitative study from the perspective of the next of kin of older persons who had died in a nursing home.

Condelius A, Andersson M. (2015)

BACKGROUND: There is little investigation into what care older people access
during the last phase of their life and what factors enable access to care in
this group. Illuminating this from the perspective of the next of kin may provide
valuable insights into how the health and social care system operates with
reference to providing care for this vulnerable group. The behavioural model of
health services use has a wide field of application but has not been tested
conceptually regarding access to care from the perspective of the next of kin.
The aim of this study was to explore the care accessed by older people during the
last phase of their life from the perspective of the next of kin and to
conceptually test the behavioural model of health services use.
METHODS: The data collection took place in 2011 by means of qualitative
interviews with 14 next of kin of older people who had died in a nursing home.
The interviews were analysed using directed content analysis. The behavioural
model of health services use was used in deriving the initial coding scheme,
including the categories: utilization of health services, consumer satisfaction
and characteristics of the population at risk.
RESULTS: Utilization of health services in the last phase of life was described
in five subcategories named after the type of care accessed i.e. admission to a
nursing home, primary healthcare, hospital care, dental care and informal care.
The needs were illuminated in the subcategories: general deterioration, medical
conditions and acute illness and deterioration when death approaches. Factors
that enabled access to care were described in three subcategories: the
organisation of care, next of kin and the older person. These factors could also
constitute barriers to accessing care. Next of kin's satisfaction with care was
illuminated in the subcategories: satisfaction, dissatisfaction and factors
influencing satisfaction. One new category was constructed inductively: the
situation of the next of kin.
CONCLUSIONS: A bed in a nursing home was often accessed during what the next of
kin regarded as the last phase of life. The needs among older people in the last
phase of life can be regarded as complex and worsening over time. Most enabling
factors lied within the organisation of care but the next of kin enabled access
to care and contributed significantly to care quality. More research is needed
regarding ageism and stigmatic attitudes among professionals and informal
caregivers acting as a barrier to accessing care for older people in the last
phase of their life. The behavioural model of health services use was extended
with a new category showing that the situation of the next of kin must be taken
into consideration when investigating access to care from their perspective. It
may also be appropriate to include informal care as part of the concept of access
when investigating access to care among older people in the last phase of their
life. The results may not be transferable to older people who have not gained
access to a bed in a nursing home or to countries where the healthcare system

Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers

Milberg, A. and P. Strang (2004)

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers

Milberg, A. and P. Strang (2004)

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study

Henriksson A, Årestedt K. (2013)

BACKGROUND: Family caregivers in palliative care often report feeling
insufficiently prepared to handle the caregiver role. Preparedness has been
confirmed as a variable that may actually protect family caregiver well-being.
Preparedness refers to how ready family caregivers perceive they are for the
tasks and demands in the caregiving role.
AIM: The aim of this study was to explore factors associated with preparedness
and to further investigate whether preparedness is associated with caregiver
outcomes.
DESIGN: This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS: The study took place in three specialist palliative care
units and one haematology unit. A total of 125 family caregivers of patients with
life-threatening illness participated.
RESULT: Preparedness was significantly associated with higher levels of hope and
reward and with a lower level of anxiety. In contrast, preparedness was not
associated with depression or health. Being female and cohabiting with the
patient were significantly associated with a higher level of preparedness. The
relationship to the patient was significantly associated with preparedness, while
social support, place of care, time since diagnosis and age of the patients
showed no association.
CONCLUSION: Feelings of preparedness seem to be important for how family
caregivers experience the unique situation when caring for a patient who is
severely ill and close to death. Our findings support the inclusion of
preparedness in support models for family caregivers in palliative care.
Psycho-educational interventions could preferably be designed aiming to increase
family caregiver's preparedness to care, including practical care, communication
and emotional support.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study.

Henriksson, A., & Årestedt, K. (2013)

BACKGROUND:
Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.
AIM:
The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.
DESIGN:
This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS:
The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.
RESULT:
Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.
CONCLUSION:
Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

Exploring life after stroke : experiences of stroke survivors, their family caregivers and experts in an Iranian context

Dalvandi, A. (2011)

The global burden of stroke is immense. Despite the high incidence of stroke, little research has been done on the post stroke recovery process. Aim; the overall aim of this research project was to explore life after stroke based on experiences of stroke survivors (I, II), their family care givers (I-III) and expert in field of rehabilitation (IV) in an Iranian context. Material and Method: Data for the studies were gathered from knowledgeable participants and followed to figure out the themes by purposeful selection (I- IV) and then by theoretical sampling (II-IV). Data were analyzed by the basic tenets of the grounded theory approach according to Strauss & Corbin, by semi-structured interviews and focus group discussions (II-III-IV) and qualitative content analysis (I). Results: In Study (I) the results were categorized into the two main themes that were identified as; (1) challenged by changes in life situations and (2) striving to cope with new conditions. Study (II) identified "functional disturbances" as core concept. Functional disturbances were encompassed by in appropriate strategies in managing and supporting, such as lack of adequate social insurance and access to the few existing rehabilitation services. In study (III) the core concept identified was "lack of continuity of rehabilitation care". Seven related main categories were extracted including inadequate knowledge and skills, inappropr iate acce ss ib il it y to re hab il ita t ive se r vice s, inadeq uat e soc ia l ins ura nc es, mod ifying ho me environment, managing coexisting medical conditions, improving nurses' roles and, relying on family unity. In study (IV) "non-integrated rehabilitation service" emerged as core concept. The explored concepts were 'deficiently allocated budget', 'inadequate social insurance', 'lack of availability of rehabilitative care', 'negative public opinions', 'lack of consistency of care', 'split services and professional separation'. Potential areas for improvements were 'need for changing policymakers' attitudes', 'needs for refining rehabilitation in health care system', 'needs for establishing a registration system', 'needs for providing information and skills' and 'needs for seeing the family as a whole'. In conclusion, the core concept for life after stroke was "functional disturbances". Non-integrated rehabilitation services within health care system and lack of continuity of rehabilitation care caused stroke survivors and their family caregivers to experience ranges of dysfunctions in terms of physical, emotional, psychological and social aspects. Change of policy makers' attitude appears to be important in order to allocate adequate budget in this regards. Stroke survivors and their family caregivers experienced everyday life in terms of being challenged by changes in life situation and striving to cope with new conditions. The study results indicate that focusing on multidisciplinary approach and establishing registration system for follow-up of survivor's rehabilitation are to be recommended.

Exploring Parent Beliefs and Behavior : The Contribution of ADHD Symptomology Within Mothers and Fathers

Lowry, L. S., Schatz, N. K., & Fabiano, G. A. (2015)

OBJECTIVE:
To use a multi-method approach to examine the association of parental ADHD and gender with observed and self-reported parenting beliefs and behaviors.

METHOD:
Seventy-nine mother-father dyads completed measures of child behavior and impairment, parenting beliefs and behaviors, and self- and partner ratings of ADHD symptoms and functional impairment. Forty-five parents also completed structured parent-child interactions.

RESULTS:
A hierarchical linear model suggests impairment in functional domains may be associated with negative emotions about parenting and less effective parenting strategies. For fathers, greater severity of partner-reported symptoms of ADHD may be associated with greater frequency of negative talk during parent-child interactions.

CONCLUSION:
Findings suggest that higher levels of parental ADHD symptoms and functional impairment may be associated with reported beliefs and behaviors related to parenting. Differences emerged among mothers' and fathers' use of parenting strategies when self- and other-report of ADHD symptoms and impairment were assessed.

Exploring parents' use of strategies to promote social participation of school-age children with acquired brain injuries

Bedell G, Cohn ES, Dumas HM. (2005)

OBJECTIVE:
To understand parents' perspectives about the strategies they use to promote social participation of their school-age children with acquired brain injuries (ABI) in home, school, and community life.
METHOD:
A descriptive research design employing a semistructured interview format was used. Interviews were conducted in the homes of 16 families of school-age children with ABI discharged up to 7 years earlier from one inpatient rehabilitation program. Data were examined using content and constant-comparison analyses.
RESULTS:
Parents needed time to allow the recovery process to unfold for themselves and their children and developed strategies that fit into or assisted with managing family routines. Over time parents developed insight into the activity demands and their child's potential success to participate in desired activities. Based on these insights, parents used "anticipatory planning," which involved previewing upcoming events and activities and using strategies to promote positive and prevent negative experiences for their children. Specific strategies that parents used to promote social participation were classified into three categories: Creating opportunities, teaching skills, and regulating cognitive and behavioral function.
CONCLUSIONS:
Understanding how families use and integrate strategies within the context of their daily lives and what factors influence strategy use may provide practitioners with insights needed to support families in promoting their children's social participation.

Exploring the perceived world of the deaf-blind: On the development of an instrument

Rönnberg J, Samuelsson E, Borg E. (2002)

In the present interview study on a sample of 13 deaf-blind participants (eight Usher patients and five with other diagnoses), all but one with some remaining visual function and all but two with a pure-tone average (PTA) exceeding 100 dB HL, an instrument was developed to assess discovery and localization abilities (DILO), compensatory use of sensory information, emotional and cognitive aspects of communication, and the preferred use of technical aids. Both qualitative and quantitative data were collected, and it was found that (1) the importance of early discovery of events and persons is rated high, (2) vision ranks higher than other sensory information, and airflow, smell and residual hearing come next in the perceptual world of this sample, (3) cognitive aspects of communication correlate with the importance of discovery and localization, and (4) technical aids dominated by vision and vibratory senses are preferred. It is concluded that even a small remaining visual function could be of significant importance in rehabilitation. Finally, in the deaf-blind group of subjects with some remaining visual function, utilization of remaining vision was felt to be more important than utilization of other sensory modalities.

Fall concern about older persons shifts to carers as changing health policy focuses on family, home-based care

Ang SGM, O´Brien AP, Wilson A. (2018)

With the Singaporean population ageing at an exponential rate, home carers are increasingly becoming essential partners in fall prevention and care delivery for older persons living at home and in the community. Singapore, like other Asian countries, regards the family as the main support structure for the older person, and national policies have been implemented to support this cultural expectation. Family carers experience similar concerns as older persons with regard to fall risk, and identifying and addressing these concerns can potentially lower fall risk and improve fall prevention for older persons. It is timely to remind ourselves – as concern about falls in older persons begins to shift to carers – to incorporate the influence of Asian cultural values and unique family dynamics of outsourcing family caregiving, in the management of older persons' fall risk in the community.

Fallna löv. Om coping vid förlust av små barn

Rönnmark, Lars (1999)

Avhandling för doktorsexamen

Sweden has the world's lowest infant mortality rates. Despite this, according to Statistics Sweden, 816 children under the age of one died in 1997, 33 of these as a result of sudden infant death syndrome (cot death). This means an annual number of family catastrophes which is close to the number of people who died when the Estonia sank. This thesis, "Fallen Leaves: On Coping with the Loss of Small Children", studies how parents come to terms with the disaster that the death of a child involves, how they cope with destruction and repair the trauma.

Early intervention in adoptive families: supporting maternal sensitive responsiveness, infant-mother attachment, and infant competence

JUFFER, F., HOKSBERGEN, R. A., RIKSEN-WALRAVEN, J. M. & KOHNSTAMM, G. A. (1997)

Results from adoption studies suggest that adoptive families may experience special impediments with respect to the developmental progress and outcome of their children. Based on attachment theory, two early intervention programs were designed to support families in the Netherlands with an internationally adopted child. The intervention aimed at promoting maternal sensitive responsiveness, secure infant-mother attachment relationships, and infant exploratory competence. Ninety families with an interracially adopted infant (71 from Sri Lanka and 19 from Korea) were assigned to either a control group or one of two intervention groups. All of the children, 44 boys and 46 girls, were placed for adoption under the age of 5 months (M = 8 weeks). The first intervention group (N = 30) received a personal book, which focused on sensitive parenting. The second intervention group (N = 30) was provided with the same book as well as with three video-feedback sessions at their home. The control group (N = 30) did not receive intervention. In the control group sensitive responsiveness and security of attachment were comparable to outcomes from normative samples. The least intensive program, the personal book, did not bring about change in mothers or infants. In contrast, intervention effects were established upon maternal sensitive responsiveness, infant competence, and infant-mother attachment in the group that received both the book and video feedback.

Early years of support group 1: Three therapists´ views

Bergman, A., Moskowitz, S. & Demetri Friedman, D. (2011)

This three-part article describes the early years of one of the mother-baby-children groups of the Project for Mothers, Infants, and Young Children of September 11, 2001. The goal of the group was to help prevent the effects of trauma and loss from disrupting the relationships among the mothers, their infants, and growing children. View I by Anni Bergman describes the mothers' states of minds as the group began, when they felt that their worlds had collapsed under them. View II by Sally Moskowitz focuses on the clinical experience of working in the group, transference and countertransference themes, helping the mothers and children with their mourning process, and helping the mothers' relationships to each other, their babies, older children, family, and friends. The evolution of a casual, familial-type atmosphere and format came to be seen by the therapists as very important. The therapists wanted to provide whatever small feeling of normality and comfort possible in the context of the mothers' anguish. This routine atmosphere provided the backdrop against which the mothers could talk about what seemed like unspeakable events, thoughts, and feelings, and process the horrific events, in their magnitude and details. View III by Donna Demetri Friedman describes the play therapy treatment of two preschool-aged siblings in the context of the support group. The children's father had been killed in the World Trade Center attacks. This section describes the themes of the children's play and how they worked through the experience of the loss of their father, the birth of their sibling, and their mother's grief. It also describes their progress a decade later.

Eating well: children and adults with learning disabilities

Crawley H. (2007)

The Caroline Walker Trust was founded in 1988 after the death of the distinguished nutritionist, writer and campaigner, Caroline Walker. Established to continue her work and in her spirit, the CWT depends wholly on donations, legacies and project grants.

The work of the CWT is particularly targeted towards vulnerable groups and people who need special help. We produce nutritional and practical guidelines for both young and old.

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods

van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos G, Rutten F. (2006)

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.

Education and Poststroke Separation Among Couples with Mutual Children

Hedlund, Ebba, Kåreholt, Ingemar, Trygged, Sven (2011)

The objective of this study based on Swedish registers is to examine the influence of socioeconomic position on poststroke divorce and separation using education as a marker. People aged 18 to 64 who suffered a first stroke between 1992 and 2005 were included if they were married or cohabiting and had mutual children. The material included 42,026 first stroke cases and 424,281 nonexposed persons, both populations divided into three different educational groups. Results show that the risk of separation is much higher in the incident year and in the first poststroke year, above all among people with only compulsory (elementary) education.

Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip

Thabet, A. A., Abed, Y., & Vostanis, P. (2001)

A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.

Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial

Blom MM, Bosmans JE, Cuijpers P, Zarit SH, Pot AM. (2013)

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.

Effectiveness of a Culturally Adapted Strengthening Families Program 12-16-Years for High-Risk Irish Families

Kumpfer KL, Xie J, O'Driscoll R. (2012)

Background

Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.

Objective

To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.

Methods

250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.

Results

All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.

Conclusions

This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial

Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J. (2012)

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial

Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J. (2012)

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial

Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM (2015)

BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.

Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women

Jansson LM, Svikis DS, Beilenson P. (2003)

Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.

Falls in older people receiving in-home informal care across Victoria: Influence on care recipients and caregivers

Meyer C, Dow B, Bilney B, Moore K, Bingham A, Hill K. (2012)

Older people receiving informal care at home appear at high falls risk. This study investigates frequency, circumstances and factors associated with falls risk for older care recipients, and their informal caregivers. Ninety-six dyads, recruited from caregiver agencies, underwent a home assessment, including falls risk, function, depression, quality of life, self-rated health and carer burden. Care recipients were at high falls risk. In the past 12 months, 58% had fallen and 26% twice or more. Common falls risk factors were polypharmacy, multiple medical conditions and requiring functional assistance. Caregivers exhibited multiple health problems, moderate burden and reduced quality of life. Where care recipients had high falls risk, caregivers had significantly higher carer burden and depression. Low functional level and high care recipient health problems were independently associated with risk of falling (P < 0.05). Strategies to reduce falls risk in this cohort are necessary, together with supporting the needs of the caregiver.

Families and risk: Prospective analyses of family Psychology

Pomery, EA., Gibbons, FX,, Gerrard, M., Cleveland, M.J., Brody, GH., & Willis, TA. (2005)

Parental, peer, and older siblings' contributions to adolescents' substance use were investigated with 2 waves of panel data from 225 African American families. Structural equation modeling showed that older siblings' behavioral willingness (BW) to use substances at Time 1 (T1) predicted target adolescents' Time 2 (T2) use, controlling for other T1 variables. Regression analyses revealed an interaction between targets' and siblings' BW, such that targets were more likely to use at T2 if both they and their siblings reported BW at T1. This interaction was stronger for families living in high-risk neighborhoods. Finally, siblings' willingness buffered the impact of peer use on targets' later use: Low sibling BW was associated with less evidence of peer influence.

Families at high and low risk for depression: a 3-generation study

Weissman M, Wickramaratne P, Nomura Y, Warner V, Verdeli H, Pilowsky D, et al. (2005)

BACKGROUND: The familial nature of early-onset major depressive disorder (MDD) has been documented in numerous family studies of adults and is supported by studies of offspring of parents with MDD, for whom the risk is more than 3-fold. None of the published high-risk studies have gone beyond 2 generations, and few have a longitudinal design. We report results of an approximately 20-year follow-up of families at high and low risk for depression. The first 2 generations were interviewed 4 times during this period. The offspring from the second generation are now adults and have children of their own, the third generation of the original cohort. OBJECTIVE: To examine the familial aggregation of psychiatric disorders and functioning in grandchildren by their parents' and grandparents' depression status. DESIGN: Longitudinal, retrospective cohort, family study. PARTICIPANTS: One hundred sixty-one grandchildren and their parents and grandparents. MAIN OUTCOME MEASURES: Lifetime rate of psychiatric disorder and functioning in grandchildren, stratified by parental and by grandparental depression status, collected by clinicians blind to diagnoses of previous generations and to previous interviews. RESULTS: There were high rates of psychiatric disorders, particularly anxiety disorders, in the grandchildren with 2 generations of major depression, with 59.2% of these grandchildren (mean age, 12 years) already having a psychiatric disorder. The effect of parental depression on grandchildren's outcomes differed significantly with grandparental depression status. Among families with a depressed grandparent, increased risk of anxiety (relative risk, 5.17; 95% confidence interval, 1.4-18.7; P = .01) and increased risk of any disorder (relative risk, 5.52; 95% confidence interval, 2.0-15.4; P = .002) were observed in grandchildren with a depressed parent as compared with those with nondepressed parents. The severity of parental depression, as measured by impairment, significantly increased the rate of a mood disorder in these grandchildren (relative risk, 2.44; 95% confidence interval, 1.1-5.5; P = .03). In contrast, among grandchildren with nonfamilial depression, ie, depressed parents with no depressed grandparents, there was no significant effect of parental MDD on grandchildren diagnoses. However, parental MDD, regardless of whether families had a depressed grandparent, had a significant impact on the grandchildren's overall functioning. Potential confounding variables did not affect the strength of the association with parental and grandparental depression. CONCLUSIONS: The association between parental MDD and child diagnosis is moderated by grandparental MDD status. The rates of psychopathology are highest in grandchildren of parents and grandparents with a moderately to severely impairing depression. Anxiety disorders are the early sign of psychopathology in the young grandchildren. Early interventions in the offspring of 2 generations affected with moderately to severely impairing MDD seem warranted. This familial group may be the target for neuroimaging, genetic, and other biological studies.

Families of Children With Attention-Deficit / Hyperactivity Disorder : Review and Recommendations for Future Research

Johnston, C., & Mash, E. J. (2001)

This review integrates and critically evaluates what is known about family characteristics associated with childhood Attention-Deficit/Hyperactivity Disorder (ADHD). Evidence suggests that the presence of ADHD in children is associated to varying degrees with disturbances in family and marital functioning, disrupted parent-child relationships, specific patterns of parental cognitions about child behavior and reduced parenting self-efficacy, and increased levels of parenting stress and parental psychopathology, particularly when ADHD is comorbid with conduct problems. However, the review reveals that little is known about the developmental mechanisms that underlie these associations, or the pathways through which child and family characteristics transact to exert their influences over time. In addition, the influence of factors such as gender, culture, and ADHD subtype on the association between ADHD and family factors remains largely unknown. We conclude with recommendations regarding the necessity for research that will inform a developmental psychopathology perspective of ADHD.

Families of young children with autism spectrum disorder in Sweden: The role of culture and intergenerational support

Zakirova Engstrand, Rano (2019)

Doktorsavhandling

Children with autism spectrum disorder (ASD) have shown high variability in learning outcomes in response to evidence-based interventions, suggesting a need for individualization of intervention programmes for each child and his/her family. To explain this variability and develop effective intervention strategies research suggested focusing on identification of important contextual factors that might influence the effectiveness of a specific intervention for each child such as family cultural characteristics and characteristics of service settings and systems. The overarching aim of the thesis was to identify and describe proximal and distal environmental factors and processes affecting implementation and provision of interventions and services for young children with ASD and their families within the context of the Swedish support system. Two theoretical models guided the research project: Bronfenbrenner's bioecological model of human development and Wachs's multiple-influences model of individual variability. The specific objectives addressed using a mixture of qualitative and quantitative methods were: (i) to investigate the scope of reporting ethnicity and other cultural factors in research publications by Swedish scholars involved in empirical research in ASD in children and youth (Study 1); (ii) to explore perceptions of autism, beliefs about its causes, and treatment preferences expressed by parents of children with ASD from culturally, ethnically and linguistically diverse backgrounds (Study 2), and (iii) to explore grandparents' perceived needs in relation to having a young grandchild with ASD (Study 3). The results of data triangulation across the three studies showed that within the context of the Swedish support system, three proximal environmental factors were associated with identification of ASD in young children and families' use of services and interventions before and after the child was diagnosed with ASD. These were parents' belief systems (including perceptions about child's autism, help-seeking behaviours, and treatment preferences); the role of preschool teachers, and the role of other service providers, such as healthcare professionals. Data triangulation singled out seven groups of distal environmental factors: beliefs of extended family; family cultural, ethnic and linguistic background; family socio-economic characteristics (occupation and education level); Swedish formal support system enacted through various legislative acts; international laws and regulations; information sources (mass media and social media), and conceptualization and clinical definition of ASD (as reflected in DSM and ICD classifications). Findings also highlight the importance of taking into consideration of role of ASD researchers as an additional distal environmental factor affecting implementation of interventions and services for culturally and linguistically diverse children with ASD and their families.The results of the studies provide insights into understanding of families' belief systems about ASD causes, treatment preferences, and needs that are essential for planning and provision of family-level early interventions for children with ASD in the cultural context of Sweden. Implications for practice and future research are discussed.

Familjebaserad behandling: handbok för föräldrar vars barn behandlas för anorexia nervosa

Ganci, Maria (2020)

Familjebaserad behandling är den standardbehandling som används för barn och ungdomar som lider av anorexia nervosa. Det är också den behandlingsform som ger bäst evidensbaserade resultat. Men att hjälpa ett barn som insjuknat i anorexia kräver mycket av föräldrar och familj och det är svårt att förutse hur intensiv den familjebaserade behandlingen är. I den här handboken får läsaren hjälp att förstå sjukdomen. Boken är praktiskt inriktad och författaren redogör för alla aspekter av behandlingen. Här beskrivs hinder och anorektiska beteenden som motverkar tillfrisknandet men författaren ger också tydliga verktyg för att lösa olika situationer. Familjebaserad behandling är en värdefull resurs för föräldrar som ska påbörja eller redan deltar i en familjebaserad behandling. Boken är också ett ovärderligt verktyg för vårdteam som ska vägleda familjer.

Familjefokuserad omvårdnad, föreställningar i samband med ohälsa och sjukdom.

Wright L, Watson W, Bell J. (2002)

Familjefokuserad omvårdnad
Boken med originaltiteln Beliefs The heart of healing in families and illness ger en samlad bild av vad familjefokuserad omvårdnad innebär, men framför allt ger den en bild av den enorma kraft och potential som finns i våra föreställningar om olika fenomen. Detta gäller såväl sjuksköterskors föreställningar om familjer, hälsa, ohälsa/sjukdom som familjemedlemmars föreställningar om t.ex. sjuksköterskors roll och ohälsans/sjukdomens orsak och behandlingsmöjligheter för tillfrisknandet.

Författarna har genom sin långa kliniska erfarenhet samlat många fantastiska exempel från sitt arbete med familjer med varierande ohälso-/sjukdomsbilder. Dessa berättelser genomströmmar hela boken. De levandegör budskapet om att våra föreställningar och vår biopsykosociala och andliga struktur är avgörande för hur omvårdnaden av familjer ska leda till ett ökat välbefinnande och upplevd hälsa för dem.

Eftersom denna bok är skriven av sjuksköterskor för sjuksköterskor och sjuksköterskestudenter har vi valt att rikta texten mot mötet mellan sjuksköterskan och familjen. Boken har även en familjeterapeutisk utgångspunkt, vilket gör att även andra yrkesgrupper kan ha glädje av boken.

Familjehemsföräldrars erfarenheter av Paired Reading med placerade barn

Forsman, H. (2013)

The academic underachievement of looked after children is well known. By involving foster
carers in a Paired Reading intervention a Swedish project tried to address this issue,
replicating a successful British trial. The aim of my thesis was to study the variations in the
foster carers' experiences of this literacy intervention. Reading reports from 100 children
were collected and qualitative interviews with 15 foster parents were analyzed using concepts
from motivational psychology. The results revealed that although some had reported
difficulties a majority of the participants had implemented the program in an acceptable way.
Many carers had noticed improvements in the child's reading ability and some reported
improved relations, but in a few cases rigidly following the method had led to conflicts. The
interviews showed that the completion of the literacy training was conditioned on the
children's pleasure/joy in reading which in turn may require adjustments in the day-to-day
delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to
be able to arouse enthusiasm in the child. The results suggest that it is possible to engage
foster parents in the improvement of foster children's literacy skills.

Familjeliv

Johansson T. (2009)

Det inte längre självklart vad en familj är för något. "Kärnfamiljen" förändras och det skapas nya sätt att "göra familj". Därmed uppstår nya frågor om familjen: Hur ser dagens familjer egentligen ut?

Läs mer
Den här boken tar ett grepp om det moderna familjelivet och behandlar olika typer av familjekonstellationer - vilka visar familjens inplacering i en ny politisk, social och emotionell tid. Boken ger en inträngande bild av familjeliv i Sverige, men presenterar också utblickar mot mer globala bilder av familjeliv.

Om författarna
Thomas Johansson är professor i socialpsykologi på Institutionen för kultur, estetik och medier vid Göteborgs universitet.

Familjemedlem till person med psykossjukdom: bemötande och utanförskap i psykiatrisk vård

Ewertzon, M. (2012)

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation. A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV). The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV). Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

Familjemedlem till person med psykossjukdom: Bemötande och utanförskap i psykiatrisk vård

Ewertzon, M. (2012)

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation.A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV).The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV).Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

Familjen och habiliteringen

Granlund, Mats & Olsson, Cecilia (1998)

Syftet med boken är att ge föräldrar till barn med funktionshinder redskap att aktivt samarbeta med habiliteringsverksamheten. Boken består av korta textavsnitt som kan tjäna som kunskapskälla och inspiration, samt skattningsformulär som föräldrar kan använda sig av som redskap för att tydliggöra för sig själva och för habiliteringen vad man vill ha hjälp med.

Familjer med barn och unga med psykisk ohälsa:– en litteraturöversikt om anhörigas erfarenheter samt insatser i form av information, stöd och behandling relevanta ur ett anhörigperspektiv

Benderix Ylva (2015)

Vad finns det för stöd till familjen när ett barn eller en ung person drabbas av psykisk
ohälsa? Vad säger forskningen om att engagera hela familjen i behandlingen?
Kunskapsöversikten tar upp frågor som dessa och visar hur familjer med barn och unga
med psykisk ohälsa kan ha det i Sverige idag. Författaren har gått igenom ett stort antal
vetenskapliga artiklar och genomgången visar att det finns starkt vetenskapligt stöd för
att hela familjen ska engageras i behandlingen, t ex i form av familjeterapi, familjefokuserad omvårdnad eller familjestödsprogram. Kunskapsöversikten visar också att familjerna ibland har behov av stöd och avlastning, framför allt om barnet eller ungdomen har allvarliga beteendestörningar.

Familjer och missbruk, om glömda barn och glömda föräldrar.

Anna-Bodil Bengtsson, Ingegerd Gavelin (2004)

Många svenska barn far illa idag. Den ojämförligt största gruppen är barn till alkoholmissbrukare. Ändå är både barnen och deras föräldrar i många avseende glömda. I boken beskrivs både barnens och föräldrarnas livssituation. Föräldraskapet är en stark kraft, som måste tillvaratas för att stödja dessa utsatta familjer. Både barn och föräldrar behöver bli sedda. För att det skall bli möjligt krävs bättre kunskapet och mer samarbete mellan mödra- och barnhälsovård, barnomsorg, skola, socialtjänst och missbruksvård. I bokens andra del finns konkreta förslag på hur man kan arbeta för att stödja både barn och föräldrar i familjer med missbruk, men även i andra utsatta familjer. Boken vänder sig både till studerande och yrkesverksamma. Tredje reviderade upplagan.

Familjers och vårdpersonals erfarenheter av barn och vuxna med autism

Benderix, Y. (2007)

The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism. The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with siblings (n = 14), the third comprises interviews with staff (n = 10) who have worked with the five children in a newly opened group home after one year and after four years, the fourth comprises a study with a questionnaire focusing on the views of staff (n = 152) on the work atmosphere in 58 group homes for adults with autism. The results from the interviews show that the parents had experienced grief over not having a child that was healthy and could develop normally. Before applying for a place in a group home they had been in a situation of great stress and were overloaded. Their children had very extreme deviant behaviour that they were not always able to control. This led to the families becoming increasingly isolated, the siblings being affected and several parents feeling that they were completely worn out. The results of the interviews carried out two years after their child had moved to a group home revealed that this gave the whole family feelings of release and relief. The parents also experienced an ethical dilemma consisting on the one hand of an ethical duty to care for their own child and on the other hand a feeling of relief when passing over responsibility to others. The results from the interviews with the siblings before the children moved, show that these siblings took responsibility in a precocious way. The siblings were often exposed to frightening and deviant behaviour.This led to several siblings feeling anxious and insecure at home. Having a brother or sister with autism led to relationships with friends being affected negatively. The siblings chose not to bring friends home because of the child's occasionally violent and destructive behaviour. When the staff had worked for one year in the group home it was seen that they were greatly involved in the children and their families. They had developed a very supportive work atmosphere among the staff but experienced stress that was triggered by violence. Focus group interviews with staff after four years of work revealed that four of the ten staff had left the job. Those who were still there, both the original and newly appointed staff desired more support and in-house training, particularly in coping with the then teenage children's violent behaviour. The staff who participated in the study of the work atmosphere in group homes for adults with autism described the atmosphere as being generally more creative and innovative than stagnating. There were two different types of group homes, those providing living accommodation only and those combining accommodation with daytime activities, the former were rated as having a better work atmosphere than the latter, which showed higher degree of conflict and lower degrees of motivation and challenge.

Family and Client Perspectives on Alternative Residential Settings for Persons With Severe Mental Illness

Friedrich, Rose Marie., Hollingsworth, Brenda, Hradek, Elisabeth, Friedrich, Bruce & Culp, Kennith (1999)

OBJECTIVE:
The housing preferences of persons with severe mental illness living in three types of community residences were examined, as were their perceptions of problems in these settings and the relationships between clients' and family members' housing preferences and perceptions of problems.
METHODS:
A closed-ended questionnaire was developed to gather demographic and diagnostic data and information about housing preferences and seven categories of service-related problems. It was completed by clients who lived in group settings with 24-hour on-site staff, in supported housing with on-site visits by staff, and in homes or apartments with no on-site professional services. Questionnaires were returned by 129 family members and 180 clients.
RESULTS:
Clients who lived in group settings were significantly more likely to be older, less educated, unemployed, and diagnosed as having schizophrenia than clients in other settings. Although a larger proportion of family members than clients preferred housing with more support, for both families and clients a statistically significant association was found between current and preferred residence. A strong and significant correlation was found between clients' and family members' perceptions of problems, which included stress on the family and clients' social isolation and relapse to illness. For clients who lived independently, a significantly greater proportion of both clients and families reported that social isolation was a problem.
CONCLUSIONS:
Although supported housing works well for some individuals, a continued need exists for an array of housing with varying levels of structure. The results suggest that clients and families identify the same problems as priorities.

Family Bereavement Program (FBP) approach to promoting resilience following the death of a parent

Sandler, I.N., Wolchik, S.A., Ayers, T.S., Tein, J. & Luecken, L. (2013)

This paper describes a research-based program designed to promote resilience of parentally-bereaved children and their bereaved surviving parent. A contextual resilience model is described as the conceptual foundation of the program. The program is designed to enhance specific parenting and coping skills and to help caregivers and children accomplish goals they set for themselves at the outset of the program. The content of the twelve-sessions and the approach to teaching and supporting parents work on their program and personal goals are described. Evaluation of the program using a randomized experimental design indicates that the program is effective in promoting resilient outcomes of children and of the bereaved parent six-years following their participation in the program.

Family burden and relatives` participation in psychiatric care: Are the patient`s diagnosis and the relation to the patient of importance?

Östman, M., Wallsten, T., & Kjellin, K. (2005)

BACKGROUND:
Studies that differentiate among diagnoses have detected divergent results in the experience of family burden.
AIM:
This study aimed to investigate differences in family burden and participation in care between relatives from subgroups of psychoses, affective disorders and 'other diagnoses', and between different subgroups of relatives.
METHOD:
In a Swedish longitudinal study performed in 1986, 1991 and 1997, 455 close relatives of both committed and voluntarily admitted patients were interviewed concerning different aspects of their burden, need for support and participation in the actual care situation.
RESULTS:
Relatives showed burdens in several of the aspects measured. In only one aspect of the investigated burden items was a difference found between different diagnostic subgroups. The relatives of patients with affective disorder more often had to give up leisure time. However, spouses showed more burdens and more often experienced sufficient participation in the patient's treatment than other subgroups while siblings more seldom experienced burdens and more seldom felt that their own needs for support had been met by the psychiatric services. Within each diagnostic subgroup there were differences between subgroups of relatives.
CONCLUSION:
Being a close relative, and living together with a severely mentally ill person in an acute situation, is one factor of importance for experiencing burden and participation in care, contradicting the conventional wisdom which differentiates between diagnoses.

Family burden, participation in care and mental health – an 11 year comparison of the situation of relatives to compulsorily and voluntarily admitted patients

Östman, Margareta, Hansson, Lars & Andersson, K. (2000)

The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.

Family caegiver´s future planning for younger and older adults with serious mental illness (SMI).

Corsentino, E. A., Molinari, V., Gum, A. M., Roscoe, L. A., & Mills, W. L. (2008)

This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.

Family caregivers' assessments of caring for a relative with dementia: a comparison of urban and rural areas

Ehrlich K, Boström AM, Mazaheri M, Heikkilä K, Emami A. (2015)

AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.

Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study

Graneheim UH, Johansson A, Lindgren BM. (2014)

Many people with dementia are cared for in their homes by family caregivers. As
the dementia progresses, admission of the family member to a nursing home becomes
inevitable. The aim of this meta-ethnographic study was to describe caregivers'
experiences of relinquishing the care of a family member with dementia to a
nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo,
between the years 1992 and 2012, was performed, and 10 qualitative articles,
based on 180 family caregivers' experiences, were included. The family
caregivers' described their experiences as a process that went from being
responsible for the decision, through living with the decision, adjusting to a
new caring role and having changed relationships. They felt unprepared and lonely
with these changes. They experienced loss, guilt and shame, but also feelings of
relief. Their roles in the nursing home environment were to make sure that the
individual needs of the person with dementia were respected and to monitor the
quality of care. They wished to maintain their relationship with the person with
dementia and to establish meaningful relationships with caring staff. The process
of relinquishing care is similar to a crisis process, which starts with a turning
point, followed by a coping face and finally the outcome of the process. The
adaption to the new situation can be facilitated if the family caregivers are
recognised as partners in the care of the person with dementia. The family
caregivers' unique knowledge of their relatives' previous life story should be
acknowledged in both care planning and daily care. Welcoming family caregivers to
regular meetings with staff can contribute to increase the feeling of
partnership. Offering staff clinical supervision could be one way of preparing
them to deal with the emotional strain reported by family caregivers.

Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease

Strang S., Osmanovic M., Hallberg C., Strang P. (2018)

Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member

Family caregivers of persons with dementia : experiences of burden, satisfaction and psychosocial intervention

Andrén, S. (2006)

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

Family caregivers of persons with dementia : Experiences of burden, satisfaction and psychosocial intervention

Andrén, S. (2006)

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

Family caregivers´ assessment of symptoms in persons with dementia using the GBS-scale: differences in rating after psychosocial intervention – an 18-month follow-up study

Dahlrup, B., Nordell, E., Andrén, S., & Elmståhl, S. (2011)

The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using the Gottfries-Bråne-Steen scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18-month follow-up irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers' sense of burden, satisfaction, and ability to delay nursing home placement.

Family caregivers´ assessments of caring for a relative with dementia: a comparison of urban and rural areas

Ehrlich, K., A-M., B., Mazaheri, M., Heikkilä, K., & Emami, A. (2015)

AIM:
This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors.
BACKGROUND:
Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas.
DESIGN:
A cross-sectional study design was used.
METHODS:
A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models.
RESULTS:
Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales.
CONCLUSIONS:
The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE:
To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.

Effectiveness of combining tangible symbols with the Picture Exchange Communication System to teach requesting skills to children with multiple disabilities including visual impairment

Ali E, MacFarland SZ, Umbreit J. (2011)

The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.

Effectiveness of culturally adapted Strengthening Families Programme 6-11 years among Portuguese families

Magalhães CCA, Kumpfer KL. (2015)

Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.

Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.

Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.

Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.

Effectiveness of school-based family and children's skills training for substance abuse prevention among 6-8-year-old rural children

Kumpfer KL, Alvarado R, Tait C, Turner C. (2002)

This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.

Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand

Oupra R, Griffiths R, Pryor J, Mott S. (2010)

In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.

Effectiveness of the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review

Menting, A. T. A., de Castro, B. O., & Matthys, W. (2013)

The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.

Effectiveness of the Strengthening Families Programme 10–14 in Poland for the prevention of alcohol and drug misuse: protocol for a randomized controlled trial

Okulicz-Kozaryn K, Foxcroft David R. (2012)

Background

Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.

Methods/Design

A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.

Discussion

The trial will provide information about the effectiveness of the SFP10-14 in Poland.

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial

Ali L, Krevers B, Sjöström N, Skärsäter I (2014)

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial

Ali L, Krevers B, Sjöström N, Skärsäter I (2014)

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites.

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome

Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y. (2013)

PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).

MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.

ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.

ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.

Effects of a sexual rehabilitation intervention program on stroke patients and their spouses

Song H, Oh H, Kim H, Seo W. (2011)

The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.

Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.

Kim JI, Lee S, Kim JH. (2013)

The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Effects of coping skills training, group support, and information for spouses of alcoholics: A controlled randomized study

Zetterlind, U., Hansson, H., Åberg-Örbeck, K., & Berglund, M. (2001)

Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.

Effects of early life stress on cognitive and affective function: an integrated review of human literature

Pechtel, P., & Pizzagalli, D. A. (2011)

Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.

Effects of family psychoeducation on expressed emotion and burden of care in first-episode psychosis: A prospective observational study

González-Blanch, C., V. Martín-Muñoz, et al. (2010)

The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Effects of Four Therapy Procedures on Communication in People with Profound Intellectual Disabilities

Lindsay WR, Black E, Broxholme S, Pitcaithly D, Hornsby N, Lindsay B. (2001)

A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.

Effects of maternal mental retardation and poverty on intellectual, academic, and behavioural status of school-age children

Feldman, MA., & Walton-Allen, N. (1997)

The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.

Effects of maternal stimulant medication on observed parenting in mother-child dyads with attentiondeficit/ hyperactivity disorder

Chronis-Tuscano, A., Rooney, M., Seymour, K. E., Lavin, H. J., Pian, J., Robb, A., … Stein, M. A. (2010)

This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.

Effects of Mental illness on family quality of life

Walton-Moss, B., Gerson, L., Rose, L. (2005)

Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.

Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial

Lam WK, Fals-Stewart W, Kelley ML. (2008)

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial.

Lam WK, Fals-Stewart W, Kelley ML. (2008)

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning

Effects of the "Preparing for the Drug Free Years" curriculum on growth in alcohol use and risk for alcohol use in early adolescence

Jisuk P, Rick K, Hawkins JD, Kevin PH, Terry ED, Susan CD, et al. (2000)

Preparing for the Drug-Free Years (PDFY) is a curriculum designed to help parents learn skills to consistently communicate clear norms against adolescent substance use, effectively and proactively manage their families, reduce family conflict, and help their children learn skills to resist antisocial peer influences. This study examined the effects of PDFY on the trajectories of these factors, as well as on the trajectory of alcohol use from early to mid adolescence. The sample consisted of 424 rural families of sixth graders from schools randomly assigned to an intervention or a control condition. Data were collected from both parents and students at pretest, posttest, and 1-, 2- and 3 1/2-year follow-ups. Latent growth models were examined. PDFY significantly reduced the growth of alcohol use and improved parent norms regarding adolescent alcohol use over time. Implications for prevention and evaluation are discussed.

Effects of war and organized violence on children: a study of Bosnian refugees in Sweden

Angel, B., Hjern, A., & Ingleby, D. (2001)

Data from 99 school-aged Bosnian refugee children living in Sweden were analyzed to reveal the patterns of war stress experienced and the relation between these stressors and current psychological problems. A significant pattern of associations emerged. When children had experienced much stress, talking about their experiences seemed to exacerbate their negative effects.

Effects on the child of alcohol abuse during pregnancy. Retrospective and prospective studies

Olegård R, Sabel KG, Aronsson M, Sandin B, Johansson PR, Carlsson C, Kyllerman M, Iversen K, Hrbek A. (1979)

Retrospective and prospective investigations of children to alcoholic women gave an incidence of fetal alcohol lesion of one per 300 deliveries of whom half had the complete fetal alcohol syndrome. Perinatal and infant mortalities were increased seven to tenfold and low birth weight (less than or equal to 2 500 g), preterm deliveries (less than 37 weeks) and smallness for gestational age (less than -2 S.D.) were increased eightfold, threefold and twelvefold, respectively. Small size at birth correlated with reduced mental performance later in life, 58% had IQ below 85 and 19% below 70.8% had cerebral palsy. The incidence of cerebral palsy associated with maternal inebriety was 1/5 000 deliveries, i.e. every sixth case of cerebral palsy. Tracing of alcoholic women during pregnancy and treatment gave favourable effect on intrauterine growth when sobriety could be induced early in pregnancy but could not protect from functional brain disturbance measured by neurological performance and be evoked response electroencephalography. Damage to the fetus by alcohol is now the largest known health hazard by a noxious agent that is preventable.

Effekter av långvarig extrem stress på relationen mellan föräldrar och barn.

Almqvist, K. (2011)

Teori och behandling av flyktingbarn med svår psykisk ohälsa
Flyktingbarn som söker en fristad i vårt land påverkas ofta av egna svåra upplevelser av krig, våld och övergrepp. Många utvecklar allvarliga tecken till psykisk ohälsa. En del barn utvecklar ett apatiskt uppgivenhetssyndrom. När de så kallade apatiska flyktingbarnen dök upp i början av 2000-talet var bristen på kunskap stor. Inte sällan ledde det till att barnen inte fick hjälp eller att insatserna försämrade barnens tillstånd. I dag har både forskning och erfarenheterna av förebyggande insatser och behandling gjort stora framsteg.

Denna bok är den första i sitt slag om teori och behandling av barn med svåra uppgivenhetssyndrom, kunskaper som rör alla traumatiserade flyktingbarn som, om de inte behandlas på rätt sätt, riskerar att utveckla uppgivenhetssyndrom. Bokens författare är forskare, läkare, psykologer, sjukgymnaster, jurister, psykoterapeuter, sjuksköterskor, socionomer och socialpedagoger. Boken tar bland annat upp:

Effekter av långvarig stress på föräldra-barnrelationen
Biologiska och psykologiska effekter av trauma och uppgivenhetssyndrom
Beskrivningar av olika behandlingsmodeller
Nutritionsbehandling vid uppgivenhetssyndrom
Förebyggande insatser
Historiska erfarenheter av uppgivenhetssyndrom
Mänskliga rättigheter och etik
Asylprocessen och juridik
Hur påverkas behandlaren?
Boken riktar sig till alla som möter flyktingbarn med svår psykisk ohälsa eller uppgivenhetssyndrom: läkare, sjuksköterskor, studenter och andra inom vård, socialtjänst, skola, förskola, kommuner och andra myndigheter men också alla viktiga personer som finns runt barnen och deras familjer i sociala nätverk och frivilligorganisationer.

Effekter för barn av stödprogram riktade till barn och/eller föräldrar när en förälder missbrukar alkohol eller andra droger- en kunskapsöversikt. Barn som anhöriga 2016:4

Järkestig Berggren Ulrika, Hanson Elizabeth (2016)

Syftet med denna kunskapsöversikt är att systematiskt kartlägga, granska och sammanställa kunskap om vilka utvärderade metoder och program som finns för att ge stöd till barn och/eller förälder när en förälder är beroende av alkohol eller andra droger. Kunskapsöversikten syftar också till att ge underlag för slutsatser om behov och riktning för vidare kunskapsutveckling och forskning.

Efficacy and safety of atomoxetine as add-on to psychoeducation in the treatment of attention deficit/hyperactivity disorder: a randomized, double-blind, placebo-controlled study in stimulant-naïve Swedish children and adolescents

Svanborg P, Thernlund G, Gustafsson PA, Hägglöf B, Poole L, Kadesjö B, et al. (2009)

OBJECTIVE: The primary objective of this study was to assess the impact of atomoxetine in combination with psychoeducation, compared with placebo and psychoeducation, on health-related quality of life (HRQL) in Swedish stimulant-naïve pediatric patients with attention deficit/hyperactivity disorder (ADHD). HRQL results will be presented elsewhere. Here, psychoeducation as well as efficacy and safety of the treatment are described. PATIENTS AND METHODS: A total of 99 pediatric ADHD patients were randomized to a 10-week double-blind treatment with atomoxetine (49 patients) or placebo (50 patients). Parents of all patients received four sessions of psychoeducation. Atomoxetine was dosed up to approximately 1.2 mg/kg day (< or = 70 kg) or 80 mg/day (> 70 kg). Improvement of ADHD symptoms was evaluated using the ADHD rating scale (ADHD-RS) and clinical global impression (CGI) rating scales. Safety was assessed based on adverse events (AEs). RESULTS: The study population was predominantly male (80.8%) and diagnosed with the combined ADHD subtype (77.8%). The least square mean (lsmean) change from baseline to endpoint in total ADHD-RS score was -19.0 for atomoxetine patients and -6.3 for placebo patients, resulting in an effect size (ES) of 1.3 at endpoint. Treatment response (reduction in ADHD-RS score of > or = 25 or > or = 40%) was achieved in 71.4 or 63.3% of atomoxetine patients and 28.6 or 14.3% of placebo patients. The lsmean change from baseline to endpoint in CGI-Severity was -1.8 in the atomoxetine group compared with -0.3 in the placebo group. The difference between treatments in CGI-Improvement at endpoint was -1.4 in favor of atomoxetine. No serious AEs occurred. The safety profile of atomoxetine was in line with the current label. CONCLUSIONS: Atomoxetine combined with psychoeducation was superior to placebo and psychoeducation in ADHD core symptoms improvement. The large ES might be a result of including stimulant-naïve patients only, but also may indicate a positive interaction between atomoxetine treatment and psychoeducation, possibly by increased compliance.

Efficacy of a camp-based intervention for childhood traumatic grief

McClatchey, I.S., Vonk, E.M. & Palardy, G. (2009)

Objective: This study examined the efficacy of a short-term, camp-based, trauma-focused grief intervention in reducing traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children. Method: For this nonequivalent comparison group study, 100 children were split into two groups, with one group serving as the immediate treatment group and the second group serving as the delayed treatment group. Results: The results were analyzed using chi-square, independent samples t tests, multiple and logistic regression and showed this short-term intervention to be followed by reduced traumatic grief and posttraumatic stress disorder symptoms. Conclusions: The results are discussed in relation to current research on and practice with bereaved children as well as implications for future research.

Efficacy of a home-visiting intervention aimed at improving maternal sensitivity, child attachment, and behavioral outcomes for maltreated children: a randomized control trial

MOSS, E., DUBOIS-COMTOIS, K., CYR, C., TARABULSY, G. M., ST-LAURENT, D. & BERNIER, A. (2011)

The efficacy of a short-term attachment-based intervention for changing risk outcomes for children of maltreating families was examined using a randomized control trial. Sixty-seven primary caregivers reported for maltreatment and their children (1-5 years) were randomly assigned to an intervention or control group. The intervention group received 8 weekly home visits directed at the caregiver-child dyad and focused on improving caregiver sensitivity. Intervention sessions included brief discussions of attachment-emotion regulation-related themes and video feedback of parent-child interaction. Comparison of pre- and posttest scores revealed significant improvements for the intervention group in parental sensitivity and child attachment security, and a reduction in child disorganization. Older children in the intervention group also showed lower levels of internalizing and externalizing problems following intervention. This is the first study to demonstrate the efficacy of short-term attachment-based intervention in enhancing parental sensitivity, improving child security, and reducing disorganization for children in the early childhood period.

Efficacy of meta-cognitive therapy for adult ADHD

Solanto, M. V, Marks, D. J., Wasserstein, J., Mitchell, K., Abikoff, H., Alvir, J. M. J., & Kofman, M. D. (2010)

OBJECTIVE:
The authors investigated the efficacy of a 12-week manualized meta-cognitive therapy group intervention designed to enhance time management, organization, and planning in adults with attention deficit hyperactivity disorder (ADHD).

METHOD:
Eighty-eight clinically referred adults who met DSM-IV criteria for ADHD according to clinical and structured diagnostic interviews and standardized questionnaires were stratified by ADHD medication use and otherwise randomly assigned to receive meta-cognitive therapy or supportive psychotherapy in a group modality. Meta-cognitive therapy uses cognitive-behavioral principles and methods to impart skills and strategies in time management, organization, and planning and to target depressogenic and anxiogenic cognitions that undermine effective self-management. The supportive therapy condition controlled for nonspecific aspects of treatment by providing support while avoiding discussion of cognitive-behavioral strategies. Therapeutic response was assessed by an independent (blind) evaluator via structured interview before and after treatment as well as by self-report and collateral informant behavioral ratings.

RESULTS:
General linear models comparing change from baseline between treatments revealed statistically significant effects for self-report, collateral report, and independent evaluator ratings of DSM-IV inattention symptoms. In dichotomous indices of therapeutic response, a significantly greater proportion of members of the meta-cognitive therapy group demonstrated improvement compared with members of the supportive therapy group. Logistic regression examining group differences in operationally defined response (controlling for baseline ADHD severity) revealed a robust effect of treatment group (odds ratio=5.41; 95% CI=1.77-16.55).

CONCLUSIONS:
Meta-cognitive therapy yielded significantly greater improvements in dimensional and categorical estimates of severity of ADHD symptoms compared with supportive therapy. These findings support the efficacy of meta-cognitive therapy as a viable psychosocial intervention.

Elements for successful parent-professional collaboration: The fundamental things apply as time goes by

Sheehey, P. H., & Sheehey, P. E. (2007)

Abstract The Individuals with Disabilities Education Act (IDEA) mandates parent-professional
collaboration. But difficulties between parent and professional collaboration seem to persist.
These difficulties do not seem to be related to a lack of mutual respect or lack of good intentions.
Perhaps difficulties exist because of a lack of common ground. Professionals' thinking is
grounded in theory from personnel preparation and on-the-job experiences. Parents' thinking is
grounded in personal experiences and information from professionals, other parents, technology,
and media. This article describes a mother's and father's experiences over the past 25 years in a
variety of settings as the parents of a child with severe disabilities and as special education professionals.
They present their experiences in special education as parents and provide suggestions
for parents and professionals to develop an effective collaborative relationship

Elever med flera funktionsnedsättningar i särskolan – utbildningens effekter och effektivitet

Granlund, Mats, Stéenson Anna-Lena, Roll-Pettersson Lise, Björck-Åkesson Eva, Sundin Margaretha & Kylén, Ann (1999)

Rapporten är ett resultat av ett forskningsprojekt om elever med flera funktionsnedsättningar i särskolan. Projektet belyser hur egenskaper hos barnet, egenskaper i barnets livsmiljöer samt de omgivande servicesystemen, samverkar och påverkar förutsättningar för barnets utveckling

Eli har en storebror

Karin Jacov, Jenny Sjödin (2018)

Eli har en storebror. Det är det många som har förstås. Men inte många har en storebror som Elis. Han är som en gåta tänker Eli ibland. Brorsan. En gåta som inte går att lösa. Ofta oroar sig Eli för brorsan. Men de hör ihop. Brorsan och Eli. Det är bara så. Och inte många har en storebror som Elis. Så det så. 

Eli har en storebror - en berättelse om syskonkärlek.

Embodiment of severe and enduring mental illness: finding meaning in schizophrenia

McCann TV, Clark E. (2004)

For many individuals, schizophrenia is a severe and enduring illness. While nurses need to understand the symptomatology of the illness in order to provide specific care and treatment, it also is important to find out how people with schizophrenia embody the illness. Capturing this knowledge will help nurses to provide more appropriate care to these individuals. This paper, which is taken from a larger qualitative study, reports the lived experience of young adults with schizophrenia. Three main themes emerged from the data, which highlighted how these individuals found meaning in schizophrenia. The first theme,"embodied temporality: illness as a catastrophic experience,"portrayed how schizophrenia affected participants' temporality or lived time. The second theme,"embodied relationality: illness as a mediator of social relationships,"reflected how the illness affected their relationships with others. The third theme,"embodied treatment: medications side effects as burdensome,"illustrated how the side effects of antipsychotic medications distorted the individual's perception of his or her body and how it compromised the ability to establish and maintain sexual relationships. The findings are important to mental health nurses because they highlight the need to be sensitive to how people with schizophrenia find meaning in their illness experience and to incorporate this knowledge into the care that they provide.

Emerging from Out of the Shadows? Service User and Carer Involvement in Systematic Reviews

Braye, S. and M. Preston-Shoot (2005)

The systematic review methodology literature refers to the importance of involving stakeholders, including service users & carers, in the research. However, compared with other aspects of the methodology, this aspect of conducting systematic reviews is underdeveloped & the practice of involvement appears highly variable. This article draws on the experience of working with service users & carers in one systematic review to review the barriers to participation & the components of effective involvement. It suggests that quality standards can be identified for service user & carer involvement in systematic reviews, which will benefit policy & practice development. 77 References.

Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress

Goossens, P.J.J., Van Wijngaarden, B., Knoppert-Van der Klein, E.A.M. Van Achterberg, T (2008)

AIMS:
This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles.
METHODS:
Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers' consequences, the Utrecht Coping List (UCL) to measure caregivers' coping styles, and the 12-item General Health Questionnaire (GHQ-12) to measure caregiver distress. Scale (sub)scores were calculated and relationships between the results were explored.
RESULTS:
Caregiver consequences were found to be limited, although approximately 30% reported distress. Male caregivers used a more avoiding coping style and undertook activities to provide diversion. Female caregivers used a less active approach and sought less social support. Correlations were found between the IEQ overall score and its subscales 'tension' and 'worrying' and the UCL subscales 'palliative reaction pattern' and 'passive reaction pattern'. Distress appears to occur more often in caregivers who report more consequences, tend to use a more avoiding coping style, and have a more passive reaction pattern.
CONCLUSIONS:
Clinicians should assess symptoms of caregiver distress. When caregiver distress is noticed, efforts should be undertaken to support the caregiver and teach them skills to cope effectively with the consequences they experience in order to stay well.

Family caregiving: The positive impact on adolescent relationships’

Beach, D. (1997)

Adult children are a significant contingent of elder care providers; a number of these individuals simultaneously care for children of their own while coping with caregiving commitments. Unfortunately, there is a paucity of information regarding the caregiving impact on these children and young adults. Moreover, the possible positive consequences of caring for an impaired elder are rarely mentioned. The current study was undertaken to examine the potential positive caregiving experiences of adolescents and their perceptions of relational enhancement as a result of caregiving. Twenty adolescents aged 14-18 were interviewed and asked a series of semistructured questions concerning satisfaction related to caregiving. To be included, respondents had to be a child, grandchild, or niece/nephew of an Alzheimer's (or Alzheimer's Type Dementia) patient cared for by the adolescent's immediate family. Employing features of content analysis methodology, all interviews were audiotaped and transcribed verbatim. The results merged into four primary categories: 1) increased sibling activity/sharing; 2) greater empathy for older adults; 3) significant mother-adolescent bonding and 4) peer relationship selection and maintenance. The implications for future research and practice are discussed.

Family Carers of stroke survivors: needs, knowledge, satisfaction and competence in caring

Mackenzie, Ann, Perry, Lin, Lockhart, Elizabeth, Cottee, Mark, Cloud, Geoffrey & Mann, Helen (2007)

PURPOSE:
To examine the support required by family carers for stroke survivors.
METHODS:
Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).
RESULTS:
Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.
CONCLUSIONS:
Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.

Family characteristics as mediator of the influence of problem drinking and multiple risk status on child mental health

Roosa, M., Dumka, L., & Tein, JY. (1996)

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.

Family Connections: A Program for Relatives of Persons with Borderline Personality Disorder

Hoffman, P. D., Fruzzetti, A. E., Buteau, E., Neiditch, E. R., Penney, D., Bruce, M. L., et al. (2005)

This study assessed changes in family members who participated in Family Connections, a 12-week manualized education program for relatives of persons with borderline personality disorder (BPD). Family Connections, led by trained family members, is based on the strategies of standard Dialectical Behavior Therapy (DBT) & DBT for families. The program provides (a) current information & research on BPD, (b) coping skills, (c) family skills, & (d) opportunities to build a support network for family members. Forty-four participants representing 34 families completed the pre-, post-, & 6-month postbaseline self-report questionnaires. Analyses employing hierarchical linear modeling strategies showed significant reductions in grief & burden, & a significant increase in mastery from pre- to post-group assessment. Changes were maintained at 6 months post baseline. 1 Table, 19 References. Adapted from the source document.

Family Connections: An Education and Skills Training Program for Family Member Well Being: A Leader's Perspective

Penney, D. (2008)

This chapter describes the Family Connections (FC) program, a 12-week, two-hour, interactive, manualized, education/skills training course for relatives of persons with borderline personality disorder (BPD) that is co-led by trained family members. It explicates the training of co-leaders, the registration process for participants, a detailed description of the curriculum's six modules, and consideration of the on-going challenges faced by participants after the program ends. The introduction describes historical development of the program. Subsequent sections are organized into two parts: each opens with a segment that presents key ideas, which is followed by 'Leader Observations' the reflections of a seasoned leader. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

Family context and young children’s responses to earthquake

Proctor, L. J., Fauchier, A., Oliver, P. H., Ramos, M. C., Rios, M. A., & Margolin, G. (2007)

BACKGROUND:
Family context can affect children's vulnerability to various stresses, but little is known regarding the role of family variables on children's reactions to natural disaster. This prospective study examined the influence of predisaster observed parenting behaviors and postdisaster parental stress on young children's distress following an earthquake.

METHODS:
Participants were 117 two-parent families with a child age 4-5 at the initial assessment. The families experienced different degrees of impact from the earthquake. Pre-earthquake family context comprised observations of parents' positive and negative behaviors during a parent-child play task. Eight months after the earthquake, mothers reported symptoms of parental stress and children's distress.

RESULTS:
Earthquake impact and children's distress symptoms were moderately correlated (r = .44), but certain pre-earthquake parental behaviors moderated the relationship. The dose-response association between earthquake impact and children's symptoms did not hold for families in which fathers showed high levels of negative behaviors with daughters, or mothers showed low levels of positive behaviors with sons. In addition, results consistent with full mediation for boys (and partial mediation for girls) indicated that 86% of the total effect of earthquake impact on boys' distress (and 29% on girls' distress) occurred through the mediator of reported parental stress.

CONCLUSIONS:
These findings demonstrate that young children's responses to an abrupt, negative environmental event, such as an earthquake, are influenced in part by the nature of the parent-child relationship prior to the event as well as by the responses parents exhibit following the event.

Family education seminars and social functioning of adults with chronic aphasia

Hinckley JJ, Packard MEW. (2001)

Aphasia affects functional activities and participation in social roles years after onset. Some group and individual programs have reported success in improving social activities and perceived wellness. These programs typically last several weeks or months. A short, 2-day seminar style program designed for adults with chronic aphasia and their families is described in this report. Six-month follow-up data from participant pairs demonstrates a significant improvement in functional activity level, improved knowledge of aphasia, and improved family relationships. Nonparticipant pairs did not demonstrate any changes over the same period. These findings replicate and extend those of a previous study on the same 2-day seminar [Top. Stroke Rehabil. 2 (1995) 53.]. The results of this study demonstrate the important outcomes of even a very brief program designed to address the long-term psychosocial needs of adults living with aphasia and their families. Educational objectives: As a result of this activity, the participant will be able to: (1) describe a brief family education seminar for adults with chronic aphasia; (2) discuss outcomes in family adjustment, community reintegration, and activities of daily living associated with participation in a family education seminar; and (3) evaluate areas of programming and outcomes that should be addressed in future research.

Family environmental and genetic influences on children’s future chemical dependency

Kumpfer KL, De Marsh JP. (1985)

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Family Health Conversations: How Do They Support Health?, Nursing Research and practice

Persson, C., & Benzein, E. (2014)

Research shows that living with illness can be a distressing experience for the family and may result in suffering and reduced health. To meet families' needs, family systems intervention models are developed and employed in clinical contexts. For successful refinement and implementation it is important to understand how these models work. The aim of this study was therefore to describe the dialogue process and possible working mechanisms of one systems nursing intervention model, the Family Health Conversation model. A descriptive evaluation design was applied and 15 transcribed conversations with five families were analyzed within a hermeneutic tradition. Two types of interrelated dialogue events were identified: narrating and exploring. There was a flow between these events, a movement that was generated by the interaction between the participants. Our theoretically grounded interpretation showed that narrating, listening, and reconsidering in interaction may be understood as supporting family health by offering the families the opportunity to constitute self-identity and identity within the family, increasing the families' understanding of multiple ways of being and acting, to see new possibilities and to develop meaning and hope. Results from this study may hopefully contribute to the successful implementation of family systems interventions in education and clinical praxis.

Family intervention to prevent depression and substance use among adolescents of depressed parents

Mason, W. A., Haggerty, K. P., Fleming, A. P., & Casey-Goldstein, M. (2012)

Parental depression places offspring at elevated risk for multiple, co-occurring problems. The purpose of this study was to develop and preliminarily evaluate Project Hope, a family intervention for the prevention of both depression and substance use among adolescent-aged children (M = 13.9 years) of depressed parents. The program was created by blending two empirically supported interventions: one for depression and another for substance use. Thirty families were randomly assigned to either Project Hope (n = 16) or a wait-list control condition (n = 14). Pretests, posttests (n = 29), and 5-month follow-ups (n = 28) were conducted separately with parents and youth via phone interviews. Questions asked about the family depression experience, family interactions, family management, coping, adolescent substance use beliefs and refusal skills, adolescent depression, and adolescent substance use. Project Hope was fully developed, manualized, and implemented with a small sample of targeted families. Engagement in the program was relatively high. Preliminary outcome analyses were conducted using 2 (Group) ×3 (Time) analyses of covariance. Results provided some evidence for significant improvements among intervention compared to control participants in indicators of the family depression experience, family management, and coping, and a statistically significant decrease from pretest to posttest in alcohol quantity for intervention compared to control youth. Next steps for this program of research are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Family intervention with bereaved children

Black, D. & Urbanowicz, M (1987)

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed

Family intervention with bereaved children

Black, D., & Urbanowicz, M. (1987)

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.

Family Intervention: Telephone Tracking (FITT): A Pilot Stroke Outcome Study

Bishop D, Miller I, Weiner D, Guilmette T, Mukand J, Feldmann E, et al. (2014)

Objective: The goal of this study was to preliminarily test the efficacy of a telephone intervention, Family Intervention: Telephone Tracking, designed to assist stroke survivors and their primary caregivers during the first 6 months after stroke. Method: Forty-nine stroke survivors and their caregivers were randomly assigned to treatment as usual or treatment as usual plus the telephone intervention. Global outcomes are reported for health care utilization, family functioning, and general functioning. Results: Family and general functioning were positively and significantly changed at 3 and 6 months. Health care utilization was positively and significantly changed at 3 months. Conclusion: Findings suggest that the model has the potential to decrease health care utilization and improve quality of life for stroke survivors and their caregivers. Further study is warranted.

Family member´s expectation of the psychiatric health-care professionals´ approach towards them

Ewertzon, M., B. Andershed, et al. (2011)

The importance of involving family members in the care of individuals with schizophrenia or other psychotic illnesses has received increasing attention within psychiatric healthcare services. However, several studies suggest that family members often experience a lack of involvement. Furthermore, research indicates that family members' experience of the professional's approach has bearing on whether they feel involved or not. Thus, the aims of this study were to investigate the level of importance that the family members of individuals with schizophrenia or other psychotic illnesses ascribe to the professionals' approach, the level of agreement between their experiences and what they consider as important, and aspects they consider to be important with regards to contact with professionals. Seventy family members from various parts of Sweden participated. Data were collected by the Family Involvement and Alienation Questionnaire and open-ended questions. The median level and quartiles were used to describe the distribution, and percentage agreement was analysed. Open-ended questions were analysed by qualitative content analysis. The results reveal that the majority of the participants consider Openness, Confirmation, and Cooperation as important aspects of a professional's approach. Continuity emerged as an additional aspect. The results show a low level of agreement between the participants' experience and what they consider as important.

Family members' experiences with intensive care unit diaries when the patient does not survive

Johansson Maria, Wåhlin, Magnusson Lennart, Runeson Ingrid (2019)

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

Family members' experiences with intensive care unit diaries when the patient does not survive

Johansson Maria, Wåhlin Ingrid, Magnusson Lennart, Runeson Ingrid, Hanson Elizabeth (2018)

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

Family members' strategies when their elderly relatives consider relocation to a residential home - Adapting, representing and avoiding

Söderberg, M., Ståhl, A., & Melin Emilsson, U. (2012)

The aim of this article is to reveal how family members act, react and reason when their elderly relative considers relocation to a residential home. Since family members are usually involved in the logistics of their elderly relative's relocation, yet simultaneously expected not to influence the decision, the focus is on how family members experience participation in the relocation process in a Swedish context. 17 family members are included in 27 open, semi-structured interviews and follow-up contacts. Prominent features in the findings are firstly the family members' ambition to tone down their personal opinions, even though in their minds their personal preferences are clear, and secondly, the family members' ambivalence about continuity and change in their everyday lives. Family members are found to apply the adapting, the representing, or the avoiding strategy, indirectly also influencing their interaction with the care manager. Siblings applied the adapting strategy, spouses the representing strategy, while family members in the younger generation at times switched between the strategies.

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic Y.,Tishelman C., Lindqvist O., Goliath I. (2018)

Abstract:
Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

Family Obligations and Social Change

Finch, J. (1989)

Finch discusses the nature of family life, especially concepts of duty, responsibility and obligation and how these factors operate in family and kin relationships.

Family preservation and family support programs: child maltreatment outcomes across client risk levels and program types.

Chaffin M, Bonner BL, Hill RF. (2001)

OBJECTIVES:
This study evaluated client-level outcomes among an entire statewide group of Family Preservation and Family Support (FPFS) programs funded under PL 103-66.
METHOD:
A total of 1,601 clients (primarily low income, moderate to high risk with no current involvement in the child protection system) were assessed and followed over time for future child maltreatment events reported to Child Protective Services. The study compared program completers with program dropouts, compared recipients of more lengthy full-service programs with recipients of one-time services, and examined the effects of program duration, intensity, service site (center-based vs. home based) and service model/content. Effects were modeled using survival analysis and variable-exposure Poisson hierarchical models, controlling for initial client risk levels and removing failure events because of surveillance bias. Changes in lifestyle, economic and risk factors were also examined.
RESULTS:
A total of 198 (12.2%) participants had at least one defined failure event over a median follow-up period of 1.6 years. Controlling for risk and receipt of outside services, program completers did not differ from program dropouts or from recipients of one-time services, and there was no relationship between program intensity or duration and outcomes. Program types designed to help families meet basic concrete needs and programs using mentoring approaches were found to be more effective than parenting and child development oriented programming, and center-based services were found to be more effective than home-based services, especially among higher risk parents.
CONCLUSIONS:
The findings did not support the effectiveness of these services in preventing future maltreatment cases, and raised questions about a number of common family support assumptions regarding the superiority of home-visiting based and parent training services. A number of possible reasons for this are explored.

Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents

Banach, M., J. Iudice, et al. (2010)

Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed. Adapted from the source document.

Family support for stroke: a randomised controlled trial.

Mant J, Carter J, Wade DT, Winner S. (2000)

Background

Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

Methods

Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

Findings

323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0·03), SF-36 scores (energy p=0·02, mental health p=0·004, pain p=0·03, physical function p=0·025, and general health perception p=0·02), quality of life on the Dartmouth co-op chart (p=0·01), and satisfaction with understanding of stroke (82 vs 71%, p=0·04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0·04), but use of other services was similar.

Interpretation

Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

Family support for stroke: one year follow up of a randomised controlled trial.

Mant J, Winner S, Roche J, Wade DT. (2005)

BACKGROUND:
There is evidence that family support can benefit carers of stroke patients, but not the patients themselves.
OBJECTIVE:
To extend the follow up of a single blind randomised controlled trial of family support for stroke patients and carers to one year to ascertain whether there were any late effects of the intervention.
METHODS:
The study was a randomised controlled trial. Patients admitted to hospital with acute stroke who had a close carer were assigned to receive family support or normal care. Families were visited at home by a researcher 12 months after the stroke, and a series of questionnaires was administered to patient and carer.
RESULTS:
The benefits to carers mostly persisted, though they were no longer statistically significant because some patients were lost to follow up. There was no evidence of any effects on patients.
CONCLUSION:
Family support is effective for carers, but different approaches need to be considered to alleviate the psychosocial problems of stroke patients.

Family supports and services in early intervention: A bold vision.

Turnbull AP, Summers JA, Turnbull R, Brotherson MJ, Winton P, Roberts R, et al. (2007)

This article utilizes four knowledge sources to characterize a current gap in policy and practice related to serving families in early intervention (birth to 5) programs. It argues that the field of early intervention has focused primarily on implementing family-centered practices by focusing on how families and professionals should interact. The field has not sufficiently addressed what supports and services should be offered to families to enhance the likelihood of positive outcomes for families themselves and for their children with disabilities. The paper concludes with recommendations for enhancing policy, research, and professional development related to family services and supports.

Family therapy techniques

Minuchin, S. and H. C. Fishman (1981)

A master of family therapy, Salvador Minuchin, traces for the first time the minute operations of day-to-day practice. Dr. Minuchin has achieved renown for his theoretical breakthroughs and his success at treatment. Now he explains in close detail those precise and difficult maneuvers that constitute his art. The book thus codifies the method of one of the country's most successful practitioners.

Family Treatment Approaches for Depression in Adolescent Males

Pruitt, I. T. P. (2006)

Adolescent depression is a serious and common disorder. Though adolescent males are less likely to report depression than females, they have serious risks associated with the disorder, like suicide, future substance abuse, and illegal activity. Several gender differences have been observed among depressed adolescents and should be considered in assessment and treatment. Little efficacy research exists for family treatments of depression in adolescent males, though several approaches have been proposed. These approaches include Structural Family Therapy, Interpersonal Family Therapy, and Attachment-Based Family Therapy. These treatments have been found useful in clinical settings, but much more efficacy research is necessary. Adapted from the source document.

Family-Based Interventions for Substance Use and Misuse Prevention

Kumpfer KL, Alvarado R, Whiteside HO. (2003)

Because "substance abuse" is a "family disease" of lifestyle, including both genetic and family environmental causes, effective family strengthening prevention programs should be included in all comprehensive substance abuse prevention activities. This article presents reviews of causal models of substance use and evidence-based practices. National searches by the authors suggest that there is sufficient research evidence to support broad dissemination of five highly effective family strengthening approaches (e.g., behavioral parent training, family skills training, in-home family support, brief family therapy, and family education). Additionally, family approaches have average effect sizes two to nine time larger than child-only prevention approaches. Comprehensive prevention programs combining both approaches produced much larger effect sizes. The Strengthening Families Program (SFP) is the only one of these programs that has been replicated with positive results by independent researchers with different cultural groups and with different ages of children. Few research-based programs have been adopted by practitioners, partly because of technology transfer issues. Overall, research on ways to improve dissemination, marketing, training, and funding is needed to improve adoption of effective prevention programs.

Family-centeredness in service and rehabilitation planning for children and youth with cerebral palsy in Finland

Jeglinsky, I. (2012)

Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.

Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.

Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.

Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.

Family-centeredness in service and rehabilitation planning for children and youth with cerebral palsy in Finland. (Doctoral dissertation),

Jeglinsky, I. (2012)

Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.

Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.

Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.

Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.

Family-Oriented Interventions for the Prevention of Chemical Dependency in Children and Adolescents

Demarsh J, Kumpfer KL. (1986)

Researchers and clinicians are begining to recognize the valuable resource that parents and families are for increasing the effectiveness of substance abuse prevention programs for youth and adolescents. To date, however, most prevention interventions have been developed for use in community or school-based programs. There is a growing number of family-oriented interventions which have been developed specifically as substance abuse prevention programs, or may be easily adapted for use by prevention specialists. This article will review these family-oriented interventions and discuss outcome effectiveness data when available.

Family-oriented program models, helpgiving practices, and parental control appraisals

Trivette, Carol, Dunst, Carl, Boyd, Kimberly & Hamby, Deborah (1995)

Findings from 2 studies investigating sources of variations in parents' assessment of help-giving practices and personal control appraisals are reported. A total of 280 parents of young children with disabilities or at-risk for poor developmental outcomes participated. Parents were involved in early intervention and human services programs that differed along a continuum from professionally centered to family focused. Demographic characteristics showed no relationship to either help-giving practices or perceptions of personal control. In contrast, program characteristics were highly related to help-giving practices, and both program characteristics and help-giving practices were highly related to personal control.

Fathers in neonatal units: Improving infant health by supporting the baby-father bond and mother-father coparenting

Fisher Duncan, Khashu Minesh Adama Esther A. Feeley Nancy (2018)

Abstract

The Family Initiative's International Neonatal Fathers Working Group, whose members are the authors of this paper, has reviewed the literature on engaging fathers in neonatal units, with the aim of making recommendations for improving experience of fathers as well as health outcomes in neonatal practice. We believe that supporting the father-baby bond and supporting co-parenting between the mother and the father benefits the health of the baby, for example, through improved weight gain and oxygen saturation and enhanced rates of breastfeeding. We find, however, that despite much interest in engaging with parents as full partners in the care of their baby, engaging fathers remains sub-optimal. Fathers typically describe the opportunity to bond with their babies, particularly skin-to-skin care, in glowing terms of gratitude, happiness and love. These sensations are underpinned by hormonal and neurobiological changes that take place in fathers when they care for their babies, as also happens with mothers. Fathers, however, are subject to different social expectations from mothers and this shapes how they respond to the situation and how neonatal staff treats them. Fathers are more likely to be considered responsible for earning, they are often considered to be less competent at caring than mothers and they are expected to be "the strong one", providing support to mothers but not expecting it in return. Our review ends with 12 practical recommendations for neonatal teams to focus on: (1) assess the needs of mother and father individually, (2) consider individual needs and wants in family care plans, (3) ensure complete flexibility of access to the neonatal unit for fathers, (4) gear parenting education towards co-parenting, (5) actively promote father-baby bonding, (6) be attentive to fathers hiding their stress, (7) inform fathers directly not just via the mother, (8) facilitate peer-to-peer communication for fathers, (9) differentiate and analyse by gender in service evaluations, (10) train staff to work with fathers and to support co-parenting, (11) develop a father-friendly audit tool for neonatal units, and (12) organise an international consultation to update guidelines for neonatal care, including those of UNICEF.

Feeling heard: a support group for siblings of children with developmental disabilities

McCullough, K. and S. R. Simon (2011)

Siblings are often overlooked in the provision of services to families of children with disabilities. These children also need education and support to ensure their own optimal development. Moreover, as funding and support services decrease, engaging siblings is paramount to the health and safety of children with developmental disabilities. Focusing on the observed therapeutic impact of the group process, this article describes and assesses a model for facilitating a support group for siblings of children with developmental delays. It advocates for significantly increased attention within the social work community to the needs of the sibling population.

Fetal alcohol spectrum disorder prevalence estimates in correctional systems: a systematic literature review.

Popova S, Lange S, Bekmuradov D, Mihic A, Rehm J. (2011)

OBJECTIVES:
The objective of this study was to conduct a systematic search of the literature for studies that estimated the prevalence/incidence of Fetal Alcohol Spectrum Disorder (FASD) in correctional systems in different countries and, based on these data, to estimate a) the number of people with Fetal Alcohol Syndrome (FAS)/FASD within the criminal justice system population, and b) the relative risk of becoming imprisoned for individuals with FAS/FASD compared with those without FAS/FASD.
METHOD:
A systematic world literature review of published and unpublished studies concerning the prevalence/incidence of FASD in correctional systems was conducted in multiple electronic bibliographic databases.
SYNTHESIS:
Very little empirical evidence is available on the prevalence of FASD in correctional systems. There were no studies estimating the prevalence/incidence of FASD in correctional systems found for any country other than Canada and the USA. The few studies that have identified incarcerated individuals with FASD estimate that the number of undiagnosed persons in correctional facilities is high. Based on available Canadian data, this study estimates that youths with FASD are 19 times more likely to be incarcerated than youths without FASD in a given year.
CONCLUSION:
More studies investigating the prevalence/incidence of alcohol-affected people in the criminal justice system are required. There is an urgent need to raise awareness about the prevalence and disabilities of individuals with FASD in the criminal justice system and about appropriate responses. The criminal justice system is an ideal arena for intervention efforts aimed at the rehabilitation and prevention or reduction of recidivism in this unique population.

Fetal Alcohol Spectrum Disorders

Rangmar Jenny, Fahlke Claudia (2013)

Kunskapsöversikten har skrivits på uppdrag av Socialstyrelsen. Det är en sammanställning av aktuell vetenskaplig litteratur rörande psykosociala konsekvenser av alkoholrelaterade fosterskador samt preventiva aspekter på denna typ av fosterskador.

Fetal alcohol spectrum disorders in Finnish children and adolescents. Diagnosis, cognition, behavior, adaptation and brain metabolic alterations (Akademisk avhandling).

Fagerlund Å. (2013)

När en gravid kvinna dricker alkohol gör hennes foster det också. Eftersom det inte finns
någon skyddande blodbarriär kan alkohol fritt korsa moderkakan och orsaka omfattande
skador både fysiologiskt, neurologiskt och beteendemässigt på det växande fostret.
Alkoholrelaterade fosterskador går under den engelska termen Fetal Alcohol Spectrum
Disorders (FASD, Fetala alkohol spektrum störningar). Trots att alkoholrelaterade skador är
fullt möjliga att förhindra utgör de idag en av de vanligaste orsakerna till utvecklingsstörning
i västvärlden. I västländer där prevalensundersökningar har gjorts är antalet barn som
föds med FASD fler än de med autismspektrumstörningar, Downs syndrom eller cerebral
pares. I siffror handlar det om mellan 1 och 6 % av alla levande födda, vilket i Finland skulle
innebära att 600–3600 barn föds med alkoholrelaterade fosterskador varje år. Utöver de
direkta toxiska effekterna av alkohol utsätts barnen som föds med FASD ofta för en dubbel
börda i livet. Dels har barnen redan vid födseln neurologiska skador, dels föds de också
med stor sannolikhet in i en familj med minst en missbrukande förälder och en omgivning
där de utsätts för ytterligare risker i sin utveckling. Trots detta är FASD idag en starkt
underdiagnosticerad grupp inom hälso- och sjukvården.
Den här avhandlingen utgör en del av ett större multinationellt forskningsprojekt, The
Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), som initierades av det
nationella institutet för alkoholmissbruk och alkoholism (National Institute of Alcohol Abuse and
Alcoholism, NIAAA) i USA. Det huvudsakliga syftet med den föreliggande avhandlingen var att
undersöka en kohort med barn och ungdomar med alkoholrelaterade fosterskador i Finland.
Avhandlingen består av fem studier med ett brett fokus på diagnos, kognition, beteende,
adaptiva färdigheter och avvikelser i hjärnans ämnesomsättning hos barn och unga med FASD.
Deltagarna bestod av fyra olika grupper: en grupp som varit utsatt för alkohol under
graviditeten (FASD); en IQ-matchad kontrollgrupp som huvudsakligen bestod av barn med
specifika inlärningssvårigheter (Specific Learning Disorder, SLD); och två grupper med normala
kontroller (CON1 och CON2). Deltagarna rekryterades via genomgång av medicinska journaler,
slumpmässigt urval ur det finska befolkningsregistret och e-postförfrågningar till studerande.
Med diagnoser som är såpass svåra att fastställa som de inom FASD-spektret är det av stor
betydelse att de föreliggande studierna har utförts i nära samarbete med ledande experter
på FASD (prof. Edward Riley och prof. Sarah Mattson från Center for Behavioral Teratology vid
San Diego State University, USA och prof. Eugene Hoyme från Sanford School of Medicine,
University of South Dakota, USA). Deltagarna i föreliggande studier är således mycket noggrant
undersökta och diagnosticerade. I den här avhandlingen testades för första gången de
amerikanska reviderade Institute of Medicines diagnoskriterier för FASD på en finsk population.
Kriterierna visade sig tillförlitliga i att särskilja olika undergrupper bland alkoholskadade barn.
Ett annat värdefullt hjälpmedel som användes vid diagnosticeringen var en speciellt utarbetad
skala för bedömning av de specifika dysmorfa dragen vid FASD (Studie 1).
Syftet med Studie 2 var att klargöra relationen mellan alkoholrelaterade dysmorfa drag och
allmän kognitiv kapacitet. Resultaten visade på en signifikant korrelation mellan dysmorfa
drag och kognitiv kapacitet, så att barn med större avvikelser i sin tillväxt och med mer
dysmorfa drag också tenderade att uppvisa större kognitiva svårigheter. Sambandet var
emellertid måttligt och det kan betonas att fysiologiska markörer och kognitiv kapacitet inte
alls alltid går hand i hand hos individer med FASD.
Barnen och ungdomarna i FASD-gruppen uppvisade omfattande problem i beteende och
mental hälsa jämfört med kontrollgruppen (CON1). I studie 3 utforskades närmare hurudana
risk- och skyddande faktorer som kunde associeras med beteendeproblemen i FASD-gruppen.
Studien fokuserade på diagnosrelaterade och omgivningsrelaterade faktorer. Resultaten visade
att två grupper med förhöjd risk för beteendeproblem kunde urskiljas: 1) Ju längre tid ett barn
hade spenderat intaget på barnhem desto högre risk för beteendeproblem och 2) ju mindre
dysmorfa drag ett barn med FASD hade desto mer omfattande beteendeproblem uppvisade
barnet. Resultaten understryker betydelsen av att inom hälso- och sjukvården uppmärksamma
och ge vård och adekvata insatser också (eller framför allt) till mindre synligt alkoholskadade
barn. Det är också av stor vikt att uppmärksamma behoven och välmåendet hos de barn med
FASD som växer upp på olika former av barnhem. För dessa barn verkar kombinationen av
medfödda fysiologiska och psykologiska skador tillsammans med minskad möjlighet till en nära
och kontinuerlig relation till en närstående vuxen göra dem extra utsatta och sårbara i livet.
Studie 4 fokuserade på adaptiva färdigheter så som kommunikationsförmåga, förmåga att
klara ett dagligt liv och sociala förmågor. Adaptiva färdigheter handlar med andra ord om
förmågor som gradvis hjälper en individ att klara ett självständigt liv, upprätthålla sociala
relationer och integreras i samhället. Resultaten visade att de adaptiva färdigheterna hos
barn och unga som växer upp med FASD är avsevärt sämre än hos både normalt utvecklade
barn och IQ-matchade barn med inlärningssvårigheter. Klart skilda adaptiva profiler
uppdagades där FASD-gruppen klarade sig sämre än barnen med inlärningssvårigheter
som i sin tur klarade sig sämre än barnen i den normala kontrollgruppen. Det är viktigt att
poängtera att barnen med inlärningssvårigheter presterade bättre än FASD-gruppen trots
att de kognitivt befann sig på samma nivå. Den här studien är den första att jämföra adaptiva
förmågor hos en grupp barn och unga med FASD jämfört med både en grupp IQ-matchade
barn med inlärningssvårigheter och en grupp normalt utvecklade barn.
Slutligen påvisades i studie 5 neurokemiska förändringar med hjälp av magnetisk resonansspektroskopi
(MRS) hos tonåringar och unga vuxna med FASD som kunde relateras till
alkoholbruk under fosterstadiet 14–20 år tidigare. De neurokemiska förändringarna kunde
påvisas i ett flertal områden i hjärnan: i den frontala och parietala hjärnbarken, i corpus
callosum, thalamus, i frontala områden med vit substans samt i lilla hjärnans nucleus dentatus.
Förändringarna stämmer överens med den neuropsykologiska profilen vid FASD. Glia celler (vit
hjärnsubstans) verkade mer påverkade av alkohol under fosterstadiet än neuron (nervceller).
Sammantaget kan konstateras att större samhälleliga ansträngningar och resurser borde
fokuseras på att känna igen och diagnosticera FASD och på att stöda speciellt utsatta
riskgrupper av alkoholskadade barn och unga. Utan tillräcklig intervention och stöd löper
de en stor risk för marginalisering och utslagning, vilket är kostsamt inte bara för samhället
utan också för de många barn som växer upp med FASD.

Hypnosis treatment of sleeping problems in children experiencing loss

Hawkins, P. & Polemikos, N. (2002)

There is considerable research and clinical evidence that children who experience loss become traumatized. The results of traumatization include sleeping problems, for example difficulties in initiating sleep and sleep terrors. Psychological intervention programmes, including hypnotherapy, have been shown to have some success in helping children to overcome their sleeping problems. In the present study, a new paradigm qualitative methodology was used in which a small group of children were taught self-hypnosis to manage their sleep difficulties. Within the group, the children's experiences of utilizing self-hypnosis at home were discussed, and a consensus reached concerning its effects. Complementary data were collected through interviews with caregivers and by completion of the Southampton Sleep Management Schedule (Bartlet and Beaumont, 1998). From the study it was concluded that young children can be taught self-hypnosis in order to manage their sleeping problems effectively. Furthermore, the present study demonstrated that children can be involved in a collaborative research group.

Hälsa och välbefinnande för barn och ungdomar med funktionsnedsättning - En vägledning genom WHO:s hälsoklassifikation ICF-CY

Adolfsson Margareta (2015)

Ett barns hälsa och välbefinnande bestäms av så mycket mera än att vara fri från sjukdom. Världshälsoorganisationen (WHO) beskriver hälsa som fysiskt, psykiskt och socialt välbefinnande. Detta visar att ett barn med funktionsnedsättning kan må bra om det ges förutsättningar att fungera i de miljöer där barnet vistas regelbundet. Ett barns vardagsfungerande kan bedömas och beskrivas på ett allsidigt sätt med stöd av WHO:s hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY. Den bidrar med en modell som fokuserar på funktionella beskrivningar av barnets vardagssituationer som ett nödvändigt komplement till en diagnos. Eftersom en diagnos aldrig kan ge information om ett individuellt barns fungerande, behövs det funktionella perspektivet vid planering av åtgärder som kagöra ett barn mera delaktigt i olika aktiviteter. Socialstyrelsen förordar en ökad användning av klassifikationen, vilket har gjort att många verksamheter, som arbetar med barn och ungdomar, utvecklar arbetsmodeller som bygger på ICF-CY. Därför behöver föräldrar, liksom alla andra som finns runt ett barn med funktionsnedsättning, kunskap om den värdegrund som bildar bas för hälsoklassifikationen.
Kunskapsöversikten vägleder läsaren genom ICF-CY och lyfter fram exempel på hur den kan bidra till en överblick över ett barns hälsa och välbefinnande. Vägledningen vill underlätta samverkan genom att belysa hur ICF-CY kan bli en gemensam struktur och ett gemensamt språk för formulering av ett barns problem och behov ur olika synvinklar. Även om de exempel som beskrivs fokuserar på barn, är värdegrunden och innehållet i klassifikationen lika användbart för vuxna. Vägledningen är inte tänkt att läsas i ett streck från början till slut. Innehållet är ordnat i flera delar så att läsaren först ska få en bakgrund med en övergripande information om ICF-CY för att sedan lotsas allt djupare in i såväl modellen som klassifikationen. I slutet presenteras hur klassifikationen kan användas för att definiera ett barns problematik. Förhoppningen är att läsaren ska kunna ta fram skriften och hitta de avsnitt som kan ge ett stöd för att beskriva ett barns aktuella situation och behov inför en habiliteringsplanering, upprättandet av åtgärdsprogram, en vårdbidragsansökan eller vid övergången från en skola till en annan. Den kan på det viset ses som ett uppslagsverk i ämnet barn och ungdomars hälsa och välbefinnande, eller kanske lika gärna, i barn och ungdomars vardagsfungerande.

Hälsans mysterium

Antonovsky, A. (1987)

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

Hälsans mysterium

Antonovsky A. (2005)

Vad är det som gör att en del av oss klarar av även mycket svåra påfrestningar med hälsan i behåll – och kanske till och med växer och vidareutvecklas av dem? Författarens tes är att motståndskraften beror på vår känsla av sammanhang, d v s den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar.
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Hälsoekonomisk studie av barn och vuxna med fetalt alkoholsyndrom

Ericson Lisa, Hovstadius Bo, Magnusson Lennart (2015)

Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnader för fetalt alkoholsyndrom (FAS) i Sverige. Att dricka alkohol under graviditeten kan skada fostrets utveckling, framför allt utvecklingen av dess hjärna, och kan leda till allvarliga och livslånga funktionsnedsättningar och funktionshinder. FAS ör en medicinsk diagnos som beskriver de skador som kan uppstå då fostret exponeras för alkohol. Den årliga totala samhällskostnaden för FAS år 2014 beräknades till närmare 14,4 miljarder.

Hänger din mammas trygghet på dig? : att kombinera jobb med omsorg om föräldrar

Lorentzi U. (2011)

Sedan 1980-talet har den offentligt finansierade äldreomsorgen minskat dramatiskt samtidigt som andelen äldre i befolkningen har ökat kraftigt. Andelen äldre, 80 år och äldre, som får offentlig äldreomsorg har minskat från 62 procent 1980 till 37 procent 2006. Under 2000-talet har samhällets kostnad för äldreomsorg fortsatt att minska, både i faktisk kostnad och som andel av BNP. Antalet anställda i äldreomsorgen har också minskat. I takt med att den offentligt finansierade äldreomsorgen har dragit sig tillbaka har de äldres anhöriga tagit ett större omsorgsansvar. Framför
allt har de äldres döttrar ökat sina insatser sedan 1990-talet. Data från SCB för 2010 visar att anhörigomsorgen fortsätter att öka även under de senaste fem åren. I rapporten redovisas vem som hjälper hemmaboende äldre, 75 år eller äldre, som behöver hjälp med åtminstone en av insatserna städning, tvätt, matinköp, matlagning eller bad/dusch. Ungefär hälften av gruppen får hjälp av kommunen. Det är samma nivå som i slutet av 1980-talet, men fler äldre med stora hjälpbehov bor hemma idag än för tjugo år sedan. Två tredjedelar får den här hjälpen, alltså hjälp med städning, tvätt, matinköp, matlagning eller bad/dusch, av en nära anhörig eller vän som de inte bor med. Motsvarande siffra i slutet av 1980-talet var 40 procent. Nästan en tredjedel av de hemmaboende äldre, 75 år och äldre, med hjälpbehov får den här hjälpen av en dotter. Ungefär 14 procent får hjälpen av en son. Anhörigomsorgen är inte gratis, varken för de som ger omsorg eller för samhället. Bland medelålders kvinnor som ger omfattande omsorg till närstående äldre står 40 procent utanför arbetskraften jämfört med 30 procent av medelålders kvinnor utan omsorgsansvar. Uppskattningsvis 100 000 personer anger vård av anhörig som främsta skäl till att de gått ned i arbetstid eller helt slutat arbeta. Utöver att dessa personer själva får lägre arbetsinkomst när de jobbar deltid eller helt står utanför arbetskraften, så förlorar samhället i uteblivna skatteintäkter. Kommunal menar att de utmaningar som Sverige står inför, bristande
arbetskraftsutbud och välfärdens framtida finansiering, hänger ihop. För att fler ska kunna jobba mer behövs en välfungerande social infrastruktur med barnomsorg och äldreomsorg. När fler jobbar mer ökar även skatteintäkterna så vi har råd med offentligt finansierade välfärdstjänster av hög kvalitet.

I kroppen min : vägsjäl

Gidlund, Kristian (2014)

"Vår berättelse närmar sig sitt slut. Och vår figur klamrar sig fast på vrakets krutdurk på det öppna havet. Molnen hopar sig. Från och med nu blir allt han skriver korta fragment som han ristar in i tunnans trä."

Efter den hyllade debutboken I kroppen min kommer nu Kristian Gidlunds avslutande texter från bloggen med samma namn. Texterna återspeglar Kristians tankar och känslor under de sista sju månaderna av hans liv. Boken innehåller också Emma Svenssons bilder från fotoutställningen om Kristian Gidlund.

Han hade ett sjömanshjärta i sitt bröst. Han sökte äventyret. Han älskade livet. Kristian Gidlund, författaren, journalisten och musikern avled den 17 september 2013. Han blev 29 år gammal.

"Kristian Gidlund gjorde verkligen skillnad, helt på egen hand. Ingen som hörde hans röst, precisionen och modet i varenda formulering, kunde låta bli att stanna upp, lyssna och långsamt förändras. Han lärde oss att dö men också att leva." Åsa Beckman Dagens Nyheter

"När jag läste hans betraktelser ville jag bara dansa i regnet, bada i en ljummen sjö, älska, gråta, skratta, känna, och rida rätt ut i skogen." Sanna Lundell Aftonbladet

"Hans lyriska formuleringar blir till trollformler som genererar liv bara man läser dem med tillräcklig intensitet. Naturligtvis är det oerhört tragiskt och tårdrypande. Men här finns också värme och humor som på samma gång balanserar upp tragiken och förstärker den."Norrköpings Tidningar

"Han var just så varm, just så orädd, just så klok, just så stark, just så vacker - och omöjlig att inte älska... Den svidande skönheten i de texter han med sån poetisk stringens, och sån osentimental men likafullt hjärtskärande öppenhjärtighet, formulerade." Per Bjurman Aftonbladet

"Styrkan i Gidlunds eviga berättande var inte att döden lurade runt hörnet, utan att hans texter genomsyrades av en oerhörd livslust. Han påminde ständigt om att han levt ett rikt liv. "Glöm aldrig det", skrev han i den poetiskt tecknade boken." Sydsvenska Dagbladet

"Sällan har någons skrivande varit mer meningsfullt än Kristian Gidlunds." Östgöta Correspondenten

I sinnenas värld. Hörsel

Johansson, I., Andersson, L., Wramberg I. (1997)

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld. Känsel

Hagander BM., Moback I. (1997)

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld. Luktsinnet - Lukt och smak

Dannert E. (1996)

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld. Rörelse, kroppsuppfattning

Feldtman K. (1998)

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld. Syn

Sahlén U., Berglund L. (1997)

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I taket lyser stjärnorna

Johanna Thydell, Manus och regi Linn Gottfridsson och Lisa Siwe (2009)

Jenna går i sjuan och borde egentligen bara behöva oroa sig över brösten som aldrig växer, varför hon inte är lika populär som Ullis-"knullis" och hur hon ska få Sakke att bli kär i henne eller åtminstone upptäcka att hon finns. När Jennas mamma drabbas av cancer är de tvungna att flytta hem till mormor, som dessutom bor granne med Ullis. Ullis bor med sin alkoholiserade mamma, och mellan flickorna växer det fram en vänskap. Detta är en film om något av det svåraste som finns; att förlora någon man älskar till döden. Men det är också en film om vänskap, identitet och faktiskt om överlevnad.

I tredje åldern med funktionshinder

Taghizadeh Larsson, Annika (2008)

Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.

I väntan på uppehållstillstånd

Björnberg, Ulla (2013)

Hur barn påverkas av migration är något vi har relativt liten kunskap om, både nationellt och internationellt. I Norden lever de flesta barn sina liv som barn gör mest, i en vardag som rymmer lek, skola och familjeliv. Men det finns erfarenheter som påtagligt påverkar tillvaron för vissa barn; migration är en sådan erfarenhet.
Vilka strategier utvecklar barn för att hantera sin situation i

I´m not an outsider, I´m his mother! A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings

Wilkinson, C. and S. McAndrew (2008)

Contemporary standards and policies advocate carer involvement in planning, implementing, and evaluating mental health services. Critics have questioned why such standards and policies fail to move from rhetoric to reality, this particularly being applicable to carer involvement within acute psychiatric settings. As there is only limited UK research on this topic, this interpretive phenomenological study was undertaken to explore the perceived level of involvement from the perspective of carers of service users who were admitted to acute inpatient settings within the previous 2 years. Interviews were conducted with four individuals who cared for a loved one with a mental illness. The interview analysis was influenced by Van Manen, whose interpretive approach seeks to generate a deeper understanding of the phenomenon under study. Four main themes emerged: powerlessness, feeling isolated, needing to be recognized and valued, and a desire for partnership. The findings reflect the views expressed by carers in other studies, identifying that while carers seek to work in partnership with health-care professionals, at a clinical level they often feel excluded. The study concludes by discussing ways of improving and promoting carer involvement and advocating a partnership in care approach within acute psychiatry

ICF - en grund för tvärprofessionell journaldokumentation

SoS (2006)

När IT-stöden i vården utvecklas blir behovet av enhetliga begrepp och termer mera påtagligt. Detta betonas särskilt i såväl InfoVU-projektets slutrapport som i regeringens Nationella IT-strategi för vård och omsorg.

Flera landsting, sjukhus, kliniker och privata vårdgivare har under de senaste åren valt att använda Världshälsoorganisationen WHOs International Classification of Functioning, Disabilty and Health (ICF) som utgångspunkt för gemensamma termer och begrepp, vid införande av elektroniska journalsystem. ICF ingår i WHOs Family of International Classifications med det uttalade syftet att dels komplettera sjukdomsklassifikationen ICD, dels tillhandahålla ett tvärprofessionellt språk för att beskriva hälsa.

Syftet med förstudien är att få besked om ICF kan ligga till grund för fortsatt arbete med struktur och terminologi för ändamålsenlig vård- och omsorgsdokumentation och tydliggöra likheter och skillnader i dagens användning av ICF i e-journaler.

En enkät med förfrågan om man använder ICF skickades till Socialstyrelsens kontaktnätverk för terminologifrågor. Totalt inkom 36 svar varav 29 fördelade sig på 17 olika landsting, två svar kom från kommuner, fyra svar kom från privata företag och ett svar från en yrkesorganisation. I 13 av svaren angavs att man på något sätt använde, eller planerade att använda, ICF som underlag för struktur och innehåll i e-journalen. Ett kontaktnätverk för erfarenhetsutbyte etablerades och två arbetsseminarier genomfördes med syftet att besvara förstudiens frågeställningar.

I Danmark och Norge har man baserat på ICF utvecklat underlag för insamling av individbaserad vård- och omsorgsstatistik.

Inom ramen för InfoVU-projektet genomfördes tre olika försök baserade på ICF: webbaserad checklista för vårdplanering och överföring av information mellan olika vård- och omsorgsgivare, formulering av behov inom kommunal äldreomsorg samt individbaserad verksamhetsuppföljning.

De professionella organisationerna för arbetsterapeuter, sjukgymnaster och sjuksköterskor har, baserat på ICF, utarbetat förslag till en tvärprofessionell klassifikation för insatser och åtgärder, som ska ingå i Socialstyrelsens Klassifikation av vårdåtgärder (KVÅ).

I landstinget i Värmland och i Västmanlands läns landsting har man tagit beslut på att basera e-journalens struktur och innehåll på ICF. I vårdföretaget Kvalita AB är e-journalen sedan flera år tillbaka baserad på ICF. Inom andra landsting och regioner har man tagit delar av ICF som grund för dokumentationen. Rehabmedicin i Jönköping är ett exempel där ICF ligger till grund för den tvärprofessionella rehabiliteringsplanen.

Vid Karolinska Institutet och vid Örebro universitet används ICF i utbildningen av sjukgymnaster och arbetsterapeuter och som ramverk till forskningen inom respektive område.

Socialstyrelsen har beskrivit vård- och omsorgsassistenternas kvalifikationer med hjälp av ICFs struktur och innehåll.

Det råder konsensus, bland representanterna för de olika verksamhetsområden och professioner som deltagit i förstudien, om att ICF är en bra utgångspunkt för att uppnå en tvärprofessionell vård- och omsorgsdokumentation - en dokumentation som språkligt och innehållsmässigt kan vara en brygga mellan socialtjänst och hälso- och sjukvård.

Erfarenheter från drift, försök och andra tester visar att ICF behöver kompletteras. ICF saknar bl.a. begrepp för att beskriva vårdförlopp, t.ex. kontaktorsak och sjukhistoria. Ärftlighet och tidigare erfarenheter av vård och omsorg är annat som inte finns i ICF.

Språkliga anpassningar måste göras för att ICF ska bli användbar i vård och omsorgsdokumentationen, t.ex. genom att långa och otympliga begreppsbenämningar ges enklare, mera hanterbara s.k. "trivialnamn".

Det finns likheter och skillnader i användandet. Omfattningen av ICF begrepp som förts in i journaldokumentationen varierar. I några fall använder man i princip bara ICF-komponenterna på en övergripande nivå, medan andra byggt upp detaljerade sökordsstrukturer (ca 1000 begrepp). Några använder ICF mycket konsekvent medan andra blandar ganska friskt mellan traditionella sökord och ICF.

Förstudien pekar på följande områden som utgångspunkt för fortsatt arbete med ICF som grund för ändamålsenlig vård- och omsorgsdokumentation:

samordna arbetet inom ramen för den nationella informationsstrukturen och det nationella terminologiarbetet
tillvarata erfarenheterna av praktiska tillämpningar och försök
rikta information, utbildning och förankring till vård- och omsorgens huvudmän och deras personal
tillvarata de berörda yrkesorganisationernas kunskap och intresse att medverka till den tvärprofessionella dokumentationen.
Om Sverige beslutar om att gå med i SNOMED CTs internationella utvecklingsarbete och samtidigt väljer att basera den tvärprofessionella dokumentationen på ICF, är det viktigt att se till att ICFs struktur och terminologi införlivas i SNOMED CT

Oberoende av vilken begreppsstruktur som väljs för den tvärprofessionella e-journalen måste det finnas en etablerad organisation för förvaltning och underhåll. Socialstyrelsens termbank kan vara en del av denna resurs.

ICF and ICF-CY lessons learned: Pandora’s box of personal factors. Disability and Rehabilitation.

Simeonsson RJ, Lollar D, Björck-Åkesson E, Granlund M, Brown SC, Zhuoying Q, et al. (2014)

Purpose: The aim of this article is to examine the component of "personal factors" described as a contextual factor in the ICF and ICF-CY. Methods: A critical examination of the construct of "personal factors" and description of the component was made with reference to conceptual and taxonomic criteria. Results: The "personal factors" component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of "personal factors" is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of "personal factors" in documenting personal attributes, including "blaming the victim". Conclusion: In the absence of formal codes, any application of the component of "personal factors" lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for "personal" or any other factors in the ICF/ICF-CY.
Implications for Rehabilitation
A central contribution of the ICF/ICF-CY is the universal language of codes for the components of body structure, body function, activities and participation and Environmental Factors.
As such the codes provide taxonomical legitimacy and power for documenting dimensions of functioning and disability in clinical and rehabilitation contexts.
As there are no codes of "personal factors", there is no basis for documentation of the component.
Demographic information, if needed for identification, should be recorded in customary formats, independent of any component or codes of the ICF/ICF-CY.

ICF och ICF-CY - Historik och utveckling

Björck-Åkesson E, Granlund M, Simeonsson RJ. (2011)

Det har hittills saknats en bok för alla som vill veta mer om ICF (International Classification of Functioning, Disability and Health) och dess barn- och ungdomsversion ICF-CY. Boken vänder sig till olika grupper av läsare och är därför indelad i tre nivåer beroende på vilket djup av information man söker. En grupp läsare är de som vill ha en introduktion till vad ICF är för att sen kanske använda den som en tankemodell. En annan grupp är de som beslutat sig för att verkligen förstå ICF som klassifikation med struktur och språk. En tredje grupp läsare är de som vill lära sig "att koda information enligt ICF" i exempelvis forskning. Oavsett vilken grupp man tillhör så behöver man veta hur ICF är uppbyggd och hur den kan användas i olika situationer. Vi hoppas att denna handbok ska möta alla dessa behov. I boken har läsaren möjlighet att själv pröva ICF och läsa hur andra gjort. Läsarens befattning, förkunskaper, yrke och verksamhet kan variera, liksom vad man studerar.

Tillsammans har bokens elva författare gedigen praktisk erfarenhet av att använda ICF och ICF-CY samt specialiserad erfarenhet av att utveckla och pröva användbarheten av ICF och ICF-CY, bland annat på uppdrag av Världshälsoorganisationen, WHO.

Iconicity in the development of picture skills: typical development and implications for individuals with severe intellectual disabilities

Stephenson, J. (2009)

The iconicity of graphic symbols and the iconicity hypothesis are theoretical concepts that have had an impact on the use of augmentative and alternative communication strategies for people with severe intellectual disabilities. This article reviews some of the recent literature on the impact of iconicity on symbol recognition and use by typically developing children and relates those findings to people with severe disability. It seems that although iconicity may have some impact on symbol learning, there are other variables that are likely to be much more important. It is likely that iconicity is not helpful to those learning graphic symbols who have little or no comprehension of spoken language.

Identification of core functioning features for assessment and intervention in Autism Spectrum Disorders

Castro S, Pinto AI. (2013)

Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.

Identification of intentional communication in students with severe and multiple disabilities

Iacono T, Carter M, Hook J. (1998)

The use of published criteria to determine the intentionality of communicative behaviors of individuals with severe and multiple disabilities is discussed in light of research with individuals with and without intellectual disability. Data were collected from four young students with severe intellectual and physical disabilities in addition to sensory deficits. Communicative sampling procedures were used to explore how behaviors other than co-ordinated attention may signal emerging intentionality. These behaviors, which included persistence, idiosyncratic behaviors, and modifications to signals, in addition to patterns of differential modality use, are discussed as potential indicators. Implications for the identification and development of intentional communication in children with severe and multiple disabilities are discussed, along with directions for future research.

Identifying child functioning from an ICF-CY perspective: Everyday life situations explored in measures of participation

Adolfsson M, Malmqvist J, Pless M, Granlund M. (2011)

Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.
Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.
Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.
Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.

Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities

Petry, K., & Maes, B. (2006)

Abstract
BACKGROUND:
The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure.
METHOD:
There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers.
RESULTS:
The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods.
CONCLUSIONS:
The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing.

Ifrågasatta fäder. Olika bilder av fäder till socialt utsatta barn

Bangura Arvidsson, M. (2003)

Faderskap är en familjepolitisk angelägenhet där staten går in och intervenerar och på så sätt fostrar fäder. Tyngdpunkten ligger på att uppmuntra fadersnärvaro och att förmå frånvarande fäder att ta ansvar för sina barn. Detta ger oss en bild av vad som uppfattas som bra fäder och vad som avviker från normen. Den sociala barnavården är en kontext som verkar inom den socialpolitiska, men på ett mer direkt sätt griper in i individens liv. I litteratur och forskning inom socialt arbete framstår ifrågasatta fäder som frånvarande i dubbel bemärkelse. Att de knappast syns i litteraturen förstärker en allmän uppfattning om att fäder till socialt utsatta barn är frånvarande även för sina barn. Många fäder är förvisso frånvarande, men en annan anledning till att ifrågasatta fäder inte syns är modersfixering och kvinnodominans inom den sociala barnavården. I avhandlingen presenteras olika bilder av ett faderskap som är relativt outforskat, nämligen ifrågasatta fäder, alltså fäder vars barn utretts av sociala myndigheter. Utifrån studier av 40 barnavårdsutredningar och intervjuer med 13 socialsekreterare (på två socialkontor) och 19 pappor ges bl.a. svar på vad det står skrivet om fäder i socialtjänstens utredningar; hur socialsekreterare ser på sitt arbete vad gäller fäder; samt hur pappor till socialt utsatta barn upplever sitt eget faderskap, relationen till sina barn och kontakten med sociala myndigheter. Bilderna av ifrågasatt faderskap i de tre delstudierna, men i synnerhet de bilder som kom fram i intervjuerna med socialsekreterarna och papporna, präglas av kluvenhet och ambivalens. Det beror på olikheter mellan den familjepolitiska kontexten och den kontext som den sociala barnavården omfattas av, i tolkningarna av vad som är barns bästa när det gäller kontakt med sina fäder. Bilden av fäder i barnavårdsutredningarna framstod som fragmentarisk och bristfällig, men i den information som fanns framkom en uppfattning om att barn behöver fäder. De bilder som skymtade fram var av fäder som å ena sidan närvarande, ansvarsfulla, och till glädje för barnet, å andra sidan oansvariga, våldsamma, i konflikt med barnets mor, skrämmande, frånvarande och efterlängtade. Jag urskiljde tre teman för vad ett gott faderskap innebär. Dessa är närvaro, ansvar och gränssättning. Genom att involvera fäderna i utredningen och dokumentera det, visade socialsekreterarna att de lever upp till vad som förväntas av dem utifrån den generella socialpolitiska diskursen om fäder, nämligen att stärka fäders relation till sina barn. Å andra sidan har socialsekreterarna eget handlingsutrymme att avgöra om fäder ska kontaktas eller inte i de fall de inte är vårdnadshavare. Bilden av fäder i intervjuerna med socialsekreterarna präglades av ambivalens mellan de olika tolkningarna av barns bästa. Det handlar å ena sidan om en uppfattning om barns bästa utifrån socialpolitiska intentioner. Utifrån detta framhöll socialsekreterarna umgänge mellan barn och far som viktigt. Å andra sidan handlar det om att barn kan behöva skyddas från sina fäder, vilket är den verklighet som socialsekreterarna också möter i sitt arbete. Samtidigt visade sig också en kluvenhet mellan upprätthållandet av den traditionella respektive den moderna fadern genom att socialsekreterarna upprätthöll traditionella könsrollsmönster samtidigt som de försökte fostra moderna fäder. De hade snarlika bedömningskriterier för fäder och mödrar. Dessa baserades på föreställningar om modrande egenskaper. De ställde emellertid lägre krav på fäderna eftersom de inte förväntades uppnå dem i samma utsträckning som mödrarna. I intervjuerna med socialsekreterarna återkom de tre temana för gott faderskap, nämligen närvaro, ansvar och gränssättning. Men även ett fjärde tema blev tydligt, nämligen att barn behöver sina fäder för att ha tillgång till en manlig förebild. Socialarbetarkåren består mestadels av kvinnor. Kvinnodominansen inom den sociala barnavården sågs som ett problem samtidigt som några socialsekreterare menade att skillnader i ålder eller etniskt ursprung var lika betydelsefullt som kön i deras kontakt med fäder. Socialsekreterarna uttryckte acceptans för avvikande beteende hos fäderna. Vilka beteenden som accepterades var olika i A-by respektive B-stad beroende på vilka fäder de mötte. Socialsekreterarna i A-by hade mest frånvarande fäder att förhålla sig till. I B-stad mötte socialsekreterarna nästan bara närvarande invandrarfäder. Jag menar att socialsekreterarnas kontakt med invandrarfäder har betydelse för sättet att betrakta faderskap och att det innebär ett annat slags socialt arbete med fäder i B-stad än i A-by. B-stads möte med aktiva (i flera fall alltför aktiva) invandrarfäder och även misshandlande invandrarfäder gav en annan bild av fäder och innebar en annan verklighet att förhålla sig till än den i A-by. Pappornas bild av sitt eget faderskap präglas också av kluvenhet och ambivalens. Papporna känner sig missförstådda av sociala myndigheter. De uttryckte desperation, maktlöshet och kände sig stämplade. De måste kämpa för att få vara aktiva och närvarande fäder för sina barn och att bli sedda som det. Dessutom ifrågasätter flera av papporna sig själva som fäder. I synnerhet de pappor som missbrukar eller har missbrukat är näst intill skoningslösa i beskrivningarna av sig själva och hur de har behandlat sina barn. Flera hade erfarit att barn är oförenligt med missbruk. Det innebar antingen att de var känslomässigt frånvarande för barnen trots att de var fysiskt närvarande eller att de var fysiskt frånvarande. Pappornas bilder är färgade av stark längtan efter Svenssonliv d.v.s. kärnfamiljsliv. Jag menar att papporna i vissa avseenden kan ses som marginaliserade. Å andra sidan ger papporna en bild av sig själva som normala fäder. De beskriver gott faderskap som att vara närvarande, aktiva, manliga förebilder och att kunna sätta gränser, men de gör det i en annorlunda betydelse än socialsekreterarna. Flera av dem menar att de lever upp till det, även om det är svårt ibland. Liksom fäder i allmänhet, känner de osäkerhet i sin fadersroll och menar att relationen till sina egna fäder haft betydelse, men kanske använder papporna i större utsträckning sina egna fäder som negativt exempel. Modern hade större betydelse än väntat. De flesta var glada för att bli pappor, var med vid förlossningen och beskrev den med mycket positiva ord. De menade att de mognat med faderskapet och att livet fått en annan mening. Barnen hade en viktig plats i deras liv och de upplevde att de betyder mycket för sina barn och att de är viktiga som pappor för dem. Förutom närvaro, ansvar, gränssättning och förebilder, betonar papporna känslomässiga aspekter som viktiga för faderskapet. Bilden av det normala faderskapet betyder sannolikt mer för pappor med en fot i marginalen. Svenssonlivet framställs på ett idealiserat sätt och ett näst intill ouppnåeligt mål. Det kan uppstå svårigheter med gränssättning gentemot barnen när papporna ska ta igen tidigare brister i faderskapet. De upplever en kluvenhet mellan missbruk och barn och känner oro och skuld inför sina barn. Samtidigt ser de att deras erfarenheter som ifrågasatta fäder har fört med sig värdefulla erfarenheter som inte fäder i allmänhet har. Avhandlingen visar att bilden av fäder till socialt utsatta barn som huvudsakligen frånvarande är missvisande. Snarare finns det en variation som är svår att se utan att tala med fäderna själva. Mer kunskap om fädernas perspektiv och socialtjänstens bilder av ifrågasatt faderskap kan leda till en bättre kommunikation mellan fäder och socialtjänsten. Det kan i sin tur stärka socialt utsatta barns livssammanhang.

Illuminating patients with children up to 18 years of age – A 1-day-inventory study in a psychiatric service

Östman, M., & Eidevall, L. (2005)

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.

Immersive communication intervention for speaking and non-speaking children with intellectual disabilities

Van der Schuit, M., Segers, E., van Balkom, H., Stoep, J., & Verhoeven, L. (2010)

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

Immersive communication intervention for speaking and non-speaking children with intellectual disabilities

Van der Schuit, M., Segers, E., van Balkom, H., Stoep, J., & Verhoeven, L. (2010)

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

Impact of fear of falling for Patients and Caregivers. Perceptions before and after Participation in Vestibular and Balance Rehabilitation Therapy

Honaker JA, Kretschmer LW (2014)

The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.

Fetal alcohol spectrum disorders: an over- view

Riley EP, Infante MA, Warren KR. (2011)

When fetal alcohol syndrome (FAS) was initially described, diagnosis was based upon physical parameters including facial anomalies and growth retardation, with evidence of developmental delay or mental deficiency. Forty years of research has shown that FAS lies towards the extreme end of what are now termed fetal alcohol spectrum disorders (FASD). The most profound effects of prenatal alcohol exposure are on the developing brain and the cognitive and behavioral effects that ensue. Alcohol exposure affects brain development via numerous pathways at all stages from neurogenesis to myelination. For example, the same processes that give rise to the facial characteristics of FAS also cause abnormal brain development. Behaviors as diverse as executive functioning to motor control are affected. This special issue of Neuropsychology Review addresses these changes in brain and behavior highlighting the relationship between the two. A diagnostic goal is to recognize FAS as a disorder of brain rather than one of physical characteristics.

Fetal alcohol syndrome and the developing socio-emotional brain

Niccols A. (2007)

Fetal alcohol syndrome (FAS) is currently recognized as the most common known cause of mental retardation, affecting from 1 to 7 per 1000 live-born infants. Individuals with FAS suffer from changes in brain structure, cognitive impairments, and behavior problems. Researchers investigating neuropsychological functioning have identified deficits in learning, memory, executive functioning, hyperactivity, impulsivity, and poor communication and social skills in individuals with FAS and fetal alcohol effects (FAE). Investigators using autopsy and brain imaging methods have identified microcephaly and structural abnormalities in various regions of the brain (including the basal ganglia, corpus callosum, cerebellum, and hippocampus) that may account for the neuropsychological deficits. Results of studies using newer brain imaging and analytic techniques have indicated specific alterations (i.e., displacements in the corpus callosum, increased gray matter density in the perisylvian regions, altered gray matter asymmetry, and disproportionate reductions in the frontal lobes) in the brains of individuals prenatally exposed to alcohol, and their relations with brain function. Future research, including using animal models, could help inform our knowledge of brain-behavior relations in the context of prenatal alcohol exposure, and assist with early identification and intervention.

FIB-projektet i Uppsala län. Föräldrar med intellektuella begränsningar. Kartläggning av målgruppen 2005-2008

Pistol, Sven-Erik (2009)

FIB-projektet är ett 3-årigt samverkansprojekt i Uppsala län som syftar till att
utveckla stöd till barn och deras föräldrar i familjer där någon av föräldrarna har
en utvecklingsstörning eller andra kognitiva svårigheter, som kan förekomma
vid t.ex. svagbegåvning eller neuropsykiatriska funktionsnedsättningar.
För att kunna bedöma omfattningen av stödbehov och planera utifrån det, är det
viktigt att veta hur många familjer det finns som tillhör målgruppen och hur
många barn de har. En del i projektet har därför varit att göra en kartläggning av
målgruppens storlek i Uppsala län.
En bred förankring på olika nivåer i Landstingets och kommunernas
organisationer har krävts för att kunna genomföra kartläggningen.
Olika grupper av professionella, som möter familjerna i sin yrkesutövning, har
gjort bedömningen av vilka som tillhör målgruppen och som är i behov av
anpassat stöd.
Resultatet av kartläggningen bekräftar det som yrkesverksamma i olika
sammanhang omtalat, nämligen att det finns ett stort antal barn och föräldrar
med behov av stöd på grund av kognitiva svårigheter hos någon av föräldrarna.
Totalt handlar det om 602 familjer med sammanlagt 1092 barn som bedöms vara
i behov av stöd på grund av föräldrarnas kognitiva svårigheter. Mer än 50 % av
barnen har egna kognitiva svårigheter.
Den variation vi kan konstatera mellan länets olika kommuner kan bero på
befolkningsstruktur, förekomst av särskola, tidigare befintliga institutioner och
tillgång på bostäder och sysselsättning.
Kartläggningen ger ett underlag för planeringen av insatser till familjerna. Den
visar hur många familjer och barn det finns och kan hos olika verksamheter
ställas i relation till de riktade insatser som görs. Kartläggningen ger också ett
underlag för ökad samverkan och samplanering mellan olika samhällsinstanser
då många professionella arbetar med samma familjer utan varandras kännedom.

Filial Piety, Caregiving Appraisal, and Caregiving Burden

Lai, D. W. L. (2010)

This study examined the effects of filial piety on the appraisal of caregiving burden by Chinese-Canadian family caregivers. A quantitative telephone survey was used as the research design for this study. A total of 339 randomly selected Canadian-Chinese family caregivers of elderly were interviewed by telephone. A hypothesized model denoting both the direct and indirect effects of filial piety on caregiving burden was tested using structural equation modeling. While stressors and appraisal factors reported direct predicting effects on caregiving burden, filial piety indirectly affected caregiving burden by altering appraisals of the caregiver role. Filial piety served as a protective function to reduce the negative effects of stressors and to enhance the positive effect of appraisal factors on caregiving burden.

Filial responsibility: does it matter for care-giving behaviours?

Chappell, N. L. and L. Funk (2012)

This paper examines the relationship between attitudes of filial responsibility and five different types of care-giving behaviours to parents among three cultural groups. It does so within an assessment of the relative importance of cultural versus structural factors for care-giving behaviours. Face-to-face interviews were conducted with 100 Caucasian-Canadians, 90 Chinese-Canadians and 125 Hong Kong-Chinese. Multiple regression analyses assessed the association of cultural and structural factors with behaviours among the total sample and each of the three cultural groups. Limited support was found for an association between care-giving attitudes and care-giving behaviours. Attitudes are related to emotional support only among the two Chinese groups as well as to financial support among Chinese-Canadian respondents and to companionship among Hong Kong-Chinese respondents. Attitudes are not the strongest predictors and are unrelated to assistance with basic and instrumental activities of daily living. However, cultural group per se is a strong predictor of care-giving behaviours as are: parental ill health, living arrangements, and relationship quality. This study suggests gerontological assumptions about the role of societal norms and personal attitudes in parental care-giving should be questioned. It also suggests the need for further inquiry into unpacking those aspects of 'cultural group' that are related to behavioural differences, and the importance of examining multiple types of care-giving behaviours and of distinguishing task-oriented helping behaviour from other types of assistance.

Finansiell och politisk samordning i den lokala välfärden: En ny politisk arena för gemensamma prioriteringar mellan huvudmän. CEFOS rapport nr. 20.

Fridolf, M. (2004)

I denna rapport beskrivs politikeruppdraget vid politisk och finansiell samordning. Vid samordning samlas resurser över organisationsgränser för att användas gemensamt. Det unika med politisk och finansiell samordning är att huvudmännen har ett gemensamt kostnadsansvar. Resurserna kan omfördelas mellan huvudmän. Politisk samordning innebär att en politisk arena skapas som prioriterar resurser över organisationsgränser. I rapporten påvisas att politikeruppdraget skiljer sig mycket åt beroende på vilken inriktning som finns på olika områden; mot samordningsperspektiv eller befolkningsperspektiv. Inriktningen har skapats av vald struktur men också av hur aktörerna ser på sin roll och dess utövande. En ny struktur skapas på den parlamentariska arenan. I denna samordning betonas politikernas roll. Rollskillnader utvecklas dock mellan olika politiker, vilket gör att de får olika betydelse och status. Detta påverkar i sin tur deras inflytande. En samförståndspolitik utvecklas, där politikerna inte driver partipolitik. Genom politisk samordning skapas förutsättningar för gemensamma prioriteringar av behov. Den nya strukturen påverkar politikerna som aktörer i samtliga områden.

I rapporten återges ambitioner med finansiell och politisk samordning samt hur en ny politisk struktur skapas. Dessutom beskrivs politikernas motiv till engagemang, hur de ser på sin uppgift samt hur politisk organisering genom behovsidentifiering, prioritering, resursmobilisering och utvärdering utvecklas. Studien behandlar också politikernas betydelse för samarbete mellan chefer och professionella.

Finding care for the caregiver? Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing

Tanis M, Das E, Fortgens-Sillmann M. (2011)

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity (i. e. the number of messages posted per week) did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing. These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups.

Flickan och kajorna

Riita Jalonen, Kriistina Louhi (2005)

En flicka står under ett träd utanför tågstationen. Hennes mamma är inne och köper biljetter för att de ska resa bort. Flicka tittar på kajorna i trädet hon står under, tänker på saknad och minnen av pappa som är död. Hon tänker på vad de gjorde, vad hon minns av honom och hur det känns inuti att ha en pappa som är död. Hennes tankar vindlar över sidorna, från det ena till det andra, men saknade efter pappa går som en röd tråd genom boken. Stora mättade bilder illustrerar boken. Boken passar barn från 5 år.

Fokus på mig, Vuxensyskon. Samtalsmaterial

Bräcke diakoni (2021)

Samtalsmaterialet "Fokus på mig, Vuxensyskon" är en del av Projekt Vuxensyskon.

Känner du igen dig?
• Har du svårt att veta vilket ansvar du har för ditt syskon?
• Är din självständighet en belastning för dig?
• Får du dåligt samvete när du tänker på ditt syskon?
• Har du svårt att veta vad du själv vill?
• Känns det jobbigt för dig när du säger nej?
"Fokus på mig, Vuxensyskon" är till för dig som är syskon till någon
med funktionsnedsättning eller sjukdom. Samtalsmaterialet innehåller
berättelser, teman, övningar och frågeställningar där förhoppningen
är att ge igenkänning, hopp och förståelse för sig själv.

Folkhälsan i Sverige – Årsrapport 2013

Socialstyrelsen & Statens folkhälsoinstitut (2013)

Socialstyrelsens och Statens folkhälsoinstituts rapport ger en aktuell och översiktlig bild av hälsoutvecklingen och dess bestämningsfaktorer. Den visar bland annat att bland kvinnor och män 35-44 år har risken att få stroke ökat med 21 respektive 15 procent sedan 1995

Folkhälsorapport

Socialstyrelsen (2009)

Folkhälsorapport 2009 visar bland annat att risken att dö i hjärtinfarkt och stroke har minskat väsentligt, medan dödligheten i bröstcancer däremot har minskat endast marginellt, och dödligheten i lungcancer fortfarande ökar bland kvinnor, medan den sjunker bland män. Psykisk ohälsa är vanligt hos yngre kvinnor; självmordsförsöken ökar.

For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study

Lüdecke Daniel, Bien Barbara, McKee Kevin, Krevers Barbro (2018)

Abstract [en]

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.

METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.

RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.

DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study.

Lüdecke D., Bien B., McKee K., Krevers B., Mestheneos E., Di Rosa M. (2018)

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries
(Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up. RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia
diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems
(OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely
to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

Forensic care for victims of violence and their family members in the emergency department

Rahmqvist Linnarsson, Josefin (2018)

Doktorsavhandling

Aim: To explore forensic care in EDs for victims of violence and their family members from the perspectives of ED department heads, ED nurses, and a family member of a victim of violence. Methods: Study I consisted of a questionnaire to all heads of EDs in Sweden, data were analyzed with descriptive statistics. Study II consisted of a similar questionnaire which also included the instrument Families' Importance in Nursing Care-Nurses' Attitudes. It was sent to all nurses at 28 EDs and data were analyzed using descriptive statistics, multiple linear and ordinal regression analysis. Study III comprised of individual interviews with twelve nurses from seven EDs and data were analyzed with content analysis. Study IV was a single case study with two interviews with a family member of a victim of violence. Data were analyzed with a Gadamer-inspired hermeneutic approach. Results: ED preparedness for forensic care varied and was often limited to women and children. Nurses played a key role, but most of them had no training for this task and felt uncertain (I, II, III). Creating a caring encounter was the main challenge for providing forensic care and nurses perceived hindering factors to overcome this challenge (III). Family members were rarely included in forensic care and nurses perceived that family members were offered little help (I-III). Having ED documents that included family members, was associated with a more positive attitude to family members, which in turn was associated with involving them in care (II). For the family member, perfunctory encounters and caring alliances had a major impact and the experience reframed life (IV). Conclusion: Lack of preparedness in EDs to care for all types of victims of violence and differences between individual nurses may prohibit the provision of equal care. Hindering factors for a caring encounter can result in forensic care being unaddressed, which may limit possibilities for alleviated suffering and legal justice. Family members were rarely included in forensic care, but caring encounters can be crucial for the family member in the aftermath of violence

Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study

Lethin C, Leino-Kilpi H, Roe B, Soto MM, Saks K, Stephan A, Zwakhalen S, Zabalegui A, Karlsson S; (2016)

BACKGROUND: In European countries, knowledge about availability and utilization
of support for informal caregivers caring for older persons (≥65 years) with
dementia (PwD) is lacking. To be able to evaluate and develop the dementia
support system for informal caregivers to PwD, a survey of European support
systems and professionals involved is needed. The aim of this study was to
explore support for informal caregivers to PwD in European countries. We
investigated the availability and utilization of support in each of the
participating countries, and the professional care providers involved, through
the dementia disease.
METHODS: A mapping system was used in 2010-2011 to gather information about
estimations of availability, utilization, and professional providers of support
to informal caregivers caring for PwD. Data collected was representing each
country as a whole.
RESULTS: There was high availability of counselling, caregiver support, and
education from the diagnosis to the intermediate stage, with a decrease in the
late to end of life stage. Utilization was low, although there was a small
increase in the intermediate stage. Day care and respite care were highly
available in the diagnosis to the intermediate stage, with a decrease in the late
to end of life stage, but both types of care were utilized by few or no
caregivers through any of the disease stages. Professionals specialized in
dementia (Bachelor to Master's degree) provided counselling and education,
whereas caregiver support for informal caregivers and day care, respite care, and
respite care at home were provided by professionals with education ranging from
upper secondary schooling to a Master's degree.
CONCLUSIONS: Counselling, caregiver support, and education were highly available
in European countries from diagnosis to the intermediate stage of the dementia
disease, decreasing in the late/end of life stages but were rarely utilized.
Countries with care systems based on national guidelines for dementia care seem
to be more aware of the importance of professionals specialized in dementia care
when providing support to informal caregivers. Mapping the systems of support for
informal caregivers of PwD is a valuable tool for evaluating existing systems,
internationally, nationally and locally for policy making.

Foster children: a longitudinal study of placements and family relationships

Andersson, G. (2009)

Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.

Framgångsrika preventionsprogram för barn och unga : en forskningsöversikt

Ferrer-Wreder L, Andershed A-K. (2012)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Framgångsrika preventionsprogram för barn och unga. En forskningsöversikt

Ferrer-Wreder, L.; Stattin, H.; Cass Lorente, C.; Tubman, J.G. & Adamson, L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Framgångsrika preventionsprogram för barn- och unga. En forskningsöversikt.

Ferrer-Wreder L, Stattin H, Cass Lorante C, Tubman JG, Adamsson L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development

Axelsson AK, Wilder J. (2013)

Objectives:
The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD.
Methods:
A descriptive, comparative study was performed using a questionnaire developed for the purpose.
Results:
In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often.
Discussion:
Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.

Friends in need': designing and implementing a psychoeducational group for school children from druginvolved families.

Dore MM, Nelson-Zlupko L, Kaufmann E. ' (1999)

Despite widespread recognition of the risks that parental drug use pose to children, few resources are available to help such children. Using a developmental intervention approach, the authors designed and tested a model curriculum for use with groups of latency-aged children in schools located in communities where drug use is pervasive. In implementing this curriculum, the authors documented the need that children affected by family drug use have for workable strategies and skills for coping with aversive environments. The responsiveness of group participants to structure, predictability, and affirmation in the groups was remarkable. Measurable changes occurred in classroom behavior and feelings of self-worth. Obstacles to implementing and testing such an intervention are discussed.

Frightened, threatening, and dissociative parental behavior in low-risk samples: Description, discussion, and interpretations

Hesse, E., & Main, M. (2006)

In 1990 we advanced the hypothesis that frightened and frightening (FR) parental behavior would prove to be linked to both unresolved (U) adult attachment status as identified in the Adult Attachment Interview and to infant disorganized/disoriented (D) attachment as assessed in the Ainsworth Strange Situation. Here, we present a coding system for identifying and scoring the intensity of the three primary forms of FR behavior (frightened, threatening, and dissociative) as well as three subsidiary forms. We review why each primary form may induce fear of the parent (the infant's primary "haven of safety"), placing the infant in a disorganizing approach-flight paradox. We suggest that, being linked to the parent's own unintegrated traumatic experiences (often loss or maltreatment), FR behaviors themselves are often guided by parental fright, and parallel the three "classic" mammalian responses to fright: flight, attack, and freezing behavior. Recent studies of U to FR, as well as FR to D relations are presented, including findings regarding AMBIANCE/FR+. Links between dissociation, FR, U, and D are explored. Parallel processing and working memory are discussed as they relate to these phenomena.

From Broken Attachments to Earned Security: The Role of Empathy in Therapeutic Change (The John Bowlby Memorial Conference Monograph Series)

ODGERS, A. (2014)

The 2011 John Bowlby Memorial Conference, 'From Broken Attachments to Earned Security - The Role of Empathy in Therapeutic Change', focussed on what needs to take place to facilitate empathy and attunement and ultimately the achievement of earned security. The confernce posed the challenge of how to re-establish a secure sense of self, mutuality, and the capacity for inter/intra-subjectivity when difficulties in empathy and attunement exist as a result of relational trauma. This can be between parent and child, within adult relationships, between client and therapist, or in organisational contexts.

The outstanding collection of papers in this volume make a significant contribution to the field of attachment and our understanding of how child rearing affects each aspect of our lives, from the interpersonal to the organisational and societal. Each paper moves beyond the academic and theoretical to provide answers to the many difficult questions raised at the conference.

The practical, sometimes step-by-step explanation of the use of empathy in one-to-one clinical work, in health service organisations or society generally, offer a positive and hopeful way forward. All of the presenters faced up to the challenges of repairing or reversing the impact of derailed attachments and the toxic impact of trauma, offering a realistic but hopeful route to improved relating and healthier attachments.

This publication will be a valuable resource for students, seasoned practitioners, and health service professionals alike who want to enhance their understanding of empathy and attachment in this demanding field.

Subject areas covered by your book in order of importance and key subject area:

- causes of insecure attachments

- impact of relational trauma

- how to re-establish a secure sense of self

- working one to one and in organisational settings

Implementation of the International Classification of Functioning, Disability and Health (ICF) and the ICF Children and Youth Version (ICF-CY) Within the Context of Augmentative and Alternative Communication

Pless M, Granlund M. (2012)

The purpose of this article is to discuss the implementation of the International Classification of Functioning, Disability and Health (ICF), and the ICF version for Children and Youth (ICF-CY), within the context of augmentative and alternative communication (AAC). First, the use of the ICF and the ICF-CY in AAC research is analyzed. Second, examples of training and implementation of ICF from other contexts besides AAC are provided. Finally, we synthesize data to provide directions for future implementation of the ICF and ICF-CY in the field of AAC. We conclude that, within AAC, organizational routines and intervention documents need to be adapted to the universal language and classification framework of the ICF and ICF-CY. Furthermore, examples are needed to demonstrate how factors affect implementation at organizational and individual levels.

Implementation, process, and preliminary outcome evaluation of two community programs for persons with stroke and their care partners

Huijbregts MPJ, Myers AM, Streiner D, Teasell R. (2008)

Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.

Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change

Clarke DJ, Godfrey M, Hawkins R, Sadler E, Harding G, Forster A, et al. (2013)

Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.

Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.

Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Implementing child-focused family nursing into routine adult psychiatric practice: hindering factors evaluated by nurses

Korhonen, T.,Vehviläinen-Julkunen,K.,& Pietilä, A-M. (2008)

Abstract
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.

Implementing key worker services: a case study of promoting evidence-based practice, Findings

Mukherjee, S., Sloper, P., Beresford, B., & Lund, P. (1999)

The failure of research findings to influence practice is well established, particularly in the field of social care. Provision of information alone rarely results in change. A project recently completed by the Social Policy Research Unit, University of York, took an innovative approach to the issue of translating research into practice.

Implications of parental suicide and violent death for promotion of resilience of parentally bereaved children

Brown, A.C., Sandler, I.N., Tein, J.Y., Liu, X.C. & Haine, R.A. (2007)

This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on cause of parental death. In addition, cause of death did not substantially affect the relations between risk and protective factors and bereaved children's outcomes. It is concluded that cause of death from violence or suicide is not a very useful indicator of bereaved children's need for or likelihood of benefiting from an intervention.

Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS

Judge KS, Yarry SJ, Looman WJ, Bass DM. (2013)

This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers

Wilson, A. (2012)

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

Improving partnerships with families and carers in in-patient mental health services for older people: a staff training programme and family liaison service

Stanbridge RI, Burbach FR, Rapsey EHS, Leftwich SH, McIver CC. (2013)

In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.

In Their Own Words: Improving Services and Hopefulness for Families Dealing with BPD

Buteau, E., Dawkins, K., & Hoffman, P. D. (2008)

The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

Incidence and costs of accidents among attention-deficit/hyperactivity disorder patients

Swensen, A., Birnbaum, H. G., Ben Hamadi, R., Greenberg, P., Cremieux, P., & Secnik, K. (2004)

PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.

METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.

RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.

CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.

Inclusive education for high school students with severe intellectual disabilities: Supporting communication

Downing, J. E. (2005)

This article provides a summary of different strategies used to support the complex communication needs of high school students with severe intellectual disabilities and additional impairments who are included in general education classrooms. The premise of this paper is that students with severe cognitive disabilities benefit from inclusive educational opportunities at the high school level and can acquire critical communication skills, given the necessary support. High school students typically communicate for a variety of purposes and use a variety of different modes of communication. This variety in purpose and mode extends to students who do not use speech and have other severe disabilities. The role that peers can play in the development of communication for high school students is described, as well as the need to critically evaluate the learning environment in order to identify communication opportunities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Increased Risks of Heart Disease and Stroke Among Spousal Caregivers of Cancer Patients

Jianguang, J., Zöller, B., Sundquist, K., & Sundquist, J. (2012)

Background—Spousal caregivers of cancer patients suffer psychological and physical burdens that may affect their risk of subsequently developing coronary heart disease and stroke.

Methods and Results—Cancer patients were identified in the Swedish Cancer Registry, and information on their spouses was retrieved from the Swedish Multi-Generation Register. Follow-up of caregivers was performed from the date of the first diagnosis of cancer in their spouses through 2008. Standardized incidence ratios were calculated for spousal caregivers of cancer patients compared with those without an affected spouse. After the cancer diagnosis in wives, the risks of coronary heart disease, ischemic stroke, and hemorrhagic stroke in husbands were 1.13 (95% confidence interval [CI], 1.10–1.16), 1.24 (95% CI, 1.21–1.27), and 1.25 (95% CI, 1.18–1.32), respectively. The corresponding risks in wives with an affected husband were 1.13 (95% CI, 1.10–1.16), 1.29 (95% CI, 1.26–1.32), and 1.27 (95% CI, 1.19–1.34). The increases were consistent over time and were more pronounced if the spouse was affected by a cancer with a high mortality rate, such as pancreatic and lung cancers.

Conclusions—Spousal caregivers of cancer patients have increased risks of coronary heart disease and stroke that persist over time. Clinical attention should be paid to spousal caregivers, especially those caring for cancer patients with high mortality rates.

Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA

Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J. (2005)

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA.

Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J. (2005)

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home – study protocol for a web-based intervention

Alvariza, Anette ; Häger-Tibell, Louise ; Holm, Maja ; Steineck, Gunnar ; Kreicbergs, Ulrika (2020)

Abstract

Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

From cognitive information to shared meaning: healing principles in prevention intervention

Beardslee W.R., Swatling, S., Hoke, L., Rothberg P.C., van de Velde, P., Focht, L. & Podorefsky, D. (1998)

Families with parental affective disorder participated in a large-scale longitudinal study which involved participation in a standardized, short-term, psychoeducational preventive intervention. These families were followed for at least 3 years. An analysis of clinical material from the first 12 families to complete the intervention identified specific healing principles that contributed to positive changes in behavior and attitude. The healing elements of the intervention included demystification of the illness, modulation of shame and guilt, increase in the capacity for perspective taking, and development of a hopeful perspective and belief in one's own competence. Therapeutic effectiveness evolved in a process that linked cognitive information and presented depression as an illness that could be understood with the acknowledgement of family members' individual and collective experience. In this way, families developed a shared understanding of the illness that was useful over time. This article discusses the ways in which the healing principles promoted changes in family members' behavior and attitude, which, in turn, enhanced resiliency in children.

From symptom to context: a rewiev on the litterature on refugee childrens mental health

De Haene, L., Grietens, H., & Verschueren, K. (2007)

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

From symptom to context: a rewiev on the litterature on refugee childrens mental health

De Haene, L., Grietens, H., & Verschueren, K. (2007)

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Från fattigvård till socialtjänst: om socialt arbete och utomparlamentarisk aktivitet

Pettersson, U. (2011)

Vilken människosyn och vilka värderingar ligger till grund för socialtjänstens verksamhet, och hur har de påverkat uppbyggnaden av dagens socialtjänst? Kan sociala insatser huvudsakligen beskrivas som myndighetsutövning, där även tvång kan komma i fråga, eller kan de ses som en verksamhet med respekt för den enskildes vilja och integritet? Under socialvårdens utveckling från fattigvård till socialtjänst har två utomparlamentariska grupper utifrån olika ideologiska utgångspunkter haft stor betydelse för socialvårdslagarnas innehåll och utformning. Centralförbundet för socialt arbete (CSA) verkade som initiativtagare och pådrivare när de första lagarna stiftades vid förra sekelskiftet. Samarbetskommittén för socialvårdens målfrågor, som bildades i slutet av 1960-talet, hade möjlighet att påverka Socialtjänstlagens slutliga utformning.

Boken innehåller en skildring av den tidigare socialvården och beskriver hur de två grupperna agerade för att få gehör för sina idéer. Särskild uppmärksamhet ägnas Samarbetskommittén och dess framgångar och misslyckanden under den 14 år långa lagstiftningsprocessen, som i det turbulenta slutskedet med många regeringsskiften och skiftande ideologier särskilt kom att handla om tvångsvården av vuxna missbrukare.

Boken vänder sig främst till studerande och verksamma inom socialt arbete, men bör även vara av intresse för närliggande ämnesområden inom samhällsvetenskap och historia.

Från systemteori till familjeterapi

Schjödt B, Egeland TA (1994)

Denna grundbok i familjeterapi ger en bred introduktion till familjeterapins historia, dess grundläggande idéer och de viktigaste familjeterapeutiska modellerna.
Boken behandlar bl a:
• familjeterapins historia från 1950-talet till våra dagar,
• det teoretiska fundamentet för familjeterapi, inklusive en introduktion till systemteori, livscykelteori och kommunikationsteori,
• de viktigaste familjeterapeutiska modellerna, med fokus på deras teoretiska bas och praktiska användning.
Boken är avsedd för grundläggande högskole- och universitetsutbildning i psykologi, socialt arbete, vård och omsorg. Den är av intresse för alla som arbetar med familjer: psykologer, socionomer, vårdpersonal och präster.

FUNKIS – funktionshindrade elever i skolan. Funkiskommittén

SOU (1998)

Den 23 november 1995 bemyndigade regeringen det statsråd som har till uppgift att föredra ärenden om det offentliga skolväsendet och fristående skolor att tillkalla en kommitté (U 1995:14) med uppdrag att utreda hur ansvaret för utbildning och omvårdnad i anslutning till utbildning av funktionshindrade elever skall fördelas mellan stat, kommun och landsting samt vem som skall finansiera verksamheten

Funktionshinder och strategival. Om att hantera sig själv och sin omvärld

Peterson, G., Ekensteen, W & Rydén, O (2006)

Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.

Funktionshinder, samtal och självbestämmande. En studie av brukarcentrerade möten

Karlsson, Kristina (2007)

Doktorsavhandling

Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade "brukares" självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett "idealt" självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det "ideala" självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det "samtalande" och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.

Funktionshindrade 1988-1999

Statistiska centralbyrån, SCB (2003)

Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.

Funktionshindrade 1988-1999

Statistiska centralbyrån, SCB (2003)

Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.

Funktionshindrade i välfärdssamhället

Lindqvist, R. (2012)

Funktionshindrade i välfärdssamhället handlar om funktionshindrades livsvillkor på några centrala områden: arbete och försörjning, vård, omsorg och utbildning, men också om funktionshindrades roll som samhällsmedborgare med anspråk på delaktighet och inflytande.

Bokens fokus ligger till stor del på välfärdssystemets möjligheter och begränsningar relaterade till funktionshindrades villkor. Men det finns naturligtvis en rad andra faktorer som också påverkar medborgarnas villkor som till exempel utvecklingen inom ekonomi och arbetsmarknad och inte minst de attityder och föreställningar vi har om vad det innebär att ha ett funktionshinder.

Den historiska framställningen visar på en utveckling från ett ensidigt individuellt handikappbegrepp, som betonar individens sjukdomar, skador och andra brister som konstituerande för handikappet, till ett mer relativt funktionshinderbegrepp som betonar omgivningens betydelse för om handikapp föreligger eller ej.

Boken vänder sig till studerande på universitet och högskolor, framför allt inom socialt arbete och vårdvetenskap.

Rafael Lindqvist är professor i sociologi, med inriktning funktionshinderforskning, Uppsala universitet.

Future Directions in Family and Professional Caregiving for the Elderly

Zarit, S. H. and A. M. Reamy (2013)

As the population ages and the expected wave of baby boomers settles into old age, there is a pressing need to examine the people and institutions that care for elders and the ways in which the system will need to adapt during the next 5-10 years to accommodate the needs of the elderly and of their caregivers. This paper examines future directions in this field, identifying the major issues from two perspectives: family caregiving and professional caregiving. Despite extensive research on caregiving, more attention to a series of methodological issues is needed, as is more extensive evaluation of promising intervention models in community and institutional settings. Effective strategies to lower caregiver distress and improve the quality of care can be implemented in efficient ways that manage costs, but the argument for innovations must be made based on efficacy.

Får hundar korvar i himlen?

Sara Galli, Mats Molid (2014)

Alva har en hund Musse. Musse är inte bara en hund, Alva ser Musse som en storebror också. När Alva får höra att Musse är gammal och inte kommer att leva länge till blir Alva både ledsen och arg, hon vill att han ska leva för alltid. Det är ju honom hon har som bästa vän och som hon berättar alla hemlisa för! Alva funderar över hur det ska gå till när Musse ska dö och vad händer med honom efteråt? Alva inser till slut att han inte försviner helt. Han finns ju kvar inom henne, lite i köket och kanske även i himlen.

För alltid i mitt hjärta

Bouw Rose Marie (2017)

Kristina och Vivianne, två motpoler vars liv löper parallellt i Solgläntans korridorer när de hälsar på sina mödrar. Sida vid sida i demensens skugga söker de sig till varandra, i behov av ett outtalat stöd. Vivianne gömmer sin osynliga sorg bakom lager av glada färger och en väldigt lång halsduk. Fast besluten att alltid se det positiva i livet väljer hon att hålla fast i nuet och leva för stunden, tacksam för alla minnen hon får. Kristina försöker förtränga sitt förflutna, men hon är rädd för att glömma. Rädd att pärlhalsbandet av minnen ska gå sönder. Rädd att bli som sin mamma, som hon i hemlighet önskar livet ur. Men döden kommer aldrig i tid. Den kommer alltid för sent. Eller för tidigt. För alltid i mitt hjärta är en roman om en oväntad vänskap, som kommer att betyda så mycket mer än Kristina och Vivianne någonsin hade kunnat ana. En vänskap som kommer att sträcka sig genom både tid och rum.

För den jag är – om utbildning och utvecklingsstörning

SOU (2003)

Carlbeck-kommittén har till uppgift att se över utbildningen för barn, ungdomar och vuxna med utvecklingsstörning. Delbetänkandet För den jag är om utbildning och utvecklingstörning (SOU: 2003: 35), är en beskrivning och kartläggning av hur utbildningen för barn, ungdomar och vuxna ser ut i dag.

Kommitténs uppgift är att hitta vägar att stärka utbildningen för barn, ungdomar och vuxna med utvecklingstörning med det övergripande målet att åstadkomma en inkluderande skola och en inkluderande undervisning.

Förskola i brytningstid

Skolverket (2004)

Skolverket presenterar den första nationella utvärderingen av förskolan efter reformen 1998 då förskolan fick en läroplan och blev det första steget i det samlade utbildningssystemet för barn och ungdom. Utvärderingens övergripande syfte är att belysa hur förskolan utvecklats i olika avseenden efter reformen samt att ge en lägesbeskrivning av reformens effekter. Utvärderingen visar på att förskolans utveckling innehåller både positiva och problematiska inslag. Förskolans läroplan har tagits emot positivt i kommuner och förskolor, men har man lyckats uppnå det som var en av de viktigaste målen med reformen "en likvärdig förskola"?Förskolan har dessutom i en rad avseenden närmat sig skolan, i vissa fall på bekostnad av sin särart. Barns prestationer kartläggs och bedöms i ökad omfattning, vilket strider mot grundtankarna i reformen.

Föräldraboken om ADHD

Lena Westholm (2016)

"Föräldraboken om ADHD" vänder sig till föräldrar som har ett barn eller en tonåring med ADHD. Grundtanken är att ökad kunskap om ADHD ska göra det lättare för föräldrarna att förstå och stödja sitt barn.

Boken är skriven av psykolog Lena Westholm. Hon arbetar på ADHD-center inom Habilitering och Hälsa i Stockholms läns landsting.I boken konstateras att föräldrar till barn eller tonåringar med ADHD måste kämpa och använda mer energi än andra föräldrar för att få tillvaron att fungera. Det ställs stora krav på tålamod, planering och konflikthantering.

Läsaren ges tips på olika sätt att lösa problem och hur det kan bli lättare att hantera vardagen. Områden som tas upp är ADHD i olika åldrar, skolgång, medicinering, fritid, mat- och sovvanor, relationer, känslor med mera.

Föräldralärande inom barnhabilitering. Teori och praktik

Solders, Lena (2008)

Föräldrautbildning erbjuds idag bl.a. inom förskola/skola, socialtjänst liksom hälso- och sjukvård. Lärandet kan beskrivas ur olika perspektiv. Om barnet är det primära brukar man tala om Parent Education, när fokus ligger på familjen som helhet talar man om Parent Training och när det är föräldrarna som står i centrum för utbildningsinsatsen säger man ofta Parent Support. En viktig tanke är att få tillstånd ett bra samarbete mellan föräldrar och personal. Det är nödvändigt för att skapa större delaktighet och ett bättre lärande för föräldrar.

Föräldrar med utvecklingsstörning och deras barn –vad finns det för kunskap?

Socialstyrelsen (2005)

I denna samanställning av befintlig forskning framkommer att några områden är mer studerade än andra. Ett antal studier har undersökt föräldraförmåga och föräldrakompetens. I dag vet man ganska väl vad som kan fungera och vad som kan brista i föräldrarnas förmåga att ta hand om sina barn. Resultat från olika studier visar att träning och utbildning kan förbättra föräldrarnas förmåga. En förutsättning för detta är dock att utbildningen är kontinuerlig såväl över tid som i kontakten med de professionella. Befintliga studier inkluderar oftare mödrar än fäder vilket innebär att det finns mer kunskap om mödrarna. Endast ett fåtal studier har undersökt fäderna och männen i kvinnornas liv.

Vidare finns det ett fåtal studier som fokuserar barnet i de familjer där föräldrarna har en utvecklingstörning. Den forskning som finns visar dock att barnen utgör en riskgrupp. Riskfaktorerna varierar delvis beroende på barnets ålder, men även beroende på om barnet har en utvecklingsstörning. Det rapporteras att det finns risk för att barnen försummas vilket kan ta sig uttryck i bristande omvårdnad, att barnen inte får näringsriktig kost, bristande säkerhet i hemmet och bristande hygien. Det finns även risk för att barnen utsätts för misshandel. Studier visar en ökad risk för att barn med utvecklingsstörning utsätts för misshandel och/eller sexuella övergrepp jämfört med andra barn, oavsett om föräldrarna har en utvecklingsstörning eller inte.

Det rapporteras att barn som har föräldrar med utvecklingsstörning kan ha svårigheter med språklig och kognitiv utveckling. Dessutom förekommer det att barnen har beteendeproblem och emotionella svårigheter och det är vanligare att barnen har psykiska svårigheter, framför allt depressioner, än andra barn. Förekomsten av svårigheter samt barnens utsatthet kan påverka barnens förmåga att senare i livet fungera som föräldrar.
Hur livet gestaltar sig för de barn som har vuxit upp med föräldrar som har en utvecklingstörning finns det liten kunskap om. I en dansk studie har forskarna funnit att kvinnorna lever ett mer utsatt liv än männen. I en studie från England finns det resultat som visar att de "vuxna barnen" som själva har en utvecklingsstörning har ett mer fungerande liv jämfört med de "vuxna barn" som är normalbegåvade.

Familjernas möten med det offentliga har studerats ur ett antal olika perspektiv, såväl barnens, föräldrarnas, närståendes som professionellas. I mötet mellan familj och professionella rapporteras att det är av stor betydelse att professionella är väl förtrogna med familjens behov, att de samordnar sina insatser, att det inte är för många inblandade och att man samverkar med familjen och tar hänsyn till familjemedlemmarnas behov.

När det gäller hälsobefrämjande faktorer i familjer där föräldrarna har en utvecklingsstörning finns det resultat som visar på betydelsen av såväl informella som formella nätverk. Forskare har funnit att det är olika karaktär på stödet från det formella respektive det informella nätverket. Det informella nätverket bidrar med praktisk hjälp i vardagslivet. Det formella nätverket bidrar med sakkunskap om viktiga funktioner i samhället, kunskap om interaktion mellan föräldrar och barn samt stöd för att föräldrarna skall utveckla sin kompetens.

Flertalet studier påpekar vikten av att kartlägga föräldrarnas och familjernas levnadsomständigheter för att kunna genomföra relevanta insatser. En rad olika mer eller mindre framgångsrika insatser som prövats i familjerna har rapporterats. Som framgångsfaktorer omnämns att stödet ska utformas efter barnens och föräldrarnas behov, att det är kontinuerligt och att det genomförs under en längre tid. För att insatser skall ge god effekt bör de vara anpassade till familjens omgivning, de bör vara prestationsbaserade och omfatta förebilder, praktisk feedback, beröm och belöningar. Forskare menar även att insatserna skall utformas så att det blir möjligt för föräldrar att utvecklas utifrån sina förutsättningar.

Föräldrars erfarenhet av kontakt med psykiatrisk vård - behov, upplevelser och önskemål, en pilot studie

Ewertzon, M. and H. Forssell (1994)

Syfte med föreliggande studie var att identifiera centrala kategorier och dimensioner som beskriver: "Föräldrars, till schizofrena barn, erfarenhet av kontakten med psykiatrisk vård". Beskrivningen bygger på föräldrars erfarenhet - behov, upplevelser och önskemål, av kontakten i samband med barns sjukdom. Barn är i studien är inte ett åldersrelaterat begrepp utan beskriver förhållandet till föräldern. Den metod studien bygger på är inspirerad av "Grounded theory" och har genomförts med ostrukturerade intervjuer. Fyra intervjuer med föräldrar till barn med en psykossjukdom har analyserats. Två män och fyra kvinnor ingår i studien, de representerar erfarenhet av kontakt av psykiatrisk vård från tre sjukvårsområden inom Stockholms läns landsting och kontakten omfattar 5-16 år. Resultatet visar såväl positiv som negativ erfarenhet av kontakten. De behov i kontakten som framträder är - behov av samarbete med psykiatrisk vård, - behov av att bli omhändertagna och - behov av kontakt med människor i samma situation. De upplevelser i kontakten som framkommer är - upplevelser av samarbete, - upplevelser av bristande samarbete - upplevelser av att bli omhändertagna. - upplevelser av dåligt bemötande, upplevelser av att bli skuldbelagda och - upplevelser av bristande kontinuitet i vården. De önskemål på kontakten som framkommer är - önskemål om samarbete, - önskemål om metoder för gott omhändertagande, - önskemål om behandlingsinriktning, - önskemål om att ej bli skuldbelagda, - önskemål om anhörigutbildning och önskemål om samarbete med IFS -Intresseföreningen för schizofreni eller andra psykotiska sjukdomar.

Föräldraröster

Rausch, B. (2013)

InledningUnder många år har Föräldrautbildningen/anhörigutbildningen vid Forum Funktionshinder engagerat socionomBerit Rauschsom föreläsare för föräldrar på temat "Det finns en framtid –men vad gör man av allt det som känns tungt?". Berit har också lett kurser i konsultativt förhållningssätt som riktat sig till paramedicinsk personal inom Habilitering & Hälsa och handlett personal. Berit är själv förälder till en idag vuxen dotter med funktionsnedsättning. Utifrån sina erfarenheter såg Berit ett behov av att fördjupa kunskapen om föräldrars situation genom föräldraintervjuer för att sedan kunna använda den kunskapen som underlag för diskussion och kompetensutveckling för personalen inom Habilitering & Hälsa.Frågan om en studie diskuteradesinom ledningsgruppen för Utvecklingsforum och i FoU-rådet vid flera tillfällen. Några synpunkter som framkom var att Fokus bör ligga på riskfaktorer och kritiska punkter. Hur identifierar man dem? Hur fångar man upp? I diskussion med verksamhetschef och Utvecklingsforum kom vi överens med Berit Rausch om att genomföra projektet Föräldraröster. BakgrundBerit Rausch, initiativtagare till projektet Föräldraröster, har mångårig erfarenhet av såväl föräldragrupper som handledning av personal inom bland annat Habilitering &Hälsa. Föräldrar som får ett barn med funktionsnedsättning genomgår eninre process som till stora delar påminner om en sorgeprocessnär man utsätts för en förlust av något slag.Även i handledningssituationer blir denna process aktuell när situationer som personal har att handskas medska diskuteras. Sjukgymnaster, logopeder, arbetsterapeuter etc saknar utbildning i psykosocialt arbete.Isamtal med nyckelpersoner inom Habilitering &Hälsa har framkommit att organisationenhar intresse av att titta närmare på vad det är som gör att vissa föräldrar kommer vidare i sin process efter att ha fått ett barn med funktions-nedsättning, medan andra "fastnar" i någon av krisens faser, förnekelse, ilska eller sorg. Frågeställningen ska ses i relation till habiliteringens utbud och arbetssätt samt förhållningssätt och bemötande av personer i kris.Vi såg det också som oerhört viktigt att förmedla den unika kunskap och kompetens som föräldrar har, till all personal inom Habilitering & Hälsa.
SyfteAtt utforska vilka kritiska punkter som föräldrar beskriver för hur de tagit sig vidare/"fastnat"ochhur föräldrar utifrån sin unika situation ser på Habilitering & Hälsas utbud, insatser, förhållningssätt och bemötande.ProjektmålAtt fördjupa kunskapen om riskfaktorer,kritiska punkter och föräldrars behov av stöd i olika faser. Att presentera resultatet av intervjuernai en sammanfattande rapport. Att inspirera till kompetensutveckling hos personal när det gäller bemötande och till anpassning av habiliteringens insatser.MetodBerit Rausch har gjort en kvalitativstudie bestående av djupintervjuer med 10 föräldrapar utifrån ett semi-strukturerat frågeformulär.Anhörigutbildningen vid Forum Funktionshinder mejlade 338 föräldrar som hade anmält sig till anhörigutbildningar under hösten 2010 och ställde frågan om de var intresserade av att bli intervjuade av Berit Rausch. 36 föräldrar/föräldrapar svarade att det var intresserade. Tillsammans med Berit valdes 11 föräldrar/föräldrapar ut för intervju. Urvalet gjordes utifrån ålder och diagnos för att i möjligaste mån få en så stor spridning som möjligt.10 familjer intervjuades.ProjektorganisationProjektgruppens medlemmar har bestått av Eva Norberg, informationschef (projektägare tom januari 2012) Barbro Lagander, verksamhetschef VO Stockholm (projektägare from februari 2012), Marie Bökman, konsulent vid Forum (projektledare), Kristina Eklund, konsulent vid Forum och Barbro Sjöström Miljand, enhetschef Kris-och samtalsmottagningen, Länscenter. ProjektresultatProjektet har bidragit medett skriftligt material som beskriver riskfaktorer och olika sätt att handskas med sin livssituation, vilket kan bidra till ökad förståelsen för föräldrars olika sätt att skapa en fungerande vardag. Föräldraröster kan användas i personalutbildningen och utveckling av metoder för föräldrastöd.

Vad hjälper? Vägar till återhämtning från svåra psykiska problem

Topor, Alain (2004)

De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig. Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap. Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin. På Natur och Kultur har han tidigare utgivit Återhämtning från svåra psykiska störningar

Vanvård i social barnavård, slutrapport

SOU (2011)

Den svenska Utredningen om vanvård i den sociala barnavården (i fortsättningen kallad Vanvårdsutredningen) initierades, i likhet med flera andra länder, först efter att människor berättat i media om sina erfarenheter av övergrepp och misshandel från sin tid i barnhem eller fosterhem.

Delrapport och Upprättelseutredning

I januari 2010 presenterade utredningen sin delrapport, "Vanvård i social barnavård under 1900-talet". En direkt följd blev att regeringen tillsatte Upprättelseutredningen som fick i uppdrag att föreslå hur upprättelse för dessa människor skulle kunna utformas.

Upprättelseutredningen överlämnade sitt betänkande till regeringen i februari 2011. Förslagen handlade om en process i tre delar; ett erkännande av det som hänt och en ursäkt, kompensation till dem som utsatts samt åtgärder för att förhindra upprepning.

Slutrapportens syfte

Syftet med slutrapporten är att presentera en fördjupad resultatredovisning där enskilda människor och deras berättelser, får en mer framskjuten placering än i delrapporten. Dessutom har ambitionen varit att diskutera hur det var möjligt att intervjupersonerna kunde råka så illa ut som barn och hur liknande missförhållanden för samhällsvårdade barn ska kunna undvikas i framtiden.

Slutrapportens struktur

Utredningens material omfattar redogörelser i olika former; intervjureferat, inspelade intervjuer, nedtecknade levnadsberättelser, arkivhandlingar, domar och tidningsartiklar. Detta varierande material ger inblick i sammanhang i vilken vanvården skedde och kunskap om den utsatthet som barn och ungdomar inom den sociala barnavården befann sig i.

Var - dags innehåll : en studie om hur boende och anhöriga upplever det sociala innehållet på ett boende för personer med demenssjukdom. Skrift 2011:3

Eriksson, Y. (2011)

Den här studiens syfte har varit att delge hur personer som bor på demensboende, och hur anhöriga som har närstående som bor på demensboende, upplever det sociala innehållet. Ett innehåll som utgår från faktorer som bemötande, social samvaro, aktiviteter, utevistelse, inflytande, boendemiljö, kan sammanfattas som ett meningsfullt socialt innehåll.

Vidare var syftet att delge några av de synpunkter och reflektioner som framkom från ett seminarium om Socialt innehåll i vardagen som hölls vid Blekinge kompetenscentrum i november 2009. De som deltog var från olika kommuner i Blekinge och hade i sina yrkesroller på olika sätt arbetat med det sociala innehållet för personer med demenssjukdom.

Var så god och sitt

Winnberg-Lindqvist, Pia & Holm, Sara (2000)

Vad drömmer barn med funktionshinder om att göra? Leka lekar som alla barn, trots att man inte kan klättra, rida eller gunga. Filmen som är gjord av Pia Winnberg-Lindqvist och Sara Holm är ett komplement till boken med samma namn.

Överförd till dvd 2011

Ways of understanding being a healthcare professional in the role of family member of a patient admitted to hospital. A phenomenographic study

Carlsson, E., Carlsson, A. A., Prenkert, M., & Svantesson, M. (2016)

Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
OBJECTIVE:
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
DESIGN:
Qualitative with a phenomenographic approach.
SETTING:
Three Swedish hospitals.
PARTICIPANTS:
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
METHODS:
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
RESULTS:
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
CONCLUSIONS:
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.

The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper

Hanna Allemann, Frida Andréasson, Elizabeth Hanson, , Lennart Magnusson, Tiny Jaarsma, Ingela Thylén, Anna Strömberg (2023)

Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme

Vem är bäst : En familjs verklighet i autismens gåtfulla liv

Madsen, Hans (2017)

Att få ett autistiskt barn är något av det mest omvälvande man kan uppleva. Livet som Autist skiljer sig så mycket från ett vanligt, vilket även kom att innebära dramatiska förändringar för oss som föräldrar. Det som var så självklart blev nu bergsliknande hinder som skulle ta all vår kraft och energi för att lösa och hitta vägar som fungerar. ?Boken beskriver hur det var att få ett autistisk barn till de utmaningar som ungdomsåren och vuxenlivet förde med sig. Det vi trodde var en manual i uppväxt visade sig vara något helt annat i autismens inneslutna värld. ?Vår son är idag vuxen och vi kan se tillbaka på ett liv full av överraskningar utmaningar och många misslyckanden. Men samtidigt många segrar. Vårt liv fick inte bli isolerad från all det vi ville uppnå tillsammans med våra barn. Autismen fick inte segra, det skulle vara vår tydliga mål, ja livsuppgift. Autism skulle inte vara vår son utan bara en del av honom. Bakom ögonen fann vi en riktig go, glad, kärleksfull och alldeles underbar kille, vi hittade vår son.??Berättelsen börjar en vårdag 1993. En vanlig dag kan det verka som, men denna lördag skulle våra liv förändras för alltid. Det liv vi hade hoppats på skulle nu för alltid vara borta. Vi visste det bara inte då.

Vem är den enskilde i ett gemensamt hem? : en studie av hur biståndshandläggare förhåller sig till anhörigas möjligheter till frivillighet, autonomi och personlig integritet

Takter Martina (2018)

Martina Takters syfte med avhandlingen är att utforska anhörigas möjligheter till frivilliga val, autonomi och personlig integritet. Detta i samband med en hjälpbehövandes funktionsnedsättning eller sjukdom för att kontextualisera utifrån vilket sammanhang dessa möjligheter ska förstås. Utgångspunkten för studien är biståndshandläggningens praxis i kommunal vård- och omsorg samt biståndshandläggares förhållningssätt till anhöriga. En slutsats är att biståndshandläggarna genom motivationsarbete lägger fokus på den enskilde som sökande part och mottagare för bistånd och att den anhöriges situation inte ges utrymme vid biståndshandläggningen. Det innebär att den enskildes rätt att avstå erbjudna insatser som t.ex. hemtjänst, oavsett behov och social kontext avgränsar den anhöriges möjligheter till frivilliga val, autonomi och personlig integritet. I förlängningen kan det innebära att den anhörige dels får ta ett ansvar för den enskildes situation utan att ha möjlighet att välja detta, och dels att den anhöriges behov osynliggörs. Genom att ansvaret görs till en privat angelägenhet legitimerar det ett tillbakadragande av det offentligas ansvar.

What do we know about older former carers? Key issues and themes

Larkin, M and Milne, A. (2016)

Abstract
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.

What explains health in persons with visual impairment?

Leissner J, Coenen M, Froehlich S, Loyola D, Cieza A. (2014)

Background
Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment.

Methods
Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health.

Results
In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives.

Conclusions
There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.

What I think and feel: a revised measure of children's manifest anxiety

Reynolds, C. R. and B. O. Richmond (1978)

The 1956 adaptation for children of Taylor's Manifest Anxiety Scale, the Children's Manifest Anxiety Scale, was revised to meet current psychometric standards. A 73-item revision draft was administered to 329 school children from grades 1 to 12. Based on item-analysis criteria for rbis greater than or equal to .4 and .30 less than or equal to p less than or equal to .70, 28 anxiety items were retained along with 9 of the original 11 Lie scale items. A cross-validation sample of 167 children from grades 2, 5, 9, 10, and 11 produced a KR20 reliability estimate of .85. Anxiety scores did not differ across grade or race. Females scored significantly higher than males. For the Lie scale, significant differences appeared by grade and race. No sex differences were obtained on the Lie scale. The resulting scale appears useful for children in grades 1 to 12 and may aid in future studies of anxiety as well as assisting the clinician in the understanding of individual children.

What imitation tells us about social cognition: a rapprochement between developmental psychology and cognitive neuroscience

Meltzoff, A. N., & Decety, J. (2003)

Both developmental and neurophysiological research suggest a common coding between perceived and generated actions. This shared representational network is innately wired in humans. We review psychological evidence concerning the imitative behaviour of newborn human infants. We suggest that the mechanisms involved in infant imitation provide the foundation for understanding that others are 'like me' and underlie the development of theory of mind and empathy for others. We also analyse functional neuroimaging studies that explore the neurophysiological substrate of imitation in adults. We marshal evidence that imitation recruits not only shared neural representations between the self and the other but also cortical regions in the parietal cortex that are crucial for distinguishing between the perspective of self and other. Imitation is doubly revealing: it is used by infants to learn about adults, and by scientists to understand the organization and functioning of the brain.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson