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Adult decisions affecting bereaved children

Cranwell, B. (2007)

This child-centred study involved 30 young people aged 6-12 years whohad lose one or both parents.Semi-structured interviews with the children were recorded and analysed qualitatively, exploring their views of the interventions interactions of adults, peers and the school around the time of the death.Questions explored such issues as how the news was delivered, opportunities for anticipatory grieving, participation in rites of passage and sources of support.The results confirm that overprotection in breavement, echoedin the reluctance of adult gatekeepers to allow children to participate in research, does not recognise children's needs and can hinder the grieving process and erode self-esteem.

Anhörigkonsulentens arbete och yrkesroll

Winqvist, M. (2014)

Anhörigkonsulenter och motsvarande yrkesgrupper har en central betydelse för innehållet i och utvecklingen av anhörigstödet i landets kommuner. Nka har därför genomfört en enkätstudie med syftet att få en nationell överblick över hur denna relativt sett nya yrkesgrupp utformar och ser på sitt arbete. Denna rapport innehåller en sammanställning av svaren på denna enkät som riktade sig till landets samtliga anhörigkonsulenter.

Anhörig-omsorg och stöd

Johansson L. (2007)

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.

Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.

Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.

Anhörigperspektiv - en möjlighet till utveckling? Nationell kartläggning av kommunernas stöd till anhöriga 2019

Takter Martina (2020)

Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.

Anhörigperspektiv i äldreomsorg - ett utvecklingsprojekt

Winqvist, M., & Lerman, B. (2010)

Under 2008 – 2009 genomförde Enheten för FoU-stöd, Regionförbundet Uppsala län ett utvecklingsprojekt tillsammans med en personalgrupp vid ett särskilt boende i Enköpings kommun samt en personalgrupp vid ett hemtjänstdistrikt i Tierps kommun.

Syftet med projektet var att införa och stärka ett anhörigperspektiv i den ordinarie äldreomsorgen. Vid uppföljning hösten 2009 framkom att flera förbättringar har genomförts i verksamheterna som en följd av projektet. Projektet presenteras i den här rapporten.

Anhörigperspektiv i äldreomsorg – ett utvecklingsprojekt, FoU-rapport 2010/3.

Winqvist, M. (2010)

Den offentliga äldreomsorgen har sedan 1990-talet allt mer koncentrerats till personer med
omfattande hjälp-/stödbehov. Tröskeln till hemtjänst har höjts. Kunskaperna har samtidigt
ökat om omfattningen av den hjälp som anhöriga faktiskt ger och att denna hjälp även kan
innebära stora påfrestningar för de anhöriga. Detta har lett till att staten under senare år har
gjort stora satsningar för att stimulera utvecklingen av kommunernas stöd till anhöriga. Detta
stöd kan vara direkt eller indirekt. Det kan också beskrivas som synligt respektive osynligt.
Det personalen gör för den person som är sjuk eller funktionshindrad innebär, om det utförs
väl, ett indirekt stöd för den anhöriga. Det osynliga stödet handlar mycket om att ha god
kunskap om anhörigas villkor, förståelse av den anhörigas roll i omsorgsarbetet och för den
anhörigas personliga situation samt hur anhöriga betraktas och bemöts. I detta perspektiv är
stöd till anhöriga en angelägenhet inte bara för dem som arbetar med direkt anhörigstöd utan
för hela organisationen
Ett övergripande syfte med detta projekt har varit att utveckla och pröva metoder för att införa
och stärka ett anhörigperspektiv i vård och omsorgsverksamhet för äldre. Projektet har
genomförts tillsammans med personal i Örbyhus hemtjänstdistrikt i Tierps kommun och
personal på Tallgårdens särskilda boende för äldre i Enköpings kommun.
Projektet har genomförts i tre faser.
1. Analys. Syftet var här att få information om hur de berörda verksamheterna fungerar ur ett
anhörigperspektiv, detta som ett underlag för utvecklingsarbetet. Fokusgruppsintervjuer
genomfördes dels vid hemtjänsten och dels vid det särskilda boendet med såväl anhöriga som
personal samt vid ett senare tillfälle en fördjupad gruppintervju med anhöriga.
2. Intervention. En FoU-cirkel genomfördes, sex träffar à tre timmar, med personalgrupperna
vid hemtjänsten respektive det särskilda boendet. I cirkeln deltog även enhetscheferna och
anhörigkonsulent/anhörigrådgivare. Arbetet var processinriktat och gick ut på att utveckla ett
anhörigperspektiv (förståelse och medvetenhet) samt formulera en handlingsplan för ett
förhållningssätt till och samarbete med anhöriga. Ett genomgående inslag i FoU-cirkeln var
gruppdiskussioner och reflektion. Tanken var att deltagarna själva skulle skapa sin
verksamhets anhörigperspektiv och inte serveras någon färdig lösning. Resultaten från
analysfasen var, tillsammans med deltagarnas egna erfarenheter, ett viktigt grundmaterial för
diskussionerna i FoU-cirkeln. Andra inslag var föredrag om olika teman, informationsgranskning,
film, egna intervjuer med någon anhörig samt arbete med att formulera en
handlingsplan. Varje möte dokumenterades.
3 Uppföljning. Uppföljning av projektet gjordes på flera sätt. Cirka tre månader efter
projektets slut genomförde anhörigkonsulenten/-rådgivaren en gruppintervju med sina
respektive personalgrupper. Vid samma besök fick deltagarna också individuellt fylla i en
utvärderingsblankett. Ytterligare ca tre månader senare genomförde projektledningen återigen
en fokusgruppsintervju med samma frågeställning som i analysfasen samt en gruppintervju
kring frågan om hur anhörigperspektivet kan hållas levande och fortsätta att utvecklas.
Efter projektet kan konstateras att arbetsformen fungerat väl och varit uppskattad. Det kanske
mest betydelsefulla inslaget har varit möjligheten för personalen att i gruppdiskussioner
reflektera kring vad de hört i föredrag, sett i film, läst i artiklar och upplevt i egna intervjuer
7
med anhöriga. Flera exempel gavs på förändringar som genomfördes redan medan projektet
pågick. Exempel på det är införande av telefontid för ökad tillgänglighet, förbättrad
information genom pärmsystem, nya rutiner för kontaktmannaskapet samt en utvecklad
relation mellan kontaktmannen och biståndshandläggaren.

Anhörigskapets uttrycksformer

Jeppsson-Grassman, E. (2003)

Sedan början av 1900-talet har samhällets intresse ökat för den informella, oavlönade hjälp som många människor regelbundet ger till sina närstående. "Anhöriga" har kommit i blickfånget, framför allt anhöriga till äldre. Bakgrunden är bl.a. tilltagande vård- och omsorgsbehov men också en nyvaknad insikt om det informella hjälparbetets betydelse. Men hur ska man egentligen förstå anhörigbegreppet? Vad är det för slags hjälpinsatser som anhöriga utför? Hur vanliga är de och vad består de av?

Anhörigstöd - ett helt annat sätt att tänka. Fokus-Rapport 2011:1

Gough, R., Renblad, K., Söderberg, E., & Wikström, E. (2011)

Författarna har tillsammans 100 års erfarenhet av verksamhet inom området äldre och funktionshindrade och deras familjer.

Rapporten belyser på ett insiktsfullt sätt den komplexitet i anhörigomsorg som ligger i sakens natur och diskuterar dess subtila nyanser.

Denna text är en oväderlig resurs för studenter inom vårdvetenskap, socialt arbete och rehabilitering, för personal som arbetar direkt med anhöriga i sitt dagliga arbete, för beslutsfattare med ansvar för anhörigstöd i kommunerna och för alla andra med intresse för ämnet.

Anhörigstöd i Orsa kommun

Hassis, L. (2009)

Våren 2008 publicerade Dalarnas forskningsråd en kartläggning över anhörigstödet i
Dalarna. Kartläggningen visade att arbetet med anhörigfrågor ser olika ut i Dalarnas
kommuner. Föreliggande rapport syftar till att kartlägga hur samarbetet i
anhörigfrågor ser ut i Orsa kommun. Studien bygger på i första hand personliga
intervjuer med anhörigvårdare och representanter från styrgruppen.
I Orsa finns ett anhörigcenter centralt beläget i anslutning till vårdcentral,
dagverksamhet och särskilt boende. En anhörigsamordnare är anställd på halvtid för
att samordna verksamheten och fungera som kontaktperson. Till sin hjälp har
anhörigsamordnaren en styrgrupp bestående av representanter från
frivilligorganisationer, kyrka och vårdcentral. Flera av styrgruppens representanter,
samt personal från dagverksamhet, fungerar även som sk. anhörigombud i
kommunen.
I programmet för 2009 erbjuds allt från sopplunch och syjunta/stickjunta till
närståendeträffar och föreläsningar/studiecirklar om stroke och demens. Våren
2009 hade anhörigcentret kontakt med strax över hundratalet anhörigvårdare, en
viss ökning från tiden för ovan nämnda kartläggning. En stor del av kontakterna
sker per telefon och med många av anhörigvårdarna är kontakten bara sporadisk.
Utöver anhörigcentrets verksamhet erbjuds stöd till anhörigvårdare främst genom
avlösning. Avlösningen ges genom dagverksamhet, korttidsboende och hemtjänst.
De intervjuade är alla nöjda med den verksamhet som bedrivs vid anhörigcentret.
Personalen vid anhörigcentret och dagverksamheten Ljusglimten framstår som viktiga
kuggar i arbetet med anhörigstöd i kommunen. Visst missnöje finns däremot med
hemtjänsten som enligt några av de intervjuade behöver bli mer flexibel och med
korttidsboendet som idag tycks inrymma personer med alltför skiftande
sjukdomsbild. Flera av de intervjuade påtalar en hos personalen (hemtjänst och
korttidsboende/särskilt boende) bristande förståelse för de problem såväl vårdtagare
som anhörigvårdare ställs inför. För att öka denna förståelse behövs utbildning och
information.

Anhörigstöd. Information till anhörig-, brukar- och patientorganisationer

Socialstyrelsen (2015)

Skriften vänder sig till ideella organisationer för anhöriga, brukare och patienter. Den kan ge stöd i att formulera och utveckla organisationens syn på anhörigstöd enligt 5 kap. 10 § socialtjänstlagen, vad bestämmelsen betyder för enskilda och hur man kan arbeta vidare för de anhörigas bästa.

Anhörigstödets grundpelare

Johansson, L. (2008)

Ett framgångsrikt anhörigstöd står på några viktiga grundpelare. En av dessa är att stödet tillför något positivt till både den anhörige och den demenssjuke. Det menar docent Lennarth Johansson.

Anhörigvård

Bergh, A. (1997)

Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.

Anhörigvård – arbete, ansvar, kärlek, försörjning

Sand A-B. (2002)

Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.

I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.

Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.

Anhörigvård [elektronisk resurs] : Arbete, ansvar, kärlek, försörjning

Sand, A.-B. M. (2006)

Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.

I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.

Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.

Anhörigvård [elektronisk resurs].

Bergh, A. (2005)

Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.

Anhörigvårdare – oorganiserad, oerkänd och oavlönad omsorgsresurs. Enkätstudie av närstående vårdgivare till parkinsonpatienter

Lökk, J. (2009)

Informella vårdgivare till kroniskt
sjuka personer utgörs i
stor utsträckning av oavlönade
närstående.
Dessa närstående upplever
en belastning och begränsning
i sin livssituation och
dåligt erkännande från omgivningen:
ju längre omsorgstid,
desto hög re belastning
inom vissa domäner.
Behovet av hemtjänst överstiger
den faktiskt erhållna
hjälpen.
Närstående är mer informerade
om sjukdomen vid längre
omsorgstid.
Samhället borde även beakta
närståendes roll vid planering
av vård och behandling
av kroniskt sjuka personer.

Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende

Josefsson, L. (2008)

Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.

Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende

Josefsson, L. (2008)

Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.

Anhörigvårdares hälsa

Erlingsson C, Magnusson L, Hanson E. (2010)

Att vara äldre anhörigvårdare kan innebära en svårbemästrad situation,
som tär på anhörigvårdarens hälsa och välbefinnande och som till och
med kan innebära en risk för ökad dödlighet. Den ibland alltför tunga
vårdbördan kan ha ett starkt negativ inverkan på anhörigvårdarens
hälsa pga. t.ex. stress, sömnlöshet, utmattning, depression, och oro.
Dock kan anhörigvårdandet också innebära glädje och tillfredsställelse.
Denna översikt baserar sig på information i 31 svenska vetenskapliga
artiklar om äldre anhörigvårdares hälsa.
De flesta artiklar belyser olika faktorer i vårdsituationen; t.ex. tillgänglighet
eller omfattning av anhörigvårdarens sociala nätverk, anhö-
rigvårdarens ekonomiska situation, ålder, kön, fysiska symtom, bemästringsstrategier,
tillfredsställelse, betydelsen av den sjukes diagnos
eller stödets utformning. Det framträder mycket tydligt i denna översikt
att det är bakom situationsfaktorer och handlingar som de kanske
starkaste, och oftast omedvetna, motivationselementen ligger; dvs.
anhörigvårdarens övertygelser och föreställningar. Föreställningarna,
tillsammans med upplevelserna, i synnerhet av ömsesidighet i vårdandet,
bildar ett levande dynamisk system som är unikt för varje individ
och familj.
Mest betydelsefullt är att eftersträva att hjälpa anhörigvårdare att
uppleva ömsesidighet i vårdandet och att försöka förstå anhörigvårdandet
så som det sker i ett kraftfält av föreställningar om varför och
hur man bör vårda den sjuke. Utan att vara medvetna om anhörigvårdarnas
egna föreställningar och upplevelser kommer vi – professionella,
anhörigvårdare, den sjuke, familjemedlemmar och vänner –
att treva i blindo när vi försöker hjälpa till.
Slutsatsen i denna rapport är att anhörigvårdares hälsa påverkas,
förbättras eller försämras, beroende på 1) anhörigvårdarens föreställningar
om anhörigvårdandet, 2) anhörigvårdarens upplevelse av öm-
~ 8 ~
sesidighet både i familjerelationer och i relationer med berörd personal,
och 3) om lämpliga stödinsatser finns tillgängliga.

Anknytning i förskolan. Vikten av trygghet för lek och lärande

Broberg, M., Hagström, B. & Broberg, A. (2012)

Anknytning i förskolan är en bok som visar att trygga relationer är en förutsättning för lärande, särskilt för små barn. Barn som utvecklat en trygg anknytning till minst en vuxen på förskolan litar på att de blir tröstade när behov uppstår – de kan då slappna av och ägna sig åt lek och utforskande.

Denna bok ger en grund i anknytningsteori och författarna visar med många exempel hur denna kunskap kan användas i förskolans vardag: vid inskolning, hämtning, samling, lek och vila.

Anknytning i förskolan är skriven för blivande och verksamma förskollärare och pedagoger som arbetar med de yngsta barnen i förskolan.

Anknytning i praktiken: Tillämpningar av anknytningsteorin

BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T. (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter

Extramaterial finns på bokens hemsida www.nok.se/anknytning.

Anknytning i praktiken: Tillämpningar av anknytningsteorin

BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T. (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter

Extramaterial finns på bokens hemsida www.nok.se/anknytning.

Anknytning i praktiken: tillämpningar av anknytningsteorin.

Broberg, Anders, Risholm-Mothander, Pia, Granqvist, Pehr, Ivarsson, Thord (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den
viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Anknytningsteori: Betydelsen av nära känslomässiga relationer

BROBERG, A., GRANQVIST, P., IVARSSON, T. & RISHOLM, M., P. (2006)

I denna första breda kursbok på svenska ges en heltäckande presentation av anknytningsteorin.

Ur innehållet:

Evolution och anknytning

Separation och anknytning

Betydelsen av förälderns lyhördhet i samspelet

Äldre barns och vuxnas nära känslomässiga relationer

Barnets biologiska förutsättningar och hur de påverkar anknytningsrelationen.

Anknytningsteori (del 1) riktar sig till studenter och verksamma inom psykologi och psykiatri, samt barn- och ungdomsrelaterade yrken och utbildningar. Författarna kommer också hösten 2007 ut med Anknytning i praktiken, där de presenterar praktiska och kliniska tillämpningar med anknytningsteoretisk grund.
(Seelig)

Annas oroliga mamma. En berättelse om ångestsyndrom

Jessica Hjert (2014)

"Annas mamma har en sjukdom som gör att hon alltid är rädd, men Anna förstår inte alls varför. Hon är inte ens rädd för riktiga saker, som ormar, spindlar och sådant. Nej, hon är mest rädd för saker som inte finns eller sådant som inte ens hänt. "I boken får du följa Anna och hennes mamma Eva som har en ångestsjukdom. På ett enkelt sätt får du och ditt barn genom denna berättelse lära er mer om ångestproblematik. Barn och förälder kan tillsammans läsa boken för att diskutera kring rädsla, oro och ångest. Kanske blir boken en naturlig ingång till att presentera sina egna eller en anhörigs problem? Boken kan även användas som högläsning i grupp.Jessica Hjert är beteendevetare med en kandidatexamen i psykologi. Hon har tidigare gett ut "Måste alla vara så jävla lyckliga hela tiden -Svårigheterna föräldrar inte talar om."

Annas pappa får rättspsykiatrisk vård

Alphonce, Elisabet (2011)

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

Här får vi en beskrivning hur det kan bli när en förälder blir intagen för rättspsykiatrisk vård. 

Annorlunda syskon – syskon med funktionshinder

Blomgren, Frida., Wanker, Maria (2010)

Att växa upp med ett funktionshindrat syskon

Annorlunda syskon handlar om hur det kan vara att växa upp med ett funktionshindrat syskon. Om svårigheter och glädjeämnen och hur det kan prägla de friska barnen.

Boken bygger på intervjuer med nio vuxna syskon där författaren Frida Blomgren har utgått ifrån tio frågeställningar, en för varje kapitel. Det som främst slår en är hur mycket de olika syskonen har gemensamt, både egenskaper och erfarenheter, trots att deras familjer och hemförhållanden har sett olika ut.

Många berättelser handlar om den oro för sjukdom som fanns under barndomen. När syskonen blir äldre finns också tanken på att den dag föräldrarna inte längre orkar eller är kvar i livet, kommer ansvaret att läggas på det friska syskonet. Samtidigt har många nära till glädje och de har lärt sig att inte oroa sig i onödan utan att leva i nuet.

Another Chance Hope and Health for the Alcoholic Family

Wegscheider, S. (1986)

The second edition of this classic work on recovery for alcohol families updates and expands the original, which won a Marty Mann Award as an outstanding contribution on alcohol communications. The first ten chapters of Another Chance pull the curtain back on the alcoholic family. We meet its cast of characters: the Dependent, the Enabler, the Hero, the Scapegoat, the Lost Child, the Mascot. The author then spells out a treatment plan for halting the downward spital of alcoholism -- a powerful blend of the Twelve Steps pioneered by Alcoholics Anonymous, the Family Reconstruction process developed by Virginia Satir, Wegscheider-Cruse's innovative and eclectic approach to therapy, and her own recovery from co-dependency. The second edition also addresses adult children of alcoholics, sprituality, and co-dependent therapists.

Ansvar, kärlek och försörjning. Om anställda anhörigvårdare i Sverige.

Mossberg Sand, A-B. (2000)

Avhandling

In Sweden the municipalities have the responsibility to provide the elderly, ill and disabled with the assistance they need to make home living possible. Still, most caring takes place in the family and is performed by relatives. Sometimes a relative carer can be employed and paid by the municipality to perform the help. The aim of this study is to explore the situation of employed family carers. Another purpose has been to investigate how responsibility and work are distributed between society and kin care providers. The results are based upon a project containing four partial studies; a survey investigation based on a random sample with replies from 1197 relative care providers in Sweden representing one fifth of all employed carers at the time. This was followed by an interview study comprising 40 relative care providers and care recipients. The other two partial studies were targeted at social and elderly care management and home-help service assistants respectively. The carers are made up ofthree main groups ;children, spouses and parents. There is also a smaller group with siblings, daughters-in-law, other relatives and friends. The main part ofthe kin care providers consists ofwomen, but 15 percent are men. The clas s status is principally that ofworkers and lower civil servants, although all social classes are represented. Apparently, it is not easy to combine care for relatives with a full effort in the regular labour market. Despite the fact that most women were working part-time, it was sometimes problematic to combine shorter hours with the caring. Thanks to the salary, the majority of the kin care providers have not suffered any economic losses. Apart from the bread-winning aspect, the salary has another important significance - even though the monetary sUll at times is extremely small, it is regarded as recognition of the work. One conclusion, which can be drawn from this investigation, is that the employment and salary are a very appreciated form of support. The salary is a replacement for a work effort, and it has also provided the possibility to quit or reduce other work in order to perform the care. The majority of the kin care providers are content, although many ofthem want better employment terms and higher wages - or rather conditions which correspond to other care work, and a salary which corresponds to the effort. As far as the division between the society and the kin care providers is concerned, it can be said that a lot of the re.sponsibility and work lies with the relatives. Some relatives do not want too much societal intervention, but settle with monetary replacement. Others have apparent needs of assistance, and a working situation which is inhumane. In some cases, it even amounts to a societal abuse of people's responsibility for their relatives.

Anticipated support from neighbors and physical functioning during later life

Shaw, B. A. (2005)

This study has two main objectives: (1) to assess age variations in perceived support from neighbors among a nationally representative sample of adults aged 25 to 74 and (2) to examine the association between anticipated support from neighbors and physical functioning within a subsample of older adults. The findings suggest that anticipated support from neighbors is stronger among older adults, primarily because of more frequent contact with neighbors and residential stability. Within the older subsample, an inverse association between perceived support from neighbors and functional limitations is evident. Further analyses show that this association is strongest among those with infrequent contact with family members. No differences in this association were found with respect to marital status. Taken together, it appears that anticipated support from neighbors facilitates the maintenance of functional ability among some older adults. Interventions aiming to promote successful aging by enhancing this source of support should be developed and evaluated.

A desire to be seen: family caregivers' experiences of their caring role in palliative home care

Linderholm, M., & Friedrichsen, M. (2010)

Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

A dispositional and situational assessment of children’s coping: Testing alternative models of coping

Ayers, T.S., Sandler, I.N., West, S.G. & Roosa, M.W. (1996)

ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.

A family perspective for substance abuse: implications from the literature

Gruber KJ, Taylor MF (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.

A family perspective for substance abuse: implications from the literature.

Gruber KJ, Taylor MF. (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
Keywords: family | substance abuse | family functioning | parental alcohol use | parental drug
use | substance abuse research

A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder

Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R. (2002)

The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.

A functional analysis of resistance during parent training therapy

Patterson, G., & Chamberlain, P. (1994)

A decade of programmatic studies of resistance during parent training therapy is reviewed, including a brief description of a procedure developed for coding resistant behavior. Analyses of sequential interactions during treatment show that therapists' efforts to intervene produced immediate parental resistance. From baseline to midtreatment phases, there were increases in the therapists' efforts to intervene, which were in turn accompanied by Increases in parental resistance. Contextual variables such as parent pathology also correlated with higher levels of resistance. Decreases in resistance were associated with improvements in parental discipline practices. Parental resistance altered the behavior of the therapists, reducing their effectiveness. A regression analysis shows that improvements in discipline predicted fewer future arrests and out-of-home placement.

A future for family care and dementia intervention research? Challenges and strategies

Zarit SH, Femia EE. (2008)

Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.

A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device

Valiquette, C., Sutton, A., & Ska, B. (2010)

This article reports on the views of individuals with learning disability (LD) on their use of their speech generating devices (SGDs), their satisfaction about their communication, and their priorities. The development of an interview tool made of graphic symbols and entitled Communication, Satisfaction and Priorities of SGD Users (CSPU) is described in detail. The tool was used to support comprehension and to elicit the opinions of eight individuals with LD who had severe communication disorders. Most participants reported that they did not use their SGDs in situations in which they needed them in order to communicate effectively. The participants' parents corroborated these statements but they identified priorities that were different from their child's. The results emphasize the necessity of permitting individuals with severe communication disorders to take part in decision-making by indicating their satisfaction and priorities for intervention. Methodological issues and future use of the evaluation tool in research and in clinical settings are discussed.

A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability

Harrison, T. C. & Stuifbergen, A. (2005)

In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.

A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives

Kuh, D., & Ben-Shlomo, Y. (2002)

Over the last few years there has been increasing interest in conceptualizing disease aetiology within a life course framework.1,,2 This approach is not new to Public Health or unique to epidemiology (see below). However, its current resonance and interest within epidemiology reflects the challenging theoretical framework this approach provides. This issue of the International Journal of Epidemiology has several papers with a 'life course theme'. This accompanying editorial is intended to highlight what we believe are the key conceptual issues around life course epidemiology. We have chosen to use examples from chronic disease epidemiology, but this approach is also applicable within the context of infectious diseases3 and wider notions of health and wellbeing.4

We have defined a life course approach to chronic disease epidemiology1 as the study of long-term effects on chronic disease risk of physical and social exposures during gestation, childhood, adolescence, young adulthood and later adult life. It includes studies of the biological, behavioural and psychosocial pathways that operate across an individual's life course, as well as across generations, to influence the development of chronic diseases.

A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.

Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF. (2013)

Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.

A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.

Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF. (2013)

Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.

A qualitative study of older informal carers´ experiences and perceptions of their caring role

Nan Greenwood, Carole Pound, Sally Brearley, Raymond Smith (2019)

Abstract
Background and aims
Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role.

Methods
Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically.

Findings
Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death.

Conclusions
Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.

A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service

Lilley SA, Lincoln NB, Francis VM. (2003)

Objective: To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

A randomized controlled trial evaluating the effect of a support and education programme for spouses of people affected by stroke.

Franzen-Dahlin A, Larson J, Murray V, Wredling R, Billing E. (2008)

OBJECTIVE:
To determine whether a nurse-led support and education programme for spouses of patients affected by stroke improved the psychological health of the spouses.
DESIGN:
A longitudinal, open, randomized controlled trial.
SAMPLE:
One hundred spouses of stroke patients were randomly assigned to either an intervention or a control group.
SETTING:
The study was conducted in a hospital setting.
INTERVENTION:
The intervention consisted of six group meetings during six months, with a follow-up after further six months. Comparison between the intervention and the control groups was made at baseline, after six and 12 months using analysis with repeated measures.
MAIN MEASURES:
The Comprehensive Psychopathological Rating Scale--Self-Affective for psychological health.
RESULTS:
No significant difference was found between the intervention and control groups concerning overall psychological health. However, a subanalysis revealed that those who participated more frequently in the group meetings (five or six times) had significantly stronger psychological health (P<0.05). Knowledge about stroke increased over time in both groups, but participants in the intervention group learned more (P=0.041).
CONCLUSION:
Encouraging participation in the group meetings of a support programme might have a positive effect on psychological health.

A randomized controlled trial evaluating the effect of a support end education programme for spouses of people affected by stroke

Franzén-Dahlin, Å., Larson, J., Murray, V., Wredling, R., & Billing, E. (2008)

Objective: To determine whether a nurse-led support and education programme for
spouses of patients affected by stroke improved the psychological health of the
spouses.
Design: A longitudinal, open, randomized controlled trial.
Sample: One hundred spouses of stroke patients were randomly assigned to either
an intervention or a control group.
Setting: The study was conducted in a hospital setting.
Intervention: The intervention consisted of six group meetings during six months,
with a follow-up after further six months. Comparison between the intervention and
the control groups was made at baseline, after six and 12 months using analysis with
repeated measures.
Main measures: The Comprehensive Psychopathological Rating Scale –
Self-Affective for psychological health.
Results: No significant difference was found between the intervention and control
groups concerning overall psychological health. However, a subanalysis revealed that
those who participated more frequently in the group meetings (five or six times) had
significantly stronger psychological health (P50.05). Knowledge about stroke
increased over time in both groups, but participants in the intervention group learned
more (P ¼ 0.041).
Conclusion: Encouraging participation in the group meetings of a support
programme might have a positive effect on psychological health.

A randomized controlled trial of CBT therapy for adults with ADHD with and without medication

Weiss, M., Murray, C., Wasdell, M., Greenfield, B., Giles, L., & Hechtman, L. (2012)

Background
Previous studies of psychological treatment in adults with ADHD have not controlled for medication status and include either medicated participants or mixed samples of medicated and unmedicated participants. The objective of this study is to examine whether use of medication improves outcome of therapy.

Method
This was a secondary analysis comparing 23 participants randomized to CBT and Dextroamphetamine vs. 25 participants randomized to CBT and placebo. Both patients and investigators were blind to treatment assignment. Two co-primary outcomes were used: ADHD symptoms on the ADHD-RS-Inv completed by the investigator and improvement in functioning as reported by the patient on the Sheehan Disability Scale.

Results
Both groups showed robust improvement in both symptoms and functioning, but the use of medication did not significantly improve outcome over and above use of CBT and placebo.

Conclusion
This study replicates previous work demonstrating that CBT is an effective treatment for ADHD in adults. Within the limits of this pilot, secondary analysis we were not able to demonstrate that medication significantly augments the outcome of CBT therapy for adults with ADHD. The study was funded by GlaxoSmithKline, Clinical Trials Registry #GSK707.

A Randomized Controlled Trial of Mother- Infant Psychoanalytic Treatment: I. Outcomes on Self-Report Questionnaires and External Ratings

SALOMONSSON, B. & SANDELL, R. (2011)

Mother-infant relationship disturbances occur in three domains: maternal distress, infant functional problems, and relationship difficulties. They constitute common clinical problems. In Sweden, they are usually handled by nurses as part of public Child Health Centre care. Severe cases are referred to child psychiatry services. This randomized controlled trial compared two groups of mother-infant dyads in a Stockholm sample. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Eighty dyads of mothers and infants under 1½ years of age where the mothers had serious concerns about themselves in their role as mothers, their infants' well-being, or the mother-baby relationship were randomly selected for either the MIP or the CHCC group. The primary outcomes were mother-reported depression, mother-reported infant functional problems, and interviewer-based relationship assessments, all at 6 months after joining the project. Secondary outcomes were mother-reported stress and general psychic distress, externally rated video-recorded interactions, and the consumption of healthcare at the CHC, again all after 6 months. Intent-to-treat analyses of Treatment × Time effects significantly favored MIP treatment for maternal depression, mother-infant relationships, and maternal sensitivity. Effects were nearly significant on maternal stress, but nonsignificant on mother-reported infant functional problems, general psychic distress, maternal interactive structuring and nonintrusiveness, infant responsiveness and involvement, and healthcare consumption. MIP treatment improved mother-infant relationships and maternal sensitivity and depression, all of which are known to influence child development. If effects persist and are reproduced, MIP treatment holds promise for more widespread use.

A randomized controlled trial of motherinfant psychoanalytic treatment: II. Predictive and moderating influences of qualitative patient factors

SALOMONSSON, B. & SANDELL, R. (2011)

A randomized control trial was performed on 75 dyads in Stockholm, Sweden, with infants under 1½ years. It recruited mothers who worried about the babies, themselves as mothers, and/or the mother-baby relationship. Two groups of mother-infant dyads were compared. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Significant treatment effects were found on mother-reported depression, interviewer-rated dyadic relationship qualities and externally rated maternal sensitivity, and near-significant effects on mother-reported stress, all in favor of MIP. The objective of this study is to investigate the predictive and moderating influences on outcomes by qualitatively assessed maternal and infant characteristics. The qualitative factors covered maternal suitability for psychoanalysis, and "ideal types" of mother and child, respectively. Outcome measures from two interviews with a 6-month interval were depression (Edinburgh Postnatal Depression Scale (J. Cox, J. Holden, & R. Sagovsky, 1987), stress (Swedish Parental Stress Questionnaire (M. Östberg, B. Hagekull, & S. Wettergren, 1997), distress (Swedish Symptom Checklist-90 (SCL-90; L.R. Derogatis, 1994; M. Fridell, Z. Cesarec, M. Johansson, & S. Malling Thorsen, 2002) and infant social and emotional functioning (Ages and Stages Questionnaire: Social-Emotional (J. Squires, D. Bricker, K. Heo, & E. Twombly, 2002), relationship qualities (Parent-Infant Global Assessment Scale (PIR-GAS; ZERO TO THREE, 2005), and videotaped interactions (Emotional Availability Scales, Z. Biringen, J.L. Robinson, & R.N. Emde, 1998). Suitability for psychoanalysis predicted outcome only on the PIR-GAS. Two overarching maternal ideal types were created, reflecting their attitude to the psychoanalytic process: "Participators" and "Abandoned." The Participators benefited more from MIP than they did from CHCC on maternal interactive sensitivity. A contrasting, but nonsignificant, pattern was found among the Abandoned mothers. Two ideal types of babies emerged: those "Affected" and "Unaffected" by the disturbance, respectively. Among Affected babies, dyadic relationships and sensitivity among their mothers improved significantly more from MIP than they did from CHCC. The superior effects of MIP applied especially to Participator mothers and Affected infants. For Abandoned mothers and Unaffected infants, CHCC seemed to be of equal value.

A randomized pilot study of the engaging moms program for family drug court

Dakof GA, Cohen JB, Henderson CE, Duarte E, Boustani M, Blackburn A, et al. (2010)

In response to the need for effective drug court interventions, the effectiveness of the Engaging Moms Program (EMP) versus Intensive Case Management Services (ICMS) on multiple outcomes for mothers enrolled in family drug court was investigated. In this intent-to-treat study, mothers (N = 62) were randomly assigned to either usual drug court care or the Engaging Moms drug court program. Mothers were assessed at intake and 3, 6, 12, and 18 months following intake. Results indicated that at 18 months post drug court enrollment, 77% of mothers assigned to EMP versus 55% of mothers assigned to ICMS had positive child welfare dispositions. There were statistically significant time effects for both intervention groups on multiple outcomes including substance use, mental health, parenting practices, and family functioning. EMP showed equal or better improvement than ICMS on all outcomes. The results suggest that EMP in family drug court is a viable and promising intervention approach to reduce maternal addiction and child maltreatment.

A randomized trial of family focused treatment for adolescents and young adults at risk for psychosis: study rationale, design and methods

Schlosser DA, Miklowitz DJ, O'Brien MP, De Silva SD, Zinberg JL, Cannon TD. (2012)

This article outlines the rationale for a family-focused psychoeducational intervention for individuals at risk for psychosis and explains the design of a randomized multisite trial to test its efficacy. Adolescents and young adults that meet criteria for a psychosis risk syndrome at eight participating North American Prodromal Longitudinal Study sites are randomly assigned to a 6-month, 18-session family-focused treatment for prodromal youth or a 3-session psychoeducational enhanced care control intervention and followed over 1 year. The results will determine whether the use of a family intervention is able to significantly improve functional outcomes, decrease the severity of positive symptoms and possibly prevent the onset of full psychosis, compared with enhanced care alone. Levels of familial criticism at baseline are hypothesized to moderate responses to family intervention. Improvements in knowledge about symptoms, family communication and problem solving will be tested as mediators in the pathways between treatment assignment and clinical or psychosocial outcomes in high-risk youth. The ongoing trial evaluates whether a non-invasive psychosocial approach can significantly enhance functional outcomes and prevent the ultra high risk patients from developing psychosis. The results will provide an important stepping stone in the movement of the field from refining early detection strategies to developing efficacious preventative treatments.

A randomized trial to evaluate an education programme for patients and carers after stroke

Smith J, Forster A, Young J. (2004)

Objectives: To evaluate the effectiveness of an education programme for patients and carers recovering from stroke.
Design: Randomized controlled trial.
Subjects and setting: One hundred and seventy patients admitted to a stroke rehabilitation unit and 97 carers of these patients.
Interventions: The intervention group received a specifically designed stroke information manual and were invited to attend education meetings every two weeks with members of their multidisciplinary team. The control group received usual practice.
Measures: Primary outcome was knowledge of stroke and stroke services. Secondary outcomes were handicap (London Handicap Scale), physical function (Barthel Index), social function (Frenchay Activities Index), mood (Hospital Anxiety and Depression Scale) and satisfaction (Pound Scale). Carer mood was measured by the General Health Questionnaire-28.
Results: There was no statistical evidence for a treatment effect on knowledge but there were trends that favoured the intervention. The education programme was associated with a significantly greater reduction in patient anxiety score at both three months (p=0.034) and six months (p=0.021) and consequently fewer 'cases' (Hospital Anxiety and Depression Scale anxiety subscale score ≥ 11). There were no other significant statistical differences between the patient or carer groups for other outcomes, although there were trends in favour of the education programme.
Conclusion: An education programme delivered within a stroke unit did not result in improved knowledge about stroke and stroke services but there was a significant reduction in patient anxiety at six months post stroke onset.

A responsibility that never rests – the life situation of a family caregiver to an older person

Jarling Aleksandra, Rydström Ingela, Ernsth-Bravell Marie, Nyström Maria, Dalheim-Englund Ann-Charlotte (2019)

Abstract [en]
Background
When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life.

Aim
This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home.

Methods

In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process.

Findings
In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships.

Conclusion
A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

A review of policies on alcohol use during pregnancy in Australia and other English-speaking countries, 2006

O’Leary, CM:, Heuzenroeder, L., Elliott, E.J. & Bower, C. (2007)

It is well accepted that heavy alcohol consumption during pregnancy is a risk factor for fetal alcohol spectrum disorder, but research findings for exposure to low to moderate alcohol levels during pregnancy are equivocal, allowing a range of interpretations. The 2001 guideline from the National Health and Medical Research Council (NHMRC) for low-risk drinking for "women who are pregnant or might soon become pregnant" recommends fewer than seven standard drinks per week, and no more than two standard drinks on any one day. This position has polarised health professional and consumer opinion in Australia. The NHMRC guidelines on alcohol are scheduled for review in 2007. We surveyed the alcohol and pregnancy policies and clinical practice guidelines of Australia and six other English-speaking countries to identify current policy. Documents were obtained through Internet searches and direct contact with the relevant organisations. The policies and guidelines varied both across and within countries, and the NHMRC guideline, while not universally supported in Australia, is in step with the policies of the United Kingdom and Canada. Research is needed to elucidate the true association between low to moderate alcohol consumption and fetal harm, the impact of different policies on rates of maternal alcohol consumption during pregnancy, and any untoward outcomes of an abstinence message, to inform and underpin future policy development in Australia.

A review of programs to alleviate the burden of informal caregivers of dependent persons.

Garces, J., Carretero, S., Rodenas, F., & Aleman, C. (2010)

The review of interventions currently available to alleviate the burden of informal caregivers of dependent persons has both social and political relevance considering the increasing number of elderly dependent persons. Respite services and programs for psycho-social intervention are the main methods of dealing with this burden. Study of the main research carried out to date on such interventions enables us to organize more efficient services, especially considering the enactment of the Law on Dependence in Spain in January 2007 and the need for other European and international governments to establish systems to meet the needs of the growing dependent population.

A Semiotic Perspective for AAC

Soto, G. och Olmstead, W. (1993)

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

A Semiotic Perspective for AAC

Soto, G. och Olmstead, W. (1993)

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project

Carlsson ME (2014)

OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project

Carlsson ME (2014)

OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.

A small-scale randomized controlled trial of the revised new forest parenting programme for preschoolers with attention deficit hyperactivity disorder

Thompson, M. J. J., Laver-Bradbury, C., Ayres, M., Le Poidevin, E., Mead, S., Dodds, C., … Sonuga-Barke, E. J. S. (2009)

The revised new forest parenting programme (NFPP) is an 8-week psychological intervention designed to treat ADHD in preschool children by targeting, amongst other things, both underlying impairments in self-regulation and the quality of mother-child interactions. Forty-one children were randomized to either the revised NFPP or treatment as usual conditions. Outcomes were ADHD and ODD symptoms measured using questionnaires and direct observation, mothers' mental health and the quality of mother-child interactions. Effects of the revised NFPP on ADHD symptoms were large (effect size >1) and significant and effects persisted for 9 weeks post-intervention. Effects on ODD symptoms were less marked. There were no improvements in maternal mental health or parenting behavior during mother-child interaction although there was a drop in mothers' negative and an increase in their positive comments during a 5-min speech sample. The small-scale trial, although limited in power and generalizability, provides support for the efficacy of the revised NFPP. The findings need to be replicated in a larger more diverse sample.

A smartphone-based fall detection system

Abbate S, Avvenuti M, Bonatesta F, Cola G, Corsini P, Vecchio A. (2012)

Falls are a major cause of injuries and hospital admissions among elderly people. Thus, the caregiving process and the quality of life of older adults can be improved by adopting systems for the automatic detection of falls. This paper presents a smartphone-based fall detection system that monitors the movements of patients, recognizes a fall, and automatically sends a request for help to the caregivers. To reduce the problem of false alarms, the system includes novel techniques for the recognition of those activities of daily living that could be erroneously mis-detected as falls (such as sitting on a sofa or lying on a bed). To limit the intrusiveness of the system, a small external sensing unit can also be used for the acquisition of movement data.

A study of the family burden of 150 family members of schizophrenic patients

Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J. (2004)

Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatric. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A support group programme for relatives during the late palliative phase

Henriksson, A. and B. Andershed (2007)

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

A systematic and methodological review of interventions for young people experiencing alcohol-related harm

Calabria B, Shakeshaft AP, Havard A. (2011)

Aims This review identified published studies evaluating interventions delivered outside educational settings, designed for young people with existing alcohol use problems, or who participate in behaviour that places them at high risk of alcohol-related harm, critiqued their methodology and identified opportunities for new interventions.

Methods A systematic search of the peer-reviewed literature interrogated 10 electronic databases using specific search strings, limited to 2005–09. No additional studies were found by a librarian searching other collections and clearing-houses, or by hand-searching review paper reference lists. The 1697 articles identified were reviewed against criteria from the Dictionary for the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies.

Results The methodological quality of existing studies is variable, and needs to be both more rigorous and more consistent. Particular problems include the lack of blinding outcome assessors, a reliance solely on self-report measures, highly variable consent and follow-up rates, infrequent use of intention-to-treat analyses and the absence of any economic or cost analyses. The range of interventions evaluated is currently limited to individually focused approaches, almost exclusively implemented in the United States.

Conclusions There is a great need for more intervention trials for young people at high risk of experiencing alcohol-related harm that are both methodologically rigorous and have a broader community focus, to complement the psychological interventions that currently dominate the relevant literature. Such trials would improve outcomes for high-risk young people themselves and would improve the evidence base, both in their own right and by facilitating future meta-analyses.

A systematic review of internet-based self-management interventions for youth with health conditions

Stinson, J., Wilson, R., Gill, N., Yamada, J., & Holt, J. (2009)

Abstract
OBJECTIVE:
Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions.
METHODS:
Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis.
RESULTS:
While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization.
CONCLUSIONS:
There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.

A systematic review of parenting in relation to the development of comorbidities and functional impairments in children with Attention-Deficit/ Hyperactivity Disorder (ADHD).

Deault, L. C. (2010)

This review synthesizes recent research evidence regarding the parenting characteristics associated with families with children with Attention-Deficit/Hyperactivity Disorder (ADHD). ADHD is a complex, heterogeneous disorder with a range of genetic and environmental factors that contribute to its behavioral expression and different developmental trajectories. The current review adopts a developmental psychopathology perspective to conceptualize the risk and protective factors that might shape the developmental pathways of the disorder across different domains. Following from Johnston and Mash's review (Johnston and Mash, Clin Child Fam Psychol Rev 4:183-207, 2001), the present review systematically examines empirical studies from 2000-2008 that investigate parenting variables in relation to the development of children with ADHD, with a particular focus on the development of externalizing and internalizing comorbidities, as well as functional impairments in academic and social contexts. The most recent research evidence uses correlational designs to show that ADHD is associated with problematic family functioning, including greater stress within the family, higher rates of parental psychopathology and conflicted parent-child relationships, which appears to be exacerbated in children with comorbid oppositional and conduct problems. However, there is an absence of literature that considers the role that parents play in contributing to children's development in areas such as academic achievement and peer competence, as well as the development of internalizing difficulties. Future research should examine family factors that are associated with resilience in children with ADHD, using longitudinal designs that reflect the dynamic changes associated with a developmental psychopathology framework.

A therapeutic summer weekend camp for grieving children: supporting clinical practice through empirical evaluation

Farber, M.L.Z. & Sabatino, C.A. (2007)

Through collaborative action-oriented community research, agency-based clinicians, and university-based researchers engaged in a two-year theory-driven evaluation of a therapeutic summer camp for grieving children. The evaluation examined the camp practice model and children's engagement in therapeutic camp activities and psychosocial functioning based on the camp staff and parental caregivers' assessments. The first year findings led to a synergistic decision-making process that strengthened one of camp therapeutic activities. The overall results reveal a high consistency among staff on assessments of engagement and psychosocial functioning, and parental caregivers' satisfaction with the camp. Limitations of research evaluation and implications for practice are considered.

A typology of caregiving situations and service use in family carers of older people in six European countries: The EUROFAMCARE study

Di Rosa M, Kofahl C, McKee K, Bień B, Lamura G, Prouskas C, et al. (2011)

This paper presents the EUROFAMCARE study findings, examining a typology of care situations for family carers of older people, and the interplay of carers with social and health services. Despite the complexity of family caregiving situations across Europe, our analyses determined the existence of seven "caregiving situations," varying on a range of critical indicators. Our study also describes the availability and use of different support services for carers and care receivers, and carers' preferences for the characteristics of support services. Our findings have relevance for policy initiatives in Europe, where limited resources need to be more equitably distributed and services should be targeted to caregiving situations reflecting the greatest need, and organized to reflect the preferences of family carers.

A World of Their Own Making:Myth Ritual and the Quest for Family Values

Gillis, J. (1996)

Our whole society may be obsessed with "family values," but as John Gillis points out in this entertaining and eye-opening book, most of our images of "home sweet home" are of very recent vintage. A World of Their Own Making questions our idealized notion of "The Family," a mind-set in which myth and symbol still hold sway. As the families we live with become more fragile, the symbolic families we live by become more powerful. Yet it is only by accepting the notion that our ritual, myths, and images must be open to perpetual revision that we can satisfy our human needs and changing circumstances.

AAC and literacy

Hetzroni, O. E. (2004)

Purpose: To review current research on the use of augmentative and alternative communication (AAC) for prompting literacy in children with special educational needs. Method: Research studies relevant to emergent literacy and AAC use are reviewed. Studies focused on acquisition of literacy across various populations of children with special needs are reviewed. Results: Existing literature suggests that AAC may provide strategies and systems to compensate for impairments and disabilities of individuals with severe communication disorders. Conclusion: AAC may support literacy learning in children with special educational needs.

AAC and Scripting Activities to Facilitate Communication and Play

Taylor, R. and T. Iacono (2003)

Many children with developmental disability have limited skills in both play and communication. In this study, the effects of a naturalistic intervention approach to play and symbolic communication was investigated within a single-subject multiple baseline design. The intervention involved scripting play activities and modelling vocabulary in speech and the augmentative and alternative communication (AAC) modality of sign. An additional intervention phase was introduced, wherein the AAC intervention was expanded to include an electronic communication device. The results indicated that modelling and scripted play activities resulted in increases in symbolic play, while changes in types of functional play were evident, while its frequency was somewhat erratic across baseline and intervention phases. Improvements in communication were more evident when a multimodal AAC approach was used in modelling than when sign was used alone. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

ABC for Parents: Pilot Study of a Universal 4-Session Program Shows Increased Parenting Skills, Self-efficacy and Child Well-Being.

Enebrink, P., Danneman, M., Benvestito Mattsson, V., Ulfsdotter, M., Jalling, C., & Lindberg, L. (2014)

The aim of the present pilot study was to provide an initial evaluation of a brief, 4-session, universal health promoting parenting group program, the "ABC". We examined the effects of the program on improving parental strategies, parental self-efficacy, and child well-being. We also hypothesized that in a health promoting intervention implemented in the general population, increased parental self-efficacy and parental strategies would be associated with improvements in child well-being after 4 months. Parents living in 11 municipalities and local community agencies in Sweden enrolled in the project were invited to participate in the study. A repeated measurement within group design was used to assess the effects. In total, parents of 104 children aged 2–12 years participated in the ABC-study. Parental and child outcomes were evaluated before, after the intervention, and at a 4-month follow-up with parental self-report questionnaires. Paired t tests and ANOVA repeated measures showed statistically significant improvements of parental strategies (showing guidance, empathy/understanding, having rules/boundaries), parental self-efficacy (self-competence, knowledge/experience), and child well-being (emotional well-being, independence) from pre- to post measurement, with small to moderate effect sizes. Improvements were maintained at the 4-month follow-up, apart from changes in parental knowledge. University education and increased pre- to post improvements in self-efficacy predicted child emotional well-being at the 4-month follow-up. The findings suggest that the ABC-group intervention was effective in terms of improving child well-being, parental strategies and self-efficacy. This pilot study provides promising evidence for the ABC as a universal parenting program but further more rigorous evaluations are needed.

Acceptable and unacceptable risk: balancing every day risk by family members by older cognitively impaired adults who live alone

Cott S, Tierny M (2013)

Abstract
For individuals providing care for older people the issue of risk is a well-established concern, especially in the context of the older person's declining functional abilities and cognitive skills. Recently in expert discussions of health care, the issue of risk has been subsumed under the discourse of patient safety with the assumption that risk is intrinsic to certain situations and therefore can be measured by professionals and ultimately prevented. Less attention has been paid to the risk perceptions of older persons and their families and friends. We undertook the study on which this article is based in Toronto, Ontario, Canada between 2005 and 2007. We used grounded theory to identify the process whereby family and friends recognise and balance risk of older persons with cognitive impairment who live alone. Twenty pairs of older adults with cognitive impairment and their primary family members or friends were interviewed using in-depth, semi-structured interviews. The model of acceptable and unacceptable risk began with family members' perceptions that the older person was living with an acceptable level of risk, but then noticing red flags that eventually led to the perception of unacceptable risk. They employed risk-balancing strategies such as making changes in the physical environment, increasing surveillance, becoming more involved in the older person's care or redefining their definitions of acceptable risk in order to return the perceived risk to an acceptable level. Meanings of risk were constantly redefined as new situations arose and risk-balancing strategies were implemented. Throughout family members constantly balanced the risks of physical harm with the risks of undermining the older person's independence and self-esteem.

Access to AAC: Present, past, and future

Higginbotham, D. J., Shane, H., Russell, S., & Caves, K. (2007)

Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.

Access to AAC: Present, past, and future.

Higginbotham, D. J., Shane, H., Russell, S., & Caves, K. (2007)

Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.

Access to augmentative and alternative communication: New technologies and clinical decision-making

Fager, S., Bardach, L., Russell, S., & Higginbotham, J. (2012)

Children with severe physical impairments require a variety of access options to augmentative and alternative communication (AAC) and computer technology. Access technologies have continued to develop, allowing children with severe motor control impairments greater independence and access to communication. This article will highlight new advances in access technology, including eye and head tracking, scanning, and access to mainstream technology, as well as discuss future advances. Considerations for clinical decision-making and implementation of these technologies will be presented along with case illustrations.

According to need? : Predicting use of formal and informal care in a Swedish urban elderly population

Larsson, K. (2004)

Avhandling

This dissertation studies factors that predict use of public eldercare, informal care, and purchase of private services in relation to an individual's needs, social network characteristics, and sociodemographic factors. A further purpose is to examine whether use of public eldercare is correlated to receipt of informal care and purchase of private services in the Swedish welfare state.The dissertation is based on the Kungsholmen Study, a population-based longitudinal study. Studies I–III used cross-sectional data from community-dwelling people aged 81-100 and examined (I) gender, (II) marital and parental status, and (III) dementia and depressive symptoms as predictors of use of home help. Study IV analyzed factors related to moving into institutional care and receipt of home help from 1994/96 to 2000.The majority of support provided to elders living in the community comes from informal sources, even among people living alone. There was considerable overlap between home help and informal care. When all sources of care were considered, childless individuals had comparatively lower odds of receiving care. Factors predicting use of public eldercare and informal care differed depending on whether or not elders coresided. No gender differences in use of formal and informal care were found when controlling for household composition. Living alone, dementia, need of help with household chores, and walking limitations increased the likelihood of using public eldercare. Coresidence, informal care from outside the household, and use of private services decreased the likelihood. Depressive symptoms increased the likelihood of receiving home help and institutionalization when using longitudinal data, but not in the cross-sectional studies. Educational level was of importance and interacted with several factors; persons with higher levels of education were advantaged. Very few people moved into institutional care without previously having received home help services. Essentially the same factors that predicted receipt of home help services also predicted institutionalization.

Action and embodiment within situated human interaction

Goodwin, C. (2000)

A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.

Action and embodiment within situated human interaction

Goodwin, C. (2000)

A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.

Action theory, disability and ICF

Nordenfelt L. (2003)

Purpose: The purpose of this paper is to make a critical analysis of the conceptual platform of the recently introduced International Classification of Functioning, Disability and Health (ICF). Special attention is paid to the suggested definitions of the concepts of activity and participation. My argument intends to show that these definitions are not coherent. Methods: The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinction between capacity and opportunity and shows that both concepts are applicable to all actions. Capacity and opportunity are distinguished from the actual performance of actions. The latter presupposes the existence of a will. On this conceptual basis follows an analysis of the distinction between activity and participation as conceived by the WHO in ICF. Conclusions: The main conclusion of my reasoning is that the notions of activity and participation in ICF partly rest on confusion between capacity for action and the actual performance of an action. If my conclusion is sound this has far-reaching consequences for the application of the ICF in the practice of rehabilitation. My diagnosis therefore is that the conceptual framework of ICF is in great need of a strict action – theoretic reconstruction.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams

Klarare A., Rasmussen BH., Fossum B., Hansson J., Fürst CJ., Lundh Hagelin C. (2018)

Abstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregiversexperienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Activity and participation in home rehabilitation: older people's and family members' perspectives

Randström KB, Kenneth A, Svedlund M, Paulson M. (2013)

Abstract
OBJECTIVE: To explore the experiences of older people and their supporting family members in relation to home rehabilitation, with a focus on activity and participation.
METHODS: Qualitative interviews were carried out with 6 older people and 6 family members at 1 and 6 months after the older person's discharge to their home. Qualitative content analysis of the data was carried out. The International Classification of Functioning, Disability and Health provides a guiding framework for rehabilitation.
RESULTS: Informants' experiences of home rehabilitation contributed to the formation of 6 categories: (i) living with a frail body; (ii) striving for well-being in daily life; (iii) being close at hand; (iv) feeling dependent in daily life; (v) struggling to carry on; and (vi) striving to be at home.
CONCLUSION: Older people's goals were to return to daily routines and to perform meaningful activities without feeling dependent on other people. Family members' participation was crucial. Psychosocial support and autonomy were essential for facilitating activity and participation. Healthcare professionals should consider each individual's unique experiences along with the significance of being at home

Activity participation of children with complex communication needs, physical disabilities and typically-developing peers

Raghavendra P, Virgo R, Olsson C, Connell T, Lane AE. (2011)

Objective: To describe and compare the context of participation of children with physical disabilities and complex communication needs (Group CCN) in out-of-school activities with children with physical disabilities only (Group PD) and typically-developing peers (Group TD).
Method: A cross-sectional, matched, multi-group design was used. Thirty-nine participants between 10–15 years of age were administered the Children's Assessment of Participation and Enjoyment.
Results: Kruskall-Wallis analyses revealed that there were significant differences among the three groups for overall location, enjoyment of the activities and with whom they did the social and self-improvement activities with. Mean trends showed that Group CCN participated in activities closer to home rather than in the community, were restricted in social participation and reported higher levels of enjoyment in activity participation than the other two groups.
Conclusions: Group CCN appeared to experience differences in participation when compared to peers with and without disability.

Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members

Möllerberg, Marie-Louise; Årestedt, Kristofer; Sandgren, Anna; Benzein, Eva; Swahnberg, Katarina (2020)

Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance Of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.

Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end‐of‐life care in Sweden.

O'Sullivan, Anna; Öhlen, Joakim; Alvariza, Anette; Håkanson, Cecilia (2018)

Abstract:
Objectives: Instruments for evaluating end‐of‐life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end‐of‐life care in Sweden. The VOICES (SF) [Views of Informal Carers – Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. Methods: This study was performed based on translation and back translation, cross‐cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life‐limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. Significance of results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross‐national comparisons between different healthcare places and organisations.

Adaptation of the preventive intervention program for depression for use with predominantly low-income Latino families

D’Angelo, E.J., Llerena-Ouinn, R., Shapiro, R., Colon, F., Rodriquez, P., Gallagher, K., & Beardslee, WR. (2009)

This paper describes the process for and safety/feasibility of adapting the Beardslee Preventive Intervention Program for Depression for use with predominantly low income, Latino families. Utilizing a Stage I model for protocol development, the adaptation involved literature review, focus groups, pilot testing of the adapted manual, and open trial of the adapted intervention with 9 families experiencing maternal depression. Adaptations included conducting the intervention in either Spanish or English, expanding the intervention to include the contextual experience of Latino families in the United States with special attention to cultural metaphors, and using a strength-based, family-centered approach. The families completed preintervention measures for maternal depression, child behavioral difficulties, global functioning, life stresses, and an interview that included questions about acculturative stressors, resiliency, and family awareness of parental depression. The postintervention interview focused on satisfaction, distress, benefits of the adapted intervention, and therapeutic alliance. The results revealed that the adaptation was nonstressful, perceived as helpful by family members, had effects that seem to be similar to the original intervention, and the preventionists could maintain fidelity to the revised manual. The therapeutic alliance with the preventionists was experienced as quite positive by the mothers. A case example illustrates how the intervention was adapted.

Adde Adhd : bästis med fienden

Eva Edberg (2017)

Hallå! Det är jag som är Adde. Jag är inlåst här i skåpet. Egentligen skulle jag ha spelat mitt livs viktigaste tennismatch nu. Kan du snälla släppa ut mig? Okej, jag ska vara ärlig. Jag har bara en vän och det är tennisbollen, alla andra verkar bli mina fiender. Men med hjälp av Adhd-killen inom mig kan jag bli din bästa vän. Absolut. När du öppnar får du se ...

Detta är en stormande feelgood-roman för unga. Med humor och allvar söker Adde sin nya identitet med en diagnos. En hink tennisbollar kastas upp, och ned ramlar ett bollhav av äventyr, med poliser, kraschad vänskap och en mystisk vaktmästare i kjol. Genom sporten får Adde vara med om ett spel där det viktigaste av allt är att vinna ? sig själv!

Addressing Substance Abuse Treatment Needs of Parents Involved with the Child Welfare System.

Oliveros A, Kaufman J. (2011)

The goal of this paper is to synthesize available data to help guide policy and programmatic initiatives for families with substance abuse problems that are involved with the child welfare system, and identify gaps in the research base needed to further refine practices in this area. To date, Family Treatment Drug Court and newly developed home-based substance abuse treatment interventions appear the most effective at improving substance abuse treatment initiation and completion in child welfare populations. Research is needed to compare the efficacy of these two approaches, and examine cost and child well-being indicators in addition to substance abuse treatment and child welfare outcomes.

Keywords: Substance Abuse, Child Welfare, Treatment

ADHD in Swedish 3- to 7-year-old children

Kadesjö C, Kadesjö B, Hägglöf B, Gillberg C. (2001)

Objective: To study characteristics of attention-deficit/hyperactivity disorder (ADHD) in a representative group of clinically impaired young children in Sweden with the disorder. Method: One hundred thirty-one children with ADHD (aged 3–7 years) were examined, and their parents were interviewed. Independent parent questionnaire data (Child Behavior Checklist, ADHD Rating Scale-IV, Conners) were collected. For comparison 131 children without ADHD were matched for age, gender, parents' marital status, child's adoption status, and social class. Results: Children with ADHD had extremely high ADHD symptom levels—on average four to eight times higher than the comparison group. Sociodemographic correlates of ADHD symptoms were more pronounced in parent questionnaire data than in parent interview data, underscoring the importance of diagnostic interview when dealing with clinical issues. Very few of the children with ADHD (6%) appeared "normal" with regard to attention/activity level at clinical examination.Conclusions: Clinic children with a diagnosis of DSMIV ADHD have typical and impairing symptoms already before starting school. The variance of ADHD in this age group appears to be accounted for by primary psychosocial factors only to a limited degree. It would seem reasonable to establish supportive and treatment measures for these young children so that the psychosocial and academic problems shown by so many individuals with ADHD later in their development might be reduced.

Adjö Herr Muffin

Ulf Nilsson, Anna-Clara Tidholm (2003)

Herr Muffin är ett marsvin som nu är gammal, trött och har ont i magen. Han tänker tillbaka på sitt liv och hur bra han har haft det. Han har haft fru och sex lurviga ungar, fått mycket gurka och hö. En dag ligger ett brev i hans postlåda och i brevet står det "Jag är ledsen för att pappa säger att när ett marsvin är gammal kan det plötsligt dö...." Boken om Herr Muffin berättar om ålderdom och död på ett fint och stillsamt sätt. En bilderbok som passar barn från 3 år.

Adolescence and borderline behavior—Between personality development and personality disorder

Streeck-Fischer, A. (2013)

Background: In recent years, an increasing interest in personality disorders in childhood and adolescence has been observed. This is partly due to recent findings of temperament, personality and neurobiological research. Method: This article reviews the history of the concept of borderline conditions in children and adolescents, and presents recent evidence from developmental psychology and neurobiology to support the diagnosis in adolescents as a disorder of development. An overview of treatment based on the decades-long experience with these patients at the Tiefenbrunn Clinic in Germany is described. Results: While the term personality disorder implies enduring traits, the evidence suggests that it is relatively unstable in adults as well as adolescents. Concerns about labeling adolescents with a presumably lifelong condition have hampered research on pathogenesis and treatment. Nevertheless, some adolescents with severe impairments in functioning do meet adult criteria for BPD, and do respond to the tailored treatment approaches that have been developed for them. Conclusions: The psychopathology of adolescents with BPD is probably a result of the interaction of the adolescent developmental process and defects in attachment and mentalization similar to those in adults with BPD. The term "developmental borderline personality disorder" is suggested to reflect the fluidity of this condition. Appropriate intervention requires a comprehensive multimodal approach in which individual therapy takes place within a protective framework of boundaries and limits.

Adolescent alcohol expectancies in relation to personal and parental drinking patterns

Brown SA, Creamer VA, Stetson BA. (1987)

Increased expectations of positive effects of alcohol have been associated with severity of drinking across a variety of abusing and nonabusing adult populations. Although alcohol expectancies have been examined among high school adolescents, no study has examined expectancies of identified adolescent abusers in treatment. This study investigated whether adolescent alcohol abusers in treatment expect significantly more reinforcement from alcohol than do nonabusing peers and whether expectancies vary as a function of exposure to parental alcohol abuse. The adolescent version of the Alcohol Expectancy Questionnaire (Christiansen, Goldman, & Inn, 1982) was completed by 116 abusing and nonabusing adolescents. Results indicate that adolescent alcohol abusers expect significantly more reinforcement from alcohol than do demographically comparable nonabusing peers. Adolescents with an alcohol-abusing parent reported expecting more cognitive and motor enhancement from drinking than did adolescents without a family history of abuse. Thus, both personal alcohol use and parental alcohol use are related to adolescent alcohol expectancies. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Adolescent drug abuse: helping families survive. International journal of mental health nursing

Usher K, Jackson D, O'Brien L. (2005)

Drug use and abuse carries risk in people of all ages. However, adolescents are particularly vulnerable to substance misuse. Adolescent drug use continues to be an area of concern with a number of adolescents developing problems associated with the use of various drugs. Negative sequelae associated with adolescent drug use include areas such as schooling, health, and family relationships. Difficulties with the legal system, schooling, or within the family are commonly the triggers for recognition of substance misuse problems in a young person. However, problems are usually well-established before they are recognized. The challenge of dealing with these problems will fall on families, particularly parents. This is a crisis for families, and ongoing support is needed if they are to overcome the challenges. Health workers (including nurses) are well-positioned to support families who are dealing with adolescent drug problems. In this paper we propose the adoption of a strengths approach as a strategy for developing resilience in families.

Adolescent mothers: support needs, resources, and support-education interventions

LETOURNEAU, N. L., STEWART, M. J. & BARNFATHER, A. K. (2004)

Adolescent mothers are prone to live in poor conditions, lack adequate financial resources, suffer high stress, encounter family instability, and have limited educational opportunities. These factors contribute to inadequate parent-child interactions and diminished infant development. Social support can promote successful adaptation for adolescent mothers and their children. This review article describes the support needs and challenges faced by adolescent parents and their children, the support resources available to and accessed by adolescent parents, and existing support-education intervention studies, to provide directions for future research. Relevant research published between January 1982 and February 2003 was obtained from online database indices and retrieved article bibliographies. Frequently encountered problems included small sample sizes and attrition, lack of suitable comparison groups, and measurement inconsistencies. When planning support-education interventions, content, duration, intensity, mode, level, intervention agents, and targets should be considered. Future research can address these challenges.

Adsolescent sexual behavior in two ethnic minority samples: The role of family variables

Miller KS, Forehand R, Kotchick BA. (1999)

Examined family structural variables (family income, parental education, and maternal marital status) and process variables (maternal monitoring, mother–adolescent general communication, mother–adolescent sexual communication, and maternal attitudes about adolescent sexual behavior) as predictors of indices of adolescent sexual behavior and risk due to sexual behavior in 907 Black and Hispanic families from Montgomery, Alabama; New York City; and San Juan, Puerto Rico. Mean ages of mother and daughter for the total sample were 40.27 yrs and 15.30 yrs, respectively. The findings indicate that family-structure variables failed to predict adolescent sexual behavior. In contrast, each of 3 family process variables predicted multiple indices of adolescent sexual behavior and risk due to sexual behavior. Neither adolescent gender nor ethnicity qualified the findings. Differences did emerge among the 3 locations and by reporter (adolescent or mother) of the family process variables.

Adult attachment in the context of refugee traumatisation: the impact of organized violence and forced separation on parental states of mind regarding attachment

De Haene, L., Grietens, H., & Verschueren, K. (2010)

Starting from an outline of the refugee experience as a process of cumulative traumatisation, we review research literature on mental health outcomes in refugees. Next, an integration of findings on relational processes in refugee families documents the role of the family unit as a key interactive context patterning the impact of sequential traumatisation. Relating these trauma- and migration-specific family processes to their central dimension of provision or disruption of emotional availability in a context of chronic adversity, we aim to explore the development of unresolved and insecure parental states of mind regarding attachment during forced migration. Starting the research report, a method discussion on the administration of 11 Adult Attachment Interviews with adult refugees as part of an explorative multiple case study integrates deontological and technical reflections on the use of the Adult Attachment Interview in a context of ongoing traumatisation. The paper then presents findings on adult attachment in refugees and highlights representational processes involved in the potential disruption of caregiver availability during refugee traumatisation.

Adult Attention Deficit Hyperactivity Disorder and Parenting Styles

Sabagh, A. K., Khademi, M., Noorbakhsh, S., Razjooyan, K., & Arabgol, F. (2016)

The aim of the present study was to compare the parenting styles in parents with and without adult attention deficit hyperactivity disorder (ADHD) who had children with ADHD. It was a case-control study with convenience sampling strategy. Participants were recruited from the parents of previously diagnosed children with ADHD referred to Imam Hossein Hospital, Tehran/ Iran. Ninety parents with adult ADHD and 120 normal parents were chosen by Conner's Adult ADHD Screening Scale (CAARS) and psychiatrist interview. Using Baumrind Parenting Styles Questionnaire and Arnold Parenting Scale, parenting styles were assessed in both the groups. Results from independent samples t-test indicated that Authoritarian parenting style (F = 0.576, p 0.022) and Over reacting style (F = 7.976, p 0.045) were significantly higher in cases. On the other hand, controls were using Permissive style (F = 0.131, p 0.044) more than cases. The results are consistent with prior studies; these findings can improve the content of parent training for children with ADHD, who have adult ADHD themselves.

Adult Attention-Deficit/Hyperactivity Disorder and Driving: Why and How to Manage It.

Cox, D., Madaan, V., & Cox, B. S. (2011)

Driving is a complex task that can be a significant challenge for individuals with attention-deficit/hyperactivity disorder (ADHD). A slight lapse in attention or inhibition while driving (not uncommon in individuals with ADHD) can result in hazardous consequences for these individuals and their families. This is also an interesting clinical scenario for the treating physician, who is always trying to optimize the various treatment options for the patient. Despite such potentially perilous consequences for society, this subject only recently has received researchers' attention. This review paper highlights the psychological differences between drivers with and without ADHD and examines differences between these groups in various driving simulation models. Research updates involving pharmacologic and nonpharmacologic interventions are discussed at length. Although the long-term effects of such interventions may not be clearly defined, there is enough evidence to suggest the public health significance of such interventions for optimally managing adult symptoms of ADHD.

Adult health and relationship outcomes among women with abuse experiences during childhood

Cannon, E. A., Bonomi, A. E., Anderson, M. L., Rivara, F. P., & Thompson, R. S. (2010)

Associations between child abuse and/or witnessing intimate partner violence (IPV) during childhood and women's health, adult IPV exposure, and health care use were examined. Randomly sampled insured women ages 18-64 (N = 3,568) completed a phone interview assessing childhood exposure to abuse and witnessing IPV, current health, and adult IPV exposure. Women's health care use was collected from automated health plan databases. Poor health status, higher prevalence of depression and IPV, and greater use of health care and mental health services were observed in women who had exposure to child abuse and witnessing IPV during childhood or child abuse alone, compared with women with no exposures. Women who had witnessed IPV without child abuse also had worse health and greater use of health services. Findings reveal adverse long-term and incremental effects of differing child abuse experiences on women's health and relationships.

Adult outcome of attention-deficit/hyperactivity disorder: a controlled 16-year follow-up study

Biederman, J., Petty, C. R., Woodworth, K. Y., Lomedico, A., Hyder, L. L., & Faraone, S. V. (2012)

OBJECTIVE:
To estimate the risks for psychopathology and functional impairments in adulthood among a longitudinal sample of youth with and without attention-deficit/hyperactivity disorder (ADHD) diagnosed in childhood.
METHOD:
This was a case-controlled, 16-year (15-19 years) prospective follow-up study of ADHD. 140 boys with and 120 without DSM-III-R ADHD were recruited from pediatric and psychiatric settings. The main outcome measures were structured diagnostic interviews and measures of psychosocial, educational, and neuropsychological functioning. Data were collected from 1988 to 2006.
RESULTS:
At the 16-year follow-up, subjects with ADHD continued to significantly differ from controls in lifetime rates of antisocial, mood, anxiety, and addictive disorders, but with the exception of a higher interval prevalence of anxiety disorders (20% vs 8%; z = 2.32, P = .02) and smoking dependence (27% vs 11%; z = 2.30, P = .02), the incidence of individual disorders in the 6-year interval between the current and prior follow-up did not differ significantly from controls. At follow-up, the ADHD subjects compared with controls were significantly (P < .05) more impaired in psychosocial, educational, and neuropsychological functioning, differences that could not be accounted for by other active psychopathology.
CONCLUSIONS:
These long-term prospective findings provide further evidence for the high morbidity associated with ADHD across the life cycle, stressing the importance of early recognition of this disorder for prevention and early intervention strategies. These findings also indicate that, in adulthood, ADHD confers significant risks for impairment that cannot be accounted for by other psychopathology.

Adverse behavioral and emotional outcomes from child abuse and witnessed violence

Johnson, R. M., Kotch, J. B., Catellier, D. J., Winsor, J. R., Dufort, V., Hunter, W., & Amaya-Jackson, L. (2002)

This article examines mental health outcomes of children who have witnessed violence in their social environment and/or have been physically abused. Participants (n = 167) come from a longitudinal study on child maltreatment. Outcomes—including depression, anger, and anxiety—are measured by the Child Behavior Checklist and the Trauma Symptom Checklist for Children. The authors used adjusted multivariate analyses to test the statistical significance of associations. The majority of children were female (57%) and non-White (64%). One third had been physically victimized; 46% had witnessed moderate-high levels of violence. Results confirm that children are negatively affected by victimization and violence they witness in their homes and neighborhoods. Victimization was a significant predictor of child aggression and depression; witnessed violence was found to be a significant predictor of aggression, depression, anger, and anxiety. Implications will be discussed.

Adverse childhood experiences predict earlier age of drinking onset: Results from a representative US sample of current or former drinkers

Rothman, EF., Edwards, EM., Heeren, T., & Hingson, RW. (2008)

OBJECTIVE. Our goal was to determine whether adverse childhood experiences predicted the age at which drinking was initiated and drinking motives in a representative sample of current or former drinkers in the United States.

METHODS. In 2006, a probability sample of 3592 US current or former drinkers aged 18 to 39 were surveyed. Multinomial logistic regression examined whether each of 10 adverse childhood experiences was associated with earlier ages of drinking onset, controlling for demographics, parental alcohol use, parental attitudes toward drinking, and peers' drinking in adolescence. We also examined whether there was a graded relationship between the number of adverse childhood experiences and age of drinking onset and whether adverse childhood experiences were related to self-reported motives for drinking during the first year that respondents drank.

RESULTS. Sixty-six percent of respondents reported ≥1 adverse childhood experiences, and 19% reported experiencing ≥4. The most commonly reported adverse childhood experiences were parental separation/divorce (41.3%), living with a household member who was a problem drinker (28.7%), mental illness of a household member (24.8%), and sexual abuse (19.1%). Of the 10 specific adverse childhood experiences assessed, 5 were significantly associated with initiating drinking at ≤14 years of age (compared with at ≥21 years of age) after adjustment for confounders, including physical abuse, sexual abuse, having a mentally ill household member, substance abuse in the home, and parental discord or divorce. Compared with those without adverse childhood experiences, respondents with adverse childhood experiences were substantially more likely to report that they drank to cope during the first year that they used alcohol.

CONCLUSIONS. Results suggest that children with particular adverse childhood experiences may initiate drinking earlier than their peers and that they may be more likely to drink to cope with problems (rather than for pleasure or to be social).

Adverse, childhood experiences, alcoholic parents, an later risk of alcoholism and depression

Anda, RF., Whitfield, CL., Felitti, VJ., Chapman. D., Edwards, VJ., Dube, SR., & Williamson, DF. (2002)

Abstract
OBJECTIVE:
The study examined how growing up with alcoholic parents and having adverse childhood experiences are related to the risk of alcoholism and depression in adulthood.
METHODS:
In this retrospective cohort study, 9,346 adults who visited a primary care clinic of a large health maintenance organization completed a survey about nine adverse childhood experiences: experiencing childhood emotional, physical, and sexual abuse; witnessing domestic violence; parental separation or divorce; and growing up with drug-abusing, mentally ill, suicidal, or criminal household members. The associations between parental alcohol abuse, the adverse experiences, and alcoholism and depression in adulthood were assessed by logistic regression analyses.
RESULTS:
The risk of having had all nine of the adverse childhood experiences was significantly greater among the 20 percent of respondents who reported parental alcohol abuse. The number of adverse experiences had a graded relationship to alcoholism and depression in adulthood, independent of parental alcohol abuse. The prevalence of alcoholism was higher among persons who reported parental alcohol abuse, no matter how many adverse experiences they reported. The association between parental alcohol abuse and depression was accounted for by the higher risk of having adverse childhood experiences in alcoholic families.
CONCLUSIONS:
Children in alcoholic households are more likely to have adverse experiences. The risk of alcoholism and depression in adulthood increases as the number of reported adverse experiences increases regardless of parental alcohol abuse. Depression among adult children of alcoholics appears to be largely, if not solely, due to the greater likelihood of having had adverse childhood experiences in a home with alcohol-abusing parents.

Age Order and Children’s Agency

Närvänen, A-L., & Näsman, E. (2007)

So far, research on the welfare state has usually neglected children and childhood. In the rare attempts to include childhood in welfare state analysis, too much emphasis was placed on children as future adults. However, only a full recognition of children as human beings and citizens here and now are compatible with new social studies of childhood as well as children's rights discourses. Thus the conceptual integration of children and childhood in the welfare state is still an open question. This book closes the gap by offering the concept of generational order as theoretical tool to both childhood and welfare state research. In analogy to gender analysis, this concept is an adequate tool in providing visibility to the adult bias of traditional welfare state theories and practices. The book includes contributors from ten predominantly European countries, exploring issues of children's social and economic welfare, such as child poverty in a theoretical, methodological, and practical perspective. Together with the companion volume below â€" Flexible Childhood, also by the University Press of Southern Denmark â€" this book is the final result of COST Action A19, Children's Welfare, which has been supported by the European COST Framework.

Ageing Europe

Walker, A. and T. Maltby (1997)

This book presents findings from recent policy oriented research undertaken by the EU's Observatory on Ageing and Older People: the most definitive account to date of socio-economic policies affecting older people and the extent of their social integration in European society. The book also presents the results from a specially commissioned Eurobarometer survey of public attitudes to ageing and older people conducted in twelve European Union countries. Overall it provides a unique and comprehensive portrait of how older people are perceived by the general public in the EU and how they view themselves and the ageing process. The book criticizes European countries for failing to come to terms with the fact of societal ageing and challenges them and the EU itself to ensure the social integration of older people

Ageing well : mobile ICT as a tool for empowerment of elderly people in home health care and rehabilitation [Diss.].

Melander Wikman, A. (2008)

Avhandling

The ageing of Europe's population is a crucial challenge for the 21st century. Today, the mean life expectancy in Sweden is 83 years for women and 78 for men. Ageing well is a frequently used process, describing the objectives of future elderly care and rehabilitation. Enabling elderly people to live longer and independently in their homes is one goal for society as a whole. Providing health care of high quality, on equal terms for all citizens, is an important political goal in Sweden. It is a great challenge for providers to achieve elderly care of high quality and to develop products, services and technologies that meet the needs of elderly people. There is an assumption that Information and Communication Technologies (ICT) will enhance quality of life. Additionally "electronic accessibility" is one of the goals for the European Information Society to support and enable self-determination and mobility. Dimensions of empowerment such as participation and ability to influence/control one's life situation imply an approach to health care with the patient/client in focus. The aim of this thesis was to explore different dimensions of empowerment and an empowerment methodology for elderly persons in home health care, and if ICT was a useful tool in this process. A multi-method approach was used that included interviews with patients with experience of rehabilitation, interviews with elderly persons with homecare and safety alarms, exploring their needs in relation to empowerment dimensions such as autonomy, self-determination, participation and mobility, an intervention where a mobile safety alarm was tested by elderly individuals and reflective learning workshops with front line staff in home care. Different methods of analysis were used, including Grounded Theory, Latent Content analysis and Constructivist Grounded Theory together with reflections. One of the overall findings was that all patients/clients that participated in these studies had not reflected upon whether it would be possible or not, to influence care and rehabilitation. The results indicate low patient participation in and influence on, the rehabilitation process. Elderly people perceived freedom of movement as a prerequisite for participation and in one of the studies the elderly participants felt that they could influence care and be participating in one aspect, but they still wanted more support with, for example, being more physically active, like walking out doors. The overall findings show a genuine patient/client desire, but limited possibilities to influence care and rehabilitation. Put another way, patients/clients want to have influence and participate authentically, but they do not exactly know how to achieve this. All patients/clients were positive towards the professionals in care and rehabilitation. They were really grateful and admired the professionals and also identified themselves with how stressed and how overloaded with work the professionals were. This might mean that the concept interdependency is looked upon as more important than real autonomy. The patients/clients tried to be compliant and this can be understood as "learning unpretentiousness". After reflecting upon their situation they were more able to articulate their needs that were not responded to or taken care of. When ICT, as an empowering tool, was implemented, findings showed that elderly people experienced the use of a mobile safety alarm as empowering. The mobile safety alarm gave them the freedom of movement needed to be physically active and still feel safe. The positioning device was not experienced as a threat to their integrity. Mobility and safety were experienced as more important than privacy. The research findings indicate that in order to improve home health care services from the patient's/client's perspective, we need to work with the triads of participation, empowerment and mobile Information and Communication Technology. We need to critically and creatively reflect on what clients say and then try to respond positively to what we learn and shift the focusaway from 'what's life like?' and 'what should life be like?', towards the explicit action question, 'what needs to be done to make life as good as it can be?' Real improvement is more likely to be sustained with some changes in accountability.

Aging in Place in a Retirement Community: 90+ Year Olds

Paganini-Hill, A. (2013)

Aging in place, an image of growing old in one's home and maintaining one's daily routine, is desired by most older adults. To identify variables promoting such independent living in the oldest-old, we examined the association between living situation of a population-based cohort of 90+ year olds with health and lifestyle variables. Of 1485 participants, 53% still lived in their home at a retirement community designed to foster wellness. Those living at home tended to be healthier, with smaller proportions having chronic diseases or hospitalizations in the preceding year and a greater proportion having normal functional ability. Dementia was the chronic disease most significantly related to living situation. In addition to not having dementia, not using a wheelchair or bath aid, receiving meals on wheels, and being married were jointly related to living at home. With the help of family and friends and with a medical and social support system, many 90+ year olds can age in place. This is often because they have a caregiving spouse or paid caregiver.

Aging in Sweden: Local Variation, Local Control.

Davey, A., Malmberg, B., & Sundström, G. (2014)

Aging in Sweden has been uniquely shaped by its history-most notably the long tradition of locally controlled services for older adults. We considered how local variations and local control shape the experience of aging in Sweden and organized the paper into 3 sections. First, we examine aging in Sweden along demography, economy, and housing. Next, we trace the origins and development of the Swedish welfare state to consider formal supports (service provision) and informal supports (caregiving and receipt of care). Finally, we direct researchers to additional data resources for understanding aging in Sweden in greater depth. Sweden was one of the first countries to experience rapid population aging. Quality of life for a majority of older Swedes is high. Local control permits a flexible and adaptive set of services and programs, where emphasis is placed on improving the quality and targeting of services that have already reached a plateau as a function of population and expenditures.

Aging with a serious mental disability in the rural Northern Ontario: Family Members´experiences

Tryssenar, J., & Tremblay, M. (2002)

As people with serious mental disabilities grow older, their primary caregivers continue to be family members. This qualitative study explored the life experiences of people aging with a preexisting serious mental disability living in rural Northern Ontario, from the perspective of family members, and it identified the factors which facilitated or impeded their relative's current and future participation in community life. Results included the challenges of rural life, lack of support by health care providers, rural service needs, caregiver responsibility, the impact of aging on the individual and the family, and future concerns. New models for effective rural programs, services, community education, and effective partnerships with family members must be investigated.

Aging with lifelong disability: Policy, program and practice issues for professionals

Bigby, Christine (2004)

'A comprehensive text addressing this issue is welcome and this book addresses service provision for older people with disabilities from a UK, USA and Australian perspective. The book would serve as a useful reference book for Health and Social Service personnel, particularly students, from a variety of disciplines working with older adults, in the learning disability field or with older people who have lifelong physical disabilities. A particular strength is the inclusion of case vignettes that describe individual older clients with lifelong disabilities; interesting questions are posed for discussion which relate to the subject matter in each of the five sections. The vignettes are interesting and enjoyable to read and would be useful for group work/teaching purposes.' - International Journal of Geriatric Psychiatry 'This book is most welcome with an extensive review of the research and service development in the United States, the United Kingdom and Australia with illustrative vignettes and relevant questions following the first four parts of the book. Suggested literature is also part of each chapter. All in all, a book recommended for both practitioners, researchers and policy makers involved with persons with life long disability as they age.' - International Journal of Adolescent Medical Health 'In all, this book is an essential addition to the library of service provider organisations, policymakers, researchers, and families and all who wish to share in ensuring the well-being and quality lifestyles of this growing and emerging group of citizens. I see this book as a seminal text in this area.' - Marie Knox (School of Humanities and Human Services, Queensland University of Technology, Brisbane) in Intellectual Disability Australasia 'This book makes a commendable contribution in uniting thinking and strategic planning, and also through providing empirical evidence to illustrate ways forward that have meaning for older people with disabilities, their families and front-line professionals.' - from the Foreword by Gordon Grant Based on the author's 18 years' research experience and social work practice expertise, this pioneering guide provides up to date specialist knowledge about ageing with a disability in the context of the more mainstream knowledge about ageing processes. Christine Bigby uses the concept of 'successful ageing' as a framework in which to consider the issues and practicalities for older people with a lifelong disability. Bigby presents strategies for the various challenges involved in the physiological, psychological and sociological aspects of ageing and proposes an integrated framework of service development and policy directions for the implementation of these strategies. Particular focus is given to lifestyle planning, encompassing subjects such as daily activity and leisure, housing and support, advocacy, case management and health. Consideration is also given to working with older parental carers of adults with a lifelong disability to support preparation and planning for the transition from parental care.

AKK-Alternativ och kompletterande kommunikation för personer med autism.

Thunberg, G. (2011)

Syftet med denna skrift är att beskriva olika typer av AKK-insatser till personer med autismspektrumstörning och vilken kunskap vi har om hur detta fungerat. Följande frågeställningar kommer att belysas:
Hur ser historiken kring AKK-intervention och autism ut – både i ett svenskt och internationellt perspektiv?
Vilken forskning har bedrivits inom området – vad vet vi när det gäller effekter av AKK-insatser?
Finns det belägg för att något AKK-sätt (tecken, bilder/PECS, talande hjälpmedel) fungerar bättre eller sämre för personer med autism?
När kan och bör man starta AKK-insatser?
Hur förhåller sig AKK till tal – behöver man vara orolig för att AKK hämmar utveckling av tal?
Vad verkar vara viktigt när det gäller intervention och metodik för att få AKK att fungera för gruppen?
Hur ser framtiden ut – särskilt med tanke på den enorma utvecklingen av digital och mobil teknik?

Alcohol consumption among pregnant women in a Swedish sample and its effects on the newborn outcomes

Comasco, E., Hallberg, G., Helander, A., Oreland, L., & Sundelin-Wahlsten, V. (2012)

BACKGROUND:
Little is known about the effects of low levels of maternal alcohol intake on the neuropsychological development of the child. This study is part of an ongoing investigation on maternal drinking and presents data on demographic variables, maternal alcohol use, and birth outcomes from that study.
METHODS:
The sample comprised 2,264 women from a Swedish antenatal clinic. Retrospective self-report data were collected on alcohol consumption before and during pregnancy, using the Alcohol Use Disorders Identification Test (AUDIT), and on nicotine use. Specific alcohol biomarkers for excessive drinking, carbohydrate-deficient transferrin (CDT) in serum and phosphatidylethanol (PEth) in whole blood, were determined during mid-pregnancy in a subsample of the women. Data on labor and early characteristics of the child were also assessed.
RESULTS:
Before pregnancy, 89% of the women regularly consumed alcohol and 49% reported occasional or frequent binge drinking. Nicotine was used by 15% before and by 5% during pregnancy. During pregnancy, 12% continued using alcohol and 5% also admitted binge drinking. However, all alcohol biomarker values were below the reporting limits (CDT ≤ 1.7% disialotransferrin; total PEth < 0.1 μmol/L). Self-reported drinking during pregnancy was associated with a higher AUDIT score before pregnancy, nicotine use at the time of the first prenatal visit, older age, and previous legal abortions.
CONCLUSIONS:
The AUDIT questionnaire and 2 specific alcohol biomarkers were used in routine maternity care to collect information about drinking during pregnancy and thereby to identify children at risk for alcohol-related complications. While the AUDIT results suggested that a significant number of women continued using alcohol during pregnancy, implying a risk for fetal disorders, the biomarkers showed negative test values thus indicating only modest drinking levels.

Alcohol use and stress in university freshmen: a comparative intervention study of two universities

Andersson, C. (2009)

doktorsavhandling

Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.

A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.

Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.

In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.

Alcohol use during pregnancy in Canada: How policy moments can create opportunities for promoting women’s health

Poole, N & Greaves, L. (2013)

This article addresses the challenge of igniting action on health promotion for women in Canada with respect to alcohol use during pregnancy. We illustrate that accelerated action on health promotion for women that engages multiple levels of players, women-centred and harm-reduction frameworks and a gendered approach to understanding women's lives can be achieved when the right policy moment occurs. We illustrate this by describing the opportunity afforded by the Olympic Games in 2010, where the BC government used the Games to encourage action on women's health promotion and the prevention of alcohol use in pregnancy. We suggest that the 2011 announcement of new low-risk drinking guidelines that recommend lower intake of alcohol for women than for men offers another, to date unused, opportunity.

Alcohol use in pregnancy: prevalence and predictors in the longitudinal study of Australian Children

Hutchinson, D., Moore, E.A., Breen, C., Burns, L., & Mattick, R.P. (2013)

INTRODUCTION AND AIMS:
This study aimed to estimate the prevalence and describe the patterns of alcohol use during pregnancy among Australian mothers. The study also aimed to examine the characteristics associated with alcohol use in pregnancy.
DESIGN AND METHODS:
Data comprised two representative samples of families (infant cohort = 5107 parents of 0- to 1-year-olds; child cohort = 4983 parents of 4- to 5-year-olds) from the 2005 Longitudinal Study of Australian Children.
RESULTS:
Alcohol use in pregnancy was reported by 37.6% of mothers of infants aged 0-1 years and 27.6% of mothers of children aged 4-5 years. The majority of women reported low level/occasional use of alcohol but, when extrapolated to population level, this equates to 131,250 children in these two age groups exposed to alcohol in utero, with over 1000 children exposed to alcohol most days and an estimated 671 infants exposed to three or more drinks per occasion. Among mothers of infants, alcohol use in pregnancy was associated with increasing maternal age, higher education, greater economic advantage and fewer physical health problems in pregnancy. Among mothers of children, maternal drinking in pregnancy was associated with increasing maternal age and smoking in pregnancy.
DISCUSSION AND CONCLUSIONS:
Alcohol use during pregnancy is common with around one-third of all mothers reporting use. Most women reported only occasional use, and among those who were asked, consumed one standard drink on average per occasion. Significant numbers were exposed to three or more drinks on one occasion or to alcohol most days while in utero. National guidelines recommend abstinence as no 'safe' threshold has been determined. Public health campaigns are needed to educate pregnant women regarding national guidelines.

Alcohol, Drugs and the Family: Results from a Long-Running Research Programme within the UK

Velleman R, Templeton L. (2003)

This article will outline the main strands of the UK-based Alcohol, Drugs and the Family (ADF) research programme. This programme has examined the impact of substance misuse problems on children, spouses, and families, both in the UK and elsewhere, especially in urban Mexico City and in Australia amongst both urban and rural Aborigine populations. This article will outline the main theoretical perspective that we have developed from this work (the stress-strain-coping-support model). It will outline some of the key findings of this programme, and address some of the key universals that we have observed across various cultures. It will end by describing current research, including the testing of brief interventions being delivered through primary care to family members to enable them to cope better with the problems which family substance misuse causes.

Alcoholism/Addiction as a Chronic Disease

White WL, Boyle M, Loveland D. (2002)

Although characterized as a chronic disease for more than 200 years, severe and persistent alcohol and other drug (AOD) problems have been treated primarily in self-contained, acute episodes of care. Recent calls for a shift from this acute treatment model to a sustained recovery management model will require rethinking the natural history of AOD disorders; pioneering new treatment and recovery support technologies; restructuring the funding of treatment services; redefining the service relationship; and altering methods of service evaluation. Recovery-oriented systems of care could offer many advantages over the current model of serial episodes of acute care, but such systems will bring with them new pitfalls in the personal and cultural management of alcohol and other drug problems.

Alternativ och Kompletterande kommunikation (AKK) i teori och praktik.

Heister-Trygg, B. and I. Andersson (2009)

Boken är skriven för personer som i sin yrkesverksamhet ansvarar för området AKK, t ex logopeder, arbetsterapeuter och pedagoger, och för både grundutbildning och vidareutbildning.
Huvudförfattarena för denna reviderade upplaga är logopeder och driver sedan många år Södra regionens kommunikationscentrum, SÖK, och har mångårig erfarenhet av AKK-området bland såväl barn som vuxna.
Ur innehållet: Teorier kring tal, språk och kommunikation, alternativa och kompletterande kommunikationssätt, omgivningsfaktorer, metodik, etik, olika funktionsnedsättningar m m. Genom boken får vi följa ett antal personer i varierande ålder och med olika svårigheter och de ställningstagande som görs för att dessa ska få bästa möjliga förutsättningar att kunna kommunicera.

Ambient assisted living technology-mediated interventions for older people and their informal carers in the context of healthy ageing: A scoping review

Nilsson, Maria Y ; Andersson, Stefan ; Magnusson, Lennart ; Hanson, Elizabeth (2021)

There is a growing demand for health and social care services to provide technology-mediated interventions that promote the health and well-being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology-mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing. We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion. Nine categories described the aims and content of the included studies. The healthy ageing domain "Ability to meet basic needs" was mirrored in four categories, whereas "Ability to contribute to society" was not addressed at all. The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers.

Ambiguous Loss in Families of Children with Autism Spectrum Disorders

O'Brien, M. (2007)

Learning that a child has a lifelong developmental disorder is stressful & challenging to any family, yet it is clear that some families adapt & adjust more readily than others. In this article, it is proposed that a diagnosis of an autism spectrum disorder (ASD) is especially likely to be experienced as ambiguous loss. Interviews with mothers of children with ASDs are used to identify whether mothers express feelings of ambiguous loss when talking about their child. Then, a specific hypothesis derived from ambiguous loss theory -- that higher levels of identity ambiguity in mothers are linked to higher levels of depressive symptoms & perceived stress independent of the severity of the child's diagnosis -- is tested & found to be supported. Recognition of ambiguous loss in families of children with ASDs would help professionals provide more effective support & assistance to families. Tables, References. Adapted from the source document.

An Alternative Approach for the Analyses and Interpretation of Attachment Sort Items

KIRKLAND, J., BIMLER, D., DRAWNEEK, A., MCKIM, M. & SCHOLMERICH, A. (2004)

Attachment Q‐Sort (AQS) is a tool for quantifying observations about toddler/caregiver relationships. Previous studies have applied factor analysis to the full 90 AQS item set to explore the structure underlying them. Here we explore that structure by applying multidimensional scaling (MDS) to judgements of inter‐item similarity. AQS items are arranged in the MDS solution along three easily interpretable axes: a model that is compatible with but more parsimonious than factor analysis solutions. This geometrical approach suggests ways to modify the AQS—primarily a research tool—to make it more practical for clinical applications. Sets of AQS data are represented and interpreted in the three‐dimensional model as vectors. Summaries at a finer‐grained level are obtained by finding points in the model where variability across datasets is greatest. We report re‐analyses of archival (published) data, and also data collected with streamlined procedures more suitable in the field. Although not reported here, collection and analysis can both be performed online via a website. The general methodology is not restricted to the current application of toddler attachment.

An analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate

Annerstedt L, Elmståhl S, Ingvad B, Samuelsson S. (2000)

The burden of caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver burden has probably reached its upper limit. Primary family caregivers of 39 DAT and 40 VD patients who were being considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden: general strain, isolation, disappointment, and emotional involvement, were correlated with the patients' diagnoses, abilities, and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver's gender, social class, and previous institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the patients' ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers. Different symptomatology in patients of the two diagnostic groups was related to special aspects of the burden. Multiple regression analysis showed that the amount of caregiving time each week and impaired sense of own identity, misidentifications, clinical fluctuations, and nocturnal deterioration in the patients predicted the breaking-point.

An assessment of the relationship between informal caring and quality of life in older community-dwelling adults -- more positives than negatives

Ratcliffe J, Lester LH, Couzner L, Crotty M. (2013)

The main objective of the study was to apply the recently developed Index of Capability (ICECAP-O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged>=65 years) according to carer status. A Health Omnibus survey including the ICECAP-O instrument, carer status (informal carer vs. non-carer) and several socio-demographic questions was administered in 2009 as a face-to-face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non-carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP-O, with carers having comparable mean ICECAP-O scores to non-carers in the general population [carers: mean (SD) 0.848 (0.123), non-carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP-O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP-O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care-giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care-giving.

An efficacy study of a combined parent and teacher management training programme for children with ADHD

Östberg, M. and A.-M. Rydell (2012)

Background: Several parent training programmes and behavioural teacher training programmes built on learning theory have been developed for problem prevention and treatment of attention-deficit/hyperactivity disorder (ADHD) and/or oppositional defiant disorder (ODD) during the last few decades. Group format has often been used for parent training but single-subject designs are more common in teacher training. More studies have focussed on pre-school children than on older children, and a minority have been conducted in public mental health settings. Aim: This study aimed to evaluate a combined parent and teacher manual-based group training programme for children with ADHD conducted by the staff at a child and adolescent psychiatric clinic in Sweden. Method: The intervention was a modified version of Barkley's programme. Children were randomized to an Intervention or a Control group. Sixty-one parents and 68 teachers answered questions about ADHD and ODD symptoms, and about behavioural problems when the study started and at a 3-month follow-up. Results: Results showed that the intervention resulted in a reduction of the number of children who met DSM-IV criteria for ADHD and/or ODD. Effects were more pronounced in the home setting than in the school setting, and were further accentuated when both parents and teachers of the same child took part in the intervention. Teachers with more problematic classroom situations benefited most from the intervention. Conclusion: The programme, "Strategies in Everyday Life", has, in a regular clinical setting, demonstrated promising effects on children's disruptive behaviour, and a clinical implication was to recommend involving both parents and teachers in the programme.

An experimental evaluation of theory-based mother and mother-child programs for children of divorce

Wolchik, S.A., West, S.G., Sandler, I.N., Tein, J., Coatsworth, D. & Lengua, L. (2000)

This study evaluated the efficacy of 2 theory-based preventive interventions for divorced families: a program for mothers and a dual component mother-child program. The mother program targeted mother-child relationship quality, discipline, interparental conflict, and the father-child relationship. The child program targeted active coping, avoidant coping, appraisals of divorce stressors, and mother-child relationship quality. Families with a 9- to 12-year-old child (N = 240) were randomly assigned to the mother, dual-component, or self-study program. Postintervention comparisons showed significant positive program effects of the mother program versus self-study condition on relationship quality, discipline, attitude toward father-child contact, and adjustment problems. For several outcomes, more positive effects occurred in families with poorer initial functioning. Program effects on externalizing problems were maintained at 6-month follow-up. A few additive effects of the dual-component program occurred for the putative mediators; none occurred for adjustment problems

An experimental intervention with families of substance abusers: one-year follow-up of the focus on families project

Catalano RF, Gainey RR, Fleming CB, Haggerty KP, Johnson NO. (1999)

AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.

An experimental intervention with families of substance abusers: one-year follow-up of the focus on families project

Catalano RF, Gainey RR, Fleming CB, Haggerty KP, Johnson NO. (1999)

AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.

An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

Low JT, Roderick P, Payne S. (2004)

OBJECTIVES:
To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.
SETTING:
East Dorset Health Authority.
SUBJECTS:
Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.
DESIGN:
Qualitative methods.
METHODS:
Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.
RESULTS:
Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.
CONCLUSIONS:
Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.

An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2005)

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656.

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2005)

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

An exploratory study: expanding the concept of play for children with severe cerebral palsy.

Graham N, Truman J, Holgate H. (2014)

Introduction: Play is essential to a child's development, and is a dominating component of a child's life. Forming part of a broader study aiming to explore what parents of children with cerebral palsy understand by play, and its use in therapy and home programmes, this research article focuses on how parents expand their concept of play for their children.
Method: A qualitative methodology and interpretive descriptive approach were taken. Following ethical approval, seven parents were recruited, completed an interview, and provided a contextual information sheet. An interpretive descriptive approach to analysis allowed exploration of this data.
Findings: Parents appeared to expand their concept of play beyond the conventional idea of play for typically developing children, seemingly as a result of the limitations placed on each child's play through their physical disability. Parents discussions revealed three subthemes: vicarious play, play through communication, and therapy in play.
Conclusion: Occupational therapists can help parents to understand how the concept of play can be expanded to involve ideas such as vicarious play and communication as play. Parents may then feel more comfortable in allowing their children to experience play as a primary occupation, in a less conventional way.

An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure

Evangelista LS, Strömberg A, Dionne-Odom JN. (2016)

PURPOSE OF REVIEW: This article examines interventions aimed at improving
psychological outcomes (e.g., caregiver burden, quality of life, anxiety,
depression, perceived control, stress mastery, caregiver confidence and
preparedness, and caregiver mastery) in family caregivers of patients with heart
failure.
RECENT FINDINGS: Eight studies meeting the inclusion criteria were included in
the review. The most common intervention involved psychoeducation facilitated by
a nurse (6/8) and supplemented with a combination of follow-up face-to-face
sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring
(3/6). Two studies used a support group intervention of four to six sessions.
Half of the interventions reported a significant effect on one or more primary
outcomes, including caregiver burden (n = 4), depressive symptoms (n = 1), stress
mastery (n = 1), caregiver confidence and preparedness (n = 1), and caregiver
mastery (n = 1).
SUMMARY: Compared with dementia and cancer family caregiving, few interventions
have been evaluated in caregivers of patients with heart failure. Of the existing
interventions identified in this review, considerable variability was observed in
aims, intervention content, delivery methods, duration, intensity, methodological
rigor, outcomes, and effects. Given this current state of the science, direct
comparison of heart failure caregiver interventions and recommendations for
clinical practice are premature. Thus, research priority is strongly warranted
for intervention development and testing to enhance heart failure caregiver
support and education.

An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands

Ullenhag A, Bult MK, Nyquist A, Ketelaar M, Jahnsen R, Krumlinde-Sundholm L, et al. (2012)

PURPOSE:
To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance.
METHODS:
In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6-17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation.
RESULTS:
Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender.
CONCLUSION:
Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.

An Internet-based videoconferencing system for supporting frail elderly people and their carers

Savolainen, L., Hanson, E., Magnusson, L. & Gustavsson, T. (2008)

Abstract
The ACTION project uses information and communication technology to support frail elderly people and their family carers. The aims are to enhance their quality of life, independence and preparedness and to break social isolation. A videoconferencing system, connecting homes and a call centre, was used in a pilot study in 1997 - 2002. A re-designed system was brought into use in late 2004 and over 60 new units were introduced during the first six months. The new system was evaluated with an interview study and by data logging. Eight family users and four professional carers were interviewed. The family users had used the videophone at least six times and they had had the equipment at home for at least two months. The average number of initiated calls per user was 5.7 per month and the average call time per user was 40 min per month. Seven of the users (88%) reported that the system very much reduced their sense of loneliness and isolation. The results of the evaluation were encouraging. There were several frequent users of videoconferencing. System quality was acceptable although a shorter audio delay would be desirable. The system was used regularly by the participants and it fulfilled its purpose.

An intervention for parents with AIDS and their adolescent children

Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B. (2001)

OBJECTIVES: This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS. METHODS: Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years. RESULTS: Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions. CONCLUSIONS: Interventions can reduce the long-term impact of parents' HIV status on themselves and their children

An intervention for parents with AIDS and their adolescent children

Rotheram-Borus, M.J., Lee, M.B., Gwadz, M., & Draimin B. (2001)

Abstract
OBJECTIVES:
This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS.
METHODS:
Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years.
RESULTS:
Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions.
CONCLUSIONS:
Interventions can reduce the long-term impact of parents' HIV status on themselves and their children.

An intervention program for university students who have parents with alcohol problems: a randomized controlled trial

Hansson, H., Rundberg, J., Zetterlind, U., Johnsson, KO., & Berglund, M. (2006)

Aim: To study the effects of alcohol and coping intervention among University students who have parents with alcohol problems. Methods: A total of 82 university students (56 women and 22 men, average age 25) with at least one parent with alcohol problems were included. The students were randomly assigned to one of three programs: (i) alcohol intervention program, (ii) coping intervention program, and (iii) combination program. All programs were manual based and individually implemented during two 2-h sessions, 4 weeks apart. This assessment contained both a face-to-face interview and six self-completion questionnaires; AUDIT, SIP, EBAC, coping with parents' abuse questionnaire, SCL-90 and ISSI. Follow-up interviews were conducted after 1 year. Results: All participants finished the baseline assessment, accepted and completed the intervention, while 95% of the students completed the 12-month follow-up assessment. The two groups that received alcohol intervention improved their drinking pattern significantly more than the group that did not receive alcohol intervention [change of standardized scores -0.27 (CI -0.53 to -0.03)]. The groups receiving coping intervention did not differ from the group not receiving coping intervention concerning their ability to cope with their parents' alcohol problems. Nor did they differ regarding changes in their own mental health or in their social interaction capacity. Conclusion: The intervention improved drinking patterns in adult children of alcoholics.

An investigation into parent perceptions of the needs of siblings of children with cancer

Sidhu, Reena, Passmore, Anne, Baker, D. (2005)

Although more is understood about childhood cancer's impact on the often forgotten siblings in the family, developing empirically tested interventions that support positive health outcomes is only just emerging. As family support is of key importance in sibling adjustment, further knowledge about their needs is crucial to the development of effective interventions. This investigation focused on examining parental perceptions regarding the concerns and issues for siblings of children with cancer and explored what support is helpful. Focus group methods were used to gather the data with probe questions developed from the literature and from clinical experience. Emergent topics generated were further analyzed using content analysis with 3 major topics identified: the universality of losses arising from the illness experience, behavioral challenges and adaptation, and parent-sibling communication. Parents also discussed helpful interventions. These are described and discussed in relation to the literature. The information obtained will contribute to developing interventions for siblings, specifically to produce a protocol for a therapeutic peer-support camp.

An outcome study of a time-limited group intervention program for bereaved children

Wilson, D. L. (1995)

Akad. Avhandling

Bereaved children are a hidden population. Although little is known about the experience of loss, grief and mourning in children, the literature suggested that, without successful intervention, irreparable harm to the child's cognitive, affective and behavioral functioning can result (Arthur & Kemme, 1964; Bendiksen & Roberts, 1975; Birtchnell, 1969; Bowlby, 1961; Brown, 1961; Gray, 1988). The present study evaluated treatment outcome of a time-limited, Children's Bereavement Program as measured by the Louisville Behavior Checklist, and the Revised-Children's Manifest Anxiety Scale. Subjects included children between the ages of 4-12 who lost a significant other to death. A pretest, posttest, follow-up, repeated measure, control group design (Campbell & Stanley, 1963) was used in the study. It was predicted that, compared to the controls, the experimental group would evidence at posttest and follow-up a reduction in grief induced anxiety and behavioral problems as a result of treatment. No significant differences were found between experimental and control groups on either instrument. However, significant differences were found for combined groups across time periods on ten out of fourteen subscales of the Louisville Behavior Checklist. Findings suggested that both the experimental and control groups evidenced a lessening of reported symptoms related to grieving at posttest and follow-up.

Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study

Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin (2020)

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study

Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin (2020)

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

Anhörig - omsorg och stöd

Johansson, L. (2007)

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre

Anhörig - omsorg och stöd

Johansson, L. (2007)

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.

Anhörig - omsorg och stöd

Johansson, L. (2007)

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.

Anhörig i nöd och lust

Johansson L. (2012)

Den här boken vänder sig till dig som vårdar, stödjer eller hjälper din make eller maka, partner, dina barn, syskon, en förälder eller någon annan närstående.
Förhoppningsvis ska den guida dig till att efter förmåga, förutsättningar och med stöd och hjälp finna balans mellan att hjälpa andra och livet i övrigt.
Budskapet är att du ska tänka på dig själv, både för ditt eget bästa och för den du hjälper.
För att kunna hjälpa andra måste också du själv få hjälp.

Anhörig i nöd och lust

Johansson, L. (2012)

Den här boken vänder sig till dig som vårdar, stödjer eller hjälper din make eller maka, partner, dina barn, syskon, en förälder eller någon annan närstående. Förhoppningsvis ska den guida dig till att efter förmåga, förutsättningar och med stöd och hjälp finna balans mellan att hjälpa andra och livet i övrigt. Budskapet är att du ska tänka på dig själv, både för ditt eget bästa och för den du hjälper. För att kunna hjälpa andra måste också du själv få hjälp.

Anhöriga som ger insatser till närstående med stroke. En kunskapsöversikt som beskriver olika stödprogram för anhöriga. 2016:2

Månsson Lexell Eva (2016)

På senare år har olika typer av stödprogram utvecklats, riktade till anhöriga som vårdar, hjälper eller ger stöd till personer med stroke. Det finns dock ingen konsensus kring vilket innehåll stödprogrammen bör ha, om en viss typ av stödprogram är mer effektiva och bör rekommenderas före andra eller om det saknas en viss typ av stödprogram. Syftet med denna kunskapsöversikt var därför att identifiera och presentera relevant litteratur som beskriver stödprogram riktade till anhöriga, som på olika sätt ger stödinsatser till vuxna personer med stroke, samt stödprogrammens betydelse och eventuell effekt för anhöriga. Syftet var också att ge rekommendationer för insatser inom vård och omsorg och för framtida forskning.

Anhöriga som ger omsorg till närstående : omfattning och konsekvenser

Socialstyrelsen (2012)

Omsorg människor emellan, det vill säga vård, hjälp eller stöd som ges till närstående på grund av sjukdom, funktionsnedsättning eller hög ålder, utgör en självklar del av livet för de allra flesta. Att ge omsorg kan handla om allt från att hjälpa med praktiska sysslor, ekonomi, kontakt med vård och omsorg, personlig omvårdnad, tillsyn, stimulans och umgänge. Den här rapporten presenterar resultaten av en befolkningsstudie med fokus uteslutande på omsorgsgivarens perspektiv som genomförts av Socialstyrelsen på uppdrag av regeringen. Studien genomfördes som en postenkät till ett slumpmässigt urval om cirka 15 000 individer i befolkningen, 18 år och äldre, under början av 2012. Studien belyser hur många som ger omsorg och till vem. Den beskriver också olika former av omsorg som ges och vad detta får för konsekvenser för omsorgsgivarens hälsa, sociala relationer, ekonomi och möjligheter att arbeta. Slutligen beskriver den erfarenheter av och förväntningarna på sjukvårdens och socialtjänstens stöd till omsorgsgivare.

Anhöriga som ger omsorg till närstående. Fördjupad studie av omfattning och konsekvenser

Socialstyrelsen (2014)

De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.

Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga.
I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det.
Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten.
Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete.
För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare.
Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.

Anhöriga som kombinerar förvärvsarbete och anhörigomsorg

Sand, Ann-Britt (2010)

Internationella forskningsresultat visar att ett omfattande omsorgsansvar har en negativ påverkan på arbetslivet. I denna kunskapsöversikt ges förslag på stöd och hjälp som efterfrågas av anhöriga som kombinerar anhörigomsorg och förvärvsarbete.

Anhöriga som vårdar eller stödjer närstående äldre personer : underlag till en nationell strategi

Socialstyrelsen (2020)

Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov

Anhöriga till personer med psykisk sjukdom eller funktionsnedsättning - en resurs i behov av stöd. Fokus på anhöriga till äldre nr 17

Ewertzon, M. (2010)

Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänstlagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon – doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna – beskriver här de anhörigas situation och resonerar
kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen

Anhöriga till vuxna personer med psykisk ohälsa: En kunskapsöversikt om betydelsen av stöd. Kunskapsöversikt 2015:1

Ewertzon, M. (2015)

Att vara anhörig till en person med psykisk ohälsa kan vara förenat med omfattande svå-
righeter, men också med empati och kärlek till att vilja hjälpa och stödja sin närstående.
Kontakt och stöd från personal inom vård och omsorg och andra anhöriga med liknande
erfarenheter kan vara betydelsefullt för att hantera situationen. Trots goda intentioner i
svenska styrdokument framkommer i flera utredningar och forskning, att anhörigas behov
av kontakt och anpassat stöd från vård och omsorg inte alla gånger tillgodoses i tillräcklig
omfattning.
Syftet med föreliggande kunskapsöversikt är därför att presentera exempel på stödjande
insatser för vuxna anhöriga (18 år eller äldre), till vuxna personer (18 år eller äldre) med
psykisk ohälsa och den dokumenterade betydelse och/eller effekt som stödet kan ha för
anhöriga. Det skall tilläggas att syftet inte är att jämföra eller dra slutsatser om vilka
stödinsatser som är mest betydelsefulla eller effektiva.
Litteratursökning av svensk och internationell forskning och utvecklingsarbeten genomfördes
i olika databaser. Sökningen omfattade aspekter som: psykisk ohälsa, anhöriga,
stöd och betydelse samt effekt. Efter en första granskning av 854 studier bedömdes slutligen
54 vara relevanta för kunskapsöversiktens syfte och frågeställningar. Av dessa har 18
studier genomförts i Sverige. Studierna är genomförda med såväl kvantitativa som kvalitativa
metoder.
Vid tematisk analys av studierna framkom två huvudområden. Det ena omfattade stöd
från personal inom hälso- och sjukvård och socialtjänst. Det delades in i sex delområden;
psykopedagogiska interventioner, telefonrådgivning i grupp, webbaserat stöd, samtal och
bemötande, delaktighet i vård och omsorg, samt vård och omsorg till den närstående med
psykisk ohälsa. Det andra huvudområdet omfattade stöd från personer med egen erfarenhet
som anhörig till person med psykisk ohälsa, omfattande tre delområden; ömsesidiga
stödgrupper, individuella samtalsträffar och stöd via telefon.
Insatserna hade genomförts i grupp eller individuellt likväl som direkt eller indirekt stöd,
där indirekt stöd främst riktades till den närstående med psykisk ohälsa, vilket i sin tur
kan underlätta situationen för anhöriga. Innehållet i insatserna hade stora variationer.
Några återkommande aspekter var information, utbildning, rådgivning, problemlösning
och stresshantering, delaktighet i vård och omsorg, bemötande från personal och erfarenhetsutbyte
med andra anhöriga. Resultatet indikerar att stödinsatserna på många olika
sätt kan vara betydelsefulla för anhöriga själva, såväl fysiskt, psykiskt som socialt, men
också av betydelse för att hantera situationen och på så sätt stödja sin närstående med
psykisk ohälsa. Psykopedagogiska interventioner och ömsesidiga stödgrupper som leds av
andra anhöriga var de insatser som omfattade flest studier, såväl systematiska forsknings-
översikter som enskilda studier. Resultaten av dessa indikerade minskad belastning, ökad
kunskap om sjukdomen och behandling, samt ökad möjlighet att hantera situationen.
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Några studier indikerade också att inställningen till den närstående med psykisk ohälsa
hade förändrats, samt att socialt stöd i grupp var betydelsefullt för att minska social isolering
och känsla av ensamhet. Utvärderingarna hade i nästan alla studier genomförts inom
ett år efter insatsen avslutats, vilket medför betydande begränsningar i vilken långtidseffekt
insatserna haft. Insatserna genomfördes av olika organisationer och personer, som
landsting, kommun, intresseorganisationer, privat och projekt under avgränsad tid. I
några studier genomfördes de i samarbete mellan flera organisationer.
Resultatet i kunskapsöversikten är inte en total kartläggning av forskning som genomförts
om stöd för anhöriga till personer med psykisk ohälsa. Det är exempel på olika former av
stöd och där det finns utvärdering som beskriver dess betydelse. Det finns säkerligen fler
studier som beskriver detta område som inte inkluderats i resultatet, både i Sverige och
internationellt. Allt som framkommer i resultatet är inte överförbart eller generaliserbart
i andra sammanhang än där det genomförts. Detta på grund av metodologiska begränsningar
i vissa studier eller att det finns geografiska, kulturella eller andra aspekter som
begränsar resultatens överförbarhet.
Utifrån resultatet av kunskapsöversikten och från anhörigas erfarenheter i andra sammanhang,
kan följande områden ses som betydelsefulla att beakta vid förändring och
utveckling av stöd till anhöriga:
➢ Information på samhällsnivå; information om var vård för personer med psykisk
ohälsa och stöd för anhöriga finns att tillgå.
➢ Strukturerade former av anhörigstöd; olika former av
psykopedagogiska insatser, ömsesidiga stödgrupper, webbaserat
stöd och individuellt samtalsstöd.
➢ Bemötande från personal inom vård och omsorg.
➢ Anhörigas delaktighet i vård och omsorg.
➢ Beaktande av sekretessen ur anhörigas och deras närståendes
perspektiv såväl som ur vård- och omsorgspersonals perspektiv.
➢ Vård och omsorg av den närstående som också beaktar anhörigas behov av trygghet.
➢ Att utveckling sker i nära samarbete mellan vård och omsorg, samt intresseorganisationer
så att allas kompetens och erfarenhet tas tillvara.
Förhoppningen är att dessa exempel på stöd som framkommit i kunskapsöversikten kan
bidra till kunskap och inspiration för utveckling och förändring av stödjande insatser för
vuxna anhöriga som har en vuxen närstående med psykisk ohälsa. Det är också betydelsefullt
att det ges förutsättningar till fortsatt dokumentation och utvärdering av insatser
som andra kan ta del av.

Anhöriga till äldre personer med psykisk ohälsa. Kunskapsöversikt 2016:1

Ericsson Iréne, Persson Marie, Hanson Elizabeth (2016)

I denna kunskapsöversikt är vuxna anhöriga till en äldre person med psykisk ohälsa fokus. Eftersom psykisk ohälsa hos äldre skiljer sig från psykisk ohälsa hos yngre vuxna behöver situationen för dessa anhöriga beskrivas och deras specifika behov och stöd lyftas fram. Kunskapsöversikten inleds med en bakgrund till psykisk ohälsa hos äldre. Därefter följer en kort beskrivning av vård och omsorg för äldre med psykisk ohälsa, vilket är ett komplext område med många olika vårdaktörer. Slutligen presenteras forskning om anhöriga till vuxna med psykisk ohälsa och anhöriga till äldre.

Anhöriga äldre angår alla!, Kunskapsöversikt 2014:3

Jegermalm, M., Malmberg, B., & Sundström, G. (2014)

Anhörigomsorg är del av en komplex väv med olika nivåer, individuella, familjemässiga
och övergripande samhälleliga, där åtminstone de senare har begränsade
resurser. Denna rapport presenterar och diskuterar kunskapsläget inom
svensk och internationell forskning om anhöriga till äldre. Vi sätter den svenska
anhörigomsorgen i ett större sammanhang genom resonemang om demografiska
förutsättningar, historiska tillbakablickar och internationella utblickar. Nutid
belyses med aktuella undersökningar och vi tror att framtiden kan klaras tack
vare den allt större överlappning vi redan ser mellan många olika former av
hjälp, service, omsorg och vård. Vi ställer frågan om dessa mönster kanske förbises
i de ofta dystra, rent demografisk-ekonomiska framskrivningarna.
Rapporten redovisar många svenska undersökningar av anhörigomsorg, både
i befolkningen i stort och bland äldre. Det förefaller klart att det skett en faktisk
ökning av anhörigomsorgens omfattning från 1990-talet och början av 2000-
talet, något som flera studier visar. Resultat från en europeisk undersökning med
gemensamma frågor och svarsalternativ tyder på att anhörigomsorg är vanligare
i Nordeuropa än i Sydeuropa vilket nog strider mot gängse föreställningar.
Kanske är det i Norden vanligare att vara hjälpgivare men inte med lika omfattande
engagemang eller lika länge och man bor sällan tillsammans. Då fördelas
nog omsorgen på fler händer. I Sverige angav mindre än 1 procent att de gav
omsorg på heltid, i Spanien 5 procent. Sammantaget har, i Sverige liksom i
övriga Europa, mer än 4 av 10 i befolkningen en aktuell eller tidigare personlig
erfarenhet av att ge omsorg, och på befolkningsnivå är anhörigomsorgen klart
större än den offentliga. De flesta svenska studier visar att det är ungefär lika
vanligt bland kvinnor och män att vara givare av anhörigomsorg. Kvinnor ger
dock oftare personlig omvårdnad och de ger fler timmar omsorg än männen.
De flesta omsorgsgivare ger ganska få hjälptimmar, men timinsatserna ökar
med stigande ålder och är högst bland de äldsta. I genomsnitt ger omkring 30
procent av omsorgsgivarna daglig hjälp, men den andelen stiger till nästan 40
procent för anhörigvårdare i 65–80 årsåldern och till 80 procent för dem som är
ännu äldre. Äldre utgör således 30 procent av alla som ger omsorg, oftast till
andra äldre, men utför ungefär 4 av 10 omsorgstimmar. Äldre personer är inte
bara mottagare av omsorg utan minst lika ofta också givare.
De flesta givare av anhörigomsorg ger "lättare" former av insatser (skjutsning,
passning, tillsyn etc.), insatser som många gånger säkerligen är viktiga och kan
vara avgörande för mottagaren. Det är viktigt att se det stora spektret av anhörigomsorg
och att det också finns grupper av anhöriga (ofta äldre personer) som
gör omfattande insatser som kan påverka såväl egen hälsa som arbetsliv. Vid
små hjälpbehov – fallet för de flesta – får man lite hjälp främst av anhöriga, vid
större behov mer hjälp och då av både anhöriga och av kommunen. Delat ansvar
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är vanligt och även vad omsorgsgivare och mottagare önskar. Få önskar bära
ansvaret ensamma och få önskar att ansvaret helt ligger på det offentliga.
Historiskt utgör barn och andra anhöriga en viss trygghet på ålderdomen,
något som inte tillhör det förflutna, utan snarare kommer att få större betydelse
framöver. Anledningen är demografisk: allt fler har nära anhöriga i form av en
egen familj. Familjens relativa betydelse har ökat, inte minskat som man ibland
föreställer sig. Detta accentueras av att den offentliga omsorgen visserligen är väl
utbyggd i Sverige, men tycks ha nått gränsen för vad den kan uträtta, praktiskt
och finansiellt. Anhörigomsorgen har även socialpolitiska aspekter. Den som är
eller varit anhörigvårdare vill helst inte själv vara mottagare av omfattande anhörigvård,
utan hellre få huvuddelen av omsorgen från det offentliga. Man kan
nog förutse ännu strängare ransonering av offentliga tjänster i framtiden, där
anhöriga och marknadsbaserade tjänster är alternativen, möjligen tillsammans
med växande insatser från ideella organisationer.

Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet

Wadefjord, Anna, Gustavsson, Marita, Stenmarck, Mats & Kjellin, Lars (2009)

Tidigare forskning har visat att psykiska sjukdomar har stor inverkan inte bara på de personer som drabbas utan även på deras anhöriga, och att många anhöriga inte upplever sig vara tillräckligt delaktiga i den psykiatriska vården. Få skillnader i dessa avseenden har funnits mellan anhöriga till frivilligt vårdade och anhöriga till tvångsvårdade patienter. Denna rapport redovisar några resultat från en anhörigstudie som genomförts under perioden augusti 2004 till februari 2006 i Örebro län som en del i en större EU-finansierad europeisk studie av psykiatrisk tvångsvård, det så kallade EUNOMIA-projektet.

Syftet med Örebro-delen av EUNOMIA-projektets anhörigstudie var att undersöka hur anhöriga till frivilligt vårdade och tvångsvårdade patienter uppfattar orsak till intagning, förekomst av tvång vid intagning, bemötande av och hjälp till patienten under vården, bemö-tande av anhöriga, anhörigas delaktighet i vården samt patientens prognos.

Fyrtiofyra anhöriga till personer som intagits i psykiatrisk slutenvård i Örebro län, och som inkluderats i EUNOMIA-projektets patientstudie, tillfrågades om deltagande. Av dessa tackade 36 personer (82 %) ja till deltagande i studien, varav 25 kvinnor och 11 män. De som intervjuades var mammor, pappor, vuxna barn, syskon, make, maka eller partner, andra släktingar och närstående av annat slag. Tjugotvå av de intervjuade var närstående till frivilligt vårdade och 14 anhöriga till tvångsvårdade patienter.

Anhörigintervjun genomfördes inom fyra veckor från det att patienten skrevs in på psykiatrisk vårdavdelning. Frågorna handlade om den anhöriges relation till patienten, uppfattning om patientens möjlighet att återfå sin psykiska hälsa, bedömning av graden av tvång vid intagning, uppfattning om varför patienten blev intagen, vårdtillfredsställelse, samt om bemötande och delaktighet i och dialog med den psykiatriska vården.

Den enligt de anhöriga vanligast förekommande orsaken till att patienten blev intagen var att det förelåg allvarlig fara för eller hot mot patientens hälsa samt att patienten var oförmögen att ta hand om sig själv. Bedömningarna av vilken grad av tvång patienterna upplevde vid intagningen visade på samstämmighet mellan patienter och anhöriga. Däremot var det en större andel bland de svarande närstående än bland patienterna som ansåg att patientens behandlare eller kontaktperson förstod patienten och var engagerad i patientens behandling och vård, att patienten blev respekterad och väl behandlad på avdelningen, samt att behandlingen och vården varit till hjälp för patienten. Många anhöriga kunde tänka sig ett tvångsomhändertagande i det fall patienten skulle få samma problem igen och inte skulle vilja läggas in frivilligt.

Över 80 procent av de närstående kände sig "som vanligt", likvärdiga eller respekterade i sina kontakter med psykiatrin. Nästan 40 procent uppgav att de inte kände sig tillräckligt delaktiga i patientens vård och behandling. De som hade haft kontakt med psykiatrin under det senaste året kände sig bättre bemötta och mer delaktiga i patientens inläggning, vård och behandling än de som inte hade haft någon kontakt. Över hälften upplevde inte att de haft någon dialog med personal från psykiatrin. Svaren uttrycker stor variation med både stark kritik mot och stor tillfredsställelse med kontakterna med psykiatrin, liksom att inte alla an-höriga vill ha någon omfattande sådan kontakt.

En stor del av de närstående uttryckte optimism beträffande patientens prognos. Många trodde att deras sjuke son, dotter, förälder, make, maka, sambo, partner, släkting eller vän helt eller delvis skulle återfå sin psykiska hälsa, framför allt bland anhöriga till patienter som inte varit sjuka sedan så lång tid tillbaka.

Anhörigas insatser efter stroke är omfattande och ofta livslånga. Följderna för anhöriga behöver uppmärksammas mer, visar enkätstudie

Hulter Åsberg, K., Söderholm, A., Bjarne, D., & Johansson, L. (2014)

Studiens syfte var att beskriva konsekvenserna för anhöriga när en närstående insjuknat i stroke. Drygt 11 000 anhöriga svarade på Riks-Strokes enkäter 2010–2012.

Drygt hälften var vårdgivande anhöriga vars liv förändrats genom bundenhet till hemmet och omfattande hjälpinsatser.

Många under 65 år hade gått ner i arbetstid eller lämnat arbetslivet på grund av vårduppgiften. Denna grupp hade minst kunskap om vart de kunde vända sig för att få råd och stöd.

Anhörigas roll har blivit allt viktigare när personer med funktionsnedsättning förväntas bo kvar hemma.

Vårdgivande anhöriga behöver återkommande stöd för sin ofta livslånga vårdinsats och bör uppmärksammas också i andra kvalitetsregister.

Anhörigas uppfattningar om bostad med särskild service enligt LSS. Boendeprojektet, delrapport 17.

Carlbom, A., & Östman, M. (2007)

Sammanfattningsvis kan man säga att LSS-boende, som uttrycks av
informanterna i den här studien, har varit positivt för den boende själv och alla
som kommit i kontakt med honom eller henne. Det är tydligt i informanternas
berättelser att de och deras anhöriga, i samband med att LSS-boendet blivit
verklighet, har fått till en förändring av hela den sociala kontext de levde och
lever i. Man kan sammanfatta LSS-boendets sociala och psykologiska effekter i
några konkreta punkter för de anhöriga respektive de boende:
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De anhöriga
De anhöriga befrias från den oro för den boendes välmående och praktiska
omständigheter som präglade vardagslivet före LSS-boendet. Detta boende
medför alltså en högre grad av vardaglig trygghet. De anhöriga får också en
avlastning av den emotionella anspänning det innebär att ha en familjemedlem
som lider av psykisk ohälsa. Dessutom erhåller de ett delat ansvar för den
familjebörda det innebär att ha en familjemedlem som lider av psykisk ohälsa. De
blir också avlastade det sociala stigma det kan innebära att ha en familjemedlem
som har ett psykiskt funktionshinder.
De boende
Den boende erhåller en struktur i vardagslivet på LSS-boendet som saknades vid
det tidigare boendet. Här finns också möjlighet att få hjälp med den personliga
omvårdnaden och att upprätta relationer specialister av olika slag, bland annat
läkare som kan övervaka eventuell medicinering. Den boende blir också avlastad
det sociala stigma som tidigare präglade relationen till framförallt grannar och
fastighetsägare.
Den generella slutsats som kan dras i den här studien är att denna form av boende
erbjuder en förhöjd livskvalité för samtliga parter. Sammantaget verkar alltså
denna boendeform gynna den psykiska hälsan för alla och kan därmed sägas bidra
till att hela samhället på ett eller annat sätt gynnas.

Anhörigas upplevelser av personalens stöd i hemtjänst och på särskilt boende

Ljungbeck, B. (2012)

Bakgrund: Mer och mer forskning har tillägnats anhörigstöd och kunskap om vilket stöd anhöriga behöver har växt fram. Studier visar att det uppstår onödiga konflikter mellan personal och anhöriga inom äldreomsorgen på grund av bristande kommunikation och förståelse för varandra. Sedan 2009 är personal skyldiga att erbjuda anhöriga stöd vilket har lett till behov av att utveckla modeller för hur personal och anhöriga kan mötas. Anhörigstöd i Partnerskap är en sådan modell. Syfte: Syftet med studien var att beskriva vilka sorters stöd som anhöriga i hemtjänst och på särskilt boende uttrycker att de behöver av personalen. Ett ytterligare syfte var att belysa om de anhöriga upplevde några förändringar i stödet efter att personalen genomgått en utbildning, "Anhörigstöd i Partnerskap". Metod: Nio semistrukturerade intervjuer har genomförts med anhöriga till äldre på särskilt boende och i hemtjänst. Intervjuerna har analyserats med en latent innehållsanalys. Resultat: I ett gott anhörigstöd ingick att veta att den äldre hade det bra, att anhöriga blev sedda av personalen, att anhöriga fick stöd av personalen i beslutsfattande och att anhöriga fick stöd av personalen i att våga släppa taget och kunna slappna av. Endast smärre förändringar efter utbildningen noterades. Slutsats: Flera viktiga aspekter av ett gott anhörigstöd har framkommit, vissa av dessa aspekter var tillgodosedda medan andra inte var det. Personalen har genom utbildningen fått verktyg för att ytterligare utveckla anhörigstödet. Möjligheten att lyckas bedöms som stor då intresset och engagemanget för att utveckla stödet till anhöriga finns bland både personal och chefer.

Anticipatory Grief Among Close Relatives of Patients in Hospice and Palliative Wards

Johansson, Å. K. and A. Grimby (2012)

A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.

Anticipatory Grief Among Close Relatives of Persons With Dementia in Comparison With Close Relatives of Patients With Cancer

Johansson, Å. K., Sundh, V., Wijk, H., & Grimby, A. (2012)

Close relatives of persons with dementia self-reported reactions on the Anticipatory Grief Scale (AGS), were observed by nurses (Study I), and compared with relatives of cancer patients in a study using the same methodology (Study II). Study I showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The ability to cope was, however, reported high. Self-assessments and nurses' observations did not always converge, e.g. for the acceptance of the illness. The reactions of the relatives in the dementia and the cancer groups showed more similarities than dissimilarities. However, the higher number of responding spouses in the cancer group may have influenced the outcome.

Antologin: Att se barn som anhöriga - om relationer, interventioner och omsorgsansvar

Järkestig Berggren Ulrika, Magnusson Lennart, Hanson Elizabeth redaktörer (2015)

Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderråriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbat föräldrar eller syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
I denna antologi försöker forskare som deltar i eller är inbjudna till det svenska forskarnätverket "Barn som anhöriga" att utifrån aktuell forskning undersöka, beskriva och förklara innebörden i att barn är anhöriga. Olika teman lygfs såsom barns positoioner i familjen där utsatthet och beroende i relation till föräldrar beskrivs men också barns aktiva agerande i relation till föräldrar och syskon belyses.
Ett sådant exempel är när barn blir omsorgsgivare till syskon eller föräldrar, vilket också beskrivs i en internationell utblick. Vidare beskrivs hur många barn som är anhöriga i de sammanhang som hälso- och sjukvårdslagen omfattar och hur det går för dem i skolan. Ett avsnitt tar upp aktuell kunskap om befintliga interventioner för stöd till barn och föräldrar. Även stöd till anhöriga syskon och forskning om om våld i familjen belyses.
Boken vänder sig till studerande på sjuksköterske-, läkar-, socionom- och lärarprogrammet samt övriga proffessionsutbildningar som i sin yrkesverksamhet möter anhöriga barn och deras föräldrar i behov av stöd. Den ä räven avsedd för beslutsfattare, verksamhetsutvecklare, enskilda personer och idéburna organisationer som söker kunskap om barns livsvillkor som anhöriga.

Apelsinträdgården

Roca Ahlgren, Malin (2018)

Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.

Applying the Theory of Motivated Information Management to adult children's discussions of caregiving with aging parents

Fowler, C. and W. A. Afifi (2011)

Adult children are perhaps the most important source of eldercare for aging parents. Unfortunately, they rarely discuss potential eldercare arrangements with their parents prior to adopting a caregiving role, which may make adapting to the parent's transition to dependency all the more challenging. The Theory of Motivated Information Management (TMIM) is a social-psychological framework that has had success predicting information-seeking decisions about health issues. As such, it served as the theoretical basis for examining adult children's pursuit of information from their elderly parents about caregiving preferences. In addition, this study serves as the first empirical test of a revised version of the TMIM, with an expanded treatment of the role played by emotion. The results of an over-time study attest to the utility of the revised TMIM predictions in this context, and offer insight into the factors that predict adult children's decision to discuss caregiving with their parents.

Approaching the prevalence of the full spectrum of fetal alcohol spectrum disorders in a South African population-based study

May PA, Blankenship J, Marais AS, Gossage JP, Kalberg WO, Barnard R, De Vries M, Robinson LK, Adnams CM, Buckley D, Manning M, Jones KL, Parry C, Hoyme HE, Seedat S. (2013)

BACKGROUND:
The prevalence and characteristics of fetal alcohol spectrum disorders (FASD) were determined in this fourth study of first-grade children in a South African community.
METHODS:
Active case ascertainment methods were employed among 747 first-grade pupils. The detailed characteristics of children within the continuum of FASD are contrasted with randomly selected, normal controls on (i) physical growth and dysmorphology; (ii) cognitive/behavioral characteristics; and (iii) maternal risk factors.
RESULTS:
The rates of specific diagnoses within the FASD spectrum continue to be among the highest reported in any community in the world. The prevalence (per 1,000) is as follows: fetal alcohol syndrome (FAS)-59.3 to 91.0; partial fetal alcohol syndrome (PFAS)-45.3 to 69.6; and alcohol-related neurodevelopmental disorder (ARND)-30.5 to 46.8. The overall rate of FASD is therefore 135.1 to 207.5 per 1,000 (or 13.6 to 20.9%). Clinical profiles of the physical and cognitive/behavioral traits of children with a specific FASD diagnosis and controls are provided for understanding the full spectrum of FASD in a community. The spectral effect is evident in the characteristics of the diagnostic groups and summarized by the total (mean) dysmorphology scores of the children: FAS = 18.9; PFAS = 14.3; ARND = 12.2; and normal controls, alcohol exposed = 8.2 and unexposed = 7.1. Documented drinking during pregnancy is significantly correlated with verbal (r = -0.253) and nonverbal ability (r = -0.265), negative behaviors (r = 0.203), and total dysmorphology score (r = 0.431). Other measures of drinking during pregnancy are significantly associated with FASD, including binge drinking as low as 3 drinks per episode on 2 days of the week.
CONCLUSIONS:
High rates of specific diagnoses within FASD were well documented in this new cohort of children. FASD persists in this community. The data reflect an increased ability to provide accurate and discriminating diagnoses throughout the continuum of FASD.

Are Children of Holocaust Survivors Less Well- Adapted? A Meta-Analytic Investigation of Secondary Traumatization

Van IJzendoorn, M. H. (2003)

H. Keilson (1979) coined the term "sequential traumatization" for the accumulation of traumatic stresses confronting the Holocaust survivors before, during, and after the war. A central question is whether survivors were able to raise their children without transmitting the traumas of their past. Through a series of meta-analyses on 32 samples involving 4,418 participants, we tested the hypothesis of secondary traumatization in Holocaust survivor families. In the set of adequately designed nonclinical studies, no evidence for the influence of the parents' traumatic Holocaust experiences on their children was found. Secondary traumatization emerged only in studies on clinical participants, who were stressed for other reasons. A stress-diathesis model is used to interpret the absence of secondary traumatization in nonclinical offspring of Holocaust survivors.

Are parental ADHD problems associated with a more severe clinical presentation and greater family adversity in children with ADHD?

Agha, S. S., Zammit, S., Thapar, A., & Langley, K. (2013)

Although Attention Deficit Hyperactivity Disorder (ADHD) is recognised to be a familial and heritable disorder, little is known about the broader family characteristics of having a parent with ADHD problems. The main aim of this study was to investigate the relationship between parent ADHD problems, child clinical presentation and family functioning in a sample of children with ADHD. The sample consisted of 570 children with ADHD. Child psychopathology was assessed using a semi-structured diagnostic interview. Questionnaires were used to assess ADHD in the parents (childhood and current symptoms), family environment and mother/father-child relationship. Parental ADHD problems were associated with a range of adverse clinical outcomes in children with no difference in effects for mothers with ADHD problems compared to fathers with ADHD problems. Levels of maternal hostility were higher in families where mothers had ADHD problems, but reduced where fathers had ADHD problems. Parental ADHD problems index higher risk for more severe clinical presentation of ADHD in children and higher levels of family conflict (where there are maternal but not paternal ADHD problems). This study highlights that children with more severe behavioural symptoms are more likely to have a parent with persistent ADHD which has important implications when considering treatment and intervention strategies.

Are the ICF activity and participation dimensions distinct?

Jette AM, Haley SM, Kooyoomjian JT. (2003)

Objective: To test the hypothesis that distinct Activity and
Participation dimensions of the International Classification
of Functioning, Disability, and Health could be identified
using physical functioning items drawn from the Late Life
Function and Disability Instrument.
Design: A cross-sectional, survey design was employed.
Subjects: The sample comprised 150 community-dwelling
adults aged 60 years and older.
Methods: Exploratory factor analysis was used to identify
interpretable dimensions underlying 48 physical functioning
questionnaire items.
Results: Findings revealed that one conceptual dimension
underlying these physical functioning items was not suffi-
cient to adequately explain the data (X2 = 2383; p  0.0001).
A subsequent solution produced 3 distinct, interpretable
factors that accounted for 61.1% of the variance; they were
labeled: Mobility Activities (24.4%), Daily Activities
(24.3%), and Social/Participation (12.4%). All 3 factors
achieved high internal consistency with coefficient alphas of
0.90 or above.
Conclusion: Within physical functioning, distinct concepts
were identified that conformed to the dimensions of Activity
and Participation as proposed in the ICF. We believe this is
the first empirical evidence of separate Activity and
Participation dimensions within the International Classification
of Functioning, Disability, and Health classification.

Article: Specialized substance abuse treatment for women and their children. An analysis of program design

Uziel-Miller ND, Lyons JS (2000)

In the present study, 36 specialized substance abuse treatment programs for women and their children were identified and chosen for review. These programs provide a wide range of services including substance abuse, mental health and medical treatment, life skills training (i.e. vocational and parenting training), and social services (i.e. child care and transportation). A cluster analysis was conducted, and three distinct patterns of program design were identified. Results suggest that programs vary considerably regarding the extent to which comprehensive services are provided and to whom they are offered. Many programs that appear to be comprehensive fail to provide the full range of services to all those who need them. In particular, many programs for pregnant women seem to focus almost exclusively on pregnancy-related issues. As such, specialized substance abuse treatment for women may be at risk for becoming too specialized. Recommendations are made for future substance-related program planning for women and their children.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy.

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Assessing Family Caregiver Needs

AARP Public Policy Institute (2012)

Caregiver assessment is a systematic process of gathering information about a
caregiving situation to identify the specific problems, needs, strengths, and resources
of the family caregiver, as well as the ability of the caregiver to contribute to the needs
of the care recipient. Effectively assessing and addressing caregiver needs can maintain
the health and well-being of caregivers, sustain their ability to provide care, prevent or
postpone nursing home placement, and produce better outcomes for the care recipient.

Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Joseph S, Becker S, Becker F, Regel S. (2009)

BACKGROUND: Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects. METHOD: Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited. RESULTS: Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported. CONCLUSION: The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.

Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory

Östensjö S, Bjorbäkmo W, Brogren Carlberg E, Völlestad NK. (2006)

BACKGROUND:
Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements.
PURPOSE:
To examine the conceptual basis and the content of the PEDI using the ICF.
METHOD:
Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached.
RESULTS:
The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequently use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment.
CONCLUSIONS:
Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood.

Manual for the ASEBA Preschool Forms and Profiles

Achenbach TM, Rescorla LA. (2000)

The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.

Mapping images to objects by young adults with cognitive disabilities

Carmien, S. & Wohldman E. (2008)

How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.

Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.

Meagher G, Szebehely M, editors (2013)

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.

Gosman-Hedstrom G, Dahlin-Ivanoff S. (2012)


INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans

Hugemark, Agneta (2004)

This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.

Negotiating family responsibilities

Finch, J. and J. Mason (1993)

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review

Nock, M. K., & Ferriter, C. (2005)

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

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

Drawing on data generated from a two-year ethnographic study of the Rocky Centre (achildhood bereavement organisation in the UK), this article explores the positive changes and themes of posttraumatic growth experienced by parentally bereaved young people. Although the broader study generated data from participant observation, interviews and a documentary analysis, this article focuses specifically on the interviews with 13 young people to identify the themes of posttraumatic growth that emerged from the participants' narratives. Of these, four had been recently bereaved and nine had experienced the death of a parent over 10 years ago. Interviews were transcribed verbatim and analysed for themes that reflected the young people's experiences of growing through grief. Those identified were as follows: positive outlook, gratitude, appreciation of life, living life to the full, and altruism. Each theme isdiscussed in turn, and the implications of the findings for research and practice are addressed.

Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health

Goodman, J. (2004)

BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.

The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults

Goodman, D. W. (2007)

Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.

The coping experiences of carer´s who live with someone who has schizophrenia.

Huang X, Sun F, Yen W, Fu C. (2008)

AIMS AND OBJECTIVES:
The purpose of this study was to understand the coping experiences of carers living with a schizophrenic family member. Our research may be a valuable reference for mental health professionals seeking to improve the quality of care for people with schizophrenia and their carers.
DESIGN:
We employed a qualitative descriptive phenomenological research methodology to understand the coping experiences of carers living with a schizophrenic family member.
METHODS:
Purposive sampling and in-depth, face-to-face interviews were used to collect data. When data saturation was reached, the sample size comprised 10 carers (five men and five women). The interview focused on the carer's coping experience. During the process of data collection and data analyis we established epoches (bracketing) and returned to the reality of the carers' experience to keep the data objective. Narratives were analysed according to Colaizzi's seven steps method.
RESULTS:
The two most commonly used coping mechanisms that emerged from this study were psychological coping strategies (cognitive, behavioural and emotional) and social coping strategies (religious, social and professional support). Furthermore, three factors were found in the study, including low social status, traditional help-seeking behaviours and feelings of shame.
CONCLUSION:
Findings from this study demonstrate the importance of understanding the coping experiences of carers who have a family member with schizophrenia. Further research is needed to identify more important detailed factors that affect the coping strategies of carers. Relevance to clinical practice. Community mental health care professionals need to improve the quality of care for helping carers living with a family member who has schizophrenia. It is important to develop effective coping intervention strategies that help carers cope with the stress and strain of caring for a family member with schizophrenia.

The definition of disability: what is in a name

Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S. (2006)

The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2

The earnings of informal carers: Wage differentials and opportunity costs

Heitmueller A, Inglis K. (2007)

Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.

The economic consequences of autistic spectrum disorder among children in a Swedish municipality

Järbrink, Krister (2007)

In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.

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

Stephenson, J. (2007)

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

The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research

Currier, J.M., Holland, J.M., & Neimeyer, R.A. (2007)

Abstract
Grief therapies with children are becoming increasingly popular in the mental health community. Nonetheless, questions persist about how well these treatments actually help with children's adjustment to the death of a loved one. This study used meta-analytic techniques to evaluate the general effectiveness of bereavement interventions with children. A thorough quantitative review of the existing controlled outcome literature (n = 13) yielded a conclusion akin to earlier reviews of grief therapy with adults, namely that the child grief interventions do not appear to generate the positive outcomes of other professional psychotherapeutic interventions. However, studies that intervened in a time-sensitive manner and those that implemented specific selection criteria produced better outcomes than investigations that did not attend to these factors.

The effectiveness of Talking Mats® with people with intellectual disability

Murphy, J., & Cameron, L. (2008)

People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study involving 48 people at four levels of comprehension was designed to compare the effectiveness of Talking Mats with the individual's main communication method. Thirty of the 48 participants were identified as using Talking Mats effectively. Effective use of Talking Mats was associated with functional comprehension. The study found that scores on all indicators of communication effectiveness were higher when using Talking Mats compared to main communication methods. This study identified that Talking Mats can be an effective communication resource for many people with intellectual difficulty and can help them express their views by increasing both the quantity and quality of information communicated.

The effects of child maltreatment and polymorphisms of the serotonin transporter and dopamine D4 receptor genes on infant attachment and intervention efficacy

CICCHETTI, D., ROGOSCH, F. A. & TOTH, S. L. (2011)

This investigation examined the extent to which polymorphisms of the serotonin transporter linked promoter region (5-HTTLPR) and the dopamine receptor D4 (DRD4) genes differentially influenced the development of attachment security and disorganization in maltreated and nonmaltreated infants at age 13 months, and the extent to which the efficacy of preventive interventions to promote attachment security were influenced by genetic variation. The sample consisted of 106 infants from maltreating families, participating in a randomized control trial evaluating the efficacy of two interventions, child-parent psychotherapy and psychoeducational parenting intervention, and 47 infants from nonmaltreating families. DNA samples were genotyped for polymorphisms of 5-HTTLPR, DRD4 exon III variable number tandem repeat, and DRD4-521. Attachment organization at age 1 and at age 2 was assessed with the Strange Situation for all participants, prior to and following the completion of the interventions. High rates of disorganized attachment were observed in the maltreatment compared to the nonmaltreatment group, and both interventions resulted in increased rates of attachment security at age 2. Genetic variation did not influence improvement in attachment organization among maltreated infants. Among maltreated infants, genetic variation had minimal effect on attachment organization. In contrast, among nonmaltreated infants, 5-HTTLPR and DRD4 polymorphisms influenced attachment security and disorganization at age 2 and the stability of attachment disorganization over time.

The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

Young, Z., Moghaddam, N., & Tickle, A. (2016)

OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.

METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.

RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).

CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.

The iconicity of picture communication symbols for children with English additional language and mild intellectual disability

Dada, S., Huguet, A., & Bornman, J. (2013)

The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.

The impact of hippotherapy on grieving children

Glazer, H.R., Clark, M.D. & Stein, D.S. (2004)

ABSTRACT This article looks at the use of therapeutic riding, or hippotherapy, with children who are mourning the death of a family member. Therapeutic riding is the summer program that is part of the Evergreen support group for grieving school-age children and their families. A qualitative study of the impact of the riding program is presented. The research question was whether the children, parents, and adult volunteer would view the program as encouraging the processing of grief and person development. The following themes in perceived outcomes of the program were identified: confidence, trust, and communication skills. The parents and guardians all described the therapeutic riding as a positive experience. They noted an increase in overall communication, including talk about the deceased, as well as an increase in the child's self-confidence and self-esteem. Success with the horses appeared to be important to these children, who expressed pride and joy in their accomplishments.

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

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

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

The incredible years: Parents, teachers, and children training series

Webster-Stratton C. (2001)

This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.

The NAS EarlyBird Programme: partnerships with parents in early intervention

Shields, J (2001)

Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.

The psychological impact of the intifada on Palestinian children in the occupied West bank and Gaza: an exploratory study

Baker, A. M. (1990)

The mental health of 796 Palestinian children living in the occupied West Bank and Gaza Strip was assessed in terms of reported psychological status and behavioral symptoms. Results, interpreted within the context of the 1987 uprising (Intifada), indicate that exposure to political and military violence may be associated with the onset of conduct problems and fears, although active participation in the conflict may enhance self-esteem and shield children from development of psychological symptoms.

The Relationship Between Violence in the Family of Origin and Dating Violence Among College Students

Gover, A. R., Kaukinen, C., & Fox, K. A. (2008)

Prior research has established that violence in dating relationships is a serious social problem among adolescents and young adults. Exposure to violence during childhood has been linked to dating violence victimization and perpetration. Also known as the intergenerational transmission of violence, the link between violence during childhood and dating violence has traditionally focused on physical violence. This research examines the relationship between experiencing and perpetrating dating violence and exposure to violence in the family of origin. Specifically, the current research examines gender differences in the relationship between exposure to violence during childhood and physical and psychological abuse perpetration and victimization. Data were collected from a sample of approximately 2,500 college students at two southeastern universities. Findings indicate that childhood exposure to violence is a consistent predictor of involvement in relationships characterized by violence for males and females. The implications of the current research on policy are discussed.

The relative efficacy of two levels of a primary care intervention for family members affected by the addiction problem of a close relative: a randomized trial

Copello A, Templeton L, Orford J, Velleman R, Patel A, Moore L, et al. (2009)

OBJECTIVES:
A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative.
DESIGN:
A prospective cluster randomized comparative trial of the two interventions.
SETTING:
A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England.
PARTICIPANTS:
A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks.
MAIN OUTCOME MEASURES:
Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention.
RESULTS:
The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm.
CONCLUSIONS:
A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.

The role of parent training in treatment of preschoolers with ADDH

Pisterman S., Firestone P., McGrath P., Goodman J., Webster I., Mallory R. & Goffin, B. (1992)

Abstract
The efficacy of group parent training was assessed in improving compliance and time on task in preschoolers with attention-deficit disorder with hyperactivity. Positive effects were obtained on measures of child compliance, but not on measures of attention. Parental compliance-management skills and overall style of interaction were also positively affected. The use of parent training for early intervention with ADDH children is discussed.

The sense of security in care--Relatives' Evaluation instrument: its development and presentation

Krevers B, Milberg A (2015)

CONTEXT: Relatives' sense of security in their family members' palliative home
care is important, and a valid and reliable instrument is needed to measure this.
OBJECTIVES: The aim of this article is to report the development, structure, and
psychometric properties of a new instrument, the Sense of Security in
Care--Relatives' Evaluation (SEC-R), in palliative home care.
METHODS: Instrument development was based on a previous study and review of the
literature; 213 relatives (55% women) of patients in palliative home care were
recruited (response rate 73%) and participated in a structured interview based on
a questionnaire. Principal component analysis (PCA) was used to identify
subscales. The construction was tested in correlation with other scales and
questions representing concepts expected to be related to sense of security in
care. RESULTS: The PCA resulted in three subscales, namely care interaction, mastery
and patient situation, which had an explained variance of 53%. Internal
consistency of the subscales ranged from 0.76 to 0.78. The final instrument
comprises 17 items. The scales were associated with the quality-of-care process
and the relatives' situation, perceived health, quality of life, stress, general
sense of security, and general sense of security in care.
CONCLUSION: The SEC-R provides a three-component assessment of palliative home
care settings using valid and reliable scales associated with other concepts. The
SEC-R is a manageable means of assessment that may contribute to quality-of-care
measures and to further research on relatives' sense of security in care.

The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity

Fals-Stewart W, Birchler GR, Kelley ML. (2003)

The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.

Theorethical perspectives on siblings relationships

Whiteman S, Michale S, Soli A. (2011)

Although siblings are a fixture of family life, research on sibling relationships lags behind that on other family relationships. To stimulate interest in sibling research and to serve as a guide for future investigations by family scholars, we review four theoretical psychologically oriented perspectives—(a) psychoanalytic-evolutionary, (b) social psychological, (c) social learning, and (d) family-ecological systems— that can inform research on sibling relationships, including perspectives on the nature and influences on developmental, individual, and group differences in sibling relationships. Given that most research on siblings has focused on childhood and adolescence, our review highlights these developmental periods, but we also incorporate the limited research on adult sibling relationships, including suggestions for future research on this fundamental family relationship.

Time, human agency, and social change: Perspectives on the life course

Elder, G.H. Jr. (1994)

The life course has emerged over the past 30 years as a major research paradigm. Distinctive themes include the relation between human lives and a changing society, the timing of lives, linked or interdependent lives, and human agency. Two lines of research converged in the formation of this paradigm during the 1960s; one was associated with an older "social relationship" tradition that featured intergenerational studies, and the other with more contemporary thinking about age. The emergence of a life course paradigm has been coupled with a notable decline in socialization as a research framework and with its incorporation by other theories. Also, the field has seen an expanding interest in how social change alters people's lives, an enduring perspective of sociological social psychology.

Training care givers of stroke patients: economic evaluation.

Patel A, Knapp M, Evans A, Perez I, Kalra L. (2004)

Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated.

Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers.

Design A single, blind, randomised controlled trial.

Setting Stroke rehabilitation unit.

Subjects 300 stroke patients and their care givers.

Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training.

Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke.

Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers.

Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.

Treatment-seeking young adults from families with alcohol problems. What have they been through? What state are they in?

Mackrill, T., Elklit, A. & Lindgaard, H. (2012)

Aims: This study surveys the childhood experiences of treatment-seeking young adult offspring of problem drinkers (AOPDs) and their psychological state at treatment baseline. Methods: Clients (N=502) entering a Danish nationwide treatment facility for young AOPDS completed the survey. Clients completed the Adult Children of Alcoholics Trauma Inventory, The Family Tree Questionnaire, the CORE–OM 34, Major Depression Inventory, and the Work and Social Adjustment Scale at treatment start. Results: A total of 48% of the clients' mothers and 75% of the clients' fathers were problem drinkers. Both parents were problem drinkers in 25% of cases, and 27% had at least one problem drinking stepparent. Mothers had on average drunk during 11.4 years of the clients' childhood (0–18 years). Fathers had on average drunk during 13.4 years; 46% knew or believed that at least one of their parents suffered from a psychiatric illness; 44% reported physical violence; 63% reported psychological abuse; and 38% had not spoken to anyone about their family's problem. A further 20% had only spoken to a parent or sibling. Conclusions/implications: The study highlights the high degree of variation in AOPD clients' childhood experiences and in their levels of distress, corresponding with studies of non clinical samples. The study offers a bleak image of the extent of parental drinking and of other negative factors in these clients' childhood homes, coupled with the finding that clients have often not spoken to others about their parents' drinking. Mentioning parental drinking to a counsellor is thus a potentially highly significant counselling event, demanding counsellor sensitivity and attention.

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

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

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

Uppföljning av ändring i hälso- och sjukvårdslagen gällande fast vårdkontakt mm. Slutrapport

Socialstyrelsen (2012)

Lagändringen i hälso- och sjukvårdslagen om bland annat fast vårdkontakt är inte särskilt väl känd inom vården och bland patienter. Det visar uppföljningen som också pekar på att det finns ett stort behov av information och utbildning. Vårdgivarna behöver även införa rutiner för att tydliggöra hur fast vårdkontakt ska fungera i praktiken.

Socialstyrelsen fick i regleringsbrevet för 2011 i uppdrag av regeringen att följa upp lagändringarna från den 1 juli 2010 i hälso- och sjukvårdslagen (1982:763), HSL, om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten.

Uppföljningen ska särskilt uppmärksamma hur lagändringarna tillämpats, vilken effekt de har fått och hur väl patienter, personal och hälso- och sjukvårdsverksamheter känner till lagändringarna.

Drygt hälften av landstingen och hälso- och sjukvårdsverksamheterna uppger att de fick information om lagändringen före, eller direkt i samband med att den trädde i kraft den 1 juli 2010.

Uppföljningen visar att lagändringen i HSL om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten inte är särskilt väl känd bland hälso- och sjukvårdsverksamheterna, professionen eller patienterna.

Uppföljningen pekar också på att det finns ett stort behov av informations- och utbildningsinsatser om lagändringarna från vårdgivarnas sida. Det gäller samtliga de aktuella ändringarna i HSL, men framförallt rättigheten för patienten till en fast vårdkontakt.

Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig kan fungera som underlag för vårdgivare och verksamhetschefer i ett arbete med sådana insatser. Socialstyrelsen planerar även att ta fram ett meddelandeblad med information om de aktuella lagändringarna, och framförallt om fast vårdkontakt.

Socialstyrelsen har vidare identifierat att det finns ett behov av att vårdgivare säkerställer att förnyad medicinsk bedömning fungerar som det är tänkt. I samband med detta kan vårdgivarna även behöva kontrollera att man använder det aktuella regelverket Socialstyrelsens bedömning är att det har gått för kort tid sedan lagändringarna för att vi ska kunna uttala oss om den långsiktiga effekten av lagändringarna. Representanterna för intresseorganisationerna, läkarna och sjuksköterskorna som deltog i uppföljningen om lagändringarna är dock hittills mycket positiva till förändringarna i sig.

Uppföljningen visar också följande:

Lagändringens genomslag i hälso- och sjukvårdens styrdokument är begränsat och det kan finnas ett behov av att ta fram rutiner och olika typer av styrdokument på alla nivåer i hälso- och sjukvården. Denna typ av rutiner och styrdokument kan behövas för att skapa kontinuitet och samordning i verksamheterna.
Det råder stor osäkerhet om lagändringen i hälso- och sjukvårdsverksamheterna, framförallt när det gäller hur bestämmelsen om fast vårdkontakt ska omsättas i praktiken och vilka befogenheter den fasta vårdkontakten ska ha. Det finns ett behov för vårdgivar-na att tydliggöra detta, särskilt när det gäller samverkan med andra verksamheter.
Majoriteten av vårdcentralerna och cirka hälften av sjukhusklinikerna har inte haft några patienter som tilldelats en fast vårdkontakt. I den kommunala hemsjukvården har ca en tredjedel av verk-samheterna haft en eller flera patienter som tilldelats en fast vårdkontakt.
Informationen om fast vårdkontakt och förnyad medicinsk bedömning behöver förbättras på landstingens webbplatser och på informationssidan 1177. Information om vårdgarantin och rätten att välja vårdgivare inom den offentligt finansierade hälso- och sjukvården finns på i stort sett alla webbplatser. Information om fast vårdkontakt finns bara på ett landstings webbplats och på en minoritet av landstingens informationswebbplats 1177. Information om förnyad medicinsk bedömning är lätt att hitta på 1177 men något svårare att hitta på landstingens webbplatser.
De flesta patientnämnder har haft ärenden med koppling till lagändringen. Ärenden gällande förnyad medicinsk bedömning är vanligast.
Drygt hälften av verksamhetscheferna vid sjukhuskliniker och vårdcentraler och fyra av tio verksamhetsansvariga vid hemsjukvården uppger att de har haft stöd av Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig.

Use of eye‐pointing by children with cerebral palsy: what are we looking at?

Sargent, J., Clarke, M., Price, K., Griffiths, T., & Swettenham, J. (2013)

BACKGROUND:
Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development.
AIMS:
To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.
METHODS & PROCEDURES:
Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.
CONCLUSIONS & IMPLICATIONS:
In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Utilization of medical healthcare among people receiving long-term care at home or in special accommodation

Condelius, A., Edberg, A.-K., & Rahm Hallberg, I. (2010)

AIM:
To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1-year period in relation to informal care, multimorbidity, functional status and health complaints and to long-term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long-term care.
METHOD:
A total of 694 people receiving long-term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables.
FINDINGS:
Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = -0.060) and outpatient care (B = -0.581).
CONCLUSION:
Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.

Validation of the CHORES: A measure of school-aged children´s participation in household tasks

Dunn L. (2004)

The CHORES (Children Helping Out: Responsibilities, Expectations, and Supports) is a clinical and research tool that measures school-aged children's participation in household tasks. Separate performance and assistance scores enable examination of changes in children's responsibilities for household tasks as they mature and the work of families to promote their participation. The Self-Care and Family-Care subscales afford study of cultural aspects of household tasks that may influence children's participation and opportunities for learning. Thirty-two parents from diverse backgrounds participated in the first part of the study. Twenty-one of these parents participated in the test–retest study. The sample was culturally diverse and included parents of 6- to 11-year-old children with and without disabilities who have average or above intellect. Results from the psychometric analyses show that the CHORES has strong reliability and validity. The variance in children's task performance and overall levels of assistance supports the utility of this measure for capturing differences among children in the extent of their participation. Stability of parents' responses over time is strong both for performance (ICC, r=0.88) and for assistance (ICC, r=0.92) scores. The validity of the CHORES is supported by the parents' judgments of the importance of involving their children in household tasks. The CHORES is easy to complete, considers the parent's perspective, and provides a way to collect information on children's participation in household tasks. The CHORES provides a mechanism to learn more about factors that influence children's participation in household tasks, changes in their responsibilities over time, and outcomes from their participation in these tasks.

Women in the Middle. Their Parent-care Years

Brody, E. (2004)

Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.

Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.

Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.

Workforce capacity to respond to children whose parents have a mental illness

Maybery, D., & Reupert , A. (2006)

Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.

Young carers and their Families

Becker, S., Aldridge, J., & Dearden, C. (1998)

TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .

A day in the life of a child caring for a parent with multiple sclerosis.

Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.

Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.

The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."

Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.

School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.

I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.

A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.

The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.

It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.

What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.

So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.

"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."

Trickey, R (2008)

The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.

 

"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure

Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson (2019)

Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."

Wolff, J. F. and Agree, E.M. (2004)

Abstract

OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.

METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.

RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.

DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.

"Easing the way" for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention

Ott, C. H., Kelber, S. T., & Blaylock, M. (2010)

A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.

"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

Ducharme FC, Levesque LL, Lachance LM, Kergoat M-J, Legault AJ, Beaudet LM, et al. (2011)

Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.

"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services

Weimand BM, Hedelin B, Hall-Lord M-L, Sällström C. (2011)

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."

Westwood, S. (2013)

Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life

"Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system.

Fjose M., Eilertsen G., Kirkevold M., Grov EK. (2018)

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen

Sundström, G. (2001)

Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.

"Parent Management Training as a Treatment for Children with Oppositional Defiant Disorder Referred to a Mental Health Clinic."

Costin J (2007)

Parent Management Training (PMT) has been shown to be an empirically supported intervention in ameliorating antisocial behaviour problems. Less evidence is available to demonstrate the effectiveness of PMT in routine public-health-oriented community-based settings where the presence of comorbid disorders complicates the picture. The current study was undertaken to investigate the effectiveness of PMT as a treatment for primary school-age children with Oppositional Defiant Disorder (ODD) and comorbid disorders offered by clinical staff as part of clinical practice. An Australian sample of 94 parents of children diagnosed with ODD by structured interview was provided with eight sessions of PMT. Measures used to assess changes in child behaviour symptoms were the Eyberg Child Behavior Inventory, the Parent Stress Index Child Domain, and the Child Behavior Checklist. Clinically relevant and statistically significant outcome results were found at posttreatment and at 5 months follow-up. There was a reduction in child symptomatology but no evidence of any effect of comorbidity on outcome. These findings are important for the clinical field as they show that PMT is a robust intervention suitable for routine clinical practice even when comorbid disorders are present in addition to ODD.

"You don't want to burden them": older adults' views on family involvement in care

Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R. (2009)

Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.

“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”

Flint, A. J. (2005)

Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.

“It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological well-being in adolescents providing dementia care

Perion, Jennifer Steiner, Victoria Ames, April (2021)

According to a 2018 report by the Alzheimer's Association, an estimated 250,000 children help support a family member with dementia, but few studies exist that describe their experience as family carers. This qualitative descriptive study sought to understand the perceived psychological well-being of adolescents who assist with providing care to family members with dementia. Eleven adolescents ages 12 to 17 caring for older non-parental family members with dementia in northwest Ohio participated in one of three focus group discussions. An adult family member was surveyed about family background and level of assistance provided. The data from the two questionnaires were analyzed using descriptive statistics. Focus group transcripts were analyzed using thematic content analysis. Thematic analysis revealed six themes related to psychological well-being: 1) Feeling compassion for the family member; 2) Finding connection through fun, humor, and mutual affection; 3) Helping even though it is not always pleasant; 4) Feeling good inside about helping family "do stuff"; 5) Believing no one can do it like family; and 6) Reflecting that it is just something that they do. The findings of this study provide new insight into adolescents' experiences of dementia family care and how it affects their psychological well-being. An examination of the themes suggests that secondary caring roles were mostly positive in nature and may help adolescents forge closer family relationships, find opportunities for personal growth and development, and overcome challenges to grow more confident. These findings may also suggest ways to include adolescents in family care as a means of positive growth opportunities. •Dementia caregiving was mostly a positive experience for adolescents.•Family obligations elicited feelings of connectedness.•Adolescents found ways to overcome feelings of aversion when providing care.•Emergent themes were consistent with Ryff's dimensions of physiological well-bring.•Results may be used to develop supportive and enriching programs for families.

“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.

Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J. (2009)

OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.

“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder

Focht-Birkerts, L., & Beardslee, W.R. (1996)

This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.

”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen

Carlhed, Carina (1998)

Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal

”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”

Fröjdh, K., Håkansson, A., & Jansson, S. (2003)

OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.

”Because we know our limits”: Elderly parents´ view on intergenerational proximity and intimacy

Hjälm, A. (2012)

From an intergenerational family perspective, geographical distance and proximity have been shown to affect interaction and the extent of help and support between generations. Geographical separation and nearness hence do not only influence the family per se, but might also concern the welfare state, not least in times of population ageing. This study concerns exchange and assistance between elderly parents living very close to an adult child, and is based on interviews with 14 elderly parents. The interviews revealed that help and support flowed in both directions between the close-living generations, but that from the perspective of the elderly some types of help were more acceptable than others to give and receive. Further, the interviews suggested that living close, albeit discussed as allowing extensive interaction and support, should not be understood as a sign of wanting or even accepting more extensive help from the close-living adult child.

”No, you don’t know how we feel”: Groupwork with children facing parental loss

Chowns, G. (2008)

Groupwork with bereaved children has become increasingly common. However, working with children anticipating potential bereavement has received much less attention. Similarly, research within this area in palliative care has been notable for two things - its paucity and its failure to address the perspective of the children themselves. The author, a palliative care social worker, turned to the action research paradigm for an approach that would more effectively engage with and illuminate these children's experiences, and undertook a collaborative inquiry - where the research is conducted with rather than for, on, or about the participants - with nine children aged from seven to fifteen. Collaborative inquiry raises - and challenges - many key issues in both research and groupwork, such as voice, power and identity, ethics and competence. This article addresses a number of these issues, with a particular focus on identity.

”Over the rainbow” a prevention group for bereaved children and families in a rural area

Miller, J.S. (2010)

Akademisk Avhandling

The death of a loved one is a difficult experience for a child. However, prior research has found several characteristics that put some children at a greater risk than others. This study examined the unique needs that rural communities face trying to provide services to bereaved children and their families. The primary purpose of this study was to evaluate the effectiveness of a one-day bereavement camp for children and families in a rural area who have lost someone close to them. Participants completed quantitative and qualitative measures designed to evaluate the group. The camp was offered on four occasions, but despite intensive recruitment only seven participants attended. Although the group was well-liked and beneficial to those who attended, the recruitment and attendance difficulties suggest this may be an inefficient use of time and money for the provision of bereavement services to the community. A follow-up study was created to investigate the barriers and possible solutions to aid future programs. Fourteen key informants in the community were interviewed to address this topic and grounded theory was utilized to examine the results. Findings were consistent with the difficulties for other rural mental health programming in regards to accessibility and acceptability. Rural core providers must be aware of these unique variables in rural culture that lead to barriers to treatment and determine which strategies fit best to meet the needs of individuals in these communities.

”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat

Högberg, Anette (2009)

Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.

”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers

Smyth C, Blaxland M, Cass B. (2011)

A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.

A brief measure of social support: practical and theoretical implications

Sarason IG, Sarason BR, Shearin N, Pierce GR. (1987)

Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson