Bibliotek

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

Frågeställningar som berörs är bland andra:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Avhandling

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

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

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

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

illustration: Tomas Gradzki.

innehåller fördjupande artiklar som berör ämnesområdet och starten av utvecklingsarbetet BRA, Barns Rätt som Anhöriga

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

This study examined barriers that families experience during treatment and the role these barriers play in participation and completion of therapy. We developed the Barriers to Treatment Participation Scale and evaluated performance among children (N = 260, ages 3-13) and families referred for outpatient treatment. The results indicated that: (a) the scale yielded high levels of internal consistency; (b) the experience of barriers to participation, whether rated by parents or therapists, predicted higher rates of dropping out of treatment, fewer weeks in treatment, and higher rates of cancelled appointments and not showing up for sessions; (c) the perception of barriers was distinguishable from several family, parent, and child characteristics assessed at intake and the experience of critical life events during treatment; and (d) perceived barriers added significant information in predicting participation in treatment, over and above other characteristics that are already known to predict poor participation in treatment. Barriers associated with treatment participation can help identify cases at risk for dropping out and suggest targets for intervention to improve retention of families in treatment.

Det har varit känt sedan länge att barn till föräldrar med psykisk sjukdom löper en hög risk att drabbas av psykiska och andra problem både under uppväxten och senare i livet. Ändå har vuxenpsykiatrin alltför ofta försummat att möta patienters barn och erbjuda stöd. I flera nordiska länder har lagstiftningen nyligen kompletterats med bestämmelser som förpliktigar hälso- och sjukvårdspersonalen att uppmärksamma barnens och familjernas behov av information och stöd när föräldern lider av en allvarlig sjukdom. Beardslees preventiva familjeintervention (FI) är den första familjefokuserade och strukturerade metoden som har använts i Sverige. Den har viss evidens för positiva långtidseffekter för barn och familjer när föräldern har depression. Avhandlingens syfte var att studera FI:s säkerhet och genomförbarhet i Sverige (studie I), dess upplevda effekter för familjer (studie I, III och IV) och familjeinterventionsprocessen ur alla familjemedlemmars perspektiv (studie II, III och IV). Studierna genomfördes i en naturalistisk kontext. Data i studie I samlades med en enkät som gavs till föräldrar och barn (117 föräldrar och 89 barn svarade) en månad efter en FI. I studie II intervjuades tio föräldrar med depressionsdiagnos om deras beslutsprocess fram till deltagande i en FI. I studie III och IV presenteras data från 25 intervjuer med föräldrar och 14 intervjuer med barn om deras erfarenheter av FI. Sjuttiofem behandlare från 29 psykiatriska enheter hade genomfört familjeinterventionerna för familjerna som deltog i studierna. Data analyserades med deskriptiv statistik och chi2 (I), Grounded theory (II och III) och kvalitativ innehållsanalys (IV). Resultaten från studie I visade, att den allmänna tillfredsställelsen med FI var hög både hos föräldrar och hos barn. Nittiotre procent av svaren från föräldrarna och 71 % från barnen var positiva gällande frågor om tillfredsställelse med och allmänna erfarenheter av FI. De rapporterade upplevda effekterna av FI var också övervägande positiva. Skuldkänslor minskade för 89 % av barnen som hade haft skuldkänslor gentemot föräldern innan FI. Kunskap om förälderns sjukdom upplevdes öka för 74 % av barnen. Barnen rapporterade några negativa effekter; fem barn upplevde ökad oro för föräldern och tre barn sämre mående efter FI.
I studie II intervjuades föräldrar med depressionsdiagnos vilket visade en ambivalens i beslutet att delta i en FI. Föräldrarna längtade efter att få veta hur deras barn mådde, hur de tänkte om sjukdomen och om de hade farit illa. Å andra sidan var föräldrarna oroliga inför att få svaren på dessa frågor iv
på grund att en hel del skuld- och skamkänslor var kopplade till frågan om barnens mående. Att utsättas för insyn i familjen var både en lättnad och skrämmande. Föräldrarnas erfarenheter undersöktes också i studie III. Att öppna upp en dialog med barnen om den psykiska sjukdomen var krävande. Att lyssna på barnens erfarenheter, att hitta lämpliga ord och slutligen börja prata om sjudomen i familjeträffen krävde att det fanns en grund av trygghet och förtroende både för behandlarna och för metoden. FI som metod verkade ge goda förutsättningar för att behandlarna skulle kunna etablera en allians med föräldrarna. Barnens erfarenheter presenteras i studie IV. De flesta barn beskrev en känsla av lättnad på grund av mer kunskap om förälderns sjukdom och öppnare kommunikation i familjen, därmed kände de också befrielse från en del av oron för föräldern. Barnen berättade att de kunde vara mer med sina vänner och inte längre behövde ta lika mycket ansvar hemma. Föräldrar och barn från samma familjer beskrev förändringarna på ett likartat sätt, tydande på att det fanns en ömsesidig förståelse i familjerna. Föräldrarna upplevde sig själva stärkta i sitt föräldraskap och deras skamkänslor hade minskat. Sammanfattningsvis är familjerna nöjda med sitt deltagande i FI, de rapporterar positiva effekter och andelen upplevda negativa effekter är låg. Barnen beskriver en känsla av lättnad och en befrielse från oron över förälderns sjukdom.

Caring for a person with dementia is one of the most devastating and challenging experiences that caregivers have to face. Many studies indicate that the experience of care giving reflects cultural care values and beliefs. Even though dementia care giving is the most frequently studied type of care as reflected in the literature, few studies have focused on dementia caregivers from culturally and linguistically diverse backgrounds. The purpose of this study was to explore Iranian immigrant experiences of taking care of a family member with dementia.An interpretive phenomenological approach was employed to investigate the experiences of ten Iranian family caregivers, each caring for a family member with dementia and living in Sweden. Caregivers were recruited through purposeful sampling and took part in semi-structured interviews. All of the individuals who were contacted participated in the study. The participants included seven women and three men, ranging in age from 40 to 65 years, from different cities. They had all lived in Sweden for at least 20 years. Two caregivers were married to people with dementia, and eight were caring for parents with dementia. Data analysis was guided by Benner's interpretive phenomenology and revealed three key themes, namely caring as an experience of fulfillment, admitting the diagnosis of dementia, and the shock of not being recognized by their family members with dementia. Positive aspects of care giving should be recognized and supported in order to facilitate the maintaining of caregivers' involvement. The positive experiences of care giving could help to alleviate the problems that are experienced by the caregivers of people with dementi

The BDI-II represents a highly successful revision of an acknowledged standard in the measurement of depressed mood. The revision has improved upon the original by updating the items to reflect contemporary diagnostic criteria for depression and utilizing state-of-the-art psychometric techniques to improve the discriminative properties of the instrument. This degree of improvement is no small feat and the BDI-II deserves to replace the BDI as the single most widely used clinically administered instrument for the assessment of depression.
[출처] Beck depression inventory -II|작성자 Mirr

INTRODUCTION:
Parents of a young child with severe disabilities are facing a large range of new challenges; furthermore, most of these families have extended social needs regarding information, financial support, day care facilities, disability aids, etc. Many parents with disabled children have been found to be dissatisfied with social services. This study explores parents' experiences with Danish social services during their transition to a new daily life after the birth of a severely disabled child.
MATERIAL AND METHODS:
Repeated qualitative interviews were performed individually with 16 parents of a severely disabled young child during the first two years after the diagnosis of the child's disabilities. Data were analysed using grounded theory.
RESULTS:
We found that the encounter with the social services increased stress in the families. Parental expectations were not met, especially regarding information; parents felt clientized, and obtaining social support was very resource consuming. Parents' needs regarding practical support and empathic case-working were not met and they spent much time and effort due to lacking continuity between sectors.
CONCLUSION:
Parents have specific needs when becoming clients in the social service system whose organisation of social services needs improvement. Health care professionals are advised to identify problems and support cooperation between the parents and the social service system, as well as to report the health-related consequences of prolonged and inefficient case-working for the child and its parents.
FUNDING:
was received from Socialministeriet, Landsforeningen LEV, Ronald McDonalds Børnefond, Susie og Peter Robinsohns fond, Rosalie Petersens fond, PLU-fonden, Ville Heises fond, Sygesikringens forskningsfond, Helsefonden, Elsass fonden.

82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.

82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.

The current article describes the phenomenology and empirically supported treatments for Tourette's disorder (TD) and presents data on treatment utilization from two separate national surveys of adults with TD (N = 672) and parents of children with TD (N = 740). Despite a wealth of empirical evidence demonstrating its effectiveness, results suggest that most people with TD do not receive behavior therapy for the condition. Reasons for this include a lack of information about the disorder among consumers and providers, a shortage of providers trained in the treatment, and concern about possible negative effects of behavioral treatment. The article concludes with a discussion about dissemination efforts aimed at making behavior therapy more widely available to children and adults with chronic tics and a review of beliefs about the negative effects of behavior therapy. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships''coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

This study describes the theoretical assumptions and the application for health-promoting conversations, as a communication tool for nurses when talking to patients and their families. The conversations can be used on a promotional, preventive and healing level when working with family-focused nursing. They are based on a multiverse, salutogenetic, relational and reflecting approach, and acknowledge each person's experience as equally valid, and focus on families' resources, and the relationship between the family and its environment. By posing reflective questions, reflection is made possible for both the family and the nurses. Family members are invited to tell their story, and they can listen to and learn from each other. Nurses are challenged to build a co-creating partnership with families in order to acknowledge them as experts on how to lead their lives and to use their own expert knowledge in order to facilitate new meanings to surface. In this way, family health can be enhanced.

Background:

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

Aims:

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

Method:

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

Results:

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

Conclusion:

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

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

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

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

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

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

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

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

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

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

Läsålder
6-9 år
Illustratör/Fotograf Jon Birch

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

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

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

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

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

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

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

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

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

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

Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.

This thesis demonstrates relations among health, social network, ADL and patterns of care in the oldest old guided by a resource theoretical model.The analyzed data are based on two studies: the Nona study, a longitudinal study of 157 individuals aged 86 to 94 years, and the H70 study, a longitudinal study of 964 individuals aged 70 at baseline. Data were collected by interviews and to some extent in the H70 study, medical exams and medical records.The results demonstrate that perceived resources seem to affect patterns of care to a higher extent than the more objective resources in the sample of the oldest old. On the other hand, sociodemographic variables such as gender, marital status and SES, in addition to the more objective resources of having children nearby and the number of symptoms of illness predicted institutionalization during a subsequent 30-year period from the age of 70. The proportion of elderly persons' institutionalization was further significantly higher than that generally found in cross-sectional studies. ADL was one of the strongest predictors for both use of formal care and institutionalization in both samples, indicating an effective targeting of the formal care system in Sweden. The care at end of life in the oldest old is challenged by the problems with progressive declines in ADL and health, which makes it hard to fit in the dying oldest old in the palliative care system. There is a need to increase the knowledge and the possibility for care staff to support and encourage social network factors and for decision-making staff to consider factors beyond ADL.

Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.

Caregivers of people with severe mental disorders suffer from having a considerable burden as a result of their caregiving role. They develop different kinds of coping strategies to deal with this burden. There has been a lack of qualitative studies on caregiver burden and coping, especially from non-Western populations. The present paper reports findings of a longitudinal study of burden and coping in a group of caregivers of people suffering from schizophrenia and bipolar affective disorder (BAD). Qualitative assessments were done by focus group discussions (FGDs) with the caregivers over a period of about a year. Caregivers reported burden in different areas including effects on family functioning, social isolation, financial problems, and health. They used multiple coping strategies including developing compassion in caregiving, hoping for a better future, developing faith in God, participating in religious practices, and helping others with a similar problem.

Introduction: Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. Aim: The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. Method: One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist--Hindi Adaptation (WCC--HA). Results: Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Conclusions: Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.

Abstract
OBJECTIVE:

To determine if caregiver burden (CB) can be an independent predictive factor of weight loss at three months in older outpatients suffering from mild to moderate Alzheimer's disease (AD) and living at home.
METHOD:

Prospective cohort study involving 105 subjects aged 70 years or more, affected by mild to moderate AD and living at home with the assistance of at least one informal caregiver, who consecutively underwent a multidimensional geriatric assessment. Body weight was re-evaluated at a three month follow-up, from December 2008 to April 2009. Those who experienced a weight loss greater than 3% of the baseline weight constituted the 'weight loss' group.
RESULTS:

Out of the 97 older participants attending follow-up, 22 (23%) had experienced a weight loss > 3%. At a multivariate logistic regression analysis, a greater CB at baseline, defined by a score of the caregiver burden inventory scale in the highest tertile (i.e. 36+ out of 96), turned out to predict weight loss at three months (odds ratio (OR) 13.93, 95% confidence interval (CI) 1.91-101.33, p = 0.009), independently of other factors associated with the 'weight loss' group such as age, functional dependence and the risk of malnutrition estimated by means of the Mini Nutritional Assessment Short Form (MNA-SF).
CONCLUSION:

For older outpatients affected by mild to moderate AD and living at home, CB constitutes a risk factor for weight loss even in the short-term, independently of other factors such as the risk of malnutrition assessed by means of the MNA-SF.

PURPOSE OF THE STUDY: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional self-efficacy jointly influence changes in ADL performance over time. DESIGN AND METHODS: The sample included 5,138 elderly recipients of home and community-based long-term care in Michigan. ADL performance was assessed multiple times over a 2-year period. Caregiver confidence was measured at baseline with a single item. Multilevel modeling was used to estimate the effect of caregiver confidence on changes in ADL performance over time, controlling for baseline self-efficacy, ADL performance, and other factors that might confound the relationship. Based on caregiver confidence and elder self-efficacy, we created 4 groups of elder caregiver dyads to explore the combined effect of caregiver and elder confidence on change in ADL performance. RESULTS: Elders whose caregivers were confident in their capacity for greater functional independence experienced greater improvement in ADL performance than those whose caregivers were not confident. Elders in dyads in which both members expressed confidence experienced more improvement in ADL performance than those in dyads in which either one or both members lacked confidence. IMPLICATIONS: Interventions to strengthen caregivers' confidence in their care recipients' functional capabilities may slow functional losses among home care elders. Additional research is needed to confirm these findings and identify the factors that influence caregiver confidence.

Recently, analysts in the United States (US) have proposed adopting caregiver credits, or pension credits, provided to individuals for time spent out of the workforce while caring for dependent children and sick or elderly relatives. The primary objective of these credits, used in almost all public pension systems in the European Union, is to improve the adequacy of old-age benefits for women whose gaps in workforce participation typically lead to fewer years of contributions, lower lifetime average earnings, and consequently lower pensions. This article examines caregiver credits in the context of future reforms to the US Social Security system, with attention given to the adequacy of current spouse and survivor benefits and how changing marital patterns and family structures have increased the risk of old-age poverty among certain groups of women. It then analyzes caregiver credit programs in selected countries, with particular focus on design, administration, and cost.

AIMS AND OBJECTIVES: This study set out to describe caregiver experience,
health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction.
BACKGROUND: Knowledge about factors related to caregivers' health-related qualityof life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included.
Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction
Checklist) and caregiver- and patient-related factors. Associations were explored
by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction.
CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction.
RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.

Abstract
AIM:
The task of managing care for patients with Parkinson's disease (PD) often falls upon a family member taking on the role as a caregiver (CG) implying a burden on these CGs. The aim of this study was to evaluate CG strain of PD patients with regarding different psychosocial domains and the influence of PD/CG duration of PD.
METHODS:
A cross-sectional telephone interview survey of 451 CGs randomly selected from the registry of the Swedish Parkinson's Disease Association. A structured questionnaire covering sociodemographic, psychosocial, and general CG factors, sleep and depression of the CG as well as issues of the patient's disease was used by 4 independent interviewers blinded to the study objective.
RESULTS:
Four hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years with 62% females. The results were stratified in 3 groups with regard to disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. General health condition of the CGs was regarded satisfactory independent of disease duration. Insufficient sleep and disease related stress were considered to be prominent in 36% and 61%, respectively, being significantly more prominent in the group with the longest disease duration. Decreased mood was reported in 31% with no difference between groups. More than 30% of CGs also experienced daily problems with tiredness and sleep disturbance; 27% hypertension; 17% muscle strain, headache and fatigue; and 14% gastro-intestinal problems most items regardless of disease duration. The most troublesome symptoms of the patients to the CGs were reported to be the motor dysfunction (58%). More than half experienced little or no understanding of their situation.
CONCLUSION:
CGs are afflicted with strain and burden in many psychosocial and somatic domains despite satisfactory general wellbeing independent of disease duration. The longer disease duration, and, accordingly CG duration, the more impact on certain domains of CG burden, however, with little understanding of their situation. These findings should be given greater consideration when organizing and planning for PD care in the health care system and the community.

Changes that can accompany stroke may create considerable stress for individuals caring for the affected person. This study explored the coping process for nine rural-dwelling caregivers of persons with stroke and the responses of these caregivers to a Web-based support program. The qualitative data management program QSR N 5 was used to analyze quotes from telephone interviews and computer entries. Stories of how caregivers came together and supported one another emerged from the data collected as part of a larger study that examined the experience of caring. Friedemann's framework of systemic organization guided data analysis and interpretation. Actions demonstrated by the caregivers illustrated the process of crisis resolution through family togetherness in which nurses were included. The findings of this study aided in understanding this process and gave direction for nurses working with such clients.

Caregivers who suffer grief after the death of a family member with dementia have received little attention in research. In this Swedish study, 30 caregivers were interviewed less than 6 months after the death of a family member with dementia. The study explored the caregivers' experiences of bereavement and social support in two stages: during the caregiving period and following death, and examined any links between the two stages. Findings showed that a central dynamic in caregiver bereavement seemed to be the support experienced, as well as the possibility of having continued support from family and/or friends. Caregivers who reported more positive appraisals during the caregiver period were likely to feel relieved after the death of a relative. They also tended to be more satisfied with their social support. (AKM).

Background: Care of elderly changed in the 1990s in Sweden; treatment sessions were shortened in particular. Consequently, patients have a greater need for care when returning home from hospital. This task may seem overwhelming and caregivers can feel lonely, worn out and resigned in their situation.
Aim: Explore how caregivers experience caring for an elderly next of kin in ordinary living.
Method: Qualitative content analysis of semi-structured interviews with eleven Swedish caregivers.
Findings: Caregivers experienced their situation as something to be endured. In particular, they felt a need for belonging, a need for controlling everyday life, and a need for support.
Conclusion: Home care nurses, health centres and home support workers should be aware of and respect caregivers' needs in terms of support.

Objectives: Recent findings of better health outcomes in older caregivers than noncaregivers suggest a healthy caregiver hypothesis (HCH) model may be more appropriate than the stress process model for evaluating the health effects of caregiving. In a cross-sectional study, we tested the HCH on two cognitive domains: verbal memory and processing speed. Method: Participants from the Caregiver Study of Osteoporotic Fractures who had a 2-year follow-up interview were categorized as continuous caregivers (n = 194), former caregivers (n = 148), or continuous noncaregivers (n = 574). The Hopkins Verbal Learning Test (HVLT; memory) and Digit Symbol Substitution Task (DSST; processing speed) were administered at the follow-up interview. Results: Continuous caregivers had better memory performance and processing speed than continuous noncaregivers: adjusted mean scores for HVLT were 18.38 versus 15.80 (p < .0001), and for DSST were 35.91 versus 34.38 (p = .09). Discussion: Results support the HCH model for cognitive outcomes in older women caregivers; however, the relationship may be domain specific.

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens

Objective: This analysis sought to describe the characteristics and well-being of carers of older people with mental health problems admitted to a general hospital. Methods: General medical and trauma orthopaedic patients aged 70years or older admitted to an acute general teaching hospital were screened for mental health problems. Those screened positive, together with a carer, were invited to undergo further assessment with a battery of health status measurements. Carers were interviewed to ascertain strain (caregiver strain index (CSI)), psychological distress (12-item General Health Questionnaire) and quality of life (EQ-5D). Results: We recruited 250 patients to the study, of whom 180 were cognitively impaired and had carers willing to take part. After 6months, 57 patients (32%) had died, and we followed up 100 carers. Carers' own health, in terms of mobility, usual activities, and anxiety, was poor in a third of cases. At the time of admission, high carer strain was common (42% with CSI≥7), particularly among co-resident carers (55%). High levels of behavioural and psychiatric symptoms at baseline were associated with more carer strain and distress. At follow-up, carer strain and distress had reduced only slightly, with no difference in outcomes for carers of patients who moved from the community to a care home. Conclusion: Hospital staff should be alert to sources of carer strain and offer carers practical advice and emotional support. Interventions are required to prevent and manage behavioural and psychiatric symptoms at the time of acute physical illness or to alleviate their effects on carers.

•This article describes and analyses public support received by unpaid carers in Sweden

•Three types of carers were identified

•Very few carers helping someone living in a different household – the large majority of carers – received or desired support aimed directly at them

•Carers mostly wanted public services for the cared-for person

•Despite legislation in 2009 mandating municipalities to offer support to carers, very few of them know about this law

•There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support services for themselves

•Social policy needs to clarify the aims of the support provided and to take the needs of both carers and cared-for persons into account.

This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about 'typical' carers may have impeded adequate forms of support.

The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the 'heavy end' of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I).Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II).The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II).The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84.In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government's special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III).Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government's special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV).In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm.In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

'Caring capital' is that subset of social capital characterized by caregiving, charity and compassion when these actions are given out of a concern for the welfare of others. The relationship between caring and various forms of capital has scarcely been noticed by social scientists, either theoretically or empirically. After reviewing the concepts of caring and capital, 77 websites related to caring capital were analyzed to explore these types of questions: How large, influential and effective is the care-oriented sector of the web? How is it best to categorize the diversity of websites promoting caring capital? What social or interactive and user-generated opportunities are offered by these web sites? What implications for the future do these web organizations have? While we cannot offer any definitive answer to the question of the potential of the Internet for facilitating caring capital, this study's glimpse of the web finds only minimal charitable activity compared to the huge need for greater compassionate caring at both individual and organizational levels.

OBJECTIVES: To explore associations between carer burden and characteristics of
(1) the informal carer, (2) the person with dementia, and (3) the care support
network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial
relationship and living situation. Variables relating to the person with dementia
included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q),
depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity
Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The
care support network was measured using hours of caregiving (ADLs, instrumental
ADLs [IADLs], supervision), additional informal care support, and service receipt
(home care, day care). Experience of carer burden was recorded using the Zarit
Burden Interview. Logistic regression analysis was used to determine factors
associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with
characteristics of the informal carer (family relationship, specifically wives or
daughters), of the person with dementia (physical dependency in ADLs;
neuropsychiatric symptoms, in particular nighttime behaviors and irritability),
the care support network (hours of caregiving supervision; receipt of other
informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of
distressed behaviors and difficulties in ADLs by the person with dementia may be
addressed by specific nonpharmacological interventions focusing on both elements.
The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

This literature review is concerned with caring for older people and employment, with
a particular focus on the public sector. The review has been commissioned from the
Personal Social Services Research Unit (PSSRU) by the Audit Commission.
At the request of the Audit Commission, the emphasis of the review is on two main
questions. First, there is the question of the extent to which mainstream services and
employers take into account the particular circumstances and needs of carers of older
people in their provision of services or employment practices. Second, there is the
question of the effectiveness or cost-effectiveness of carer-friendly services and
employment practices. The Audit Commission asked the researcher to consider
effectiveness and cost-effectiveness from the perspectives of the different interest
groups involved, that is, the carer, the employer, the person being cared for and the
public interest. The focus of the review is primarily on the role of public sector
employers in offering carer-friendly employment policie

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support.

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support

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This article considers, for a Canadian national probability sample of middle-aged women and
men, the question of how typical is the experience of being "caught in the middle" between being
the adult child of elderly parents and other roles. Three roles are examined: adult child, employed
worker, and parent (and a refinement of the parent role, being a parent of a co-resident child).
Occupancy in multiple roles is examined, followed by an investigation of the extent to which adults
in various role combinations actually assist older parents and whether those who provide frequent
help are also those "sandwiched" by competing commitments. The majority of middle-aged children
do not provide frequent help to parents. Notably, the highest proportion of daughters who assist
elderly parents are those in their fifties whose children are no longer co-resident. For both sons and
daughters, being "caught in the middle" is far from a typical experience in this cross-sectional
analysis.

Abstract
Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.

Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.

Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.

Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.

Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

Although research on social support has generated findings that are key to the study of social and personal relationships, scholars have yet to deal with a number of conceptual issues that affect how social support is defined and measured. Research on hurt feelings provides some interesting insights concerning the conceptualization of support. Based on this research, as well as a review of the literature on social support, the current article describes several issues that scholars ought to consider as they conceptualize, evaluate, and study social support processes.

Abstract
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discusse

Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to 'get by' in their challenging childhoods, showing how the protective factors thought to promote 'resilience' were seldom in place for them unconditionally and without associated costs.

An ex post facto study was conducted to investigate treatment outcomes for 80 women and 168 children admitted into a residential substance-abuse treatment program. The results indicated childhood emotional neglect is a barrier for remaining in and completing treatment for African-American women with comorbid psychological disorders but not for those with crack cocaine dependent disorders. African-American women with comorbid psychological disorders were also three times more likely to dropout of treatment. In addition, there were relatively few differences for between drug-exposed and nonexposed children. However, the results indicated that children of substance-abusing women who completed treatment were more likely to have behavioral problems, to receive early intervention services, and to have mothers as legal guardians by the end of treatment. Implications for gender-specific interventions for African-American women and their children in residential treatment are discussed.

Abstract
OBJECTIVE:
To examine the associations between child physical abuse executed by a parent or caretaker and self-rated health problems/risk-taking behaviors among teenagers. Further to evaluate concurrence of other types of abuse and how these alone and in addition to child physical abuse were associated with bad health status and risk-taking behaviors.
METHODS:
A population-based survey was carried out in 2008 among all the pupils in 2 different grades (15 respectively 17 years old) in Södermanland County, Sweden (n=7,262). The response rate was 81.8%. The pupils were asked among other things about their exposure to child physical abuse, exposure to parental intimate violence, bullying, and exposure to being forced to engage in sexual acts. Adjusted analyses were conducted to estimate associations between exposure and ill-health/risk-taking behaviors.
RESULTS:
Child physical abuse was associated with poor health and risk-taking behaviors with adjusted odds ratios (OR) ranging from 1.6 to 6.2. The associations were stronger when the pupils reported repeated abuse with OR ranging from 2.0 to 13.2. Also experiencing parental intimate partner violence, bullying and being forced to engage in sexual acts was associated with poor health and risk-taking behaviors with the same graded relationship to repeated abuse. Finally there was a cumulative effect of multiple abuse in the form of being exposed to child physical abuse plus other types of abuse and the associations increased with the number of concurrent abuse.
CONCLUSIONS:
This study provides strong indications that child abuse is a serious public health problem based on the clear links seen between abuse and poor health and behavioral problems. Consistent with other studies showing a graded relationship between experiences of abuse and poor health/risk-taking behaviors our study shows poorer outcomes for repeated and multiple abuse. Thus, our study calls for improvement of methods of comprehensive assessments, interventions and treatment in all settings where professionals meet young people.

The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.

This meta-analysis examined 118 studies of the psychosocial outcomes of children exposed to interparental violence. Correlational studies showed a significant association between exposure and child problems (d = -0.29). Group comparison studies showed that witnesses had significantly worse outcomes relative to nonwitnesses (d = -0.40) and children from verbally aggressive homes (d = -0.28). but witnesses' outcomes were not significantly different from those of physically abused children (d = 0.15) or physically abused witnesses (d = 0.13). Several methodological variables moderated these results. Similar effects were found across a range of outcomes, with slight evidence for greater risk among preschoolers. Recommendations for future research are made, taking into account practical and theoretical issues in this area.

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The death of a close family member is a profound insult to a child's developmental course. Though early research assumed that childhood bereavement was a risk factor for mental and behavioral disorders in childhood and adult life, recent research has taken an ecological view of childhood development and considers a child's exposures to risk and protective factors. Yet, it remains unclear as to how many children are affected by the death of a close family member each year and how peer support groups can help children to adapt to such an adverse event. This dissertation represents three distinct stages in the development of a comprehensive evaluation for an agency that provides a peer support service for bereaved children and their families. First, a primary question that arose during initial consultations with the agency was to determine how many children are affected annually within Pennsylvania. This led to an exploration of the epidemiology of childhood bereavement. The methods and data sources used to produce these estimates were critically evaluated and modified to offer a new interpretation of available data. Second, it was important to identify constructs that could be used in an outcomes evaluation of the peer support program. Focus groups were used to explore the perceived benefits of attending peer support groups among caregivers and teens who had attended a spring session at the center. The intention to use focus groups was to increase the validity of constructs and, ultimately, the results of an outcomes evaluation.Third, after identifying evaluation constructs a feasibility study was conducted to pilot an outcomes evaluation instrument. The study involved 30 families who attended the spring 2007 sessions at the center. Results suggested that peer support programs can improve children's coping efficacy while helping to improve their caregivers' perception of social support. The program also improved both children and caregivers' sense that they are not alone in their grief.As demonstrated in this dissertation, including the loss of siblings and primary caregiving grandparents in prevalence estimates of childhood bereavement and applying resilience theory to peer support research is of public health relevance.

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole.

Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.

Many young people who are mistreated by an adult, victimized by bullies, criminally assaulted, or who witness domestic violence react to this violence exposure by developing behavioral, emotional, or learning problems. What is less well known is that adverse experiences like violence exposure can lead to hidden physical alterations inside a child's body, alterations that may have adverse effects on life-long health. We discuss why this is important for the field of developmental psychopathology and for society, and we recommend that stress-biology research and intervention science join forces to tackle the problem. We examine the evidence base in relation to stress-sensitive measures for the body (inflammatory reactions, telomere erosion, epigenetic methylation, and gene expression) and brain (mental disorders, neuroimaging, and neuropsychological testing). We also review promising interventions for families, couples, and children that have been designed to reduce the effects of childhood violence exposure. We invite intervention scientists and stress-biology researchers to collaborate in adding stress-biology measures to randomized clinical trials of interventions intended to reduce effects of violence exposure and other traumas on young people.

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Childhood poverty has moved from the periphery to the centre of the policy agenda following New Labour's pledge to end it within twenty years. However, whether the needs and concerns of poor children themselves are being addressed is open to question. The findings raise critical issues for both policy and practice - in particular the finding that children are at great risk of experiencing exclusion within school. School has been a major target in the drive towards reducing child poverty. However, the policy focus has been mainly about literacy standards and exclusion from school. This book shows that poor children are suffering from insufficient access to the economic and material resources necessary for adequate social participation and academic parity.Childhood poverty and social exclusion will be an invaluable teaching aid across a range of academic courses, including social policy, sociology, social work and childhood studies. All those who are interested in developing a more inclusive social and policy framework for understanding childhood issues from a child-centred perspective, including child welfare practitioners and policy makers, will want to read this book.Studies in poverty, inequality and social exclusion seriesSeries Editor: David Gordon, Director, Townsend Centre for International Poverty Research.Poverty, inequality and social exclusion remain the most fundamental problems that humanity faces in the 21st century. This exciting series, published in association with the Townsend Centre for International Poverty Research at the University of Bristol, aims to make cutting-edge poverty related research more widely available. For other titles in this series, please follow the series link from the main catalogue page.

AIM: To investigate whether socio-economic status (SES) in childhood and school failure at 15 years of age predict illicit drug abuse in youth and young adulthood. DESIGN, SETTING AND PARTICIPANTS: Register study in a Swedish national cohort born 1973-88 (n = 1,405,763), followed from age 16 to 20-35 years. Cox regression analyses were used to calculate hazard ratios (HR) for any indication of drug abuse. MEASUREMENTS: Our outcomes were hospital admissions, death and criminality associated with illicit drug abuse. Data on socio-demographics, school grades and parental psychosocial problems were collected from censuses (1985 and 1990) and national registers. School failure was defined as having mean school grades from the final year in primary school lower than -1 standard deviation and/or no grades in core subjects. FINDINGS: School failure was a strong predictor of illicit drug abuse with an HR of 5.87 (95% CI: 5.76-5.99) after adjustment for age and sex. Childhood SES was associated with illicit drug abuse later in life in a stepwise manner. The lowest stratum had a HR of 2.28 (95% CI: 2.20-2.37) compared with the highest stratum as the reference, when adjusted for other socio-demographic variables. In the fully adjusted model, the effect of SES was greatly attenuated to an HR of 1.23 (95% CI: 1.19-1.28) in the lowest SES category, while the effect of school failure remained high with an HR of 4.22 (95% CI: 4.13-4.31). CONCLUSIONS: School failure and childhood socio-economic status predict illicit drug abuse independently in youth and young adults in Sweden.

We examined prevalence of parental deaths among former out-of-home care youths at age 18 and 25, and odds of parental loss compared with peers from similar socio-economic childhood backgrounds. The study utilized Swedish national register data for 12 entire birth cohorts (1972–1983), 35 550 former out-of-home care youths and 1 138 726 cohort peers without out-of-home care experiences. Logistic regression models were used to compute odds ratios for parental loss through death.

It was especially common among former residents of long-term out-of-home care to be motherless (11%), fatherless (11–13%) or orphaned (3–4%) at age 18, compared with non-foster care peers (1%, 3% and 0.03%). Twenty-six per cent had lost at least one parent (4% among non-foster care peers). At age 25, the figures had increased considerably; 36% had lost at least one parent, compared with 7% in the majority population. Adjusted odds ratios for parental loss among long-term care youth were strikingly high, particularly for having a deceased mother. In short-term and intermediate care, most youths with deceased parents had suffered parental loss before entering foster care. For youth from long-term care, parental death after start of placement was most common.

Childhood traumatic grief refers to a condition in which characteristic trauma-related symptoms interfere with children's ability to adequately mourn the loss of a loved one. Current concepts of this condition suggest that it overlaps with but is distinct from uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder. This article describes the core features of childhood traumatic grief; differentiates it from these related conditions; and reviews the current research status of suggested diagnostic criteria, assessment instruments, and treatments for this condition. Implications for future clinical practice, research, and policy are also addressed.

Discussing childhood traumatic grief, a condition likened to uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder (PTSD), this article addresses the core features of this condition and its potential treatments. After asserting that childhood traumatic grief is not consistently differentiated from adult complicated grief, normal childhood bereavement, or PTSD, the authors distinguish uncomplicated bereavement as deep mental anguish or sorrow over a loss. After defining adult complicated grief as normal bereavement complicated by separation over the loss of a relationship, this article discusses childhood PTSD as a mental condition following an experienced or witnessed traumatic event, in order to differentiate these conditions from childhood traumatic grief. Addressing childhood traumatic grief itself, the authors distinguish this condition from those aforementioned by defining it as the encroachment of traumatic symptoms on a child's ability to grieve. Citing differences among childhood traumatic grief and uncomplicated bereavement, adult complicated grief, and PTSD, the authors argue that in childhood traumatic grief a child is so traumatized that he or she is unable to complete the tasks of uncomplicated bereavement and is plagued with horrors and fears associated with the idea of death. The authors suggest that mediating, assessing, and treating childhood traumatic grief is best accomplished by early assessment, careful appraisal of a child's family circumstances, and prompt intervention. The authors conclude that clinicians need to be better trained at recognizing the distinctions between childhood traumatic grief and other forms of grief in order to best serve their child clients

Summary
In Norway and the Nordic countries more generally, the awareness of children affected by parental
illness or substance abuse has increased during the last 10 years. There has also been a general shift
from inpatient to outpatient care in public hospitals, and from public hospitals to primary health
care. This shift has increased the number of parents who live at home with more severe illness while
they are in active treatment. They need more informal and formal external care in their own homes.
Until recently, care for the ill, disabled, or elderly within the family has been invisible and barely
mentioned in public documents, statistics, or research reports. This applies even more for children's
caregiving activities. In 2010, the Research Council of Norway called for research of this question,
pointing out that 'little research has been conducted in this field, where children themselves serve as
informants, and more insight is needed about which interventions and measures that provide
effective help'. The main aims of the papers discussed in this thesis have been to explore:
• The extent and nature of the children's caring activities
• The positive and negative outcomes of the children's caring activities
• Factors associated with the children's quality of life (QoL)

Keywords:
children and their life experiences;
experiences of children of parents with intellectual disabilities;
adult children, raised by parents with intellectual disabilities;
children of mothers with intellectual disabilities;
children being affected - with mothers diagnosed as having intellectual disability;
everyday life within the family, school and friends;
support from public authorities and life - as adolescents and young adults;
alternating between being children and adults;
children of parents with intellectual disabilities - risk of facing difficulties
Summary
This chapter contains sections titled:

This paper describes the experiences of bereaved children and parents and their use of UK childhood bereavement services. It forms part of a larger qualitative study and was undertaken in the context of questions about the impact of bereavement on children and their status and participation in research, raising important methodological and ethical issues. Interviews were undertaken with 24 bereaved children and 16 parents who had used one of eight organizational case study services. Participant observation of six group interventions was undertaken. The study identified a multiplicity of bereavement experiences both within and between families. Children identified difficulties in managing and expressing their feelings, isolation, problems at school, and fear for their surviving parent. Parents found it difficult to maintain their parenting role as they struggled with their own bereavement and the disruption in their circumstances. Children and parents who participated in interventions were able to describe the significant ways in which they found it helpful, including the benefit of speaking to someone who understood their experience. Although some experienced difficulties in attending group interventions, bereaved parents welcomed the support to help them provide appropriate care for their bereaved child. By providing an "ecological niche" for bereaved children, UK childhood bereavement services contribute to meeting outcomes identified in recent policy initiatives.

Notions of 'being' and 'becoming' are intrinsic to childhood research. Whilst the 'being' child is seen as a social actor actively constructing 'childhood', the 'becoming' child is seen as an 'adult in the making', lacking competencies of the 'adult' that he or she will 'become'. However, I argue that both approaches are in themselves problematic. Instead, theorising children as 'being and becomings' not only addresses the temporality of childhood that children themselves voice, but presents a conceptually realistic construction suitable to both childhood researchers and practitioners.

Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:·[vbTab]is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;·[vbTab]provides the perspectives of children, parents and key professionals in contact with these families;·[vbTab]reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; ·[vbTab]provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;·[vbTab]makes concrete recommendations and suggestions for improving policy and professional practice;·[vbTab]contributes to the growing evidence base on parental mental illness and outcomes for children and families.

Three definitional issues regarding children exposed to domestic violence are examined. First, the multiple ways in which a child can be exposed to violence is discussed. A taxonomy of 10 types of exposure is proposed. Nine key characteristics of domestic violence, as they relate to children and children's exposure, are then outlined. The third issue addressed concerns why children who are exposed to domestic violence can be considered victims of child maltreatment. These children, by nature of their experience in the home, are psychologically maltreated and are also at high risk for physical abuse and some risk for sexual abuse. Empirical questions concerning these definitions and taxonomies and their interrelations are discussed.

This article is based on a project studying children growing up in precarious environments and life situations in Sweden. Data have emerged from the explorative study "Children in precarious life situations". Regardless of Sweden's long tradition in the social welfare field many children have difficulties and do not feel mentally well. The aim of this article is to increase the knowledge of children in precarious environments and life sitations and to explore the existence of exposed arenas where many children spend their everyday lives.

The article reports on a longitudinal study of children placed in a children's home in Malmö, Sweden, at the beginning of the 1980s. The 26 children, placed when younger than four years of age and staying more than four weeks in the children's home, were followed up three and nine months after leaving the children's home as well as five, ten and fifteen years later. Interviewing the parties concerned was the predominant research method. Twenty of the 26 children in the research group also had later experiences of out-of-home care, including foster care, in addition to the stay at the children's home. This article is about them, 15–20 years old when interviewed in the latest follow-up study. Three aspects of "outcome" are focused on: the degree of stability in the children's living conditions; relationships to parents and foster parents; well-being and emotional and behavior problems. Bearing in mind that the concept of well-being is relative, a cautious conclusion is that a third of the children in the study experienced well-being, a third felt "o.k.," and a third had serious problems, including criminal activities and drugs. The somewhat unclear connection between well-being, stability in living conditions, and sense of family belonging is discussed.

Dissertation

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants. Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents. Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one's parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia. Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs. Ort, förlag, år, upplaga, sidor Borås: Högskolan i Borås, 2019.SerieSkrifter från Högskolan i Borås, ISSN 0280-381X ; 101 Nyckelord [en] Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life

Akad. Avh.

OBJECTIVE: To review the literature investigating the effects of parental affective illness on children over the past decade. METHOD: A computerized search of articles published over the past 10 years was completed. Articles were reviewed and relevant studies are presented. RESULTS: Over the course of the past 10 years a number of longitudinal studies have confirmed that children of affectively ill parents are at a greater risk for psychiatric disorders than children from homes with non-ill parents. Life table estimates indicate that by the age of 20 a child with an affectively ill parent has a 40% chance of experiencing an episode of major depression. Children from homes with affectively ill parents are more likely to exhibit general difficulties in functioning, increased guilt, and interpersonal difficulties as well as problems with attachment. Marital difficulties, parenting problems, and chronicity and severity of parental affective illness have been associated with the increased rates of disorder observed in these children. CONCLUSION: The presence of depression in parents should alert clinicians to the fact that their children also may be depressed and therefore in need of services

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Objective: Maternal depression is a consistent and well-replicated risk factor for child psychopathology. The authors examined the changes in psychiatric symptoms and global functioning in children of depressed women 1 year following the initiation of treatment for maternal major depressive disorder. Method: Participants were 1) 151 women with maternal major depression who were enrolled in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and 2) their eligible offspring who, along with the mother, participated in the child STAR*D (STAR*D-Child) study (mother-child pairs: N=151). The STAR*D study was a multisite study designed to determine the comparative effectiveness and acceptability of various treatment options for adult outpatients with nonpsychotic major depressive disorder. The STAR*D-Child study examined children of depressed women at baseline and involved periodic follow-ups for 1 year after the initiation of treatment for maternal major depressive disorder to ascertain the following data: 1) whether changes in children's psychiatric symptoms were associated with changes in the severity of maternal depression and 2) whether outcomes differed among the offspring of women who did and did not remit (mother-child pairs with follow-up data: N=123). Children's psychiatric symptoms in the STAR*D-Child study were assessed using the Schedule for Affective Disorders and Schizophrenia for School-Age Children—Present and Lifetime Version (K-SADS-PL), and maternal depression severity in the STAR*D study was assessed by an independent clinician, using the 17-item Hamilton Depression Rating Scale (HAM-D). Results: During the year following the initiation of treatment, maternal depression severity and children's psychiatric symptoms continued to decrease over time. Decreases in the number of children's psychiatric symptoms were significantly associated with decreases in maternal depression severity. When children's outcomes were examined separately, a statistically significant decrease in symptoms was evident in the offspring of women who remitted early (i.e., within the first 3 months after the initiation of treatment for maternal depression) or late (i.e., over the 1-year follow-up interval) but not in the offspring of nonremitting women. Conclusions: Continued efforts to treat maternal depression until remission is achieved are associated with decreased psychiatric symptoms and improved functioning in the offspring.

Background  We investigated mother–child relationships and self-esteem of typical children of mothers with intellectual disability.

Methods  Eighteen girls and 18 boys from various ethnic groups were administered questionnaires to assess: (a) attachment style; (b) caregiver style; (c) perception of maternal stigma; and (d) self-esteem. The children were also asked to list the identities or roles that they play in life.

Results  Results suggested that: (a) the relationship between the child's perception of stigma and attachment to the mother is mediated by the warmth of the mother's caregiving style; and (b) if the child has an avoidant or anxious/ambivalent attachment to the mother, self-esteem tends to be lower. Furthermore, multiple identities contribute to positive self-esteem among these children.

Conclusions  Results are discussed in relation to the model presented and the consistency of the findings with attachment theory.

This study examines the life circumstances and experiences of 4084 children affected by maternal addiction to alcohol or other drugs. The paper will address the characteristics of their caregivers, the multiple risk factors faced by these children, their health and development, and their school performance. Data were collected from mothers at intake into 50 publicly funded residential substance abuse treatment programs for pregnant and parenting women. Findings from this study suggest that children whose mothers abuse alcohol or other drugs confront a high level of risk and are at increased vulnerability for physical, academic, and social-emotional problems. Children affected by maternal addiction are in need of long-term supportive services.

Background Children of parents with intellectual disability are assumed to be at risk of poor outcomes but a comprehensive review of the literature has not previously been undertaken.
Method A database and reference search from March 2010 to March 2011 resulted in 26 studies for review.
Results Two groups of studies were identified. The first investigated an association between parental intellectual disability and child outcomes where there was significant disadvantage. Some findings suggest low parental intellectual capacity can negatively impact child outcomes, but others indicate child development approaches population norms. A second, small group of studies explored narrative accounts of childhood to find that social exclusion, bullying, and stigma are commonplace. Removal from parental care emerged as a significant risk for this group of children.
Conclusions Studies focusing on child development represent 85% of the literature but reach no consensus about likely developmental or behavioural outcomes. Children studied usually come from clinical populations or other high-risk groups, and are typically young children.

Clinical and experimental studies of children of survivors of the Nazi Holocaust are evaluated critically. Methodological inadequacies are identified, questions bearing on the interpretation of results are raised, and suggestions for future research directions are offered.

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Semi-structured interviews were conducted with 7-to-14-year-old children of parents with multiple sclerosis (MS; N = 21) to examine children's perceptions of MS, and a content analysis was conducted. Children observed visible and 'invisible' symptoms and affective distress. Few children had information about the physiological process of MS. The most frequent categories of causal beliefs were fate or chance, contagion and congenital/hereditary factors. Many children mentioned their own or other people's behaviour as influences on the course of MS. No children believed that parents' MS would get worse. Children need developmentally appropriate information, reassurance about their effect on parents and their own risk of contracting MS, and discussion of the stress on the family. The study suggests the value of psycho-educational intervention for many families with MS.

Keywords:
parental death;childhood grieving;bereavement intervention
This article reviews the evidence regarding the effects of parental death on children's acute and long-term psychological adjustment, as well as the clinical literature describing interventions for bereaved families. The risk of adjustment difficulties for bereaved children has shown no consistent relation to complications of grieving, but is instead largely accounted for by an increased probability of inadequate care following the loss of a parent. The literature describing interventions for bereaved families offers little formal evaluation, and reflects our incomplete understanding of children's grief responses, and thus of appropriate treatment goals. Further research should focus on more molecular analysis of grief processes, including grief-related interactions between children and parents, and should take into account developmental variation in children's needs and experiences. The use of multiple informants of child and parent behavior is strongly recommended, and the unique contributions of longitudinal research in understanding children's adjustment to loss are highlighted.

Purpose: This study was carried out in order to evaluate children's experiences after taking part in the pilot clinical intervention "See Me" aimed at supporting children as relatives.
Method: A qualitative explorative design with interviews was chosen, with analyses using an inductive approach. Interviews were conducted with 19 children (9 aged 7–12 years and 10 aged 13–18 years). The younger children were asked to draw a picture of a person in hospital, using the Child Drawing: hospital (CD:H) instrument to measure the child's level of anxiety. The older children completed the Caring Professional Scale (CPS) as a measure of the caring approach in their encounter with the nurse.
Results: The interviews with the children show that: they felt expected and welcomed at the hospital; they needed knowledge about their parent's situation; they needed information and participation based on their individual situation; and they needed the nurse to offer them information and support. The results from the pictures showed that one child had above-average levels of anxiety. The older children reported that the nurses were Competent Practitioners, but to a lesser degree that they were Compassionate Healers. Conclusions: The results of this pilot study indicate that the structure of "See Me" could be used as a starting point to ensure that children as relatives receive information, advice, and support. Further the results indicate that both CD:H and CPS could be used to evaluated children's experiences of support when a parent has a long-term illness.

Abstract
AIM:
This paper provides a review of published qualitative research on children's experiences of parental mental illness.
METHODS:
We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers.
RESULTS:
Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience--the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness.
CONCLUSIONS:
Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike.

Objective: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated.
Methods: Conceptual paper based on narrative review.
Results: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions.
Conclusion: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.

OBJECTIVE: To investigate the support given to young children of patients with stroke by rehabilitation teams and to identify characteristics of the patients, spouses and children that relate to children's adjustment 2 months after the patient's discharge. SUBJECTS AND METHODS: Seventy-seven children (< or =18 years of age) of patients with stroke consecutively admitted to inpatient rehabilitation were included. Adjustment was measured with the Child Behaviour Check List, Child Depression Inventory and Functional Status II. Multilevel regression analyses were conducted to identify determinants of adjustment. RESULTS: Half of the children received some form of support from a rehabilitation team. Receiving more support was related to more severe disability of the parent with stroke, but not to the child's health or behavioural problems at the start of the stroke victim's inpatient stay. At the start of rehabilitation, 54% of the children had subclinical or clinical problems. Children's adjustment 2 months after their parent's discharge was related to the strain on spouses and not to the patients' characteristics or those of the support. CONCLUSION: The children's adjustment was related to the strain perceived by the healthy parent. There is a need for support that focuses on the experience of children of patients with stroke, regardless of stroke severity.

This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Abstract
PURPOSE:
This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Recent research indicates that a considerable number of children report extreme feelings of loneliness and that unpopular children are more lonely than popular children. In the present study, we assessed feelings of loneliness of two subgroups of unpopular children, those who were sociometrically rejected versus those who were sociometrically neglected. Data on popular, average, and controversial children were also collected. Results from 200 third- through sixth-grade children indicated that rejected children were the most lonely group and that this group differed significantly from other status groups. Neglected children did not differ from higher status peers. Overall, the results provide added evidence of the utility of the distinction between neglected versus rejected status and provide support for earlier conclusions that rejected children are more at risk than are other status groups.

The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.

Children's perceptions and experiences of care giving: A focus group study (PDF Download Available). Available from: https://www.researchgate.net/publication/232937648_Children's_perceptions_and_experiences_of_care_giving_A_focus_group_study [accessed Nov 15 2017].

Since the last major empirical review on choice interventions and preference assessments among people with severe to profound developmental disabilities (Lancioni, O'Reilly, & Emerson, 1996) the body of research in this area has grown extensively. This paper reviews thirty studies carried out between 1996 and 2002 that have been sorted into four categories. These categories are (a) building choice opportunities into daily contexts; (b) assessing the effects of choice making on various parameters of behavior; (c) assessing preferences; and (d) assessing the effectiveness of various preference assessment formats. The main findings in these studies were that choice interventions led to decreases in inappropriate behavior and increases in appropriate behavior, and that various preference assessments could be used to identify reinforcing stimuli. The findings are discussed in relation to technical and practical rehabilitation questions. Potential issues for future research are also examined.

The author draws extensively on the published research findings in child health psychology, and also on her own experience of working with pediatric medical and nursing staff. The emphasis throughout her book is on coping, and helping families to cope, with the stresses imposed by chronic childhood illness. Frequent hospital admissions, pain and its evaluation and control, adjustment and sources of support, communication, education and programs for intervention, all of these topics are discussed sensitively and with authority.

The Minnesota longitudinal study of parents and children from birth to adulthood provides both a theoretical framework and a host of empirical findings that can serve to bridge the gap between research and clinical application. Key among these findings are: (a) the ongoing impact of early relationship experiences throughout the years, even with later experience and circumstances controlled; (b) the cumulative nature of experience and its continual impact with current context; (c) the important role of adult partner relationships; (d) the increasingly active role of the persons themselves in their own development; and (e) the interplay between experience, representation, and ongoing adaptation. These findings, and the theoretical structure underlying them, suggest the need for complex, comprehensive intervention that begins early, with a focus on altering the quality of parent - child relationships. At the same time, additional components, including couples therapy and efforts to alter the child's inner constructions of experience, are clearly suggested. One must attend to forces maintaining children on maladaptive developmental pathways once established, as well as understanding the factors that initiated such pathways.

This study assessed the associations of characteristics of domestic violence incidents with clinically significant levels of traumatic symptoms and behavioral problems in a socio-economically and ethnically mixed sample of 687 children participating in a community-service program for children witnessing violence. Study predictors included child/family demographic characteristics, type and chronicity of exposure, and child's perceptions of control over the event and threat to personal safety. Outcomes consisted of traumatic symptoms and behavior problems. Results showed that perceived threat and control were associated with greater odds of clinically significant levels of several trauma symptoms (and behavior problems in the case of perceived threat) after adjusting for effects of demographic factors and violence characteristics. Child co-victimization increased odds of reaching clinically significant levels of traumatic symptoms compared to children who witnessed the event but were not victimized. Female sex and White ethnicity increased odds of specific trauma symptoms and behavior problems. Increasing age reduced odds of some trauma symptoms. Associations between predictors and one outcome measure did not generalize across the other outcome measure. Implications of study findings, and directions for future research are discussed.

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.

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

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.

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.

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.

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 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 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 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 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.

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 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."

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

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

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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.

Doktorsavhandling

The overall aim was to describe the siblings' thoughts on and experiences of needs, problems and supports when their brother or sister is being treated or undergoing follow-ups for or has died of cancer. The thesis uses a life-world perspective with open interviews (Papers I-IV). It describes the siblings' needs and issues when a brother or sister dies of cancer n=10 (Paper I), and it develops an understanding of the everyday experiences of siblings with a brother or sister who is receiving or has completed treatment for a cancer disease n=10 (Paper II). The thesis looks at the siblings' thoughts on their experiences of being a sibling of a brother or sister during his or her treatment or who has been treated for or has died from cancer n=20 (Paper III). The thesis also describes the siblings' experiences of being involved in a therapeutic support group when the family had or had had a child with cancer n=15 (Paper IV). The methods used to analyse the interview texts were qualitative content analysis (I, III, IV) and phenomenological hermeneutic analysis (II). The findings show that the sibling relationships strengthened. The siblings lacked support and felt they were not being given information. There was underlying anxiety and loneliness. There was a new consideration in their daily life with the sick brother or sister constantly at the centre. It was very important that the family felt well. Thoughts about death were not allowed and they tried to repress them. Anticipatory grief started already with the diagnosis. The grief when a brother or sister dies varies over time and in how it manifests itself, and there are short breaks. Therapeutic support groups with tools such as pictures and paintings validated the siblings' feelings and gave them support regardless of their age and sex. The results demonstrate a need to preserve the sibling's health. Consideration and respect for all family members may lessen suffering. Regular and appropriate information about the disease, treatment and the patient's condition is needed, as well as the offer of therapeutic support, individually or in groups.

Våld i nära relationer är ett folkhälsoproblem, med allvarliga fysiska och psykiska konsekvenser för den som utsätts och kan även leda till svåra sociala problem. Vanligast är att kvinnor utsätts för våld i nära relationer, och den som utövar våldet är oftast en manlig partner eller före detta partner. Barn som tvingas bevittna våld i sin närmiljö riskerar att fara mycket illa. Den i särklass allvarligaste riskfaktorn för barnmisshandel är om det förekommer våld mellan vuxna i hemmet.

Många våldsutsatta kvinnor söker hälso- och sjukvård för diffusa fysiska och psykiska symtom, men de berättar sällan om våldet eftersom de inte alltid sätter sina hälsoproblem i samband med våldsutsattheten. Många våldsutsatta kvinnor söker sig även till socialtjänsten för att få stöd och hjälp, exempelvis med ansökan om ekonomiskt bistånd eller andra insatser, utan att de berättar om våldet de blir utsatta för.

En förutsättning för att våldsutsatta ska få adekvat vård, stöd och hjälp är att våldsutsattheten upptäcks. Att personal inom hälso- och sjukvården och socialtjänsten frågar om erfarenhet av våld kan underlätta för den våldsutsatta att berätta om sin situation och att söka stöd och hjälp.

Socialstyrelsen rekommenderar hälso- och sjukvården att alla kvinnor som uppsöker mödrahälsovården bör tillfrågas om erfarenhet av våld. Det vetenskapliga stödet för denna rekommendation är forskning som visar att rutinfrågor inom mödrahälsovården markant ökar upptäckten av våld. Mödrahälsovården lyfts också fram som en lämplig verksamhet att ställa frågor i, eftersom de gravida kvinnorna befinner sig i en viktig fas i livet och ofta kan ha en regelbunden kontakt med personalen. Även WHO anger mödrahälsovården som en verksamhet där rutinfrågor om våld kan ställas.

Socialstyrelsen rekommenderar att hälso- och sjukvården bör fråga alla kvinnor som uppsöker psykiatrisk vård om erfarenhet av våld. Våldsutsatta kvinnor är överrepresenterade inom den psykiatriska vården. Våld i nära relationer kan även leda till allvarlig psykisk ohälsa. WHO har framhållit att rutinfrågor om våld kan vara en del av god klinisk praxis, särskilt eftersom detta kan påverka behandling och vård av den våldsutsatta.

Socialstyrelsen rekommenderar att hälso- och sjukvården bör ta upp frågan om våld i alla ärenden inom barn- och ungdomspsykiatrin (BUP). Forskning visar att psykisk ohälsa är vanlig hos barn som lever med våld i familjen. Att ta upp frågan om våld i alla ärenden inom BUP kan innebära att upptäckten av barn som bevittnat våld ökar och, liksom inom vuxenpsykiatrin, utgöra en del av god klinisk praxis.

Nästa steg i arbetet blir att ta fram rekommendationer för missbruks- och beroendevården.

Socialstyrelsen rekommenderar hälso- och sjukvården och socialtjänsten att erbjuda personal fortbildning om våld i nära relationer, i syfte att upptäcka våldet. En anledning till att personal idag inte ställer frågor om våld kan vara att man anser sig ha otillräckliga kunskaper och saknar beredskap för att hantera svaret. Därför är det angeläget att öka kunskaperna inom hälso- och sjukvården och socialtjänsten om våld i nära relationer.

Rapport 4 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.

Rapporten belyser hälsa och livsvillkor för unga vuxna i åldern 30-35 år i en anhöriggrupp som växt upp med föräldrar som vårdades på sjukhus på grund av missbruk och/eller psykisk sjukdom, och baseras i sin helhet på uppgifter från nationella register.

Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov.
Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga.
Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.

Preschool to school-age trajectories of 242 children, including 37 with insecure-disorganized and 66 with insecure-organized attachment patterns, were examined. Child attachment and stressful life events (the latter retrospectively) were measured at ages 5-7, and mother-child interactive quality, parenting stress, marital satisfaction, and teacher-reported behavior problems were evaluated concurrently and 2 years earlier. Results indicated that all three disorganized subgroups had poorer mother-child interactive patterns and more difficult family climates than secure or insecure-organized children. The controlling-punitive group showed significant increases in maternal reports of child-related stress between preschool and school age. The controlling-caregiving group showed greater likelihood of loss of a close family member, and mothers of the insecure-other group reported lower marital satisfaction and greater likelihood of their own or a spouse's hospitalization. Controlling-punitive children had higher externalizing scores, and controlling-caregiving children higher internalizing scores, than secure children.

Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling-Caregiving, Controlling-Punitive, and Behaviorally Disorganized Children. (PDF Download Available). Available from: https://www.researchgate.net/publication/8471077_Attachment_at_Early_School_Age_and_Developmental_Risk_Examining_Family_Contexts_and_Behavior_Problems_of_Controlling-Caregiving_Controlling-Punitive_and_Behaviorally_Disorganized_Children [accessed Jan 3, 2016].

In 1985 the SRCD Monographs series broke with tradition to publish a collection of papers exploring the new growth and directions of attachment theory and research. In the ensuing decade, many of the questions that were posed in that collection-such as, for instance, those concerning cognitive representations of attachment-as well as the methods and analytic approaches used by some of the authors to address these questions (e. g., Q-techniques) are no longer novelties but rather stand as paradigmatic examples of mainstream attachment research. In the present collection, several of the issues raised in the 1985 Monograph are revisited; these include the meaning and implications of attachment in cultures other than the United States and Western Europe (Posada, Gao, et al.), the nature of relations between attachment and temperament constructs (Seifer & Schiller), the links between quality of attachment and the mother's concurrent sensitivity (Pederson & Moran), and the association seen in children between attachment and mood (Lay, Waters, Posada, & Ridgeway). New approaches to traditional questions are explored by examining the relations among a child's different attachment relationships (Sagi et al.) and by constructing strategies for classification of infant-mother attachments on the basis of observations made in the home (Strayer, Verissimo, Vaughn, & Howes); the study of the relation between infant secure-base behavior and maternal support is extended to the investigation of macaque pairs (Kondo-Ikemura & Waters). New questions about links between attachment and other intimate relationships are considered; these include the relation between adults' attachment history and both the quality of their relationship with an intimate partner (Owens et al.) and the organization of secure-base behavior that their child shows in the home (Posada, Waters, Crowell, & Lay). Focusing on recent advances in research on cognitive development, consideration is also given to methodological issues relating to the assessment of young children's mental representations of relationships (Oppenheim & Waters). In all, the aim of the Monograph is both to consolidate our understanding of the empirical advances that have occurred in this domain of research over the last decade and to stimulate investigators to move beyond current understandings as well as current empiricism.

The age range of 18–36 months was selected as to best expand upon our previous research comparing virtual parental presence, physical presence, and complete parental absence (Tarasuik et al., 2011), as the results were strongest within this age range, and Attachment behaviors are known to occur with this age range (e.g., The MacArthur Preschool Strange Situation; Cassidy and Marvin, 1992).

Children born to mothers who had abused alcohol throughout pregnancy had severe behavioural and intellectual problems which remained at age 11 to 14 years. Of 24 children examined, 10 had attention deficit hyperactivity disorder (ADHD) with or without developmental coordination disorder, two had Asperger syndrome, and one had an autistic-like condition not meeting the criteria for Asperger syndrome. Six of these 24 attended special schools for the mentally retarded and a further 11 were given special education, leaving only seven attending regular schools without any type of support. The children had difficulties in mathematics, logical conclusions, visual perception, spatial relations, short-term memory, and attention. Sixteen children lived in foster homes. There was a clear correlation between the occurrence and severity of the neuropsychiatric disorder and the degree of alcohol exposure in utero.

Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications.

The association between attention-deficit hyperactivity disorder (ADHD) and criminality has been increasingly recognized as an important societal concern. Studies conducted in different settings have revealed high rates of ADHD among adolescent offenders. The risk for criminal behavior among individuals with ADHD is increased when there is psychiatric comorbidity, particularly conduct disorder and substance use disorder. In the present report, it is aimed to systematically review the literature on the epidemiological, neurobiological, and other risk factors contributing to this association, as well as the key aspects of the assessment, diagnosis, and treatment of ADHD among offenders. A systematic literature search of electronic databases (PubMed, EMBASE, and PsycINFO) was conducted to identify potentially relevant studies published in English, in peer-reviewed journals. Studies conducted in various settings within the judicial system and in many different countries suggest that the rate of adolescent and adult inmates with ADHD far exceeds that reported in the general population; however, underdiagnosis is common. Similarly, follow-up studies of children with ADHD have revealed high rates of criminal behaviors, arrests, convictions, and imprisonment in adolescence and adulthood. Assessment of ADHD and comorbid condition requires an ongoing and careful process. When treating offenders or inmates with ADHD, who commonly present other comorbid psychiatric disorder complex, comprehensive and tailored interventions, combining pharmacological and psychosocial strategies are likely to be needed.

The association between attention-deficit hyperactivity disorder (ADHD) and criminality has been increasingly recognized as an important societal concern. Studies conducted in different settings have revealed high rates of ADHD among adolescent offenders. The risk for criminal behavior among individuals with ADHD is increased when there is psychiatric comorbidity, particularly conduct disorder and substance use disorder. In the present report, it is aimed to systematically review the literature on the epidemiological, neurobiological, and other risk factors contributing to this association, as well as the key aspects of the assessment, diagnosis, and treatment of ADHD among offenders. A systematic literature search of electronic databases (PubMed, EMBASE, and PsycINFO) was conducted to identify potentially relevant studies published in English, in peer-reviewed journals. Studies conducted in various settings within the judicial system and in many different countries suggest that the rate of adolescent and adult inmates with ADHD far exceeds that reported in the general population; however, underdiagnosis is common. Similarly, follow-up studies of children with ADHD have revealed high rates of criminal behaviors, arrests, convictions, and imprisonment in adolescence and adulthood. Assessment of ADHD and comorbid condition requires an ongoing and careful process. When treating offenders or inmates with ADHD, who commonly present other comorbid psychiatric disorder complex, comprehensive and tailored interventions, combining pharmacological and psychosocial strategies are likely to be needed.

The diagnosis of attention-deficit/hyperactivity disorder (ADHD) is based on well defined criteria, which describe a number of symptoms. It is important to consider the context of the symptoms, in terms of the influence of the child's family and school. Although stimulant medications benefit selected children they may not benefit all children with symptoms of ADHD. The incidence of ADHD increases with social disadvantage. There is a potential danger of using stimulant medication alone to treat children with complex psychosocial problems, associated with social disadvantage, including Aboriginal children. We desperately need better training in the management of ADHD and better access to child psychiatrists.

A state-wide survey of 453 clinicians serving people with severe mental illness in community mental health centers evaluated the degree to which they provide services to families and their perceptions of barriers to developing such services. Most clinicians did not provide many services to families and reported barriers related to the family or client (e.g., family's lack of interest) and their own work environment (e.g., heavy workload). Clinicians who had received prior training on working with families provided more services, had more positive attitudes toward family, and felt more competent about their knowledge, confirming the importance of staff training.

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

Much evidence suggests that the mental lexicon is organized into auditory neighborhoods, with words that are phonologically similar belonging to the same neighborhood. In this investigation, we considered the existence of visual neighborhoods. When a receiver watches someone speak a word, a neighborhood of homophenes (ie, words that look alike on the face, such as pat and bat) is activated. The simultaneous activation of a word's auditory and visual neighborhoods may, in part, account for why individuals recognize speech better in an auditory-visual condition than what would be predicted by their performance in audition-only and vision-only conditions. A word test was administered to 3 groups of participants in audition-only, vision-only, and auditory-visual conditions, in the presence of 6-talker babble. Test words with sparse visual neighborhoods were recognized more accurately than words with dense neighborhoods in a vision-only condition. Densities of both the acoustic and visual neighborhoods as well as their intersection overlap were predictive of how well the test words were recognized in the auditory-visual condition. These results suggest that visual neighborhoods exist and that they affect auditory-visual speech perception. One implication is that in the presence of dual sensory impairment, the boundaries of both acoustic and visual neighborhoods may shift, adversely affecting speech recognition.

As AAC use continues to flourish and new technology revolutionizes the field, tomorrow's service providers need current, authoritative information on AAC for children and adults with communication disorders. That's why David Beukelman and Pat Mirenda have revised and updated the bestselling Augmentative and Alternative Communication—the trusted, widely adopted graduate-level text on communication disorders and AAC. The foundational textbook for SLPs, OTs, PTs, teachers, and other professionals in clinical and educational settings, this fourth edition is a definitive introduction to AAC processes, interventions, and technologies that help people best meet their daily communication needs. Future professionals will prepare for their work in the field with critical new information on
advancing literacy skills (new chapter by Janice Light and David McNaughton)
conducting effective, culturally appropriate assessment to determine AAC needs
choosing AAC interventions appropriate for age and ability
selecting AAC vocabulary tailored to individual needs
using new consumer technologies as easy, affordable, and non-stigmatizing communication devices
understanding types of symbols and how individuals use them
promoting social competence
supporting language learning and development
providing effective support to beginning communicators
planning an inclusive education for students with complex communication needs
Readers will get a thorough overview of communication and AAC issues for people with specific developmental disabilities (including cerebral palsy, intellectual disability, and autism) and acquired disabilities (such as aphasia, traumatic brain injury, and degenerative cognitive and linguistic disorders). And with helpful photos, figures, and photocopiable forms, readers will be ready to collect and use important information on assessment, individual communication needs, classroom supports, and more.
An essential core text for tomorrow's professionals—and a key reference for inservice practitioners—this new fourth edition expertly prepares readers to support the communicative competence of children and adults with a wide range of complex needs.

Augmentative and alternative communication (AAC) research and intervention for individuals with severe intellectual disabilities has advanced significantly in the last 5 years. This paper provides an integrated review of the current literature in this area, suggests future research directions, and delineates clinical and educational implications. The integration of behavioral and technological advances in the AAC field provides an optimistic outlook for the future development of functional communication systems for persons with severe intellectual disabilities.

A binary switch based on the detection of periodic vocal cord vibrations is proposed for individuals with multiple and severe disabilities. The system offers three major advantages over existing speech-based access technologies, namely, insensitivity to environment noise, increased robustness against user-generated artifacts such as coughs, and reduced exertion during prolonged usage periods. The proposed system makes use of a dual-axis accelerometer placed noninvasively in proximity of the vocal cords by means of a neckband. Periodic vocal cord vibrations are detected using the normalized cross-correlation function computed from anteriorposterior and superiorinferior accelerometry signals. Experiments with a participant with hypotonic cerebral palsy show the proposed system outperforming a popular commercial sound-based system in terms of sensitivity, task time, and user-perceived exertion. © 2010 IEEE.

OBJECTIVES: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.
METHOD: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.
RESULTS: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.
CONCLUSION: The clinical implications of awareness of carer distress in people with dementia should be considered.

Resultatenhetschefen, som är ansvarig för verksamheten poängterar att anhörigstöd innebär "ett annat synsätt och en annan lyhördhet för en annan problematik", vilket kräver ett visst förhållningssätt. Vikten av att det är samma person som avlöser vid varje tillfälle betonas, eftersom det gör att både den anhörige och den sjuke närstående kan känna sig trygga.

I dagsläget är det tre undersköterskor som arbetar som avlösare. De har fått särskild utbildning i medmänskligt stöd, palliativ vård, stroke och demens. Avlösarteamet har ett möte med anhörigsamordnaren varje vecka och varannan månad får gruppen professionell handledning av en beteendevetare. Samtliga undersköterskor i avlösarteamet framhåller att teamet fungerar mycket bra. De säger till och med att arbetssättet är något de "spånat på flera gånger i livet, just att få jobba i team mot samma mål och nu är man här". De betonar att de vuxit som människor, att de upplever att de kan göra skillnad och att de inte skulle vilja byta tillbaka till hur de arbetade tidigare. Avlösarna understryker att arbetet i avlösarservicen skiljer sig mycket från arbetet i hemtjänsten. I dagsläget har avlösarna sex till åtta hushåll var som de arbetar i, vilket framhålls som maxantalet som de hinner med. Efterfrågan fortsätter emellertid att öka.

Flera av dem som idag har avlösarinsatser i hemmet har inte tidigare haft någon kontakt med den offentliga vården och omsorgen. Avlösarteamet poängterar att de skulle kunna hitta många fler som har behov av den här insatsen, men att ett stort antal av dem som vårdas hemma anses för friska för att den anhörige ska få beviljat anhörigstöd. Detta gör att anhörigstödet inte kan fylla den preventiva funktion som det borde.

De anhöriga har varit uteslutande positiva till avlösarteamet och pekat på omfattande kvalitetsförbättringar i deras enskilda liv. Samtliga anhöriga framhåller att det är ytterst viktigt att det är samma person som kommer och avlöser i hemmet, för att skapa trygghet och kontinuitet för den närstående. För den som är demenssjuk är detta särskilt viktigt.

Det hembesök som görs inledningsvis beskrivs som mycket positivt. De som är berörda får möjlighet att bekanta sig med varandra i hemmiljön, och det skapar förutsättningar för att man ska känna sig trygg med den nya insatsen. Familjen tycker också att det är mycket positivt att det är kommunen som tar kontakt och initierar hembesöket eftersom det många gånger kan vara svårt att ta det steget själv.

Arbetssättet möjliggör såväl flexibilitet och kontinuitet som trygghet och individanpassning. Dessutom görs sannolikt ekonomiska besparingar på lång sikt i och med att en inflyttning på ett heldygnsboende kan skjutas upp, men också genom att anhörigas hälsa och ork bevaras. Det finns ett stort stöd för arbetssättet inom samtliga led i kommunen och i slutet av år 2007 beslutades att avlösarna helt och hållet ska lyftas ur sina ordinarie arbeten för att arbeta i avlösarteamet. Detta kommer att underlätta mycket för såväl avlösarna, som får en tydligare roll och en mer regelbunden arbetssituation, som för de anhöriga, som får lättare att boka tider som passar deras behov. Om avlösarteamet vidareutvecklas till att även fungera som demensteam vid behov görs ytterligare kvalitetsvinster.

Teamet arbetar för närvarande med avlösarservice i 26 hushåll. Finns det tid över prioriteras den efter behov för individuellt stöd, råd och handledning till anhörigvårdaren, utöver den avlösningen om tio timmar/månad. Ambitionen är att ge stödet så tidigt som möjligt för att förebygga ohälsa och öka chansen till bibehållen livskvalitet. Avlösarteamet har också fått tid för reflektion, handledning och dokumentation. Skulle det därutöver finnas tid ger teammedlemmarna lite "guldtid" för de boende på ett av kommunens demensboende.

Under fyra månader vistades Jessica
Holmgren vid tre kommunala äldreboenden
i landet. Resultatet blev en doktorsavhandling
som bland annat visar att
anhöriga betraktas som besökare, och att
det behövs alternativa synsätt både på anhöriga
och delaktighet.

OBJECTIVE:
To compare rates of avoidable mortality in adolescence in child welfare recipients and intercountry adoptees with the general population.
DESIGN:
A register study of the entire national cohort of 989 871 Swedish residents born 1973-82 in the national census of 1990. Multivariate Cox analyses of proportional hazards were used to analyse avoidable deaths between 13 to 27 years of age during 1991-2000.
PARTICIPANTS:
12 240 intercountry adoptees, 6437 foster children, 15 868 subjected to other forms of child welfare interventions, and the remaining 955 326 children in the cohort.
RESULTS:
Intercountry adoptees had a high sex and age adjusted relative risk (RR) for suicide death only (RR 3.5; 95% CI 2.3 to 5.0) in comparison with the general population, while foster children and adolescents who had received other kinds of child welfare interventions had high sex and age adjusted RRs for suicide death; 4.3 (2.8 to 6.6) and 2.7 (1.9 to 3.9) respectively, as well as for other avoidable deaths; RRs 2.5 (1.6 to 3.7) and 2.8 (2.1 to 3.6). The RRs of avoidable deaths for foster children and other child welfare recipients decreased considerably when compared with youth brought up in homes with similar psychosocial characteristics as their original home.
CONCLUSION:
Children in substitute care in early childhood were at particular risk for suicide death in adolescence and young adulthood. Child welfare interventions were insufficient to prevent excess deaths in children at risk.

Purpose: Many Baby Boomers are faced with the care of aging parents, as well as that of disabled or ill spouses or children. This study examines how Baby Boomers in Quebec, Canada, perceive and play their role as caregivers and how this might differ from their parents' generation.

Design and methods: This was a qualitative and empirical study using an interpretive constructivist design. We interviewed 39 Baby Boomers caring for a family member with a semistructured guide that examined respondents' identification with their social generation, their relationship to and values regarding caregiving, and the reality of the caregiving they offered.

Results: In contrast to our perceptions of previous generations, the majority of interviewees refuse to be confined to the sole identity of caregiver, as they work to juggle caregiving, work, family, and social commitments. To succeed in this juggling act, they have high expectations of support from services. Based on this new approach to caregiving, we advance the idea of a "denaturalization" of care, no longer seen as a "natural" destiny or "normal" family responsibility.

Implications: The new conception of caregiving as work that can and should be shared with services is in direct opposition to public policy that is based on the assumption of family care as the cornerstone of long-term care. Can the healthcare system adapt to the new expectations of the Baby Boom generation or will these caregivers be forced to take on elements of caregiving they no longer consider legitimate?

Människan som social varelse kategoriseras på många olika sätt, men detta bortser vi ofta ifrån när det gäller personer med funktionsnedsättning. Därför blir de just personer med funktionsnedsättning, utan kön, utan etnicitet, utan sexualitet, utan klasstillhörighet och så vidare.

Under senare år har begreppet intersektionalitet blivit allt vanligare, framförallt inom de forskningsinriktningar som sysslar med människor som uppfattas som marginaliserade och/eller underordnade. Begreppet söker fånga det samspel mellan olika dimensioner som man menar är nödvändigt för att på allvar förstå situationen för dessa grupper.

Forskningen om funktionshinder har hittills saknat ett sådant perspektiv, något som kan leda till att dess analyser och teorier blir endimensionella och svåra att tillämpa.

Den här antologin är ett första svenskt bidrag till införandet av ett intersektionellt perspektiv i forskningen om funktionshinder. I boken diskuteras hur funktionshinder samspelar med andra dimensioner som kön, klasstillhörighet, sexualitet och etnicitet. Boken ger också exempel på hur metodologiska perspektiv, som kritisk realism och konstruktivism, kan bidra till intersektionell forskning om funktionshinder.

Bara funktionshindrad? vänder sig främst till studenter och forskare inom vård-, beteende- och samhällsvetenskapliga discipliner.

Barn i familjehem är ett kunskapsstöd som riktar sig till personal inom socialtjänsten som arbetar med barn i familjehem och är tänkt att ge kunskap i de olika moment som planeringen av umgänge omfattar. Kunskapsstödet utgår från regelverket inom området och bygger på kunskap från forskning och praktik.

Statens folkhälsoinstitut har undersökt hur många barn i Sverige som växer upp med föräldrar som antingen riskkonsumerar eller missbrukar alkohol, eller som missbrukar narkotika. Resultaten av denna studie, tillsammans med en analys av dessa barns situation, kan återfinnas i denna rapport.

Ett barn som växer upp med en eller två missbrukande föräldrar kan man anta utsätts för stora känslomässiga påfrestningar. Trots detta har det saknats uppgifter om hur vanlig en sådan situation är och någon analys av hur dessa barns situation ser ut. Statens folkhälsoinstitut fick därför i januari 2008 i uppdrag av regeringen att kartlägga frågan.

Analysen har utförts som en systematisk genomgång av vetenskapliga studier, och presenterar en samlad diskussion av resultaten med förhoppningen att kunna erbjuda ett underlag för förebyggande insatser inom området.

Rapporten vänder sig i första hand till beslutsfattare och yrkesverksamma med ansvar för förebyggande arbete inom kommuner, landsting, staten och frivilliga organisationer.

Många barn riskerar att växa upp under svåra familjeförhållanden. Samhället väljer därför ibland att skilja barn från sina föräldrar för att placera dem på institution eller i familjehem.

Författaren presenterar i denna bok aktuell forskning om barn i samhällsvård och ger teoretiska utgångspunkter för förståelsen av relationer, separationer och barns olika sätt att bemästra svårigheter. Vi får under en tioårsperiod följa en grupp barn som på grund av föräldrarnas missbruk tidigt placerats på barnhem och sedan i familjehem. Författaren visar att barn, föräldrar, fosterföräldrar och socialarbetare alla är delaktiga i utfallet av samhällsvården - även om socialtjänsten och samhällsvillkoren anger ramarna.

Boken är avsedd för högskoleutbildning i psykologi, socialt arbete och social omsorg samt för socialsekreterare. Den är av stort intresse för alla som arbetar med utsatta barn och familjer.

Den här rapporten redovisar resultatet av Socialstyrelsens kartläggning av de behov som barn med frihetsberövade föräldrar kan ha samt vilket stöd som finns för dessa barn. Socialstyrelsen har även analyserat om det stöd som finns för barnen motsvarar deras behov och om socialtjänsten har behov av kunskapsstöd om målgruppen.

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans
en insats som fungerar bra och har inneburit en förbättrad livskvalitet.
Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem
och risker i samband med att barn och unga beviljas personlig assistans.
Ett problemområde gäller hur unga med funktionsnedsättning ska kunna
bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas.
Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter
åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en
positiv inverkan på möjligheten att bli mer självständig. Även andra insatser,
såsom korttidsvistelse, i kombination med personlig assistans, kan främja
frigörelseprocessen.
Det andra problemområdet handlar om de barn som riskerar att fara illa
eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha
svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att
det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet
för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de
tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens
levnadsförhållanden blir därmed begränsad och de kan bli isolerade från
samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.
För att öka möjligheterna till delaktighet, självständighet och utveckling
för barn och unga med personlig assistans anser Socialstyrelsen det angelä-
get:
• att kommuner i sina bedömningar tar hänsyn till att ungdomar som har
personlig assistans även bör få andra insatser som kan underlätta en frigö-
relseprocess
• att såväl privata som kommunala assistansanordnare ska beakta att ungdomar
som har anhöriga som assistenter även bör ha externa assistenter
• att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i
samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt
barns assistans
• att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet
ska se ut

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans en insats som fungerar bra och har inneburit en förbättrad livskvalitet. Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem och risker i samband med att barn och unga beviljas personlig assistans.

Ett problemområde gäller hur unga med funktionsnedsättning ska kunna bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas. Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en positiv inverkan på möjligheten att bli mer självständig. Även andra insatser, såsom korttidsvistelse, i kombination med personlig assistans, kan främja frigörelseprocessen.

Det andra problemområdet handlar om de barn som riskerar att fara illa eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens levnadsförhållanden blir därmed begränsad och de kan bli isolerade från samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.

För att öka möjligheterna till delaktighet, självständighet och utveckling för barn och unga med personlig assistans anser Socialstyrelsen det angeläget:

att kommuner i sina bedömningar tar hänsyn till att ungdomar som har personlig assistans även bör få andra insatser som kan underlätta en frigörelseprocess
att såväl privata som kommunala assistansanordnare ska beakta att ungdomar som har anhöriga som assistenter även bör ha externa assistenter
att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt barns assistans
att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet ska se ut

Barn med neuropsykiatriska funktionsnedsättningar har ofta flera olika diagnoser. I den användbara handboken Barn med överlappande diagnoser beskrivs de vanligaste diagnoserna och det mest centrala man bör känna till om orsaker, symtom och behandling. Med fokus på möjligheter till utveckling, delar Kutscher med sig av strategier och praktiska tips för att kunna hjälpa barn både hemma och i skolan.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag. Forskargruppen valde i samråd med Socialstyrelsen ut vilka verksamheter webbenkäten i kartläggningen skulle riktas till. Inom socialtjänsten valdes socialsekreterare och handläggare inom ekonomiskt bistånd respektive LSS. Inom hälso- och sjukvården valdes vårdpersonal inom primärvården. Enkäten har kompletterats med fokusgruppsintervjuer med personal inom primärvård, ekonomiskt bistånd och LSS. Resultaten visar att samtliga undersökta verksamheter använder minderåriga barn och andra anhöriga istället för tolk i vissa situationer. Främst sker det vid oplanerade besök. Det är vanligare att vuxna anhöriga används i stället för en utbildad tolk än minderåriga barn. I de fall då mötet med brukaren eller patienten beskrivs som känsligt eller komplicerat, ser personalen oftast till att tillkalla professionell tolk. Inom primärvården är det dock inte ovanligt att låta vuxna anhöriga översätta även vid planerade besök.

Barn i förskole- och skolåldern kan ha utsatts för traumatiska händelser, som t.ex. en närståendes död, misshandel eller sexuella övergrepp. Men barn kan även bli traumatiserade utan att själva vara direkt utsatta. Det kan ske t.ex. genom att barnen bevittnar svåra händelser. Om långvariga problem ska kunna förebyggas måste det finnas vuxna som ger barnen stöd för bearbetningen av det inträffade så att de kan bemöta, uttrycka och integrera de svåra händelserna i sina liv.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Avhandling

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

Avhandling

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

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

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

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

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

Framtagen av processledare Åsa Nilsson och medarbetare i kommunen och landstinget.

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

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

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

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

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

This practical handbook offers treatment guidelines to address the behavioral and mental health problems of young children whose most intimate relationships are disrupted by the experience of violence. Practitioners from a variety of disciplines will gain an understanding of the impact of violence and will discover concrete intervention strategies to address the consequences of this experience for young children.

Dregling är ett vanligt symtom hos barn med orofaciala funktionsnedsättningar. Svårigheter med att kontrollera sin saliv upplevs ofta som ett stort problem både av barnet självt och av omgivningen. På Mun-H-Center märker vi på flera sätt att det finns ett stort behov av kunskap om utredningsmöjligheter och behandling av dreglingsproblematik. I den här skriften om behandling av dregling finns information om orsaker och om olika behandlingsalternativ

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

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

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

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

Linköping University medical dissertations, 0345-0082 ; 895

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

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

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

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

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

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

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

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

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

The process of language acquisition requires an individual to organize the world through a system of symbols and referents. For children with severe intellectual disabilities and language delays, the ability to link a symbol to its referent may be a difficult task. In addition to the intervention strategy, issues such as the visual complexity and iconicity of a symbol arise when deciding what to select as a medium to teach language. This study explored the ability of four pre-school age children with developmental and language delays to acquire the meanings of Blissymbols and lexigrams using an observational experiential language intervention. In production, all four of the participants demonstrated symbol-referent relationships, while in comprehension, three of the four participants demonstrated at least emerging symbol-referent relationships. Although the number of symbols learned across participants varied, there were no differences between the learning of arbitrary and comparatively iconic symbols. The participants' comprehension skills appeared to influence their performance.

OBJECTIVE:
Exposure to war trauma has been independently associated with posttraumatic stress (PTSD) and other emotional disorders in children and adults. The aim of this study was to establish the relationship between ongoing war traumatic experiences, PTSD and anxiety symptoms in children, accounting for their parents' equivalent mental health responses.

METHODS:
The study was conducted in the Gaza Strip, in areas under ongoing shelling and other acts of military violence. The sample included 100 families, with 200 parents and 197 children aged 9-18 years. Parents and children completed measures of experience of traumatic events (Gaza Traumatic Checklist), PTSD (Children's Revised Impact of Events Scale, PTSD Checklist for parents), and anxiety (Revised Children's Manifest Anxiety Scale, and Taylor Manifest Anxiety Scale for parents).

RESULTS:
Both children and parents reported a high number of experienced traumatic events, and high rates of PTSD and anxiety scores above previously established cut-offs. Among children, trauma exposure was significantly associated with total and subscales PTSD scores, and with anxiety scores. In contrast, trauma exposure was significantly associated with PTSD intrusion symptoms in parents. Both war trauma and parents' emotional responses were significantly associated with children's PTSD and anxiety symptoms.

CONCLUSIONS:
Exposure to war trauma impacts on both parents' and children's mental health, whose emotional responses are inter-related. Both universal and targeted interventions should preferably involve families. These could be provided by non-governmental organizations in the first instance.

Purpose: To investigate the effect of cueing on communicative responses of children with multiple disabilities in an educational setting. It was hypothesized that differences would exist in teacher interactional styles and the use of orienting cues would increase the communicative responses of the participants. Method: A naturalistic observation research method was employed in order to examine the interaction of three student - teacher dyads in three special schools. Three different activity types were videotaped from which interactions were coded and analysed. Results: Multi-modal cueing facilitated communicative responses of children with Rett syndrome. However, increased communication opportunities provided by caregivers did not elicit increased responses from the girls. Conclusion: There is a difference in cueing by teachers in their interactions with children with multiple disabilities. Also, more frequent communicative interactions did not necessarily lead to increased student responses. It is suggested that amount and type of cueing may need to be considered to be effective in generating student responses. The small number of participants, however, means findings should be viewed cautiously and that more research is indicated. © 2004 Taylor & Francis Ltd.

Self-determination theory (Deci & Ryan, 1985) posits that (a) people are inherently motivated to internalize the regulation of uninteresting though important activities; (b) there are two different processes through which such internalization can occur, resulting in qualitatively different styles of self-regulation; and (c) the social context influences which internalization process and regulatory style occur. The two types of internalization are introjection, which entails taking in a value or regulatory process but not accepting it as one's own, and integration, through which the regulation is assimilated with one's core sense of self. Introjection results in internally controlling regulation, whereas integration results in self-determination. An experiment supported our hypothesis that three facilitating contextual factors—namely, providing a meaningful rationale, acknowledging the behaver's feelings, and conveying choice—promote internalization, as evidenced by the subsequent self-regulation of behavior. This experiment also supported our expectation that when the social context supports self-determination, integration tends to occur, whereas when the context does not support self-determination, introjection tends to occur.

Borderline Personality Disorder (BPD) has long been considered a mental health problem that results in considerable costs in terms of human suffering and psychiatric expenses among adult patients. Although the diagnosis of BPD for adolescents is frequently used in clinical settings, the field of mental health has questioned whether one should diagnose BPD among adolescents. This paper reviews the recent empirical literature (identified through PsycINFO 1980 to present) to evaluate prevalence, reliability, and validity of a BPD diagnosis in adolescents. It is concluded that the features BPD diagnoses in adolescents are comparable to those in adults. Furthermore, there appears to be a legitimate subgroup of adolescents for whom the diagnosis remains stable over time as well as a less severe subgroup that moves in and out of the diagnosis. While caution is warranted, formal assessment of BPD in adolescents may yield more accurate and effective treatment for adolescents experiencing BPD symptomatology. More longitudinal research is necessary to further explicate the issues of diagnosing BPD in adolescents.

OBJECTIVES: To assess burden in the caregivers of patients with severe traumatic
brain injury (TBI) 1 year postinjury, related to caregiver's demographic data and
social network, patient's demographic data, injury severity, and functional
status.
DESIGN: Prospective national multicenter study. Self-report from caregivers,
patient data collected from the national cohort on patients with severe TBI.
PARTICIPANTS: 92 caregivers.
MAIN OUTCOME MEASURE: The Caregiver Burden Scale (CBS).
RESULTS: Total caregiver burden was reported high in 16% of caregivers and
moderate in 34%. The mean total burden index was 2.12, indicating a moderate
burden. Caregivers reported highest scores on the General strain index, followed
by the Disappointment index. Poor social network, feeling loneliness, and caring
for patients with severe disability were significant predictors of higher burden
in univariate analyses (P < .01). Multiple linear regression analyses showed that
experiencing loneliness and caring for a patient with more severe disability were
independent predictors for higher caregiver burden for all CBS indices. Marital
status (married) and low frequency of meeting friends were significant results in
some indices.
CONCLUSIONS: Lack of a social network, feeling loneliness, and patient's
functional status are predictors of caregiver burden. General strain,
disappointment, and isolation were identified as areas in which caregiver burden
is high.

Factors were examined that are associated with
life satisfaction one year post-discharge for persons with a
spinal cord (SCI) or traumatic brain injury (TBI). Findings
show persons with SCI or TBI should be considered as two
distinct groups with regard to factors affecting life satisfaction
. Different strategies might be considered to affect either
group. Three psychosocial variables significantly increased
life satisfaction for persons with SCI: closeness to family, the
level of family activities, and blaming oneself for the injury.
For persons with TBI, total family satisfaction, blaming
oneself for the injury, being employed, being married, and
having memory and bowel independence significantly increased
life satisfaction . For persons with TBI, there was a
difference in the number of factors affecting life satisfaction
dependent on whether the persons blamed themselves or not.
Those who do not blame themselves show a greater number
of functional activities as indicators for their self-satisfaction.

Purpose. To identify factors contributing to reduced quality of life and increased caregiver strain in an older population referred to a community rehabilitation team and to recommend service delivery models. Methods. Analytical cross-sectional study arising from baseline assessments from 107 subjects drawn from a randomised controlled trial of community rehabilitation service delivery models. Setting. A community rehabilitation team based in Brisbane, Queensland, Australia. Measures. Primary outcome variables include quality of life (EQ-5D & VAS) and Carer Strain Index. Predictor variables include participation in functional activities, history of falls, number of medications, number of co-morbidities, depression, environmental hazards, physical function and nutrition. Association between variables assessed using linear regression. Results. Major factors contributing to reduced quality of life were having reduced participation in daily activities, depression, and having poor vision. Having poor nutrition and no longer driving also contributed to poor quality of life. The major factor contributing to increased caregiver strain was reduced participation in daily activities by the older person. Conclusions. Community rehabilitation services working with older populations must adopt models of care that screen for and address a wide range of factors that contribute to poor quality of life and caregiver strain.

PURPOSE: The study aimed to identify factors related to family caregivers' sleep.
DESIGN AND METHODS: The study used a cross-sectional design with objective and subjective methods to measure sleep in the home setting over a 7-day period.
FINDINGS: Findings indicated that poor sleep quality was found in 91.7% of the caregiver participants. Depression, sleep hygiene, burden, and care-recipients' sleep were significant predictors of various dimensions of caregivers' sleep.
PRACTICE IMPLICATIONS: Our study suggests that sleep quality for family caregivers of individuals with dementia varies considerably from night to night. Understanding the complex interrelationships among caregivers' sleep and other contributing variables is an important first step toward the development of individualized and effective treatment strategies.

Abstract
OBJECTIVE:
To evaluate the social and emotional adjustment of 219 children in families with varying levels of intimate partner violence (IPV) using a model of risk and protection. To explore factors that differentiate children with poor adjustment from those with resilience.
METHODOLOGY:
Mothers who experienced IPV in the past year and their children ages 6-12 were interviewed. Standardized measures assessed family violence, parenting, family functioning, maternal mental health, and children's adjustment and beliefs.
RESULTS:
Using cluster analysis, all cases with valid data on the Child Behavior Checklist, Child Depression Inventory, General Self-Worth and Social Self-Competence measures were described by four profiles of children's adjustment: Severe Adjustment Problems (24%); children who were Struggling (45%); those with Depression Only (11%); and Resilient (20%) with high competence and low adjustment problems. Multinomial logistic regression analyses showed children in the Severe Problems cluster witnessed more family violence and had mothers higher in depression and trauma symptoms than other children. Resilient and Struggling children had mothers with better parenting, more family strengths and no past violent partner. Parents of children with Severe Problems were lacking these attributes. The Depressed profile children witnessed less violence but had greater fears and worries about mother's safety.
CONCLUSION:
Factors related to the child, to the mother and to the family distinguish different profiles of adjustment for children exposed to IPV who are living in the community. Resilient children have less violence exposure, fewer fears and worries, and mothers with better mental health and parenting skills, suggesting avenues for intervention with this population.
PRACTICE IMPLICATIONS:
Findings suggest that child adjustment is largely influenced by parent functioning. Thus, services should be targeted at both the child and the parent. Clinical interventions shaped to the unique needs of the child might also be tested with this population.

gallart a., cruz f. & zabalegui a. (2013) Factors influencing burden among non-professional immigrant caregivers: a casecontrol study. Journal of Advanced Nursing69(3), 642654. doi: 10.1111/j.1365-2648.2012.06049.x Abstract Aim. To identify factors related to the burden that is experienced by untrained immigrant caregivers. Background. There is growing concern about how to provide the care required by an ageing population. Although elder care has usually been provided by family members, this role is increasingly being fulfilled by immigrant caregivers with no formal training. Design. Casecontrol study (burdened/non-burdened according to the Zarit Burden Interview). Methods. The study took place between May 2005October 2009. Anonymous questionnaires were distributed to 110 immigrant caregivers and their corresponding older care recipients (n=110), who were receiving care in their homes in Barcelona (Spain). The questionnaires included measures of burden, social support, quality of life and social integration, and items about the physical/psychological status of the care recipient and the nature of the care tasks. Two groups of immigrant caregivers were defined according to their scores on the Zarit Burden Interview: burdened (n=55) and non-burdened (n=55). Results. Burdened caregivers reported less social support, a poorer quality of life, and problems with social integration. Furthermore, 48% said that they lacked knowledge about the care task, while 44% had difficulty performing certain care tasks, which constitutes a risk situation. Conclusion. Burden among untrained immigrant caregivers may be reduced by improving their social support systems and quality of life, thereby helping to ensure the availability of the caregiver services, which society increasingly needs.

Children with mentally ill parents are at risk of developing mental health problems themselves. To enhance early support for these children may prevent mental health problems from being transmitted from one generation to the next. The sample (N = 219) included health professionals in a large university hospital, who responded to a web-based survey on the routines of the mental health services, attitudes within the workforce capacity, worker's knowledge on the impact of parental mental illness on children, knowledge on legislation concerning children of patients, experience, expectations for possible outcomes of change in current clinical practice and demographic variables. A total of 56 % reported that they did not identify whether or not patients had children. There were no significant differences between the groups (identifiers and non-identifiers) except for the two scales measuring aspects of knowledge, i.e., Knowledge Children and Knowledge Legislation where workers who identified children had higher scores. The results also showed that younger workers with a medium level of education scored higher on Positive Attitudes. Furthermore, workers who reported to have more knowledge about children and the impact of mental illness on the parenting role were less concerned about a child-focussed approach interfering with the patient-therapist relation.

This book displays new data on up to 56 countries of the UN-European region (comprising North America, Europe including Russia, Central Asia and Israel).

Despite growing concerns over ageing and its social and fiscal impact, surprisingly scarce information is available on basic indicators concerning long-term care for dependent older people. The present publication seeks to fill this gap of knowledge as it searches for answers to queries and puzzles such as?

What exactly do we mean by long-term care? Where to set the boundaries between family or informal and formal care, between home and residential / institutional care, between public and privately financed care?

Will demographic ageing further accelerate? How much gain in life ahead at retirement age and during the decades of third age are actually observed and to be expected in the future? To what an extent will longer lives correspond to healthier ones? Are there limits in shifting the oldest-old threshold - and correspondingly increased dependency risks - upwards?

What are the typical living arrangements of older people? How do they differ across countries, or between women and men? What are the social implications of living alone, in couples, with children or others? How much mobility is there in later life? And how much of it is preferred, expected, or involuntary?

Who provides care for dependent older people within the family? Is care-giving always a women?s world? How do adult children and dependent parents feel about care arrangements? Who shares which burdens? Can work and family duties be balanced? What are people?s preferences?

What are the differences between cash for care and attendance allowances or care leaves? How do the roles of residential care change? Is care provided mostly in institutions or at home? Where is formal care most widely available? Why are there so many more women than men in residential care?

Which countries spend the most in long-term care? Most people are cared for at home? is that where most money is spent? What are the public / private mixes in long-term care spending? What does a closer look at country differences in expenditure levels, spending patterns and forms of generosity disclose? What trade-offs are there between different forms of generosity ? and which ones are fiscally or socially sustainable?

Are cash benefits one effective way to keep expenditure under control? What if....all countries would spend up to the EU-15 level? Demographics alone are the main driving force behind expenditure in long-term care? or not? How much can it cost to be cared for in an institution?

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

Avhandling för doktorsexamen

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

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

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

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

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

Doktorsavhandling

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

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

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

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

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

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

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

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

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

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

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

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

Detta är en guide för föräldrar om kommunikation och kommunikationshjälpmedel för barn och
ungdomar med flerfunktionsnedsättning, baserad på aktuell forskning och praktik. Eftersom kommunikationshjälpmedel alltid används tillsammans med andra kommunikationssätt, aldrig helt ensamma,handlar boken också om kommunikation i allmänhet. Kunskapsöversikten inleds med en genomgång av vad det innebär att ha en flerfunktionsnedsättning och vad som menas med Alternativ och Kompletterande Kommunikation (AKK). Därefter går författaren igenom de tidiga stegen i kommunikationsutvecklingen och olika sätt att kartlägga kommunikation. Läsaren får bekanta sig med olika kommunikationssätt (manuella tecken, bilder, symbolsystem och konkreta föremål) och olika typer av samtalshjälpmedel och styrsätt. Stor vikt läggs vid pedagogiska råd kring att lära sig använda AKK och boken innehåller många exempel och beskrivningar av olika strategier och hur de kan tillämpas vid användning av olika hjälpmedel. Avslutningsvis finns det referenser och länkar till olika resurser som kan vara till nytta både för föräldrar och yrkesverksamma inom området

A mutually rewarding communicative interaction with a child whose development is atypical presents unique challenges that have to be met through the implementation of unique strategies by both partners in a dyad. The aim of this study was to provide a description, interpretation, and model for communicative interaction in a particular dyad that comprised a child with severe multiple disabilities who functioned at a presymbolic level and his caregiver. A qualitative, inductive approach focused on process analysis was used to examine a videotaped interaction between a 6-year-old boy with severe multiple disabilities and his caregiver in a play session at pre-school. System theory was used as a theoretical and conceptual framework to analyse the communicative process. Co-regulation, consensual frames, and system dynamics were used as key concepts to examine how the behaviors of the child and the behaviors of the adult were related to each other and how the partners co-created meaning in their interaction. As a result of the analysis, two models are presented. The first is a model of how a hierarchical order of consensual frames is built. The second model is a process map that provides an illustration of the communication dynamics. It is suggested that a system theory approach could be a useful framework, not only to explain results, but also as an analytical tool to provide more dyad-specific interaction models as a basis for individualized interventions. © 2004 Taylor & Francis Ltd.

The types of contingency experiences infants and young children are typically exposed to are examined with a focus on the implications for early childhood intervention with young children who have developmental disabilities and delays. Studies of response-contingent child learning, the manner in which contingencies are not under direct child control, and child/caregiver reciprocal contingencies, are reviewed in terms of how they influence child learning and development. Results indicate that the different types of contingencies all positively influence child behavior. Implications for practice are described in terms of contingency-rich everyday child learning activities, child response-contingent learning in the context of those activities, and caregiver contingent responsiveness as an instructional strategy for supporting child contingency learning.

Children who spend early portions of their lives in institutions or those maltreated in their families of origin are at risk for developing emotional and behavioral problems reflecting disorders of emotion and attention regulation. Animal models may help explicate the mechanisms producing these effects. Despite the value of the animal models, many questions remain in using the animal data to guide studies of human development. In 1999, the National Institute of Mental Health in the United States funded a research network to address unresolved issues and enhance translation of basic animal early experience research to application in child research. Professor Seymour Levine was both the inspiration for and an active member of this research network until his death in October of 2007. This review pays tribute to his legacy by outlining the conceptual model which is now guiding our research studies.

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

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

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

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

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

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

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

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

Background

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

Objective

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

Methods

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

Results

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

Conclusions

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

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

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

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

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

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

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

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

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

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

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

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

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

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

Background

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

Methods/Design

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

Discussion

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

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

AIMS:
This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles.
METHODS:
Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers' consequences, the Utrecht Coping List (UCL) to measure caregivers' coping styles, and the 12-item General Health Questionnaire (GHQ-12) to measure caregiver distress. Scale (sub)scores were calculated and relationships between the results were explored.
RESULTS:
Caregiver consequences were found to be limited, although approximately 30% reported distress. Male caregivers used a more avoiding coping style and undertook activities to provide diversion. Female caregivers used a less active approach and sought less social support. Correlations were found between the IEQ overall score and its subscales 'tension' and 'worrying' and the UCL subscales 'palliative reaction pattern' and 'passive reaction pattern'. Distress appears to occur more often in caregivers who report more consequences, tend to use a more avoiding coping style, and have a more passive reaction pattern.
CONCLUSIONS:
Clinicians should assess symptoms of caregiver distress. When caregiver distress is noticed, efforts should be undertaken to support the caregiver and teach them skills to cope effectively with the consequences they experience in order to stay well.

Adult children are a significant contingent of elder care providers; a number of these individuals simultaneously care for children of their own while coping with caregiving commitments. Unfortunately, there is a paucity of information regarding the caregiving impact on these children and young adults. Moreover, the possible positive consequences of caring for an impaired elder are rarely mentioned. The current study was undertaken to examine the potential positive caregiving experiences of adolescents and their perceptions of relational enhancement as a result of caregiving. Twenty adolescents aged 14-18 were interviewed and asked a series of semistructured questions concerning satisfaction related to caregiving. To be included, respondents had to be a child, grandchild, or niece/nephew of an Alzheimer's (or Alzheimer's Type Dementia) patient cared for by the adolescent's immediate family. Employing features of content analysis methodology, all interviews were audiotaped and transcribed verbatim. The results merged into four primary categories: 1) increased sibling activity/sharing; 2) greater empathy for older adults; 3) significant mother-adolescent bonding and 4) peer relationship selection and maintenance. The implications for future research and practice are discussed.

PURPOSE:
To examine the support required by family carers for stroke survivors.
METHODS:
Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).
RESULTS:
Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.
CONCLUSIONS:
Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.

This study assessed changes in family members who participated in Family Connections, a 12-week manualized education program for relatives of persons with borderline personality disorder (BPD). Family Connections, led by trained family members, is based on the strategies of standard Dialectical Behavior Therapy (DBT) & DBT for families. The program provides (a) current information & research on BPD, (b) coping skills, (c) family skills, & (d) opportunities to build a support network for family members. Forty-four participants representing 34 families completed the pre-, post-, & 6-month postbaseline self-report questionnaires. Analyses employing hierarchical linear modeling strategies showed significant reductions in grief & burden, & a significant increase in mastery from pre- to post-group assessment. Changes were maintained at 6 months post baseline. 1 Table, 19 References. Adapted from the source document.

This chapter describes the Family Connections (FC) program, a 12-week, two-hour, interactive, manualized, education/skills training course for relatives of persons with borderline personality disorder (BPD) that is co-led by trained family members. It explicates the training of co-leaders, the registration process for participants, a detailed description of the curriculum's six modules, and consideration of the on-going challenges faced by participants after the program ends. The introduction describes historical development of the program. Subsequent sections are organized into two parts: each opens with a segment that presents key ideas, which is followed by 'Leader Observations' the reflections of a seasoned leader. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

BACKGROUND:
Family context can affect children's vulnerability to various stresses, but little is known regarding the role of family variables on children's reactions to natural disaster. This prospective study examined the influence of predisaster observed parenting behaviors and postdisaster parental stress on young children's distress following an earthquake.

METHODS:
Participants were 117 two-parent families with a child age 4-5 at the initial assessment. The families experienced different degrees of impact from the earthquake. Pre-earthquake family context comprised observations of parents' positive and negative behaviors during a parent-child play task. Eight months after the earthquake, mothers reported symptoms of parental stress and children's distress.

RESULTS:
Earthquake impact and children's distress symptoms were moderately correlated (r = .44), but certain pre-earthquake parental behaviors moderated the relationship. The dose-response association between earthquake impact and children's symptoms did not hold for families in which fathers showed high levels of negative behaviors with daughters, or mothers showed low levels of positive behaviors with sons. In addition, results consistent with full mediation for boys (and partial mediation for girls) indicated that 86% of the total effect of earthquake impact on boys' distress (and 29% on girls' distress) occurred through the mediator of reported parental stress.

CONCLUSIONS:
These findings demonstrate that young children's responses to an abrupt, negative environmental event, such as an earthquake, are influenced in part by the nature of the parent-child relationship prior to the event as well as by the responses parents exhibit following the event.

Aphasia affects functional activities and participation in social roles years after onset. Some group and individual programs have reported success in improving social activities and perceived wellness. These programs typically last several weeks or months. A short, 2-day seminar style program designed for adults with chronic aphasia and their families is described in this report. Six-month follow-up data from participant pairs demonstrates a significant improvement in functional activity level, improved knowledge of aphasia, and improved family relationships. Nonparticipant pairs did not demonstrate any changes over the same period. These findings replicate and extend those of a previous study on the same 2-day seminar [Top. Stroke Rehabil. 2 (1995) 53.]. The results of this study demonstrate the important outcomes of even a very brief program designed to address the long-term psychosocial needs of adults living with aphasia and their families. Educational objectives: As a result of this activity, the participant will be able to: (1) describe a brief family education seminar for adults with chronic aphasia; (2) discuss outcomes in family adjustment, community reintegration, and activities of daily living associated with participation in a family education seminar; and (3) evaluate areas of programming and outcomes that should be addressed in future research.

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Research shows that living with illness can be a distressing experience for the family and may result in suffering and reduced health. To meet families' needs, family systems intervention models are developed and employed in clinical contexts. For successful refinement and implementation it is important to understand how these models work. The aim of this study was therefore to describe the dialogue process and possible working mechanisms of one systems nursing intervention model, the Family Health Conversation model. A descriptive evaluation design was applied and 15 transcribed conversations with five families were analyzed within a hermeneutic tradition. Two types of interrelated dialogue events were identified: narrating and exploring. There was a flow between these events, a movement that was generated by the interaction between the participants. Our theoretically grounded interpretation showed that narrating, listening, and reconsidering in interaction may be understood as supporting family health by offering the families the opportunity to constitute self-identity and identity within the family, increasing the families' understanding of multiple ways of being and acting, to see new possibilities and to develop meaning and hope. Results from this study may hopefully contribute to the successful implementation of family systems interventions in education and clinical praxis.

Parental depression places offspring at elevated risk for multiple, co-occurring problems. The purpose of this study was to develop and preliminarily evaluate Project Hope, a family intervention for the prevention of both depression and substance use among adolescent-aged children (M = 13.9 years) of depressed parents. The program was created by blending two empirically supported interventions: one for depression and another for substance use. Thirty families were randomly assigned to either Project Hope (n = 16) or a wait-list control condition (n = 14). Pretests, posttests (n = 29), and 5-month follow-ups (n = 28) were conducted separately with parents and youth via phone interviews. Questions asked about the family depression experience, family interactions, family management, coping, adolescent substance use beliefs and refusal skills, adolescent depression, and adolescent substance use. Project Hope was fully developed, manualized, and implemented with a small sample of targeted families. Engagement in the program was relatively high. Preliminary outcome analyses were conducted using 2 (Group) ×3 (Time) analyses of covariance. Results provided some evidence for significant improvements among intervention compared to control participants in indicators of the family depression experience, family management, and coping, and a statistically significant decrease from pretest to posttest in alcohol quantity for intervention compared to control youth. Next steps for this program of research are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.

Objective: The goal of this study was to preliminarily test the efficacy of a telephone intervention, Family Intervention: Telephone Tracking, designed to assist stroke survivors and their primary caregivers during the first 6 months after stroke. Method: Forty-nine stroke survivors and their caregivers were randomly assigned to treatment as usual or treatment as usual plus the telephone intervention. Global outcomes are reported for health care utilization, family functioning, and general functioning. Results: Family and general functioning were positively and significantly changed at 3 and 6 months. Health care utilization was positively and significantly changed at 3 months. Conclusion: Findings suggest that the model has the potential to decrease health care utilization and improve quality of life for stroke survivors and their caregivers. Further study is warranted.

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

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

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

Dissertation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is considerable research and clinical evidence that children who experience loss become traumatized. The results of traumatization include sleeping problems, for example difficulties in initiating sleep and sleep terrors. Psychological intervention programmes, including hypnotherapy, have been shown to have some success in helping children to overcome their sleeping problems. In the present study, a new paradigm qualitative methodology was used in which a small group of children were taught self-hypnosis to manage their sleep difficulties. Within the group, the children's experiences of utilizing self-hypnosis at home were discussed, and a consensus reached concerning its effects. Complementary data were collected through interviews with caregivers and by completion of the Southampton Sleep Management Schedule (Bartlet and Beaumont, 1998). From the study it was concluded that young children can be taught self-hypnosis in order to manage their sleeping problems effectively. Furthermore, the present study demonstrated that children can be involved in a collaborative research group.

Ett barns hälsa och välbefinnande bestäms av så mycket mera än att vara fri från sjukdom. Världshälsoorganisationen (WHO) beskriver hälsa som fysiskt, psykiskt och socialt välbefinnande. Detta visar att ett barn med funktionsnedsättning kan må bra om det ges förutsättningar att fungera i de miljöer där barnet vistas regelbundet. Ett barns vardagsfungerande kan bedömas och beskrivas på ett allsidigt sätt med stöd av WHO:s hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY. Den bidrar med en modell som fokuserar på funktionella beskrivningar av barnets vardagssituationer som ett nödvändigt komplement till en diagnos. Eftersom en diagnos aldrig kan ge information om ett individuellt barns fungerande, behövs det funktionella perspektivet vid planering av åtgärder som kagöra ett barn mera delaktigt i olika aktiviteter. Socialstyrelsen förordar en ökad användning av klassifikationen, vilket har gjort att många verksamheter, som arbetar med barn och ungdomar, utvecklar arbetsmodeller som bygger på ICF-CY. Därför behöver föräldrar, liksom alla andra som finns runt ett barn med funktionsnedsättning, kunskap om den värdegrund som bildar bas för hälsoklassifikationen.
Kunskapsöversikten vägleder läsaren genom ICF-CY och lyfter fram exempel på hur den kan bidra till en överblick över ett barns hälsa och välbefinnande. Vägledningen vill underlätta samverkan genom att belysa hur ICF-CY kan bli en gemensam struktur och ett gemensamt språk för formulering av ett barns problem och behov ur olika synvinklar. Även om de exempel som beskrivs fokuserar på barn, är värdegrunden och innehållet i klassifikationen lika användbart för vuxna. Vägledningen är inte tänkt att läsas i ett streck från början till slut. Innehållet är ordnat i flera delar så att läsaren först ska få en bakgrund med en övergripande information om ICF-CY för att sedan lotsas allt djupare in i såväl modellen som klassifikationen. I slutet presenteras hur klassifikationen kan användas för att definiera ett barns problematik. Förhoppningen är att läsaren ska kunna ta fram skriften och hitta de avsnitt som kan ge ett stöd för att beskriva ett barns aktuella situation och behov inför en habiliteringsplanering, upprättandet av åtgärdsprogram, en vårdbidragsansökan eller vid övergången från en skola till en annan. Den kan på det viset ses som ett uppslagsverk i ämnet barn och ungdomars hälsa och välbefinnande, eller kanske lika gärna, i barn och ungdomars vardagsfungerande.

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

Vad är det som gör att en del av oss klarar av även mycket svåra påfrestningar med hälsan i behåll – och kanske till och med växer och vidareutvecklas av dem? Författarens tes är att motståndskraften beror på vår känsla av sammanhang, d v s den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar.
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För att förbättra särskilt utsatta barns situation fick hälso- och sjukvården den 1 januari 2010 en skyldighet att beakta barnens behov av råd, stöd och information. Det gäller om en förälder har en psykisk störning eller funktionsnedsättning, en allvarlig fysisk sjukdom, är missbrukare eller oväntat avlider. Bestämmelserna finns i HSL och LYHS.

Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnader för fetalt alkoholsyndrom (FAS) i Sverige. Att dricka alkohol under graviditeten kan skada fostrets utveckling, framför allt utvecklingen av dess hjärna, och kan leda till allvarliga och livslånga funktionsnedsättningar och funktionshinder. FAS ör en medicinsk diagnos som beskriver de skador som kan uppstå då fostret exponeras för alkohol. Den årliga totala samhällskostnaden för FAS år 2014 beräknades till närmare 14,4 miljarder.

Ett hälsopedagogiskt förhållningssätt i vården kan skapa ett bättre samarbete mellan sjukvård och brukare för att ge dem som drabbats bästa möjliga förutsättningar i livet. Tyvärr används inte kunskapen på bästa sätt idag.

Sedan 1980-talet har den offentligt finansierade äldreomsorgen minskat dramatiskt samtidigt som andelen äldre i befolkningen har ökat kraftigt. Andelen äldre, 80 år och äldre, som får offentlig äldreomsorg har minskat från 62 procent 1980 till 37 procent 2006. Under 2000-talet har samhällets kostnad för äldreomsorg fortsatt att minska, både i faktisk kostnad och som andel av BNP. Antalet anställda i äldreomsorgen har också minskat. I takt med att den offentligt finansierade äldreomsorgen har dragit sig tillbaka har de äldres anhöriga tagit ett större omsorgsansvar. Framför
allt har de äldres döttrar ökat sina insatser sedan 1990-talet. Data från SCB för 2010 visar att anhörigomsorgen fortsätter att öka även under de senaste fem åren. I rapporten redovisas vem som hjälper hemmaboende äldre, 75 år eller äldre, som behöver hjälp med åtminstone en av insatserna städning, tvätt, matinköp, matlagning eller bad/dusch. Ungefär hälften av gruppen får hjälp av kommunen. Det är samma nivå som i slutet av 1980-talet, men fler äldre med stora hjälpbehov bor hemma idag än för tjugo år sedan. Två tredjedelar får den här hjälpen, alltså hjälp med städning, tvätt, matinköp, matlagning eller bad/dusch, av en nära anhörig eller vän som de inte bor med. Motsvarande siffra i slutet av 1980-talet var 40 procent. Nästan en tredjedel av de hemmaboende äldre, 75 år och äldre, med hjälpbehov får den här hjälpen av en dotter. Ungefär 14 procent får hjälpen av en son. Anhörigomsorgen är inte gratis, varken för de som ger omsorg eller för samhället. Bland medelålders kvinnor som ger omfattande omsorg till närstående äldre står 40 procent utanför arbetskraften jämfört med 30 procent av medelålders kvinnor utan omsorgsansvar. Uppskattningsvis 100 000 personer anger vård av anhörig som främsta skäl till att de gått ned i arbetstid eller helt slutat arbeta. Utöver att dessa personer själva får lägre arbetsinkomst när de jobbar deltid eller helt står utanför arbetskraften, så förlorar samhället i uteblivna skatteintäkter. Kommunal menar att de utmaningar som Sverige står inför, bristande
arbetskraftsutbud och välfärdens framtida finansiering, hänger ihop. För att fler ska kunna jobba mer behövs en välfungerande social infrastruktur med barnomsorg och äldreomsorg. När fler jobbar mer ökar även skatteintäkterna så vi har råd med offentligt finansierade välfärdstjänster av hög kvalitet.

Under Rubellasyndrom-epidemien i 1960'erne blev mange børn født døve, blinde og udviklingshæmmede. Forfatteren prøver i denne bog at komme nærmere en forståelse af disse menneskers virkelighed, en verden uden ord, men ikke uden kommunikation. Bogen er et resultat af forfatterens undersøgelser af to børn født døvblinde og udviklingshæmmede

Vad tycker människor med psykiska funktionsnedsättningar och en komplex livssituation om att få ett varaktigt boende i form av gruppbostad med särskild service?

"Vår berättelse närmar sig sitt slut. Och vår figur klamrar sig fast på vrakets krutdurk på det öppna havet. Molnen hopar sig. Från och med nu blir allt han skriver korta fragment som han ristar in i tunnans trä."

Efter den hyllade debutboken I kroppen min kommer nu Kristian Gidlunds avslutande texter från bloggen med samma namn. Texterna återspeglar Kristians tankar och känslor under de sista sju månaderna av hans liv. Boken innehåller också Emma Svenssons bilder från fotoutställningen om Kristian Gidlund.

Han hade ett sjömanshjärta i sitt bröst. Han sökte äventyret. Han älskade livet. Kristian Gidlund, författaren, journalisten och musikern avled den 17 september 2013. Han blev 29 år gammal.

"Kristian Gidlund gjorde verkligen skillnad, helt på egen hand. Ingen som hörde hans röst, precisionen och modet i varenda formulering, kunde låta bli att stanna upp, lyssna och långsamt förändras. Han lärde oss att dö men också att leva." Åsa Beckman Dagens Nyheter

"När jag läste hans betraktelser ville jag bara dansa i regnet, bada i en ljummen sjö, älska, gråta, skratta, känna, och rida rätt ut i skogen." Sanna Lundell Aftonbladet

"Hans lyriska formuleringar blir till trollformler som genererar liv bara man läser dem med tillräcklig intensitet. Naturligtvis är det oerhört tragiskt och tårdrypande. Men här finns också värme och humor som på samma gång balanserar upp tragiken och förstärker den."Norrköpings Tidningar

"Han var just så varm, just så orädd, just så klok, just så stark, just så vacker - och omöjlig att inte älska... Den svidande skönheten i de texter han med sån poetisk stringens, och sån osentimental men likafullt hjärtskärande öppenhjärtighet, formulerade." Per Bjurman Aftonbladet

"Styrkan i Gidlunds eviga berättande var inte att döden lurade runt hörnet, utan att hans texter genomsyrades av en oerhörd livslust. Han påminde ständigt om att han levt ett rikt liv. "Glöm aldrig det", skrev han i den poetiskt tecknade boken." Sydsvenska Dagbladet

"Sällan har någons skrivande varit mer meningsfullt än Kristian Gidlunds." Östgöta Correspondenten

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

Purpose: The aim of this article is to examine the component of "personal factors" described as a contextual factor in the ICF and ICF-CY. Methods: A critical examination of the construct of "personal factors" and description of the component was made with reference to conceptual and taxonomic criteria. Results: The "personal factors" component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of "personal factors" is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of "personal factors" in documenting personal attributes, including "blaming the victim". Conclusion: In the absence of formal codes, any application of the component of "personal factors" lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for "personal" or any other factors in the ICF/ICF-CY.
Implications for Rehabilitation
A central contribution of the ICF/ICF-CY is the universal language of codes for the components of body structure, body function, activities and participation and Environmental Factors.
As such the codes provide taxonomical legitimacy and power for documenting dimensions of functioning and disability in clinical and rehabilitation contexts.
As there are no codes of "personal factors", there is no basis for documentation of the component.
Demographic information, if needed for identification, should be recorded in customary formats, independent of any component or codes of the ICF/ICF-CY.

Det har hittills saknats en bok för alla som vill veta mer om ICF (International Classification of Functioning, Disability and Health) och dess barn- och ungdomsversion ICF-CY. Boken vänder sig till olika grupper av läsare och är därför indelad i tre nivåer beroende på vilket djup av information man söker. En grupp läsare är de som vill ha en introduktion till vad ICF är för att sen kanske använda den som en tankemodell. En annan grupp är de som beslutat sig för att verkligen förstå ICF som klassifikation med struktur och språk. En tredje grupp läsare är de som vill lära sig "att koda information enligt ICF" i exempelvis forskning. Oavsett vilken grupp man tillhör så behöver man veta hur ICF är uppbyggd och hur den kan användas i olika situationer. Vi hoppas att denna handbok ska möta alla dessa behov. I boken har läsaren möjlighet att själv pröva ICF och läsa hur andra gjort. Läsarens befattning, förkunskaper, yrke och verksamhet kan variera, liksom vad man studerar.

Tillsammans har bokens elva författare gedigen praktisk erfarenhet av att använda ICF och ICF-CY samt specialiserad erfarenhet av att utveckla och pröva användbarheten av ICF och ICF-CY, bland annat på uppdrag av Världshälsoorganisationen, WHO.

The iconicity of graphic symbols and the iconicity hypothesis are theoretical concepts that have had an impact on the use of augmentative and alternative communication strategies for people with severe intellectual disabilities. This article reviews some of the recent literature on the impact of iconicity on symbol recognition and use by typically developing children and relates those findings to people with severe disability. It seems that although iconicity may have some impact on symbol learning, there are other variables that are likely to be much more important. It is likely that iconicity is not helpful to those learning graphic symbols who have little or no comprehension of spoken language.

Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.

The use of published criteria to determine the intentionality of communicative behaviors of individuals with severe and multiple disabilities is discussed in light of research with individuals with and without intellectual disability. Data were collected from four young students with severe intellectual and physical disabilities in addition to sensory deficits. Communicative sampling procedures were used to explore how behaviors other than co-ordinated attention may signal emerging intentionality. These behaviors, which included persistence, idiosyncratic behaviors, and modifications to signals, in addition to patterns of differential modality use, are discussed as potential indicators. Implications for the identification and development of intentional communication in children with severe and multiple disabilities are discussed, along with directions for future research.

Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.
Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.
Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.
Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.

Abstract
BACKGROUND:
The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure.
METHOD:
There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers.
RESULTS:
The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods.
CONCLUSIONS:
The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing.

Faderskap är en familjepolitisk angelägenhet där staten går in och intervenerar och på så sätt fostrar fäder. Tyngdpunkten ligger på att uppmuntra fadersnärvaro och att förmå frånvarande fäder att ta ansvar för sina barn. Detta ger oss en bild av vad som uppfattas som bra fäder och vad som avviker från normen. Den sociala barnavården är en kontext som verkar inom den socialpolitiska, men på ett mer direkt sätt griper in i individens liv. I litteratur och forskning inom socialt arbete framstår ifrågasatta fäder som frånvarande i dubbel bemärkelse. Att de knappast syns i litteraturen förstärker en allmän uppfattning om att fäder till socialt utsatta barn är frånvarande även för sina barn. Många fäder är förvisso frånvarande, men en annan anledning till att ifrågasatta fäder inte syns är modersfixering och kvinnodominans inom den sociala barnavården. I avhandlingen presenteras olika bilder av ett faderskap som är relativt outforskat, nämligen ifrågasatta fäder, alltså fäder vars barn utretts av sociala myndigheter. Utifrån studier av 40 barnavårdsutredningar och intervjuer med 13 socialsekreterare (på två socialkontor) och 19 pappor ges bl.a. svar på vad det står skrivet om fäder i socialtjänstens utredningar; hur socialsekreterare ser på sitt arbete vad gäller fäder; samt hur pappor till socialt utsatta barn upplever sitt eget faderskap, relationen till sina barn och kontakten med sociala myndigheter. Bilderna av ifrågasatt faderskap i de tre delstudierna, men i synnerhet de bilder som kom fram i intervjuerna med socialsekreterarna och papporna, präglas av kluvenhet och ambivalens. Det beror på olikheter mellan den familjepolitiska kontexten och den kontext som den sociala barnavården omfattas av, i tolkningarna av vad som är barns bästa när det gäller kontakt med sina fäder. Bilden av fäder i barnavårdsutredningarna framstod som fragmentarisk och bristfällig, men i den information som fanns framkom en uppfattning om att barn behöver fäder. De bilder som skymtade fram var av fäder som å ena sidan närvarande, ansvarsfulla, och till glädje för barnet, å andra sidan oansvariga, våldsamma, i konflikt med barnets mor, skrämmande, frånvarande och efterlängtade. Jag urskiljde tre teman för vad ett gott faderskap innebär. Dessa är närvaro, ansvar och gränssättning. Genom att involvera fäderna i utredningen och dokumentera det, visade socialsekreterarna att de lever upp till vad som förväntas av dem utifrån den generella socialpolitiska diskursen om fäder, nämligen att stärka fäders relation till sina barn. Å andra sidan har socialsekreterarna eget handlingsutrymme att avgöra om fäder ska kontaktas eller inte i de fall de inte är vårdnadshavare. Bilden av fäder i intervjuerna med socialsekreterarna präglades av ambivalens mellan de olika tolkningarna av barns bästa. Det handlar å ena sidan om en uppfattning om barns bästa utifrån socialpolitiska intentioner. Utifrån detta framhöll socialsekreterarna umgänge mellan barn och far som viktigt. Å andra sidan handlar det om att barn kan behöva skyddas från sina fäder, vilket är den verklighet som socialsekreterarna också möter i sitt arbete. Samtidigt visade sig också en kluvenhet mellan upprätthållandet av den traditionella respektive den moderna fadern genom att socialsekreterarna upprätthöll traditionella könsrollsmönster samtidigt som de försökte fostra moderna fäder. De hade snarlika bedömningskriterier för fäder och mödrar. Dessa baserades på föreställningar om modrande egenskaper. De ställde emellertid lägre krav på fäderna eftersom de inte förväntades uppnå dem i samma utsträckning som mödrarna. I intervjuerna med socialsekreterarna återkom de tre temana för gott faderskap, nämligen närvaro, ansvar och gränssättning. Men även ett fjärde tema blev tydligt, nämligen att barn behöver sina fäder för att ha tillgång till en manlig förebild. Socialarbetarkåren består mestadels av kvinnor. Kvinnodominansen inom den sociala barnavården sågs som ett problem samtidigt som några socialsekreterare menade att skillnader i ålder eller etniskt ursprung var lika betydelsefullt som kön i deras kontakt med fäder. Socialsekreterarna uttryckte acceptans för avvikande beteende hos fäderna. Vilka beteenden som accepterades var olika i A-by respektive B-stad beroende på vilka fäder de mötte. Socialsekreterarna i A-by hade mest frånvarande fäder att förhålla sig till. I B-stad mötte socialsekreterarna nästan bara närvarande invandrarfäder. Jag menar att socialsekreterarnas kontakt med invandrarfäder har betydelse för sättet att betrakta faderskap och att det innebär ett annat slags socialt arbete med fäder i B-stad än i A-by. B-stads möte med aktiva (i flera fall alltför aktiva) invandrarfäder och även misshandlande invandrarfäder gav en annan bild av fäder och innebar en annan verklighet att förhålla sig till än den i A-by. Pappornas bild av sitt eget faderskap präglas också av kluvenhet och ambivalens. Papporna känner sig missförstådda av sociala myndigheter. De uttryckte desperation, maktlöshet och kände sig stämplade. De måste kämpa för att få vara aktiva och närvarande fäder för sina barn och att bli sedda som det. Dessutom ifrågasätter flera av papporna sig själva som fäder. I synnerhet de pappor som missbrukar eller har missbrukat är näst intill skoningslösa i beskrivningarna av sig själva och hur de har behandlat sina barn. Flera hade erfarit att barn är oförenligt med missbruk. Det innebar antingen att de var känslomässigt frånvarande för barnen trots att de var fysiskt närvarande eller att de var fysiskt frånvarande. Pappornas bilder är färgade av stark längtan efter Svenssonliv d.v.s. kärnfamiljsliv. Jag menar att papporna i vissa avseenden kan ses som marginaliserade. Å andra sidan ger papporna en bild av sig själva som normala fäder. De beskriver gott faderskap som att vara närvarande, aktiva, manliga förebilder och att kunna sätta gränser, men de gör det i en annorlunda betydelse än socialsekreterarna. Flera av dem menar att de lever upp till det, även om det är svårt ibland. Liksom fäder i allmänhet, känner de osäkerhet i sin fadersroll och menar att relationen till sina egna fäder haft betydelse, men kanske använder papporna i större utsträckning sina egna fäder som negativt exempel. Modern hade större betydelse än väntat. De flesta var glada för att bli pappor, var med vid förlossningen och beskrev den med mycket positiva ord. De menade att de mognat med faderskapet och att livet fått en annan mening. Barnen hade en viktig plats i deras liv och de upplevde att de betyder mycket för sina barn och att de är viktiga som pappor för dem. Förutom närvaro, ansvar, gränssättning och förebilder, betonar papporna känslomässiga aspekter som viktiga för faderskapet. Bilden av det normala faderskapet betyder sannolikt mer för pappor med en fot i marginalen. Svenssonlivet framställs på ett idealiserat sätt och ett näst intill ouppnåeligt mål. Det kan uppstå svårigheter med gränssättning gentemot barnen när papporna ska ta igen tidigare brister i faderskapet. De upplever en kluvenhet mellan missbruk och barn och känner oro och skuld inför sina barn. Samtidigt ser de att deras erfarenheter som ifrågasatta fäder har fört med sig värdefulla erfarenheter som inte fäder i allmänhet har. Avhandlingen visar att bilden av fäder till socialt utsatta barn som huvudsakligen frånvarande är missvisande. Snarare finns det en variation som är svår att se utan att tala med fäderna själva. Mer kunskap om fädernas perspektiv och socialtjänstens bilder av ifrågasatt faderskap kan leda till en bättre kommunikation mellan fäder och socialtjänsten. Det kan i sin tur stärka socialt utsatta barns livssammanhang.

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.

The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.

Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

This article describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. A total of 20 professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. They also afforded carers the opportunity to explore difficult emotional issues, suggesting the need to develop services to help carers deal with their feelings.

The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

The purpose of this article is to discuss the implementation of the International Classification of Functioning, Disability and Health (ICF), and the ICF version for Children and Youth (ICF-CY), within the context of augmentative and alternative communication (AAC). First, the use of the ICF and the ICF-CY in AAC research is analyzed. Second, examples of training and implementation of ICF from other contexts besides AAC are provided. Finally, we synthesize data to provide directions for future implementation of the ICF and ICF-CY in the field of AAC. We conclude that, within AAC, organizational routines and intervention documents need to be adapted to the universal language and classification framework of the ICF and ICF-CY. Furthermore, examples are needed to demonstrate how factors affect implementation at organizational and individual levels.

Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.

Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.

Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.

Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Abstract
AIMS AND OBJECTIVES:
The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
BACKGROUND:
There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
DESIGN AND METHODS:
Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
RESULTS:
Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
CONCLUSION:
To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
RELEVANCE TO CLINICAL PRACTICE:
The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.

The failure of research findings to influence practice is well established, particularly in the field of social care. Provision of information alone rarely results in change. A project recently completed by the Social Policy Research Unit, University of York, took an innovative approach to the issue of translating research into practice.

This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on cause of parental death. In addition, cause of death did not substantially affect the relations between risk and protective factors and bereaved children's outcomes. It is concluded that cause of death from violence or suicide is not a very useful indicator of bereaved children's need for or likelihood of benefiting from an intervention.

This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.

The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

An informal home caregiver is a person (family member or friends) who takes care of or participates to some degree in the care of a person in the home. This study provides a selected review of literature published 1982–2003 of the informal home caregiving from a gender perspective. A computer-aided search using MEDLINE and CINAHL was carried out. The final number of articles was 45. The main findings were that there are differences in informal caregiving due to gender. Gender differences were found in categories such as affected lifeworld, health problems, managing ability and caregivers experience from caring for a care receiver with different diseases. It is of importance that the informal caregiver is involved in the planning and that a planning act takes place. If society involves the informal home caregiver we can avoid the caregiver being the hidden victim of illness and disability. It is known that burdensome caregiving can result in encroachment due to exhaustion.

Avhandling

Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called 'working carers', there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.

This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.

An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff's experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers' experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).

Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.

In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers' needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.

Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers' deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.

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

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

Äldreomsorgsforskning i Norden. En kunskapsöversikt. TemaNord 2005:508. M. Szebehely

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

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

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

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

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

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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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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).

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).

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.

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.

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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!

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

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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

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, 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 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.

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.

'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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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

Detta är en studie över anhöriga och närståendes uppfattningar om psyko-pedagogisk anhörigundervisning som genomförts vid Psykosvårdens utrednings- och behandlingsenhet, Psykiatriska kliniken Örebro.

Att vara anhörig till en person med psykisk ohälsa kan vara förenat med omfattande svå-
righeter, men också med empati och kärlek till att vilja hjälpa och stödja sin närstående.
Kontakt och stöd från personal inom vård och omsorg och andra anhöriga med liknande
erfarenheter kan vara betydelsefullt för att hantera situationen. Trots goda intentioner i
svenska styrdokument framkommer i flera utredningar och forskning, att anhörigas behov
av kontakt och anpassat stöd från vård och omsorg inte alla gånger tillgodoses i tillräcklig
omfattning.
Syftet med föreliggande kunskapsöversikt är därför att presentera exempel på stödjande
insatser för vuxna anhöriga (18 år eller äldre), till vuxna personer (18 år eller äldre) med
psykisk ohälsa och den dokumenterade betydelse och/eller effekt som stödet kan ha för
anhöriga. Det skall tilläggas att syftet inte är att jämföra eller dra slutsatser om vilka
stödinsatser som är mest betydelsefulla eller effektiva.
Litteratursökning av svensk och internationell forskning och utvecklingsarbeten genomfördes
i olika databaser. Sökningen omfattade aspekter som: psykisk ohälsa, anhöriga,
stöd och betydelse samt effekt. Efter en första granskning av 854 studier bedömdes slutligen
54 vara relevanta för kunskapsöversiktens syfte och frågeställningar. Av dessa har 18
studier genomförts i Sverige. Studierna är genomförda med såväl kvantitativa som kvalitativa
metoder.
Vid tematisk analys av studierna framkom två huvudområden. Det ena omfattade stöd
från personal inom hälso- och sjukvård och socialtjänst. Det delades in i sex delområden;
psykopedagogiska interventioner, telefonrådgivning i grupp, webbaserat stöd, samtal och
bemötande, delaktighet i vård och omsorg, samt vård och omsorg till den närstående med
psykisk ohälsa. Det andra huvudområdet omfattade stöd från personer med egen erfarenhet
som anhörig till person med psykisk ohälsa, omfattande tre delområden; ömsesidiga
stödgrupper, individuella samtalsträffar och stöd via telefon.
Insatserna hade genomförts i grupp eller individuellt likväl som direkt eller indirekt stöd,
där indirekt stöd främst riktades till den närstående med psykisk ohälsa, vilket i sin tur
kan underlätta situationen för anhöriga. Innehållet i insatserna hade stora variationer.
Några återkommande aspekter var information, utbildning, rådgivning, problemlösning
och stresshantering, delaktighet i vård och omsorg, bemötande från personal och erfarenhetsutbyte
med andra anhöriga. Resultatet indikerar att stödinsatserna på många olika
sätt kan vara betydelsefulla för anhöriga själva, såväl fysiskt, psykiskt som socialt, men
också av betydelse för att hantera situationen och på så sätt stödja sin närstående med
psykisk ohälsa. Psykopedagogiska interventioner och ömsesidiga stödgrupper som leds av
andra anhöriga var de insatser som omfattade flest studier, såväl systematiska forsknings-
översikter som enskilda studier. Resultaten av dessa indikerade minskad belastning, ökad
kunskap om sjukdomen och behandling, samt ökad möjlighet att hantera situationen.
8
Några studier indikerade också att inställningen till den närstående med psykisk ohälsa
hade förändrats, samt att socialt stöd i grupp var betydelsefullt för att minska social isolering
och känsla av ensamhet. Utvärderingarna hade i nästan alla studier genomförts inom
ett år efter insatsen avslutats, vilket medför betydande begränsningar i vilken långtidseffekt
insatserna haft. Insatserna genomfördes av olika organisationer och personer, som
landsting, kommun, intresseorganisationer, privat och projekt under avgränsad tid. I
några studier genomfördes de i samarbete mellan flera organisationer.
Resultatet i kunskapsöversikten är inte en total kartläggning av forskning som genomförts
om stöd för anhöriga till personer med psykisk ohälsa. Det är exempel på olika former av
stöd och där det finns utvärdering som beskriver dess betydelse. Det finns säkerligen fler
studier som beskriver detta område som inte inkluderats i resultatet, både i Sverige och
internationellt. Allt som framkommer i resultatet är inte överförbart eller generaliserbart
i andra sammanhang än där det genomförts. Detta på grund av metodologiska begränsningar
i vissa studier eller att det finns geografiska, kulturella eller andra aspekter som
begränsar resultatens överförbarhet.
Utifrån resultatet av kunskapsöversikten och från anhörigas erfarenheter i andra sammanhang,
kan följande områden ses som betydelsefulla att beakta vid förändring och
utveckling av stöd till anhöriga:
➢ Information på samhällsnivå; information om var vård för personer med psykisk
ohälsa och stöd för anhöriga finns att tillgå.
➢ Strukturerade former av anhörigstöd; olika former av
psykopedagogiska insatser, ömsesidiga stödgrupper, webbaserat
stöd och individuellt samtalsstöd.
➢ Bemötande från personal inom vård och omsorg.
➢ Anhörigas delaktighet i vård och omsorg.
➢ Beaktande av sekretessen ur anhörigas och deras närståendes
perspektiv såväl som ur vård- och omsorgspersonals perspektiv.
➢ Vård och omsorg av den närstående som också beaktar anhörigas behov av trygghet.
➢ Att utveckling sker i nära samarbete mellan vård och omsorg, samt intresseorganisationer
så att allas kompetens och erfarenhet tas tillvara.
Förhoppningen är att dessa exempel på stöd som framkommit i kunskapsöversikten kan
bidra till kunskap och inspiration för utveckling och förändring av stödjande insatser för
vuxna anhöriga som har en vuxen närstående med psykisk ohälsa. Det är också betydelsefullt
att det ges förutsättningar till fortsatt dokumentation och utvärdering av insatser
som andra kan ta del av.

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.

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
7
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.

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.

Kapitel i antologi

Skrift med syfte att inspirera till samtal om anhörigas hälsa. I samtal kan erfarenheter ventileras och tillsammans med innehållet i kunskapsöversikten öka förståelsen för anhöirgas situation. Syftet är att skapa nyfikenhet, vilket kan leda till utveckling av innehållet i stödet till anhöirga.

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.