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Siri går på kalas

Annette Segerberg (2009)

Boken "Siri går på kalas" är skriven av en mamma Annette, bildkonstnär som har epilepsi. Idén till boken fick hon när hennes dotter ställde frågan vad som händer när Annette får anfall. Anette skriver "Som förälder behöver man ibland hjälp att förklara sin och även andras epilepsi för barnen". Boken är en bliderbok och passar barn från ca 3 år till 12 år.

Skolans metoder för att förebygga psykisk ohälsa hos barn – en nationell inventering i grundskolor och gymnasieskolor

Socialstyrelsen (2009)

Skolan kan ha en viktig roll för att främja psykisk hälsa bland barn och unga och för att tecken på psykisk ohälsa bland eleverna upptäcks tidigt. Hur dessa möjligheter ska tas till vara är en viktig fråga i det fortsatta preventiva arbetet. Ytterst handlar det om skolans förutsättningar att förmedla kunskap. En hälsofrämjande och förebyggande verksamhet som är väl utformad kan förändra hela skolans klimat och förbättra skolans möjligheter att klara sitt kärnuppdrag

UPP-centrum genomförde i början av år 2008 en enkätundersökning i ett urval grund- och gymnasieskolor för att få en uppfattning om vilka program och strukturerade arbetssätt som dessa använder för att upptäcka och åtgärda tidiga tecken på psykisk ohälsa. Undersökningen ingick i ett större uppdrag från regeringen att inventera metoder som används för att förebygga psykisk ohälsa hos barn.

Enkäten bestod i huvudsak av frågor inom följande områden:

Vilka program/strukturerade arbetssätt man använder i skolan för tidig upptäckt av barn som riskerar att utveckla psykisk ohälsa?
Vilka metoder/strukturerade arbetssätt man använder i skolan för att åtgärda/stödja barn som riskerar att utveckla psykisk ohälsa?
Deltar skolan i någon form av samverkan och i så fall med vem/vilka?
Vilka behov finns det av kunskapsstöd och rekommendationer?
Resultaten måste tolkas med försiktighet eftersom svarsfrekvensen bara uppgick till 58 procent, men de tyder ändå på att skolorna använder en relativt stor mängd program och strukturerade arbetssätt med ett universellt preventivt syfte i sitt arbete med att motverka mobbning och normbrytande beteende. Inte minst har många skolor utarbetat egna sådana program och strukturerade arbetssätt. Drygt hälften av skolorna hade utvärderat de program och arbetssätt som de använder. Även när det gäller föräldrastöd och föräldrasamverkan har många skolor utarbetat egna program och strukturerade arbetssätt, men många använder också etablerade program och arbetssätt. En tredjedel av de svarande skolorna använde inget program eller strukturerat arbetssätt för föräldrastöd och föräldrasamverkan. Bland dem som använde sådana program och arbetssätt hade omkring hälften utvärderat det.

En stor majoritet av skolorna uppgav att det finns nedskrivna rutiner eller handlingsplaner för hur man ska gå till väga när någon ur personalen tidigt upptäcker elever som visar tecken på psykisk ohälsa. Det var också en tydlig majoritet av de svarande skolorna som sade att de samverkar med andra verksamheter utanför skolan i syfte att upptäcka, förebygga eller åtgärda psykisk eller psykosocial ohälsa. Vanligast var samverkan med socialtjänsten och barn- och ungdomspsykiatrin, men även polisen var en vanlig samverkanspart. Färre skolor sade att de har samverkansavtal med andra verksamheter, och ännu färre att de hade dokumenterat och utvärderat samverkan.

Områden som skolorna nämnde som viktiga för kunskapsstöd var om barn och unga i olika riskmiljöer, funktionsnedsättning/diagnoser samt olika program för tidig upptäckt samt för stöd och behandling. Skolorna tillfrågades också om behovet av allmänna råd eller rekommendationer för att välja program eller arbetssätt i arbetet att upptäcka, åtgärda och förebygga psykisk ohälsa och i så fall inom vilka områden. Även om de flesta efterfrågar allmänna råd och rekommendationer i allmänhet pekar en del av svaren på att vissa områden är mer angelägna än andra. Det gäller bl.a. depressioner, självskadebeteende, ätstörningar, mobbning samt föräldrastöd och föräldrasamverkan.

Sammanfattningsvis leder resultaten till tre centrala slutsatser inför det fortsatta arbetet med skolans roll och insatser för elever med psykisk ohälsa:

Skolans uppdrag och roll behöver förtydligas i förhållande till arbetet med att förebygga psykisk ohälsa hos barn och unga. Ingen annan verksamhet har så breda och långvariga kontakter med barn och unga som skolan. Skolans arbete för elevernas personliga utveckling kan, direkt och indirekt, påverka deras psykiska hälsa. Det kan öka möjligheterna att tidigt upptäcka tecken på psykisk ohälsa och att ge rätt stöd åt barn och unga med tecken på psykisk ohälsa. Det finns också ett tydligt samband mellan skolans kunskapsmål och psykisk hälsa.
Det behövs fortsatta studier av de program och strukturerade arbetssätt som skolan använder för att tidigt upptäcka tecken på ohälsa bland elever och om de program och arbetssätt som används för att ge elever med tecken på psykisk ohälsa stöd. Dessutom behövs fördjupade analyser av vad andra program och arbetssätt, som används i t.ex. arbetet mot mobbning, kan betyda för möjligheterna att förebygga psykisk ohälsa hos barn.
Skolan behöver bättre tillgång till kunskaper om barns psykiska hälsa och om hur de kan arbeta med att upptäcka tidiga tecken på psykisk ohälsa och själva eller i samverkan med andra ge elever med tecken på psykisk ohälsa rätt stöd.

Spindeln i nätet. En kartläggning av demenssjuksköterskor i Stockholms län. 2009:3

Meinow, B. (2009)

I Stockholms län finns (hösten 2008) en demenssjuksköterska i tio av länets
kommuner, och demensvårdsutvecklare med delvis liknande funktioner i
ytterligare två. De har bildat ett regionalt nätverk och träffas regelbundet. Sin
nuvarande tjänst har de haft mellan några månader till 11 år. De har alla en lång
erfarenhet av arbete inom äldrevården, och flera av dem har skaffat sig olika
former av vidareutbildning inom demensområdet. Hälften har arbetat som
sjuksköterska i särskilt boende. De har vanligen blivit ombedda att söka tjänsten
utifrån sitt tidigare kända engagemang, och i några fall är de själva initiativtagare
till att tjänsten finns. Fyra av demenssjukskötersketjänsterna och de båda
demensvårdsutvecklartjänsterna finansieras med nationella stimulansmedel och är
således projekttjänster.
Intervjuerna visar att arbetsuppgifterna varierar mellan kommunerna. Skillnader
finns i huvudsak vad gäller graden av samarbete med andra aktörer inom
landstingets äldrevård och den kommunala äldreomsorgen och huruvida tonvikten
i arbetet lutar mot anhörigstöd eller utbildningsfrågor.
En majoritet av demenssjuksköterskorna beskriver sin funktion som "spindeln i
nätet", dvs. de har en övergripande funktion i kommunen som sakkunnig inom
demensfrågor, både för personer med minnesproblem och deras närstående,
personal inom äldreomsorg och sjukvård, kommunledningen och allmänheten.
Information, råd och stöd till personer med minnessvårigheter och deras
närstående framställs som en central uppgift. Där funktionen är bäst etablerad kan
demenssjuksköterskan komma in i ett tidigt stadium redan före diagnos. Det kan
vara personen själv som upplever att han eller hon har minnessvårigheter som tar
kontakt, en närstående eller någon inom vården eller äldreomsorgen.
Demenssjuksköterskan initierar minnesutredningar, hjälper personen och dennes
närstående att hitta och få den hjälp de behöver inom sjukvård och äldreomsorg,
förmedlar kontakter och motiverar att ta emot hjälpen. Stödinsatser som
demenssjuksköterskan informerar om och i vissa fall ansvarar för omfattar t.ex.
dagvård, anhöriggrupper, avlösarservice och öppna verksamheter med kafé och
information. Vägledning i hur man som frisk anhörig bemöter en person med
demenssjukdom visar sig vara en kärnfråga i enskilda stödsamtal med närstående.
De flesta demenssjuksköterskor beskriver ett väl fungerande samarbete med en
eller flera aktörer inom äldreomsorg och sjukvård, vanligast biståndshandläggare
och anhörigkonsulenter. I några kommuner har demenssjuksköterskan och
minnesmottagningen vid den geriatriska kliniken utvecklat rutiner för samarbete
och informationsöverföring. Däremot saknas i de flesta kommuner ett
kontinuerligt samarbete med husläkarverksamheterna.
Flertalet demenssjuksköterskor och de två demensvårdsutvecklarna arbetar med
utbildning för personal inom kommunens äldreomsorg. Medlen från
Kompetensstegen och stimulansmedel har möjliggjort utbildningssatsningar.
Demenssjuksköterskorna kan också fungera som handledare och konsulter vid
2
speciella problem. I några kommuner har man satsat på att utbilda i olika metoder,
som reminiscens och validation och bedömningsinstrumentet GBS.
Utöver sin funktion som sakkunnig i demensfrågor för kommunens invånare samt
personal inom sjukvård och äldreomsorg har samtliga demenssjuksköterskor
också uppdraget att informera allmänheten om demenssjukdomar samt om sin
egen roll i kommen, t.ex. genom kontakt med frivilligorganisationer.
Att följa utvecklingen i demensvården är en central del av funktionen som
sakkunnig i demensfrågor. Demenssjuksköterskorna har därmed också en viktig
roll i utvecklingsarbetet i den egna kommunen. Intervjuerna visar dock på olika
erfarenheter när det gäller att nå fram med sina erfarenheter och idéer till den
kommunala ledningen. Delvis synes detta hänga samman med var i
organisationen de finns. Ju mer centralt, desto större är möjligheten att ha en bra
dialog med kommunledningen.
Ett stort problem som demenssjuksköterskorna ser inom demensvården såväl som
i sin egen yrkesroll är bristen på samverkan mellan olika aktörer, särskilt mellan
de två huvudmännen. En annan svårighet är alltjämt på sina håll att få
husläkarverksamheter att genomföra demensutredningar.
Flera demenssjuksköterskor lyfter fram att det behövs mer utbildning kring olika
demenssjukdomar och lämpliga förhållningssätt på alla nivåer inom sjukvård och
äldreomsorg. Å andra sidan påpekas också att bemanningen inom den kommunala
äldreomsorgen måste ses över så att personalen har möjlighet att omsätta sina
kunskaper i praktiken.
När det gäller utvecklingen av demensvården förespråkar samtliga
demenssjuksköterskor att det behövs personer på husläkarverksamheterna att
samarbeta med, som tillsammans med demenssjuksköterskan kan vara en
"paraplycentral". I sin framtidsvision ser de, med inspiration från exempelvis
Kalmar läns landsting, att det borde inrättas en funktion som demenssjuksköterska
vid husläkarverksamheterna, med särskilt ansvar för demensutredningar och
samverkan med minnesmottagning och kommun. I kommunen hoppas flera
demenssjuksköterskor på utvecklingen av hemtjänstteam som enbart arbetar med
personer med demenssjukdom. Till stöd för dessa funktioner ser de en utveckling
där demenssjuksköterskan tillsammans med fler professioner bildar ett
demensteam som är gemensamt för de båda huvudmännen.
Sammanfattningsvis visar intervjuerna att funktionen demenssjuksköterska är
mångfacetterad och riktar sig mot många olika aktörer. Det varierar dock mellan
kommunerna i vilken utsträckning man i praktiken har möjlighet att vara
"spindeln i nätet". En slutsats är att samarbete med alla aktörer inom demensvården
är en central förutsättning för att demenssjuksköterskan ska kunna bistå
med råd och stöd till personer med minnesproblem och deras närstående redan i
ett tidigt stadium – och därmed förbättra möjligheten till en obruten vårdkedja. Ju
mer heltäckande samarbetet med sjukvården och äldreomsorgen är desto bättre
förutsättningar finns också för demenssjuksköterskan att föra ut kunskap och
3
information till personal. Rutinerna för kontakt och samarbete med t.ex.
husläkarverksamheter, hemtjänst och biståndshandläggare behöver vara så säkra,
tydliga och väl förankrade hos alla parter att de även fungerar i verksamheter med
hög personalomsättning.
En central position i kommunstrukturen och en direkt dialog med
kommunledningen är viktiga förutsättningar för att kommunen ska kunna dra
nytta av demenssjuksköterskans kunskaper i arbetet att utveckla demensvården.
I synnerhet i större kommuner är demenssjuksköterskan ofta tvungen att prioritera
vissa arbetsuppgifter. Ofta lägger man då tonvikten antingen på anhörigstöd eller
på sin utbildnings- och rådgivningsfunktion för personal inom äldreomsorgen. I
en kommun har lösningen varit att demenssjuksköterskan fungerar som en
projektledare och arbetar i ett team om fyra personer som specialiserat sig på olika
uppgifter såsom anhörigstöd, utbildning och utvecklingsarbete. En annan tänkbar
lösning är att flera demenssjuksköterskor specialiserar sig på olika uppgifter.

Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK).

Bakas T, Farran CJ, Austin JK, Given BA, Johnson EA, Williams LS. (2009)

Purpose: Stroke caregivers often express the need for information about stroke and assistance with stroke-related care in the early discharge period. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week program that addresses caregiver needs. This study explored the efficacy of the TASK program in improving stroke caregiver outcomes. Method: Guided by a conceptual model, 6 outcomes (optimism, task difficulty, threat appraisal, depressive symptoms, life changes, general health perceptions) were measured in 40 caregivers randomized to the TASK (n = 21) or an attention control group (n = 19). Data were analyzed using analysis of covariance (ANCOVA), controlling for baseline scores and minutes spent with the nurse. Results: Significant increases in optimism at 4 weeks, 8 weeks, and 12 weeks were found, with medium effect sizes for the TASK group relative to the control group (p < .05). Significant improvements in task difficulty at 4 weeks, and threat appraisal at both 8 weeks and 12 weeks were also found (p < .05). Conclusion: Caregivers receiving the TASK intervention improved in optimism, task difficulty, and threat appraisal. Further testing of an enhanced version of the TASK program is warranted, with attention directed toward more distal stroke caregiver outcomes.

Stöd till anhöriga ställer krav på strategi - Meddelandeblad

Socialstyrelsen (2009)

Meddelandebladet innehåller information om att kommuner bör analysera och ha en aktiv strategi för sitt arbete med anhörigstöd. Detta är ett av flera meddelandeblad kopplade till bestämmelsen om att kommunen ska erbjuda anhörigstöd.

Stöd till anhöriga till personer under 65 år. Fokus på anhöriga, nr 15

Lindgren, Karin (2009)

Sedan den 1 juli 2009 ska landets kommuner erbjuda stöd till anhöriga
som vårdar eller stödjer någon som är långvarigt sjuk, äldre eller har
funktionshinder. Karin Lindgren som arbetar på Socialstyrelsens enhet
för funktionshindersfrågor vill med denna artikel uppmärksamma anhö-
riga till yngre personer, en grupp som anhörigstödet i många kommuner
ännu inte har så stor erfarenhet av. Förhoppningsvis kan artikeln vara
till hjälp när det gäller att börja tänka på hur stöd anpassat till denna
målgrupp av anhöriga ska utformas

Utvärdering av den avgiftsfria avlösningen inom äldreomsorgens Öppna och förebyggande verksamhet

Ericsson, U.-B., Henriksson, K., & With Broné, U. (2009)

Syftet med utvärderingen är att ta reda på om den avgiftsfria avlösningen har underlättat
situationen för anhöriga som hjälper eller vårdar någon närstående i hemmet, samt att inhämta
synpunkter och förslag på olika former av stöd kommunen bör vidareutveckla och satsa på.
En första utvärdering gjordes för perioden september 2005 t.o.m. februari 2006, den andra för
perioden mars 2006 t.o.m. december 2007.
Utvärderingen för perioden januari 2008 t.o.m. december 2008 genomfördes som tidigare i
enkätform och sändes till de 69 anhöriga i Uppsala kommun som erbjudits avgiftsfri
avlösning i hemmet eller i gruppverksamhet. De flesta anhöriga är maka/make men fyra är
barn samt ett syskon. Svar erhölls från 47 personer, varav 34 kvinnor och 13 män.
Den vanligaste orsaken till närståendes behov av hjälp är nedsatt fysisk och psykisk oförmåga
i kombination med annan sjukdom såsom demenssjukdom och stroke. Även hjärtkärlsjukdom
och nedsatt syn- och hörsel uppges som orsak till hjälpbehov.
Majoriteten av de anhöriga tycker att avlösningen har fungerat mycket bra. De är nöjda med
att få tid till att uträtta ärenden och att få ägna sig åt egna intressen. Samtidigt är den
närståendes välbefinnande och möjlighet till aktivitet och omväxling viktig. För dem som har
avlösning i hemmet skapar det trygghet att det är samma person som kommer.
När det gäller önskemål om stöd och hjälpinsatser handlar det främst om att få mer tid avsatt
för avlösning.

Validation of an inventory of best practices in the provision of augmentative and alternative communication services to students with severe disabilities in general education classrooms

Calculator, S. N. and T. Black (2009)

Purpose: To compile and then validate a set of evidence-based best practices related to augmentative and alternative communication (AAC) and its role in fostering the inclusion of students with severe disabilities in general education classrooms and other inclusive settings. Method: A comprehensive review of the literature pertaining to AAC and inclusive education for students with severe disabilities in inclusive classrooms resulted in an inventory of possible best practices. Reliability testing was conducted to verify levels of evidence assigned to each source and corresponding practice. Practices were reviewed and validated by a panel of 8 experts. Statistical analysis revealed a high level of internal consistency across items composing the inventory. Results: An inventory of 91 practices, each assigned to 1 of 8 predetermined categories, was uncovered. Themes arising in experts' comments related to items in the inventory are discussed. Conclusions: Possible uses of the inventory are discussed along with suggestions for future research. © American Speech-Language-Hearing Association.

Decreasing the risk of complicated bereavement and future psychiatric disorders in children

Kirwin, K.M. & Hamrin, V. (2005)

Abstract
TOPIC:
Decreasing the risk of complicated bereavement and future psychiatric disorders in children.
PURPOSE:
This literature will determine what major factors influence a child's response to death and to understand how children react to the death of a parent at different developmental stages. It will evaluate the following: a) What are children's emotional responses to the death of a parent? b) How can a surviving parent help the grieving child complete the tasks of grieving? c) What skills are important for a parent to learn in order to help the grieving child through the tasks of grieving and d) How can mental health providers help the grieving family and the grieving child?
SOURCES:
Relevant literature from child psychiatry, child psychology, and nursing.
CONCLUSIONS:
The death of a parent is a major stressful event for children and their families. This traumatic event can bring serious psychological and social distress to bereaved children and their families. Children who are not supported in the early phases of grieving can develop serious emotional and behavioral problems that can lead to the development of some major psychiatric disorders. Providing early prevention support programs for surviving parents and bereaved children can help both the parents and the children adapt to their losses. These structured programs can decrease the risk of complicated grief in bereaved families. More research studies are needed to validate the effectiveness of these early prevention program interventions.

Från psykiskt sjuk till psykiskt funktionshindrad

Hydén, Lars-Christer (red) (2005)

Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg

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

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

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

Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?

Kjellin, Lars & Östman, Margareta (2005)

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.

Scoping studies: towards a methodological framework

Arksey, H., & O'Malley, L. (2005)

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

Siblings of Children With Disabilities: Research Themes

Stoneman, Zolinda (2005)

Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.

Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation

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

BACKGROUND AND PURPOSE:
The purpose of this prospective study was to identify early predictors of spouses' quality of life at 1 year after stroke.
METHODS:
At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed.
RESULTS:
About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified 'passive coping strategy of the caregiver' as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0-4% of the variance.
CONCLUSIONS:
A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.
2005 S. Karger AG, Basel

Striving to survive: Families’ lived experiences when a child is diagnosed with cancer

Björk, Maria, Wiebe, Thomas, Hallström Inger (2005)

When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.

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

Flint, A. J. (2005)

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

A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs

Schuckit, MA., Smith, TL., Kalmijn, J., & Danko, GP. (2005)

Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations

Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol

Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items

Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.

A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anhörigvård [elektronisk resurs].

Bergh, A. (2005)

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

Anticipated support from neighbors and physical functioning during later life

Shaw, B. A. (2005)

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

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

Brunt D, Hansson L. (2005)

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

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

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

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

Skerfving, Annemi (2005)

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

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

Skerfving, A. (2005)

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

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

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

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

Brief Report: Family-Based Group Intervention for Yong Siblings of Children with Chronic Illness and Developmental Disability

Lobato, Debra, J. & Kao, Barbara, T. (2005)

Objective To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). Methods Forty-three healthy siblings (ages 4–7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. Results Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. Conclusions Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.

Carers in the welfare state : on informal care and support for carers in Sweden.

Jegermalm, M. (2005)

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

Children's adjustment to a parent's stroke: determinants of health status and psychological problems, and the role of support from the rehabilitation team

Visser-Meily A, Post M, Meijer AM, Maas C, Ketelaar M, Lindeman E. (2005)

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

Choice and preference assessment research with people with severe to profound developmental disabilities: A review of the literature

Caltenco, H., Larsen, H. S., & Hedvall, P. O. (2005)

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

Clinical implications of The development of the person

Suess, G. J., & Sroufe, J. (2005)

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.

Cognitive impairment after stroke - impact on activities of daily living and costs of care for elderly people. The Goteborg 70+ Stroke Study.

Claesson L, Linden T, Skoog I, Blomstrand C. (2005)

BACKGROUND AND PURPOSE:
The economic burden of stroke is substantial and is likely to increase with an increasing number of elderly individuals in the population. There is thus a need for information on the use of health care resources and costs among these elderly stroke patients. We examined the impact of the cognitive impairments on the ability to perform activities of daily living (ADL) and utilization and costs of health care in a cohort of elderly stroke patients.
METHODS:
One hundred and forty-nine patients aged >/=70 years with acute stroke were included. The patients were assessed regarding their ability to carry out ADL and health resource utilization and cost during the first year after stroke. Cognitive impairments were assessed 18 months after the index stroke.
RESULTS:
Stroke severity in acute stroke and cognitive impairment at 18 months after stroke onset was associated with impairment in ADL and increased costs for utilisation of care during the first year. Patients with cognitive impairment were more dependent on personal assistance in ADL. Costs per patient during the study were three times higher for patients with cognitive impairment. Hospital care, institutional living and different kinds of support from society accounted for the highest costs.
CONCLUSIONS:
Costs of care utilisation during the first year after stroke were associated with cognitive impairments, stroke severity and dependence in ADL. The results should be interpreted cautiously as the assessment of cognitive function was made 18 months after stroke onset and costs were estimated for the first year after stroke.

Computerized training of working memory in children with ADHD- a randomized, controlled trial

Klingberg T, Fernell E, Olesen PJ, Johnson M, Gustafson P, Dahlström K, et al. (2005)

Objective

Deficits in executive functioning, including working memory (WM) deficits, have been suggested to be important in attention-deficit/hyperactivity disorder (ADHD). During 2002 to 2003, the authors conducted a multicenter, randomized, controlled, double-blind trial to investigate the effect of improving WM by computerized, systematic practice of WM tasks.

Method

Included in the trial were 53 children with ADHD (9 girls; 15 of 53 inattentive subtype), aged 7 to 12 years, without stimulant medication. The compliance criterion (>20 days of training) was met by 44 subjects, 42 of whom were also evaluated at follow-up 3 months later. Participants were randomly assigned to use either the treatment computer program for training WM or a comparison program. The main outcome measure was the span-board task, a visuospatial WM task that was not part of the training program.

Results

For the span-board task, there was a significant treatment effect both post-intervention and at follow-up. In addition, there were significant effects for secondary outcome tasks measuring verbal WM, response inhibition, and complex reasoning. Parent ratings showed significant reduction in symptoms of inattention and hyperactivity/impulsivity, both post-intervention and at follow-up.

Conclusions

This study shows that WM can be improved by training in children with ADHD. This training also improved response inhibition and reasoning and resulted in a reduction of the parent-rated inattentive symptoms of ADHD.

Depressive disorders in caregivers of dementia patients: A systematic review

Cuijpers, P. (2005)

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.

Det barn vi fick

Bryhagen, Åsa (2005)

Ett handikappat barn - inte ett friskt eller välskapt. Vi drabbas av livet, förs in i en kris som innebär en helt annan kamp och oro än vi tänkt oss. Våra fasader och masker faller och vi förs till våra djupaste frågor.
Ur det brustna växer något nytt, ömtåligare och mänskligare.
Det barn vi fick är en personlig berättelse med vinklingar och funderingar kring ett annorlunda barn och handikapp, skola, samhälle, människosyn och människovärde.

Boken vänder sig till alla som är direkt berörda, Föräldrar, anhöriga, de som genom yrke eller engagemang möter dessa barn och vuxna.

Determinants of quality of life in stroke survivors and their informal caregivers

Jönsson A, Lindgren I, Hallström B, Norrving B, Lindgren A. (2005)

BACKGROUND AND PURPOSE: We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. METHODS: QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. RESULTS: The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. CONCLUSIONS: Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

Dialektisk beteendeterapi vid borderline personlighetsstörning. Utvärdering av nya metoder inom hälso- och sjukvården

SBU (2005)

Metod och målgrupp
Borderline personlighetsstörning kännetecknas av ett genomgående mönster av instabilitet i regleringen av känslor, bristande impulskontroll, relationsproblem och låg självkänsla. I kliniska sammanhang yttrar sig störningen i svårigheter att hantera känslor, impulsiva handlingar och aggressivitet, upprepade tillfällen med självskadande beteenden och självmordsförsök. Patienter med borderline personlighetsstörning har ofta även andra personlighetsstörningar eller sjukdomar, t ex depression, ätstörning, drogmissbruk och ångestsjukdomar. DBT är en omfattande och avancerad form av kognitiv beteendeterapi (KBT) som specifikt utvecklats för kroniskt självmordsbenägna patienter med borderline personlighetsstörning. Metoden har flera inslag, bl a beteendeförändrande tekniker och metoder för att lära sig acceptera känslor. Behandlingen genomförs i flera steg, där självskadande och terapistörande beteenden prioriteras när behandlingen inleds. Ett utmärkande drag för DBT är den omfattande kontakt som behandlingsteamet har med patienten i form av individualterapi, gruppterapi och telefonstöd. Utöver detta ingår handledning och stöd till personal som arbetar med patientgruppen. Det har beräknats att i Sverige har mellan 70 000 och 140 000 personer diagnosen borderline personlighetsstörning. Hur många av dessa som skulle kunna bli aktuella för behandling med DBT är inte klarlagt.

Frågeställning
Kan behandling med DBT ge en minskning av självskadebeteende och drogmissbruk hos personer med borderline personlighetsstörning?

Patientnytta
I sex randomiserade kontrollerade studier har DBT prövats mot annan psykiatrisk behandling. En stor andel kvinnor har ingått i dessa. Behandlingens längd har oftast varit ett år och resultaten varierar mellan studierna, vilket delvis beror på att olika undergrupper har studerats. Resultaten har visat att DBT leder till minskat självskadebeteende och även till färre behandlingsavbrott. Effekten har visat sig kvarstå vid uppföljning upp till två år. Behandlingen medför eventuellt också minskat behov av sjukhusvård, och hos missbrukare minskad droganvändning. Det finns inga bevis för att resultaten av behandlingen skulle påverkas av om patienten även har en missbruksdiagnos. Det finns inga säkra resultat vad gäller de olika behandlingskomponenternas betydelse för utfallet.

Ekonomiska aspekter
Kostnaden för DBT har undersökts i en svensk studie. Den totala årliga vårdkostnaden per patient sjönk från 320 000 kronor året innan behandlingen startade till 210 000 kronor då behandlingen gavs. Det finns ett behov av hälsoekonomiska studier där metodens kostnadseffektivitet undersöks.

SBU:s bedömning av kunskapsläget
Det finns begränsat vetenskapligt stöd för att DBT leder till minskat självskadebeteende och att effekten kvarstår vid uppföljning upp till två år (Evidensstyrka 3)*. Eventuellt medför behandlingen också minskat behov av sjukhusvård samt hos missbrukare minskad droganvändning. DBT förefaller således vara en lovande behandlingsform för patienter med borderline personlighetsstörning. Den behöver dock utprövas för svenska förhållanden och det är angeläget att studier avseende metodens kostnadseffektivitet genomförs.

* Detta är en gradering av styrkan i det vetenskapliga underlag som en slutsats grundas på. Graderingen görs i tre nivåer;
Evidensstyrka 1 = starkt vetenskapligt underlag,
Evidensstyrka 2 = måttligt starkt vetenskapligt underlag,
Evidensstyrka 3 = begränsat vetenskapligt underlag.

Detta är SBU:s sammanfattning och bedömning av kunskapsläget. Den bygger på en rapport som är framtagen av SBU i samarbete med Gerhard Andersson (sakkunnig), professor, psykolog, Institutionen för beteendevetenskap, Linköpings universitet, Margda Wærn (granskare), docent, överläkare, Institutionen för klinisk neurovetenskap, Sahlgrenska akademin vid Göteborgs universitet och Lars-Göran Öst (granskare), professor, psykolog, Psykologiska institutionen, Stockholms universitet.

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

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

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

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

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

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

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

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

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

Don't hit my mommy: A manual for child parent psychotherapy with young witnesses of family violence

LIEBERMAN, A. F. & VAN HORN, P. (2005)

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.

Effects of Mental illness on family quality of life

Walton-Moss, B., Gerson, L., Rose, L. (2005)

Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.

Emerging from Out of the Shadows? Service User and Carer Involvement in Systematic Reviews

Braye, S. and M. Preston-Shoot (2005)

The systematic review methodology literature refers to the importance of involving stakeholders, including service users & carers, in the research. However, compared with other aspects of the methodology, this aspect of conducting systematic reviews is underdeveloped & the practice of involvement appears highly variable. This article draws on the experience of working with service users & carers in one systematic review to review the barriers to participation & the components of effective involvement. It suggests that quality standards can be identified for service user & carer involvement in systematic reviews, which will benefit policy & practice development. 77 References.

Evaluation of a preventive intervention for bereaved children

Christ, G.H., Raveis, V.H., Siegel, K., Karas, D. & Christ, A.E. (2005)

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

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

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

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

Families and risk: Prospective analyses of family Psychology

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

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

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

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

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

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

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

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

Family Connections: A Program for Relatives of Persons with Borderline Personality Disorder

Hoffman, P. D., Fruzzetti, A. E., Buteau, E., Neiditch, E. R., Penney, D., Bruce, M. L., et al. (2005)

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

Family support for stroke: one year follow up of a randomised controlled trial.

Mant J, Winner S, Roche J, Wade DT. (2005)

BACKGROUND:
There is evidence that family support can benefit carers of stroke patients, but not the patients themselves.
OBJECTIVE:
To extend the follow up of a single blind randomised controlled trial of family support for stroke patients and carers to one year to ascertain whether there were any late effects of the intervention.
METHODS:
The study was a randomised controlled trial. Patients admitted to hospital with acute stroke who had a close carer were assigned to receive family support or normal care. Families were visited at home by a researcher 12 months after the stroke, and a series of questionnaires was administered to patient and carer.
RESULTS:
The benefits to carers mostly persisted, though they were no longer statistically significant because some patients were lost to follow up. There was no evidence of any effects on patients.
CONCLUSION:
Family support is effective for carers, but different approaches need to be considered to alleviate the psychosocial problems of stroke patients.

Flickan och kajorna

Riita Jalonen, Kriistina Louhi (2005)

En flicka står under ett träd utanför tågstationen. Hennes mamma är inne och köper biljetter för att de ska resa bort. Flicka tittar på kajorna i trädet hon står under, tänker på saknad och minnen av pappa som är död. Hon tänker på vad de gjorde, vad hon minns av honom och hur det känns inuti att ha en pappa som är död. Hennes tankar vindlar över sidorna, från det ena till det andra, men saknade efter pappa går som en röd tråd genom boken. Stora mättade bilder illustrerar boken. Boken passar barn från 5 år.

Framgångsrika preventionsprogram för barn och unga. En forskningsöversikt

Ferrer-Wreder, L.; Stattin, H.; Cass Lorente, C.; Tubman, J.G. & Adamson, L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Framgångsrika preventionsprogram för barn- och unga. En forskningsöversikt.

Ferrer-Wreder L, Stattin H, Cass Lorante C, Tubman JG, Adamsson L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Föräldrar med utvecklingsstörning och deras barn –vad finns det för kunskap?

Socialstyrelsen (2005)

I denna samanställning av befintlig forskning framkommer att några områden är mer studerade än andra. Ett antal studier har undersökt föräldraförmåga och föräldrakompetens. I dag vet man ganska väl vad som kan fungera och vad som kan brista i föräldrarnas förmåga att ta hand om sina barn. Resultat från olika studier visar att träning och utbildning kan förbättra föräldrarnas förmåga. En förutsättning för detta är dock att utbildningen är kontinuerlig såväl över tid som i kontakten med de professionella. Befintliga studier inkluderar oftare mödrar än fäder vilket innebär att det finns mer kunskap om mödrarna. Endast ett fåtal studier har undersökt fäderna och männen i kvinnornas liv.

Vidare finns det ett fåtal studier som fokuserar barnet i de familjer där föräldrarna har en utvecklingstörning. Den forskning som finns visar dock att barnen utgör en riskgrupp. Riskfaktorerna varierar delvis beroende på barnets ålder, men även beroende på om barnet har en utvecklingsstörning. Det rapporteras att det finns risk för att barnen försummas vilket kan ta sig uttryck i bristande omvårdnad, att barnen inte får näringsriktig kost, bristande säkerhet i hemmet och bristande hygien. Det finns även risk för att barnen utsätts för misshandel. Studier visar en ökad risk för att barn med utvecklingsstörning utsätts för misshandel och/eller sexuella övergrepp jämfört med andra barn, oavsett om föräldrarna har en utvecklingsstörning eller inte.

Det rapporteras att barn som har föräldrar med utvecklingsstörning kan ha svårigheter med språklig och kognitiv utveckling. Dessutom förekommer det att barnen har beteendeproblem och emotionella svårigheter och det är vanligare att barnen har psykiska svårigheter, framför allt depressioner, än andra barn. Förekomsten av svårigheter samt barnens utsatthet kan påverka barnens förmåga att senare i livet fungera som föräldrar.
Hur livet gestaltar sig för de barn som har vuxit upp med föräldrar som har en utvecklingstörning finns det liten kunskap om. I en dansk studie har forskarna funnit att kvinnorna lever ett mer utsatt liv än männen. I en studie från England finns det resultat som visar att de "vuxna barnen" som själva har en utvecklingsstörning har ett mer fungerande liv jämfört med de "vuxna barn" som är normalbegåvade.

Familjernas möten med det offentliga har studerats ur ett antal olika perspektiv, såväl barnens, föräldrarnas, närståendes som professionellas. I mötet mellan familj och professionella rapporteras att det är av stor betydelse att professionella är väl förtrogna med familjens behov, att de samordnar sina insatser, att det inte är för många inblandade och att man samverkar med familjen och tar hänsyn till familjemedlemmarnas behov.

När det gäller hälsobefrämjande faktorer i familjer där föräldrarna har en utvecklingsstörning finns det resultat som visar på betydelsen av såväl informella som formella nätverk. Forskare har funnit att det är olika karaktär på stödet från det formella respektive det informella nätverket. Det informella nätverket bidrar med praktisk hjälp i vardagslivet. Det formella nätverket bidrar med sakkunskap om viktiga funktioner i samhället, kunskap om interaktion mellan föräldrar och barn samt stöd för att föräldrarna skall utveckla sin kompetens.

Flertalet studier påpekar vikten av att kartlägga föräldrarnas och familjernas levnadsomständigheter för att kunna genomföra relevanta insatser. En rad olika mer eller mindre framgångsrika insatser som prövats i familjerna har rapporterats. Som framgångsfaktorer omnämns att stödet ska utformas efter barnens och föräldrarnas behov, att det är kontinuerligt och att det genomförs under en längre tid. För att insatser skall ge god effekt bör de vara anpassade till familjens omgivning, de bör vara prestationsbaserade och omfatta förebilder, praktisk feedback, beröm och belöningar. Forskare menar även att insatserna skall utformas så att det blir möjligt för föräldrar att utvecklas utifrån sina förutsättningar.

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

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

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

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

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

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

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

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

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

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

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

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

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

Socialstyrelsen (2020)

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

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

Takter Martina (2020)

Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
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oavsett ålder och diagnos hos den närstående.

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

Eklund, Rakel (2020)

Avhandling

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

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel (2020)

Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel (2020)

Abstract
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.

Care robot orientation: What, who and how? Potential users’ perceptions

Johansson-Pajala, Rose-Marie ; Thommes, Kirsten ; Hoppe, Julia A ; Tuisku, Outi ; Hennala, Lea ; Pekkarinen, Satu ; Melkas, Helinä ; Gustafsson, Christine (2020)

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

Challenges and Recommendations for the Developments of Information and Communication Technology Solutions for Informal Caregivers

Alhassan Yosri, Ibrahim Hassan (2020)

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

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

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

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

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

Demens - Anhörig På Liv och Död

Öhman Camilla (2020)

Camilla Öhmans gripande berättelse om sin mamma som insjuknade och avled i en avancerad form av demenssjukdom som heter Frontallobsdemens. Boken är ärligt skriven om egna livserfarenheter och beskriver dem olika händelseförlopp och stadier i sjukdomen, bemötandet inom vården samt ger anhöriga konkreta råd på vägen. Som läsare kommer du även få ta del av guldkornen i en familjs historia om en stark kärlek, hyllningen till livet, föräldraskap och om envisheten att fortsätta kämpa fastän livet visar oss sin hårdaste sida.
Denna ljudbok är skapad för att hjälpa andra anhöriga som lever nära en person som är sjuk i en demenssjukdom men även för dem som önskar få en bättre förståelse om sjukdomen som sådan. Det är viktigt att belysa hur dessa personer med denna form av sjukdom och dess anhöriga bemöts av samhället idag. Det är dags att våga börja prata öppet om dessa sjukdomar för att påverka situationen med att se till att de demenssjuka ska få en bra vård, men även att dem anhöriga ska erhålla rätt stöd då livet för dem dagligen består av olika utmaningar och andra påfrestningar som riskerar dem själva att bli sjuka.

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

Weber Falk, Megan (2020)

Avhandling

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

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

Weber hammar, Megan (2020)

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

Does long-term care coverage shape the impact of informal care-giving on quality of life? A difference-in-difference approach

van den Broek, Thijs Grundy, Emily (2020)

Abstract

The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life

Doing things together”: Towards a health promoting approach to couples’ relationships and everyday life in dementia.

Bielsten, Therése (2020)

Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple's everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on "Meaningfulness", "Empowering health promotion", "Normalization" and "Transitions and couplehood", represents the core findings of this thesis

Existentiell ensamhet hos sköra äldre personer: ett närståendeperspektiv.

Larsson, Helena (2020)

Avhandling
Svenska

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

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

Ganci, Maria (2020)

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

Glömskans spår - Demens från ett anhörigperspektiv

Larsson Mari (2020)

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

Första upplagan 2009, nytryck 2020

Hur påverkas vuxna barn av att ha en åldrande förälder?

Norén, Anna (2020)

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

Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home – study protocol for a web-based intervention

Alvariza, Anette ; Häger-Tibell, Louise ; Holm, Maja ; Steineck, Gunnar ; Kreicbergs, Ulrika (2020)

Abstract

Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)

Lawrence B. Sacco, Stefanie König, Hugo Westerlund, Loretta G. Platts (2020)

Abstract [en]
Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults' quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n = 5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults' quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.

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

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

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

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

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

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

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

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

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

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

Innan man vet

Elisabet O Klint (2020)

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

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

Jag. Har. Inga. Ord. Kvar.

Anna Bergfors (2020)

Denna prosasamling föddes ur mitt behov av tröst.

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

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

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

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

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

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

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

Piuva K, Brodin H (2020)

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

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

Nationellt kompetenscentrum anhöriga (2020)

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

Livet med lipödem: en utmaning var dag

Bräcke diakoni (2020)

Boken ingår som en del i ett Arvsfondsprojekt som genomförs av Bräcke Diakoni tillsammans med patientföreningarna SÖF, Svenska Ödemförbundet, LymfS, Lymf- och lipödemföreningen i Stockholms län samt NKA, Nationellt kompetenscentrum för anhöriga.

Förhoppningen med projektet är att behandling av lipödem ska bli erkänd som en rättighet när diagnosen är ställd för den enskilda kvinnan. Då behövs kunskap överallt i vården och den plattform som också framställs i projektet kommer att finnas kvar som en kunskapskälla både för personal som vill erbjuda behandling samt för anhöriga och kvinnor som själva har lipödem.

Measuring next of kin's experience of participation in the care of older people in nursing homes

Westergren, Albert, Behm, Lina, Lindhardt, Tove, Persson, Magnus, Ahlström, Gerd (2020)

Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. OBJECTIVE: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. METHODS: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. RESULTS: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances). CONCLUSION: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.

Min tur att berätta. Barns röster om att leva med våld

BRIS, Stadsmissioner (2020)

Flera tusen barn befinner sig varje år
på ett skyddat boende med sin mamma,
på flykt undan det livsfarliga våldet
hemma. Hur påverkas barnets liv av
våldet och av att tvingas bryta upp från
sin vardag? I den här rapporten lyfts
barns egna röster och erfarenheter,
tillsammans med aktuell kunskap.
Rapporten visar hur barns behov och
rättigheter många gånger blir sekundära
när barnet i praktiken blir medföljande
till sin mamma. Det blir tydligt att
rättssäkerheten måste stärkas för barn
som utsätts för våld i hemmet.

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

Inger Benkel (2020)

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

När mammor dör: Kvinnor om att mista sin mor

Antologi (2020)

Tillsammans med 30 andra kvinnor, i olika åldrar, har jag skrivit om hur det är att förlora en mamma. En viktig bok som jag är stolt att vara en del av. "När mammor dör växer det sly överallt" skriver Göran Tunström. Men det behöver inte bli ensamt. Det vill vi förmedla. För mig är det även en hyllning till min mamma Kerstin

Parents with psychosis and their children: Experiences of beardslee’s intervention

Strand, Jennifer; Meyersson, Niklas (2020)

Abstract
To meet children's needs for information and support when a parent has a mental illness, Beardslee's family intervention was implemented in Swedish psychosis care. The present study aimed to gain understanding of how parents' with psychosis and their children experienced having taken part in Beardslee's family intervention. The study followed COREQ guidelines. Semi‐structured interviews were conducted with 15 participants (8 parents with psychosis and 7 children) who had participated in the family intervention. Data were analysed with content analysis. Results showed that the parents perceived that the intervention had contributed to improved illness knowledge, communication, and understanding in the family. They also appreciated receiving support in finding an age‐adapted way of explaining their illness, but asked for structured follow‐ups in order to maintain communication. However, comparing parents' and children's interviews led to discrepancies in perceptions of the overall benefits of the intervention. In conclusion, parents with psychosis need continual support in talking to their children about their illness. Furthermore, discrepancies between parents' and children's interviews show the importance of multi‐perspective data collection when studying intervention effects

Välkommen till helvetet

Nanna Helsén, Stina Helsén (2020)

Det hade gått så snabbt, så oerhört snabbt. Innan jag ens hade hunnit reflektera över det hade jag tappat de där första kilona. Och all kontroll. Och plötsligt rasade allt.?

Förloppet är hastigt när 15-åriga Nanna insjuknar i anorexi, på bara några veckor rasar hon i vikt och läggs in för akut vård. Hennes tillstånd är livshotande och livet vänds uppochner för hennes familj, föräldrarna ständigt vid hennes sida. Nanna plågas av grav ångest och är helt i sjukdomens våld. Hennes enda fokus är att låta bli att äta, sluta existera.

Hemma är 13-åriga lillasystern Stina ledsen och arg. Det som tidigare var en nära syskonrelation upphör tvärt. Hon får plötsligt mer frihet än hon önskar och kämpar för att ha en vardag när allt handlar om sjukdom. Stina har heller ingen lust att spela den lättsamma dottern precis när det råkar passa föräldrarna.

Nanna och Stina, idag vuxna, berättar öppet och rättframt om ett år med anorexin och ångesten ur sina olika perspektiv. Sjukdomen påverkar i hög grad anhöriga. Välkommen till helvetet är en drabbande skildring av just anorexi, men mycket är aktuellt även för andra typer av psykisk sjukdom.

Systrarna Nanna Helsén, född 1989, och Stina Helsén, född 1991, är uppvuxna i Stockholm. Välkommen till helvetet är deras första bok. Till vardags arbetar Nanna med affärsutveckling och Stina är lärare.

Family members' expressions of dignity in palliative care: a qualitative study

Anna Sandgren, Lena Axelsson, Tove Bylund-Grenklo, Eva Benzein (2020)

Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

"Childlessness at the end of life: evidence from rural Wales."

Wenger, C. G. (2009)

ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.

Activitybased intervention for multiple-disabled visually impaired people

Tellevik JM, Elmerskog B. (2009)

The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.

Do Young Carers Deserve Justice? Young Caring in the Context of Illness

Sahoo, R., & Suar, D. (2009)

Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice

Stover, C. S., Meadows, A. L., & Kaufman, J. (2009)

The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].

Loss and grief in patients with Schizophrenia: Onliving in another world

Mauritz M, Van Meijel B. (2009)

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study

Nordström, M., Dunér, E., Olin, A., & Wijk, H. (2009)

BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.

Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis

Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I. (2009)

BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.

AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.

METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.

RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.

CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.

Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors

Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A. (2009)

Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.

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

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

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

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

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

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

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

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

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

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

Högberg, Anette (2009)

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

A conceptual framework of outcomes for caregivers of assistive technology users

Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F. (2009)

Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.

A metaanalysis of behavioral treatments for attention-deficit/hyperactivity disorder

Fabiano, G. A., Pelham, W. E., Coles, E. K., Gnagy, E. M., Chronis-Tuscano, A., & O’Connor, B. C. (2009)

There is currently controversy regarding the need for and the effectiveness of behavior modification for children with attention-deficit hyperactivity disorder (ADHD) despite years of study and multiple investigations reporting beneficial effects of the intervention. A meta-analysis was conducted by identifying relevant behavioral treatment studies in the literature. One-hundred seventy-four studies of behavioral treatment were identified from 114 individual papers that were appropriate for the meta-analysis. Effect sizes varied by study design but not generally by other study characteristics, such as the demographic variables of the participants in the studies. Overall unweighted effect sizes in between group studies (.83), pre-post studies (.70), within group studies (2.64), and single subject studies (3.78) indicated that behavioral treatments are highly effective. Based on these results, there is strong and consistent evidence that behavioral treatments are effective for treating ADHD.

A model of consequences of dementia caregivers' stress process: influence on behavioral symptoms of dementia and caregivers' behavior-related reactions

Campbell, J. (2009)

Abstract
The purpose of this article is to extend the Schultz and Martire Caregiver Stress-Health Model by explaining consequences of the stress process beyond those related to health in dementia caregivers, including consequences for caregivers and the dyadic unit, and to highlight the dynamic that exists between caregivers' stress, behavioral symptoms of dementia, and behavior-related reactions of caregivers. The relevant literature is reviewed, establishing the pervasive effects of caregivers' stress within a care dyad. Primary informal caregivers play a predominant role in managing environmental stimuli and providing for needs, in particular adjusting their own approaches and demeanor to enhance the care environment. Thus, behavioral symptoms of dementia and the behavior-related reactions of caregivers are conceptualized as a dyadic consequence of the caregivers' stress process. This model presents an extended view of the consequences of caregivers' stress and provides a more holistic, dyadic approach to the issues these vulnerable dyads face. Behavioral symptoms of dementia and behavior-related reactions are seen as amenable to caregiver- or dyad-directed interventions that target stress reduction. This conceptualization may provide support for research, clinical, or policy initiatives that include caregiver-directed or dyadic interventions for these important behavior-related outcomes

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

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

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

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

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

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

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

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

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

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

Andersson, C. (2009)

doktorsavhandling

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

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

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

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

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

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

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

Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet

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

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

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

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

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

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

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

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

Anhörigstöd i Orsa kommun

Hassis, L. (2009)

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

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

Lökk, J. (2009)

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

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

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

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

Att vara syskon till ett barn eller ungdom med cancersjukdom – tankar, behov, problem och stöd

Nolbris, M. (2009)

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.

Attitudes toward decision making and aging, and preparation for future care needs

Fowler, C., & Fisher, C. L. (2009)

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.

Attitudes toward decision making and aging, and preparation for future care needs.

Fowler, C., & Fisher, C. L. (2009)

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.

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

Socialstyrelsen (2009)

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

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

Socialstyrelsen (2009)

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

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

Killén, Kari (2009)

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

Barnperspektiv i LSS-handläggningen

Socialstyrelsen (2009)

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

Bygga och använda språk : Bliss i AKK

Heister Trygg, Boel (2009)

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

Caregiver -- Who Copes How?

Chappell, N. L., & Dujela, C. (2009)

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

Caregiving and volunteering among older people in Sweden - prevalences and profiles

Jegermalm, M., & Jeppsson Grassman, E. (2009)

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

Caregiving and Volunteering among Older People in Sweden − Prevalence and Profiles

Jegermalm, M. and E. Jeppsson Grassman (2009)

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

Challenges in conceptualizing social support

Vangelisti, L. Anita (2009)

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

Childhood bereavement and peer support: epidemiology, identification of evaluation constructs, and the promotion of resilience

Hulsey, E.G. (2009)

Akad. Avh.

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

Couples' provision of informal care for parents and parents-in-law: far from sharing equally?

Henz, U (2009)

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.

De kan, de vill och de orkar, men …: studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Gustafsson Wallengren, Catarina (2009)

Akademisk avhandling nr 17

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".

De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Wallengren Gustafsson, C. (2009)

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

Depression care need among low-income older adults: views from aging service providers and family caregiver

Choi NG, Kimbell K. (2009)

This study reports findings from focus group discussions with aging service providers and family caregivers about low-income ambulatory or homebound older adults' depressive symptoms and barriers to seeking treatment. It also reports the participants' suggestions about interventions for depression that can be integrated into existing aging service settings or implemented in older adults' homes, as well as the type of training the aging service providers need if they are to provide services for depression. Participants identified social isolation, loneliness, and loss and grief as major correlates of depression in older adults. Barriers to seeking treatment included older adults' denial of or lack of understanding about depression, a sense of stigma, financial worries, and lack of mobility. Suggested depression treatments included brief cognitive behavioral interventions, friendly visitors, and physical exercise. Bachelor's-level service providers expressed their need and desire for training in mental health assessment and brief psychotherapy.

Depression in Parents, Parenting and Children

National Research Council and Institute of Medicin. (2009)

Research Challenges in Confronting Depression in Parents

The challenges for researchers, clinicians, and policy makers in attempting to address the problems associated with the care of depression in parents include the integration of knowledge, the application of a developmental framework, conceptualizing the problems in a two-generation nature, and acknowledging the presence of the constellation of risk factors, context, and correlates associated with depression.
Issues Considered in Searching the Literature

To fully understand the linkages among depression, parenting, and the child health outcomes, researchers should consider issues surrounding (but not limited to) the definition and measurement of depression and parenting, the etiology of depression, timing and use of appropriate screening interventions, the process of risk and resilience in children of depressed parents, correlates of depression, and developmental processes and time points.
Challenges in Evaluating the Literature

Researchers face multiple methodological challenges studying depression in parents and its effects on parenting practices and child health outcomes that need to be addressed in order to provide recommendations for the development of future research, interventions, and policy—including conceptual frameworks, sampling designs, data analysis, and integration of research findings across literatures.
In this chapter, the committee describes their approach to the literature on the effects of parental depression on parenting practices and child outcomes and its evaluation. The chapter is organized in three sections, relating to the challenges that researchers face in confronting the problem of parental depression, the wide range of issues that we considered relevant, and standards of evidence and methodological issues that are important to keep in mind in reading this report. Some topics are addressed in more than one section, but they are focused on different aspects of the topic. For example, in the section on research challenges, we show that a conceptual framework relating to the effects of parental depression on families should be guided by a developmental psychopathology perspective. Later, in the section on research standards, we mention what the literature has shown in this regard and that research relating to any psychopathology should address questions "across generations and across time" (Hinshaw, 2008).

The type of evidence and criteria used to judge the importance of that evidence vary from area to area. This chapter does not attempt to explicitly summarize the specific criteria used for the evaluation of the evidence in each area, but instead offers a guideline of the general areas of interest and inquiry that the committee used when the committee searched and evaluated the literature. For example, studies of screening for parental depression are different from studies of treatment and intervention, and these are different from studies of prevention programs. These are also different from inquiries relating to changes in policy at the macro level or the available studies on the effects of parental depression. Thus, in this overview on standards of evidence and methodology, we present general guidelines that the reader should apply when appropriate in the subsequent chapters. Recommendations based on the evaluation of the evidence in each area are presented.

Designing online support for families living with depression

Stjernswärd, S. (2009)

Families living with mental illness experience an added burden and may experience such psychological distress that they require therapeutic intervention. The Internet is used as a daily tool by a growing share of the population worldwide, including for health related matters. Its potential as a health care tool, including advantages and drawbacks, should be explored. The overall aim of the present thesis was to explore the relatives' experiences of living close to a person with depression and the Internet's potential to address their needs. Explorative qualitative research has been used to map the e-health field in relation to depression, to explore what the Internet offers the families living with depression, as well as the relatives' experiences of living with a person with depression. An iterative design process was used in the development of a digitally based tool aimed at supporting the relatives in their daily life with depression. Users' experiences of the tool were explored using qualitative explorative research. A vast array of different organizations and initiatives are represented within the e-health field. However, initiatives that are targeted and tailor-made for families living with depression are scarce. Research in the e-health field with focus on depression illuminates health seekers' and online community users' profiles, effects of online cognitive behavioral therapy (CBT), and a number of strengths (i.e. accessibility) and weaknesses (i.e. reliability) related to the Internet as a health care tool. Living close to a person with depression can strongly affect the private, social and professional areas of the relatives' daily life. A growing feeling of not living one's own life may arise, due to the difficulties of balancing relationships, a process of adaptation and re-evaluation of life circumstances, and a struggle to act as advocate and voice for the person with depression within the health care system and society. Relatives often come in contact with health professionals on 12 behalf of their ill kin and need information and support; needs that are rarely addressed by the health care system. A digitally based tool aimed at supporting the relatives in their daily life with depression was developed using an iterative design process. The tool's development was carried out in close cooperation with users with the help of focus groups and prototypes. Motivations and obstacles to using online self-help tools were illuminated. Privacy stood out as an important factor when developing online tools. The study resulted in a website, www.sommarregn.se, entailing an online diary (private and encrypted), including scales, and a forum (members only access), including an e-mail function. Users' experiences of the website over a 10 weeks test period were illuminated. The diary and forum appeared to fill a number of valuable functions, although a further development of the tool may enhance its usability, which was good. The tool promoted communication with the self and others. The Internet as a technology offered a number of advantages, such as convenience of use and perceived anonymity, and disadvantages, such as qualitative issues. The relatives' needs ought to be addressed in order to support them in a daily life with depression. Empowered relatives are in a better position to help their ill kin and support may prevent ill health in the relatives themselves, and subsequently additional costs to society. Health care professionals meet patients that are also online health seekers. Professionals must be aware of the advantages and drawbacks of e-health when meeting patients. In an economically pressured society, alternative support options have to be explored in order to address the needs of target groups at risk.

Developmental effects of exposure to Intimate Partner Violence in early childhood: A review of the literature

Carpenter, G. L., & Stacks, A. M. (2009)

Intimate Partner Violence (IPV) is a prevalent social problem in the United States and women of childbearing age are the most likely victims. The young children born to these women are impacted, however, women are not routinely asked about IPV even when there is evidence that their child has been abused. To highlight the importance of routinely screening for IPV in child welfare and other social service agencies this article reviews typical social-emotional development and physiological/neurological development in early childhood and the impact that IPV and trauma have on these domains of development. Early intervention with young children and caregivers living with IPV provides a significant buffer to the negative effects that witnessing IPV have on children's development and their relationships with caregivers.

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

Whiteneck G, Dijkers MP. (2009)

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

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

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

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

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

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

Design.  Prospective cross-sectional study.

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

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

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

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

Diskriminerad, trakasserad och kränkt

Skolverket (2009)

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

Does parent management training for children with externalizing problem behavior in routine care result in clinically significant changes?

Hautmann C, Stein P, Hanisch C, Eichelberger I, Plück J, Walter D, et al. (2009)

The clinical significance of a parent management training that is part of the Prevention Program for Externalizing Problem Behavior (PEP) was assessed in an effectiveness trial. Parent management training was offered under routine care conditions in a setting where a high proportion of children were expected to show clinically relevant symptoms of externalizing problem behavior. At the beginning of the study, 32.6% to 60.7% of children were classified as clinical cases (dysfunctional) on three outcome measures of child behavior problems. Three months after treatment, 24.8% to 60.4% of children were judged to be recovered. Parent management training can result in clinically significant changes in children with externalizing behavior problems.

Efficacy and safety of atomoxetine as add-on to psychoeducation in the treatment of attention deficit/hyperactivity disorder: a randomized, double-blind, placebo-controlled study in stimulant-naïve Swedish children and adolescents

Svanborg P, Thernlund G, Gustafsson PA, Hägglöf B, Poole L, Kadesjö B, et al. (2009)

OBJECTIVE: The primary objective of this study was to assess the impact of atomoxetine in combination with psychoeducation, compared with placebo and psychoeducation, on health-related quality of life (HRQL) in Swedish stimulant-naïve pediatric patients with attention deficit/hyperactivity disorder (ADHD). HRQL results will be presented elsewhere. Here, psychoeducation as well as efficacy and safety of the treatment are described. PATIENTS AND METHODS: A total of 99 pediatric ADHD patients were randomized to a 10-week double-blind treatment with atomoxetine (49 patients) or placebo (50 patients). Parents of all patients received four sessions of psychoeducation. Atomoxetine was dosed up to approximately 1.2 mg/kg day (< or = 70 kg) or 80 mg/day (> 70 kg). Improvement of ADHD symptoms was evaluated using the ADHD rating scale (ADHD-RS) and clinical global impression (CGI) rating scales. Safety was assessed based on adverse events (AEs). RESULTS: The study population was predominantly male (80.8%) and diagnosed with the combined ADHD subtype (77.8%). The least square mean (lsmean) change from baseline to endpoint in total ADHD-RS score was -19.0 for atomoxetine patients and -6.3 for placebo patients, resulting in an effect size (ES) of 1.3 at endpoint. Treatment response (reduction in ADHD-RS score of > or = 25 or > or = 40%) was achieved in 71.4 or 63.3% of atomoxetine patients and 28.6 or 14.3% of placebo patients. The lsmean change from baseline to endpoint in CGI-Severity was -1.8 in the atomoxetine group compared with -0.3 in the placebo group. The difference between treatments in CGI-Improvement at endpoint was -1.4 in favor of atomoxetine. No serious AEs occurred. The safety profile of atomoxetine was in line with the current label. CONCLUSIONS: Atomoxetine combined with psychoeducation was superior to placebo and psychoeducation in ADHD core symptoms improvement. The large ES might be a result of including stimulant-naïve patients only, but also may indicate a positive interaction between atomoxetine treatment and psychoeducation, possibly by increased compliance.

Efficacy of a camp-based intervention for childhood traumatic grief

McClatchey, I.S., Vonk, E.M. & Palardy, G. (2009)

Objective: This study examined the efficacy of a short-term, camp-based, trauma-focused grief intervention in reducing traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children. Method: For this nonequivalent comparison group study, 100 children were split into two groups, with one group serving as the immediate treatment group and the second group serving as the delayed treatment group. Results: The results were analyzed using chi-square, independent samples t tests, multiple and logistic regression and showed this short-term intervention to be followed by reduced traumatic grief and posttraumatic stress disorder symptoms. Conclusions: The results are discussed in relation to current research on and practice with bereaved children as well as implications for future research.

Emotional and cardiovascular sensitization to daily stress following childhood parental loss

Luecken, L., Kraft, A., Appelhans, B., & Enders, C. (2009)

Abstract
Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

Emotional and cardiovascular sensitization to daily stress following childhood parental loss

Luecken, L., Kraft, A., Appelhans, B., & Enders, C. (2009)

Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

Estimating the ‘impact’ of out-of-home placement on child well-being. Approaching the problem of selection bias

Berger L, Bruch S, Johnson E, James S & Rubin D (2009)

This study used data on 2,453 children age 4 to 17 from the National Survey of Child and Adolescent Well-Being and 5 analytic methods that adjust for selection factors to estimate the impact of out-of-home placement on children's cognitive skills and behavior problems. Methods included ordinary least squares (OLS) regressions and residualized change, simple change, difference-in-difference, and fixed effects models. Models were estimated using the full sample and a matched sample generated by propensity scoring. Although results from the unmatched OLS and residualized change models suggested that out-of-home placement is associated with increased child behavior problems, estimates from models that more rigorously adjust for selection bias indicated that placement has little effect on children's cognitive skills or behavior problems.

Ett ögonblick i sänder - mötet vid akut förvirringstillstånd, äldre patienters, närståendes och professionella vårdares perspektiv

Stenwall, E. (2009)

One older patient out of ten develops an acute confusional state (ACS) during their stay at an emergency care hospital, but there is little knowledge about encountering patients in an ACS. The overall aim of this thesis was to describe the complexity within the encounter between older patients in an ACS and relatives or professional carers, to gain a deeper understanding and increased knowledge about what takes place in the encounter and how this is experienced. The thesis is grounded in a qualitative research approach and a lifeworld perspective. Four empirical studies have been conducted at two geriatric wards at an emergency care hospital. The studies have been examined and approved by the Regional Board of Research Ethics. The aim of study I, II and III was to increase knowledge about how the encounter is experienced in retrospect, by interviewing professional carers (I), relatives (II) and patients who had suffered an ACS (III) about their experiences of encounters during the period of the patient being in an ACS. The fourth study (IV) aimed at increasing knowledge about the encounter from the viewpoint of the patient by focusing on dialogue and actions in the framework of the encounter with professional carers and relatives using a case study. A phenomenological approach was used for gathering and analysing data in studies I and II. In studies III and IV a latent content analysis was used for data analysis.
The results from study I show that professional carers experience the encounter with the patient as an encounter with a person, whose actions and words are unfamiliar and give rise to a lack of immediate trust. The encounter is experienced as unpredictable and the professional carers experience a need to always be on guard and use themselves as tools to reach out to, understand and create contact with the patient in the encounter. Relatives (II) experience the encounter with the patient as encountering a familiar person who has rapidly become unfamiliar, experiencing insecurity in how the patient in turn experiences the encounter and will react to the relative s words and actions. The relatives have to face this new situation with feelings of insecurity and sadness, find themselves exposed and the whole situation laborious. The patients (III) experience the encounter with professional carers and relatives as representing difficulties in connecting with and understanding the other. The patients experience difficulties in understanding what is happening and search for answers within themselves and from others. But the patients also experience a mutual understanding and trust between themselves and the other participants. The patients in the fourth study (IV) rely on professional carers and relatives to understand what is happening and why, to receive help in the encounter and are acknowledged with both understanding and suspicion. In the encounter each tries to convince the other about what is right, which reality is the true one, and there are often misunderstandings in time, place and foci.
The conclusion of the studies (I-IV) is that the professional carers, relatives and patients experience the encounter as something that places them in a vulnerable and arduous situation. In the encounter the feelings of lack of understanding, lack of trust and insecurity are mutual, but there is also a mutual wish to reach out to and understand the other. The character of the encounter changes frequently and rapidly and it is as if it takes place a split second at a time.

Factors discriminating among profiles of resilience and psychopathology in children exposed to intimate partner violence (IPV)

Graham-Bermann, S. A., Gruber, G., Howell, K. H., & Girz, L. (2009)

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.

Factors related to Alcohol and Drug Consumption in Swedish Widows.

Grimby A, Johansson ÅK. (2009)

The use of alcohol and medications among Swedish widows was analyzed in relation to various background variables. In Total, 1053 widows (640 widows younger than 65 years and 413 widows older than 65 years) answered the questionnaire. Many reported increased fatigue and sleeping problems. Around one-third of the widows reported drinking alcohol for relief of grief and inadequate support. Association existed between grief and increased intake of sedatives and sleeping pills, and between grief and drinking for relief of grief, as well as increase in intake of sedatives. In widows older than 65 years, perception of bad health, negative outlook for the future, and insufficient support seemed to increase the risk of more sedatives and sleeping pills. Negative outlook for the future also tended to lead to a heightened risk for increased intake of alcohol. There seems to be remaining health problems a long time after bereavement, and counseling may be needed especially when drugs and alcohol are extensively used.

Facts and Figures on Long-Term Care – Europe and North America

Huber, M (2009)

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?

Familjeliv

Johansson T. (2009)

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

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

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

FIB-projektet i Uppsala län. Föräldrar med intellektuella begränsningar. Kartläggning av målgruppen 2005-2008

Pistol, Sven-Erik (2009)

FIB-projektet är ett 3-årigt samverkansprojekt i Uppsala län som syftar till att
utveckla stöd till barn och deras föräldrar i familjer där någon av föräldrarna har
en utvecklingsstörning eller andra kognitiva svårigheter, som kan förekomma
vid t.ex. svagbegåvning eller neuropsykiatriska funktionsnedsättningar.
För att kunna bedöma omfattningen av stödbehov och planera utifrån det, är det
viktigt att veta hur många familjer det finns som tillhör målgruppen och hur
många barn de har. En del i projektet har därför varit att göra en kartläggning av
målgruppens storlek i Uppsala län.
En bred förankring på olika nivåer i Landstingets och kommunernas
organisationer har krävts för att kunna genomföra kartläggningen.
Olika grupper av professionella, som möter familjerna i sin yrkesutövning, har
gjort bedömningen av vilka som tillhör målgruppen och som är i behov av
anpassat stöd.
Resultatet av kartläggningen bekräftar det som yrkesverksamma i olika
sammanhang omtalat, nämligen att det finns ett stort antal barn och föräldrar
med behov av stöd på grund av kognitiva svårigheter hos någon av föräldrarna.
Totalt handlar det om 602 familjer med sammanlagt 1092 barn som bedöms vara
i behov av stöd på grund av föräldrarnas kognitiva svårigheter. Mer än 50 % av
barnen har egna kognitiva svårigheter.
Den variation vi kan konstatera mellan länets olika kommuner kan bero på
befolkningsstruktur, förekomst av särskola, tidigare befintliga institutioner och
tillgång på bostäder och sysselsättning.
Kartläggningen ger ett underlag för planeringen av insatser till familjerna. Den
visar hur många familjer och barn det finns och kan hos olika verksamheter
ställas i relation till de riktade insatser som görs. Kartläggningen ger också ett
underlag för ökad samverkan och samplanering mellan olika samhällsinstanser
då många professionella arbetar med samma familjer utan varandras kännedom.

Folkhälsorapport

Socialstyrelsen (2009)

Folkhälsorapport 2009 visar bland annat att risken att dö i hjärtinfarkt och stroke har minskat väsentligt, medan dödligheten i bröstcancer däremot har minskat endast marginellt, och dödligheten i lungcancer fortfarande ökar bland kvinnor, medan den sjunker bland män. Psykisk ohälsa är vanligt hos yngre kvinnor; självmordsförsöken ökar.

Foster children: a longitudinal study of placements and family relationships

Andersson, G. (2009)

Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.

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

Grimby, A., & Johansson, Å. K. (2009)

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

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

Rehnman, Jenny & Andrée Löfholm, Cecilia (2009)

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

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

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

Kategorisering av barn i förskoleåldern – styrning och administrativa processer

Lutz, Kristian (2009)

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

Kort-tids-boende. En kameleont i äldreomsorgen

Westlund, Peter (2009)

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

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

Kvinnors och mäns återhämtning från psykisk ohälsa

Schön, Ulla-Karin (2009)

Rapport i Socialt arbete 130. Doktorsavhandling

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

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

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

Lenas mamma får en depression

Alphonce Elisabet (2009)

text och illustrationer: Elisabet Alphonce

barn/ungdom

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

Litet syskon: Om att vara liten och ha en syster eller bror med sjukdom eller funktionsnedsättning

Renlund, Christina (2009)

I boken Litet syskon - om att vara liten och ha en syster eller bror med sjukdom eller funktionsnedsättning är det barnen själva som berättar, det är deras röster vi hör. Barnen är mellan två och sex år och har syskon med autism, cancer, cystisk fibros, epilepsi, hjärtfel, muskelsjukdom, rörelsehinder, synskada och utvecklingsstörning.

I boken visar Christina Renlund många sätt som barn kan uttrycka sig på, många konkreta verktyg som är användbara för att hjälpa barn att berätta. Och barn behöver prata - i första hand i sin familj men det behöver även finnas konkreta arbetssätt för hur man pratar med barn om sjukdom/funktionsnedsättning inom förskola och vård.

Christina Renlund är leg. psykolog och psykoterapeut med mångårig erfarenhet av arbete med barn och unga med kronisk sjukdom/funktionsnedsättning och deras familjer. Hon har tidigare skrivit boken Doktorn kunde inte riktigt laga mig - barn om sjukdom och funktionshinder och om hur vi kan hjälpa.

Major Depression and Family Life – The family´s way of living with a long-term illness.

Hedman Ahlström, B. (2009)

The overall aim was to explore the family's experiences of major depression and the meaning of the illness for family life, for the ill person, the partner and the children. This thesis has a life-world perspective and is a qualitative explorative study using narrative interviews with families with parents who were identified as having major depression MD (Paper I-IV). A case study with a single family (n=3) was performed with a focus on describing what happens and how to manage the illness in a family (I). Group interviews with 7 families (n=18) were conducted to describe the ways of living with MD in families (II). Further, parents (n=8), who were identified as suffering from major depression, representing 8 families were interviewed to elucidate the meaning of depression in family life from the viewpoint of the ill parent (III). Interviews were also conducted with children and young adults (n=8), aged from 6 to 26 years, representing 6 families to elucidate the meaning of a parent's major depression in family life from the children's perspective (IV). The interview texts were analysed using qualitative methods; thematic content analysis (I-II) and phenomenological hermeneutic analysis (III-IV). The thesis shows that family members had different views and ways of interpreting and managing the family's situation when the mother was suffering from major depression (I).The families faced demanding conditions in the presence of illness which they tried to manage together. The families' situation (fatigue, loss of energy and being burdened with guilt) seemed to bring these families into stressful life situations (II). Depressed parents' suffering and dignity were revealed as being simultaneously present and complicating family life. Dignity has to be repeatedly restored for oneself and the family, and the family's dignity has to be restored in front of other outside the family circle (III). Children's sense of responsibility and loneliness were elucidated. The children's responsibility includes their striving for reciprocity, and in their loneliness is the children's yearning for reciprocity. Children compensate with a sense of responsibility for an ill parent in family life and for their lack of health. Children's family life shifts between responsibility and loneliness as they wait for reciprocity in family life to return to normal (IV). This thesis shows how a study using qualitative methods makes it possible for family members together and individually to talk about major depression as illness that is an intruder in their family life. The thesis elucidates how the depression complicates and involves the family member's life as well as the ill person's family life. All family members have their own life-world and try to balance everyday life from an individual perspective, which overshadows that managing the illness is a concern for the whole family.

Measurement of time processing ability and daily time management in children with disabilities

Janeslätt G, Granlund M. (2009)

Background

Improvement is needed in methods for planning and evaluating interventions designed to facilitate daily time management for children with intellectual disability, Asperger syndrome, or other developmental disorders.

Objectives

The aim of this study was to empirically investigate the hypothesized relation between children's time processing ability (TPA), daily time management, and self-rated autonomy. Such a relationship between daily time management and TPA may support the idea that TPA is important for daily time management and that children with difficulties in TPA might benefit from intervention aimed at improving daily time management.

Methods

Participants were children aged 6 to 11 years with dysfunctions such as attention-deficit/hyperactivity disorder, autism, or physical or intellectual disabilities (N = 118). TPA was measured with the instrument KaTid. All data were transformed to interval measures using applications of Rasch models and then further analysed with correlation and regression analysis.

Results

The results demonstrate a moderate significant relation between the parents' ratings of daily time management and TPA of the children, and between the self-rating of autonomy and TPA. There was also a significant relation between self-ratings of autonomy and the parents' rating of the children's daily time management. Parents' ratings of their children's daily time management explain 25% of the variation in TPA, age of the children explains 22%, while the child's self-rating of autonomy can explain 9% of the variation in TPA. The three variables together explain 38% of the variation in TPA. The results indicate the viability of the instrument for assessing TPA also in children with disabilities and that the ability measured by KaTid is relevant for daily time management.

Conclusions

TPA seems to be a factor for children's daily time management that needs to be taken into consideration when planning and evaluating interventions designed to facilitate everyday functioning for children with cognitive impairments. The findings add to the increasing knowledge base about children with time processing difficulties and contribute to better methods aimed at improving these children's daily time management. Further research is needed to examine if there are differences in TPA related to specific diagnosis or other child characteristics.

Meta-analysis of the effectiveness of individual intervention in the controlled multisensory environment (Snoezelen®) for individuals with intellectual disability

Lotan, M., & Gold, C. (2009)

BACKGROUND:
The Snoezelen is a multisensory intervention approach that has been implemented with various populations. Due to an almost complete absence of rigorous research in this field, the confirmation of this approach as an effective therapeutic intervention is warranted.
METHOD:
To evaluate the therapeutic influence of the Snoezelen approach. Twenty-eight relevant articles relating to individual (one-to-one) Snoezelen intervention with individuals with intellectual and developmental disabilities (IDD) were reviewed. A meta-analysis regarding the significance of the reduction of maladaptive behaviour and the enhancement of adaptive behaviour was implemented. An analysis of standardised mean differences was used through the use of fixed effect models.
RESULTS:
The primary finding was that the Snoezelen approach, when applied as an individual intervention for individuals with IDD, enabled significant and large effect size in adaptive behaviours, with generalisation to the participants' daily life.
CONCLUSIONS:
Weaknesses in the examined research methodologies, the heterogeneity between research designs, the small number of available research projects, and the small number of participants in each research project, prevent a confirmation of this method as a valid therapeutic intervention at this time.

Migration och Folkhälsa. Kapitel 9 i ”Folkhälsorapport”.

Hjern A. (2009)

I en alltmer globaliserad värld får
fler möjlighet att bosätta sig i ett annat land
än det de föddes i. Som ett resultat av detta ökar andelen utlandsfödda i de flesta höginkomstländer, så även i Sverige. Den 31 december år 2006 hade 17
procent av den svenska befolkningen utländsk bakgrund, dvs. var antingen
född i något annat land än Sverige (13 procent) eller hade två utlandsfödda
föräldrar (4 procent). Av dessa var 52 000 utlandsadopterade. Därtill kommer
asylsökande och andra migranter som saknar uppehållstillstånd, som inte finns med i befolkningsstatistiken.
Många utlandsfödda har
flyttat från länder där risken att smittas av vissa
svåra och långvariga infektioner är betydligt större än i Sverige. De viktigaste
av dessa smittämnen är hepatit B och C, tuberkulos och hiv.
Migranterna tar med sig sin livsstil till det nya landet, t ex kost- , tobaksoch
alkoholvanor. Mötet med det nya landets kultur leder till att livsstilen
förändras, men lång tid efter invandringen kan in
flytande av ursprungslandets
livsstil ofta spåras i invandrares sjukdomsmönster. Så har t.ex. män med
ursprung i Medelhavsområdet en högre risk att drabbas av tobaksrelaterad
sjuklighet, som lungcancer jämfört med genomsnittsbefolkningen i Sverige,
men samtidigt har de en lägre risk att drabbas av alkoholrelaterad sjuklighet,
som levercirrhos.
Många betydande folkhälsoproblem orsakas av miljöfaktorer i samspel med
en medfödd sårbarhet, t.ex. allergiska sjukdomar och diabetes. Förekomsten
av de genetiska faktorer som orsakar denna sårbarhet skiljer sig mellan olika
befolkningar i världen och fortsätter att påverka risken för dessa sjukdomar
hos migranter även i det nya landet .
Flyktingen har ett annat utgångsläge än den som
flyttar till ett annat land
för att arbeta eller för att bilda familj. Personer som
flyr från sitt hemland har
nästan alltid levt en tid under stor stress innan de
flyr. Själva
flykten är ofta
omgärdad av umbäranden och hot, och många familjer splittras under långa
perioder. Efter ankomsten till det nya landet väntar en tid av ovisshet under
asylprocessen innan det nya livet kan ta sin början. Detta leder sammantaget
till att psykisk ohälsa är ett större problem hos nyanlända
flyktingar än hos
andra grupper av migranter,

Min stroke

Taylor Bolte, Jill (2009)

På morgonen den 10 december 1996 förändrades Jill Bolte Taylors liv totalt. Den 37-åriga hjärnforskaren drabbades av en kraftig stroke då ett blodkärl brast i vänstra halvan av hjärnan. Inom loppet av några timmar försvann förmågan att tala, läsa, skriva, gå och hennes minne var i det närmaste helt utraderat.

Tiden som följde blev en berg- och dalbana mellan två verkligheter: den euforiska känslan från höger hjärnhalva som styr känslor och kreativitet, och de logiska rationella tankarna från vänstra halvan som talade om för Jill att hon var sjuk och fick henne att söka hjälp i tid.

Det tog åtta år för Jill Bolte Taylor att tillfriskna helt och hållet. Tack vare en otrolig envishet, sin kunskap om hur den mänskliga hjärnan fungerar och inte minst med stor hjälp av sin fantastiska mamma lyckades hon få tillbaka det liv hon en gång hade. Idag anser Jill att stroken var det bästa som kunde hända henne. Genom att tvingas använda sin högra hjärnhalva insåg hon att vi människor kan tillgodogöra oss de känslor av frid och välbehag som den vänstra halvan gör sitt bästa för att trycka ner.

Min stroke tar läsaren med på en fascinerande resa in i den mänskliga hjärnan. Det är både en värdefull hjälp för alla som drabbats av någon form av hjärnskada och ett känslosamt vittnesmål om att djup inre frid är möjligt att uppnå för alla människor, vid alla tillfällen. Boken har i flera veckor legat på topp 10 på New York Times bästsäljarlista för faktaböcker.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research

Santini, S. Socci, M. D’Amen, B Di Rosa, M Casu, G. Hlebec, V. Lewis, F. Leu, A. Hoefman, R. Brolin, R. Magnusson; L. Hanson, E. (2020)

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Reflections A Story of Hope, Healing, Facing Fears, and Finding Purpose

Hobbs Brian, Hobbs Fia (2020)

Gives hope and inspiration to live a full life despite the adversity of cancer Teaches readers how to overcome fears Shows the importance of finding one's passion and purpose Saying goodbye and putting things in order before dying Coming to terms with mortality Finding out what truly matters in life

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

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

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

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

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

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

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

Spousal care-giving arrangements in Europe. The role of gender, socio-economic status and the welfare state

Ariane Bertogg, Susanne Strauss (2020)

Abstract
Spouses (and partners) are the most important source of care in old age. Informal care for frail spouses is provided by both sexes and across all socio-economic backgrounds and welfare policy contexts. There are, however, interesting differences as to whether spouses care alone, receive informal support from other family members or formal support from professional helpers, or outsource the care of their spouse completely. The present article contributes to the literature by differentiating between solo spousal care-giving and shared or outsourced care-giving arrangements, as well as between formal and informal care support. Moreover, we show how care-giving arrangements vary with gender, socio-economic status and welfare policy. Adding to previous research, we compare 17 countries and their expenditures on two elder-care schemes: Cash-for-Care and Care-in-Kind. The empirical analyses draw on the most recent wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) data from 2015. Our results show that men have a higher propensity to share care-giving than women, albeit only with informal supporters. As expected, welfare policy plays a role insofar as higher expenditure on Cash-for-Care schemes encourage informally outsourced care-giving arrangements, whereas Care-in-Kind reduce the likelihood for informally shared or outsourced care-giving arrangements. Moreover, the influence of these welfare policy measures differs between individuals of different socio-economic status but not between men and women.

Statistik om boendeinsatser och anhörigstöd 2019

Socialstyrelsen (2020)

Efter en längre tids ökning av antalet personer som har fått boendeinsatser
av socialtjänsten så har det skett en stabilisering de senaste åren. Befolkningsmässigt större kommuner gav fler insatser per capita, jämfört med
mindre.

Stärkt stöd till barn som anhöriga Slutrapport från regeringsuppdrag 2017–2020

Socialstyrelsen (2020)

Sammanfattning
En hög andel barn har någon gång under sin uppväxt i sin familj missbruk/beroende, psykisk ohälsa eller funktionsnedsättning, våld, allvarlig sjukdom eller skada eller någon som avlider. Ofta är svårigheterna överlappande. Det är ett grundläggande folkhälsoarbete att genom adekvat stöd förebygga de väl dokumenterade riskerna för negativa konsekvenser av en sådan uppväxt, i barnens vardag här och nu och för deras framtid. Ett omfattande utvecklingsarbete har utifrån regeringsuppdragen bedrivits under hela perioden 2011–2020, i nära samarbete med andra nationella och regionala aktörer. Steg har tagits närmare målet att barn inte ska skadas av föräldrars missbruk och beroende och att psykisk ohälsa av familjerelaterade orsaker minskar hos barn och unga. Detta har skett bland annat genom att stödja både hälso- och sjukvård och socialtjänst i att genom ökad kunskap och skapandet av hållbara strukturer tillämpa ett barn-, föräldraskaps- och familjeperspektiv i arbetet med dessa familjer. Stödet har bestått i framtagande och publicering av kunskapssammanfattningar och olika former av webbstöd, spridande av verksamma arbetssätt, stöd till utvecklingsarbeten samt anordnande av konferenser och lärande nätverk. Detta påverkans- och utvecklingsarbete är viktiga insatser för att minska de påverkbara hälsoklyftorna i samhället. Arbetet är också en utmaning som kräver långsiktighet och kontinuerligt stöd för implementering. Fortsatta kontinuerliga insatser behövs för att alla som i sitt arbete möter föräldrar med egna svårigheter uppmärksammar barnens situation och ger dem information, råd och stöd efter behov. Medvetenheten om professionens ansvar att förhålla sig till patienter, brukare och klienter som föräldrar, och till deras barn som anhöriga och rättighetsbärare, behöver öka inom såväl hälso- och sjukvården som socialtjänsten. Barnkonventionen som lag stärker arbetet, men kräver fortsatta insatser för efterlevnad i praktiken. I denna redovisning lyfts därför behovet av att ett fortsatt nationellt stöd inom området behövs. Det stödet omfattar fortsatt arbete med uppföljning, utveckling av ett samordnat familjeorienterat arbetssätt inom socialtjänsten och hälso- och sjukvården, stödstrukturer för barn i akuta situationer, samlad kompetens och ansvar för barn som föds med skador till följd av exponering av alkohol under fosterlivet samt nationellt samordning inom flera områden, exempelvis i arbetet med våld mot barn. Det är angeläget att den kommande ANDT-strategin från 2021 och framåt fortsatt särskilt lyfter behovet av satsningar på barn och stöd i föräldraskap för att se till barns behov av en trygg uppväxt här och nu samt förebygga missbruk och psykisk ohälsa i nästa generation.

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

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

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

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

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

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

The Usage of Digital Resources by Swedish Suicide Bereaved in Their Grief Work: A Survey Study

Westerlund, Michael Uv (2020)

Abstract:
This study examined Swedish suicide bereaved individuals' use of different resources in their grief work and how they value these resources. The material consisted of a web-based survey, which was analyzed with quantitative methods. The results showed that the psychosocial ill-health was severe among the suicide bereaved participants and that a majority used digital resources in their grief work. The propensity to engage in online support groups or memorial websites was not predicted by the severity of psychosocial consequences following the suicide. However, multiple regressions showed that higher online support group activity predicted more satisfaction with current psychosocial health, while memorial websites seemed to have the opposite effect. This study not only indicates that some digital resources, for example, online support groups, may be an effective way of coping with grief related to suicide loss, but also suggests that memorial websites may increase rumination and in this way cause emotional distress

Upplevelser av att vara anhörig till en närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd

Olivia Hellberg, Rebecca Kammerland (2020)

En integrativ forskningsöversikt om dessa anhörigas psykosociala behov samt hur hälso- och sjukvårdskuratorer kan arbeta för att stödja anhöriga som de möter.

Examensarbete Kandidatnivå

Sammanfattning
Syftet är att via en integrativ forskningsöversikt sammanställa forskning om anhöriga till närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd, deras psykosociala behov och behov av stöd. Vidare syftar studien till att undersöka på vilket sätt hälso- och sjukhuskuratorer kan möta dessa anhörigas behov. Forskningsöversikten består av 20 artiklar som är av kvantitativ, kvalitativ och mixad metod. Artiklarna har analyserats med tematisk analys för att därefter analysera framkommande teman utifrån copingteori och professionsteori. Resultaten visar att anhörigas personliga uppoffringar kan få konsekvenser på hälsa, ekonomi och relationer. Som en psykosocial konsekvens av att hjälpa en närstående upplever många anhöriga stress, ångest och depression. Anhöriga behöver stöd som är anpassat efter deras individuella behov. Olika former av stöd efterfrågas: emotionellt-, instrumentellt- och informativt stöd. Det är viktigt att kuratorer i hälso- och sjukvården uppmärksammar anhöriga, har kunskap och kan möta anhörigas individuella behov. Slutsatserna är att det finns många generella aspekter av att vara anhörig och det mest framträdande resultatet är anhörigas behov av information. Individuellt stöd, stöd i rätt tid och adekvat information är viktigt för att främja anhörigas hälsa och välbefinnande.

Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century

Olsen, R. (2009)

Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.

Folkhälsorapport. Artikelnr 2009-126-71.

Socialstyrelsen (2009)

Folkhälsorapport 2009 är den sjunde nationella rapporten och redovisar hälsans utveckling i olika befolkningsgrupper och hur den påverkats av levnadsvanor och omgivningsfaktorer. Under de senaste decennierna har hälsan förbättrats vilket avspeglar sig i att medellivslängden fortsätter att öka och ökar mer bland män än bland kvinnor. Det har också funnits en ogynnsam utveckling av folkhälsan, olika symtom på nedsatt psykiskt välbefinnande ökade kraftigt under 1990-talet utom bland de äldsta. Under 2000-talet tycks dock denna utveckling ha brutits utom bland ungdomar. De senaste uppgifterna som finns om hur befolkningen upplever sitt hälsotillstånd är från 2005 och speglar ett samhälle under högkonjunktur. Hälsotillståndet kan mycket väl ha försämrats sedan dess med tanke på den ekonomiska kris som gjort sig gällande under sista halvåret.

Medellivslängden ökar mest bland män och högutbildade
Den främsta orsaken till den ökande medellivslängden är att allt färre insjuknar i hjärt- och kärlsjukdomar och bland dem som insjuknar har dödligheten minskat kraftigt. Risken att dö i hjärtinfarkt har nära nog halverats de senaste 20 åren och risken att dö i stroke har minskat med en tredjedel. Minskad rökning samt lägre blodfetter och blodtryck gör att färre insjuknar. Bättre behandlingsmetoder har bidragit till att risken att dö i hjärtinfarkt eller stroke minskat dramatiskt för både kvinnor och män. Cancerdödligheten visar inte samma positiva utveckling: lungcancer minskar bland män men ökar alltjämt bland kvinnor och minskningen av bröstcancerdödligheten är förhållandevis liten. Skillnader i förväntad medellivslängd mellan personer med olika lång utbildning har ökat under hela 1990-talet, och fortsätter att öka under 2000- talet framför allt bland kvinnor. Det är framför allt sociala skillnader i cancerdödlighet som ökar bland kvinnor.

Förändrade levnadsvanor
Bland barn ökade övervikten kraftigt från 1980-talet till 2000-talet men nu tycks ökningen plana ut. Idag är 15-20 procent av alla barn överviktiga och 3-5 procent är feta. Barns matvanor har förbättrats, fler äter frukt och grönsaker medan konsumtionen av läsk och godis har sjunkit markant under senare år. Bland ungdomar i årskurs 9 minskar andelen rökare liksom alkoholkonsumtionen och användningen av narkotika. Ökningen av andelen vuxna med övervikt och fetma var störst på 1990-talet och ser nu ut att avstanna. I åldrarna 16-84 år är hälften av männen och nästan 40 procent av kvinnorna överviktiga eller feta. Fetma förkortar i genomsnitt livet med 6-7 år. De allra senaste åren förefaller energiintaget via maten minska för första gången på decennier. Alkoholkonsumtionen har ökat sedan början av 1990-talet och högst alkoholkonsumtion har män i åldern 20-24 år. Den alkoholrelaterade dödligheten minskar bland män i åldern 25-64 år och ökar i åldrarna över pensionsåldern. Bland kvinnor ökar alkoholdödligheten i åldrarna 65-74 år medan den varit i stort sett oförändrad i åldern 45-64 år. Narkotikadödligheten minskade på 2000-talet efter att ha ökat dramatiskt under decennier.

Hälsoutvecklingen bland ungdomar oroande
Flera olika indikatorer pekar på att psykisk ohälsa är särskilt vanligt bland yngre kvinnor men att den ökar bland båda könen. Andelen självmordsförsök ökar kraftigt bland unga kvinnor, och allt fler unga vårdas på sjukhus för depression eller ångest och för alkoholförgiftning. Under sista åren har dödligheten bland unga män ökat något till följd av en liten ökning i flera dödsorsaker, nämligen skador, alkoholrelaterade dödsorsaker och möjligen även självmord.

Hälsan är ojämnt fördelad
Hjärt- och kärlsjukdomar och diabetes är vanlig are bland lågutbildade.
Rökning minskar i alla grupper utom bland kvinnor med enbart grundskoleutbildning.
Överlevnad i bröstcancer är lägre bland kvinnor med lägre utbildning.
Svår värk och dåligt allmänt hälsotillstånd är betydligt vanligare hos arbetare än hos tjänstemän.
Ensamstående kvinnor med barn har mer besvär av värk, oftare nedsatt psykiskt välbefinnande, röker mer och överviktiga är vanligare.
Astma och födoämnesallergier är vanligare bland barn till föräldrar i lägre socialgrupper. De får dessutom allvarligare symtom av sin astma än barn i högre socialgrupper.
Tandhälsan är betydligt sämre hos socioekonomiskt svaga grupper. Många anser sig inte ha råd med den tandvård de behöver.
Ensamstående kvinnor är en våldsutsatt grupp och 15 procent av alla ensamstående kvinnor med små barn har utsatts för våld i hemmet.
Risken för våld är större bland kvinnor med fysiska och psykiska funktionshinder samt äldre med få sociala kontakter.
Våld och skador drabbar oftare barn i familjer med låga inkomster.
Det är vanligare bland lågutbildade att äldre vårdas av sina anhöriga. De som har högre utbildning köper i större utsträckning dessa tjänster.
Vissa grupper avstår oftare än andra från att hämta ut sina läkemedel: ensamstående med barn, arbetslösa, personer med sjuk- och aktivitetsersättning, personer med ekonomiskt bistånd och de som har höga avgifter för läkemedel. Ensamstående kvinnor med barn avstår i tre gånger så hög utsträckning som befolkningen i sin helhet.

Gabriellas resa: I skuggan gömmer sig solkatterna

Elisabeth Hagborg, Tove Hennix (2009)

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

Gender symmetry, sexism, and intimate partner violence

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

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

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

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

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

I taket lyser stjärnorna

Johanna Thydell, Manus och regi Linn Gottfridsson och Lisa Siwe (2009)

Jenna går i sjuan och borde egentligen bara behöva oroa sig över brösten som aldrig växer, varför hon inte är lika populär som Ullis-"knullis" och hur hon ska få Sakke att bli kär i henne eller åtminstone upptäcka att hon finns. När Jennas mamma drabbas av cancer är de tvungna att flytta hem till mormor, som dessutom bor granne med Ullis. Ullis bor med sin alkoholiserade mamma, och mellan flickorna växer det fram en vänskap. Detta är en film om något av det svåraste som finns; att förlora någon man älskar till döden. Men det är också en film om vänskap, identitet och faktiskt om överlevnad.

Iconicity in the development of picture skills: typical development and implications for individuals with severe intellectual disabilities

Stephenson, J. (2009)

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

Impacts of family support in early childhood intervention research

Friend, A. C., J. A. Summers, et al. (2009)

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)

Moderate versus severe early life stress: Associations with stress reactivity and regulation in 10-12-year-old children

Gunnar, M. R., Frenn, K., Wewerka, S. S., & Van Ryzin, M. J. (2009)

Early life stress (ELS) is expected to increase reactivity of the hypothalamic-pituitary-adrenocortical (HPA) axis; however, several recent studies have shown diminished cortisol reactivity among adults and children with ELS exposure. The goal of this study was to examine cortisol activity in 10-12-year-old internationally adopted children to determine if moderate and severe ELS have different impacts on the HPA axis. Salivary cortisol and two measures of autonomic activity were collected in response to the Trier Social Stress Test for Children (TSST-C). Three groups reflecting moderate, severe, and little ELS were studied: early adopted children who came predominantly from foster care overseas (early adopted/foster care (EA/FC), n=44), later adopted children cared for predominantly in orphanages overseas (late adopted/post-institutionalized (LA/PI), n=42) and non-adopted (NA) children reared continuously by their middle- to upper-income parents in the United States (n=38). Diminished cortisol activity was noted for the EA/FC group (moderate ELS), while the LA/PI group (severe ELS) did not differ from the NA group. Overall, few children showed cortisol elevations to the TSST-C in any group. The presence/absence of severe growth delay at adoption proved to be a critical predictive factor in cortisol activity. Regardless of growth delay, however, LA/PI children exhibited higher sympathetic tone than did NA children. These results suggest that moderate ELS is associated with diminished cortisol activity; however, marked individual differences in cortisol activity among the LA/PI children suggest that child factors modify the impact of severe ELS. Lack of effects of severe ELS even for growth delayed children may reflect the restorative effects of adoption or the generally low responsiveness of this age group to the TSST-C.

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

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

Contributors

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

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

Nationella indikatorer för God vård: hälso och sjukvårdsövergripande indikatorer och indikatorer i Socialstyrelsens nationella riktlinjer

Socialstyrelsen (2009)

Socialstyrelsen presenterar för första gången en samlad uppsättning nationella indikatorer för God vård. Därmed tas ytterligare steg i arbetet med att strukturera uppföljningen av hälso- och sjukvården.

God vård och omsorg

Socialstyrelsen lanserade begreppet God vård 2007 och begreppet
God kvalitet i socialtjänsten 2008. Idag används det gemensamma begreppet God vård och omsorg som samlingsbegrepp för de egenskaper en god vård respektive en god kvalitet i socialtjänsten. God vård och omsorg utgår från lagstiftningen i Hälso- och sjukvårdslagen och Socialtjänstlagen. De sex områdena är

vården och omsorgen ska vara kunskapsbaserad och bygga på bästa tillgängliga kunskap
vården och omsorgen ska vara säker. Riskförebyggande verksamhet ska förhindra skador. Verksamheten ska också präglas av rättssäkerhet
vården och omsorgen ska vara individanpassad och ges med respekt för individens specifika behov, förväntningar och integritet. Individen ska ges möjlighet att vara delaktig
vården och omsorgen ska vara effektiv och utnyttja tillgängliga resurser på bästa sätt för att uppnå uppsatta mål
vården och omsorgen ska vara jämlik och tillhandahållas och fördelas på lika villkor för alla
vården och omsorgen ska vara tillgänglig och ges i rimlig tid och ingen ska behöva vänta oskälig tid på vård eller omsorg.
Innebörden av begreppet God vård inom hälso- och sjukvård förtydligas i rapporten utifrån det arbete som sex expertarbetsgrupper genomfört och inkomna synpunkter från hälso- och sjukvården.

Uppföljningsområden och indikatorer

De hälso- och sjukvårdsövergripande nationella indikatorer som Socialstyrelsen presenterar i denna rapport presenteras inom ramen för uppföljningsområden. Dessa uppföljningsområden visar på viktiga aspekter inom hälso- och sjukvården som tillsammans belyser processer, resultat och kostnaden utifrån God vård.

Sammanlagt presenteras 24 uppföljningsområden och 28 hälso- och sjukvårdsövergripande indikatorer. Rapporten visar på en brist på information för möjligheten att systematiskt och heltäckande följa upp en stor del av de uppföljningsområden som lyfts fram. Genom att identifiera områden som viktiga för uppföljning av God vård tar Socialstyrelsen ett ansvar för att fortsättningsvis stödja arbetet med att utveckla sätt att följa upp de områden som lyfts fram.

Vidare presenteras i rapporten patient- och sjukdomsspecifika indikatorer baserade på Socialstyrelsens nationella riktlinjer. För närvarande finns nationella riktlinjer med indikatorer för hjärtsjukvård, prostatacancer, bröstcancer och kolorektalcancer. Inom kort publiceras även nationella riktlinjer för strokesjukvård samt diabetessjukvård. Ett flertal nationella riktlinjer med indikatorer kommer att publiceras under 2010 och 2011. Indikatorer kommer då att finnas för demens, depression och ångest, rörelseorganens sjukdomar, sjukdomsförebyggande åtgärder, psykosociala insatser för schizofreni samt lungcancer.

Nationella öppna jämförelser och utvärderingar

Socialstyrelsen kommer att använda såväl de hälso- och sjukvårdsövergripande indikatorerna som indikatorerna från de nationella riktlinjerna i återkommande nationella öppna jämförelser och som underlag för uppföljningar och utvärderingar av hälso- och sjukvården. Syftet är att öka tillgängligheten till information om hälso- och sjukvårdens processer, resultat och kostnader och målsättningen är att denna information i sin tur ska användas för förbättringar i hälso- och sjukvården.

Socialstyrelsen kommer också att utifrån de öppna jämförelserna, uppföljningarna och utvärderingarna ge tydliga rekommendationer till såväl landstingen som staten om områden där förbättringar av hälso- och sjukvården bör genomföras. Myndigheten kommer även att bedöma kvaliteten och effektiviteten i hälso- och sjukvården.

Nationellt kunskapsnätverk med inriktning på psykiska funktionshinder och hjälpmedel

Folkesson Per (2009)

Syftet med projektet var att starta ett nationellt kunskapsnätverk inom området psykiska funktionshinder och hjälpmedel. Kunskapsnätverket ska fungera som utbildare inom området, visa på arbetsmetoder för utprovning av hjälpmedel, ge information, råd och stöd i förskrivningsprocesser och utgöra en mötesplats för olika aktörer inom området psykisk ohälsa

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

Olaison, A. (2009)

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

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

Olaison, A. (2009)

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

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

Olaison, A. (2009)

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

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

Olaison, A. (2009)

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

Official incidents of domestic violence: Types, injury, and associations with nonofficial couple aggression

Capaldi, D. M., Shortt, J. W., Kim, H. K., Wilson, J., Crosby, L., & Tucci, S. (2009)

Official police reports of intimate partner violence (IPV) were examined in a community sample of young, at-risk couples to determine the degree of mutuality and the relation between IPV arrests and aggression toward a partner (self-reported, partner reported, and observed). Arrests were predominantly of the men. Men were more likely to initiate physical contact, use physical force, and inflict injuries than women, although few injuries required medical attention. In the context of nonofficial aggression toward a partner, overall, women had higher levels of physical and psychological aggression compared to men, and levels of severe physical aggression did not differ by gender. Couples with an IPV arrest were more aggressive toward each other than couples with no IPV arrests; however, nonofficial levels of aggression were not higher for men than for women among couples experiencing an IPV incident.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement.

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Patterns of informal help- and caregiving in Sweden: a 13-year perspective

Jegermalm, M., & Jeppsson Grassman, E. (2009)

This article analyses informal help and caregiving in Sweden with a focus on the scope and trends of change over time. The discussion is based on the results of three national surveys and of one surveyconducted in the county of Stockholm. The results indicated that informal help and caregiving was common throughout the period under study. In the

s, the figures were fairly stable, while fromthe late

s to

there seems to have been a dramatic increase in the prevalence of such support. Two interpretative perspectives are used to discuss this pattern. One locates its point of departure in recent welfare state changes and in the substitution argument, according to which cuts in welfare services put more pressure on people to provide informal help and care. The second perspective relates to the present debate on civil society and to its possible role in contemporarysociety. According to the civil society perspective, an increase in the prevalence of informal help and caregiving might be interpreted as an expression of growing civic involvement 'in its own right',without a straightforward and simple relationship to changes in the welfare state. It is argued in the article that the two frames of interpretation should not be viewed as mutually exclusive, but rather that they represent two partly complementary approaches to the understanding of the complex dynamics of unpaid work in contemporary Swedish society.

People with dementia and their family carers' satisfaction with a memory service: A qualitative evaluation generating quality Indicators for dementia care.

Willis, R., Chan, J., Murray. J., Matthews, D. & Banerjee, S. (2009)

Background: UK health policy requires the early identification and management of dementia. There are few good quality evaluations of models of care in dementia with a particular lack of data from user and carer perspectives. The Croydon Memory Service Model (CMSM) was developed to identify and treat people in the early stages of dementia and its evaluation includes an assessment of service satisfaction. Aim: To complete a qualitative investigation into the satisfaction with the service of those assessed and treated using the CMSM. Method: The CMSM was the subject of a multi-method evaluation, as part of this, semi-structured qualitative interviews were carried out with 16 people with dementia and 15 family carers to establish their opinions of the service. Purposive sampling was used to identify participants with a range of diagnosis, ethnicity, and age. Conventional Content Analysis was used to analyse the data. Results: Six themes concerning satisfaction emerged from the data: initial experience of dementia; service experience; helpful interventions; normalizing the catastrophic; clear communication; and gaps in service. Peer support and clear communication were seen as valuable assets provided by the service, allowing participants to use coping strategies which normalized having dementia. Conclusions: From these data we can derive seven quality indicators with which to judge services for people with dementia: (i) provision of broad-based care as well as assessment; (ii) clear communication about diagnosis and care; (iii) continuing peer support groups; (iv) easy availability of staff; (v) professional staff behaviour; (vi) the service working for people with young-onset dementia and their carers; (vii) strategies to manage those with subjective memory impairment but no objective deficits.

Perceptions of the relationship between mental health professionals and family caregivers: has there been any change?

Nicholls, E. and R. Pernice (2009)

A number of international studies have highlighted family caregivers' (FCGs') dissatisfaction with their relationship with mental health professionals (MHPs) when providing care for mentally ill family members. However, few studies have explored the mental health professionals' perspective of this relationship. This study explored both FCGs' and MHPs' perspectives. Semi-structured interviews were conducted with seven FCGs and seven MHPs from two different geographical areas of New Zealand. Thematic analysis of these interviews revealed four distinct MHP themes and five FCG themes. The themes illuminate incongruence between MHPs' intentions to form a positive working relationship with families and the FCGs' mainly negative experiences of this relationship

Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies

May PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M, Hoyme HE. (2009)

Researching the epidemiology and estimating the prevalence of fetal alcohol syndrome (FAS) and other fetal alcohol spectrum disorders (FASD) for mainstream populations anywhere in the world has presented a challenge to researchers. Three major approaches have been used in the past: surveillance and record review systems, clinic-based studies, and active case ascertainment methods. The literature on each of these methods is reviewed citing the strengths, weaknesses, prevalence results, and other practical considerations for each method. Previous conclusions about the prevalence of FAS and total FASD in the United States (US) population are summarized. Active approaches which provide clinical outreach, recruitment, and diagnostic services in specific populations have been demonstrated to produce the highest prevalence estimates. We then describe and review studies utilizing in-school screening and diagnosis, a special type of active case ascertainment. Selected results from a number of in-school studies in South Africa, Italy, and the US are highlighted. The particular focus of the review is on the nature of the data produced from in-school methods and the specific prevalence rates of FAS and total FASD which have emanated from them. We conclude that FAS and other FASD are more prevalent in school populations, and therefore the general population, than previously estimated. We believe that the prevalence of FAS in typical, mixed-racial, and mixed-socioeconomic populations of the US is at least 2 to 7 per 1,000. Regarding all levels of FASD, we estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries.

Prevalence of parental mental illness in Australian families

Maybery, D.J., Reupert, A., Patrick, K., Goodyear, M., & Crase, L. (2009)

AIMS AND METHOD

To provide multiple estimates of the numbers of Australian and Victorian families and children living in families where a parent has had a mental illness. We used the Australian Bureau of Statistics Victorian Mental Health Branch service usage and data collected from 701 community participants to triangulate prevalence information.

RESULTS

According to population estimates, 23.3% of all children in Australia have a parent with a non-substance mental illness, 20.4% of mental health service users have dependent children and 14.4% of the community study participants report having at least one parent with a mental illness.

CLINICAL IMPLICATIONS

The multiple prevalence estimates of the numbers of children in families with parental mental illness provide fundamental information for psychiatric policy, planning and programming.

Preventing Mental, Emotional and Behaviour Disorders Among Young People. Progress and Possibilities

National Research Council and Institute of Medicin. (2009)

This report builds on a highly valued predecessor, the 1994 Institute of Medicine (IOM) report entitled Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. That report provided the basis for understanding prevention science, elucidating its then-existing research base, and contemplating where it should go in the future. This report documents that an increasing number of mental, emotional, and behavioral problems in young people are in fact preventable. The proverbial ounce of prevention will indeed be worth a pound of cure: effectively applying the evidence-based prevention interventions at hand could potentially save billions of dollars in associated costs by avoiding or tempering these disorders in many individuals. Furthermore, devoting significantly greater resources to research on even more effective prevention and promotion efforts, and then reliably implementing the findings of such research, could substantially diminish the human and economic toll.

Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities

Warner KE, Boat TF, O'Connell ME, National Research C. (2009)

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

Prevention practices have emerged in a variety of settings, including programs for selected at-risk populations (such as children and youth in the child welfare system), school-based interventions, interventions in primary care settings, and community services designed to address a broad array of mental health needs and populations.

Preventing Mental, Emotional, and Behavioral Disorders Among Young People updates a 1994 Institute of Medicine book, Reducing Risks for Mental Disorders, focusing special attention on the research base and program experience with younger populations that have emerged since that time.

Researchers, such as those involved in prevention science, mental health, education, substance abuse, juvenile justice, health, child and youth development, as well as policy makers involved in state and local mental health, substance abuse, welfare, education, and justice will depend on this updated information on the status of research and suggested directions for the field of mental health and prevention of disorders.

Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems

Andreas JB, O'Farrell TJ. (2009)

We investigated longitudinal associations between alcohol-dependent fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N = 125, M(age) = 9.8 +/- 3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior and that this effect would be mediated by fathers' posttreatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, whereas Structural Equation Modeling (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' posttreatment behaviors mediated this association: Greater treatment involvement predicted greater posttreatment Alcoholics Anonymous attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.

Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems.

Andreas JB, O'Farrell TJ. (2009)

We investigated longitudinal associations between alcoholic fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N=125, Mage=9.8±3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior, and that this effect would be mediated by fathers' post-treatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, while structural equation (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' post-treatment behaviors mediated this association: greater treatment involvement predicted greater post-treatment Alcoholics Anonymous (AA) attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.

Keywords: Children of alcoholics (COA), alcoholism treatment, Alcoholics Anonymous (AA), Structural Equation Modeling (SEM)

Research-based instructions to increase communication skills for students with severe disabilities

Pinto P, Simpson C, Bakken JP. (2009)

Communication skills are of great importance for children with developmental disabilities to be functional and independent in their own lives. This paper provides results of a comprehensive literature review on current researched-based intervention strategies that appear effective to increase communication skills for students who have severe disabilities. Researchers typically have combined intervention strategies and the actual effectiveness of isolated procedures is less clear. This review is aimed at investigating these isolated procedures and attempts to link research and practice in the area of communication.

Samordnad tillsyn av vård och omsorg

Socialstyrelsen (2009)

I maj 2009 beslutade riksdagen att samordna tillsynen av vård och
omsorg i en och samma myndighet. Beslutet innebär att ansvaret för
tillsynen av socialtjänsten förs över från länsstyrelserna till Socialstyrelsen,
som redan är nationell tillsynsmyndighet för hälso- och
sjukvården.
Med en samordnad tillsyn skapas förutsättningar för en enhetlig och
förutsägbar tillsyn, som bättre möter framtida utmaningar där vård
och omsorg blir alltmer involverade i varandra. En samordnad tillsyn
ska också underlätta för allmänheten att hitta rätt när de vill framföra
klagomål och anmäla brister.
Den 1 januari 2010 tar Socialstyrelsen över ansvaret för
• tillsynen av socialtjänstens äldreomsorg, omsorger om personer
med funktionsnedsättning, individ- och familjeomsorg samt
enskild verksamhet enligt socialtjänstlagen (SoL) och lagen om
stöd och service till vissa funktionshindrade (LSS)
• tillsynen av kommunernas verkställighet av beslut och domar
• ansökan om sanktionsavgift
• tillståndsgivning till enskilda verksamheter enligt SoL och LSS
• rådgivning.
Länsstyrelserna kommer att ha fortsatt ansvar för alkohol- och
tobakstillsyn och förebyggande insatser mot alkohol, tobak och
droger. Länsstyrelserna ska också samordna kvinnofridsfrågor och
fördela statsbidrag som rör kvinnofridsfrågor, personliga ombud och
alkohol- och drogförebyggande arbete.

Vara anhörig: bok för anhöriga till psykiskt sjuka

Moberg, Åsa (2005)

Hur är det att vara anhörig till en psykiskt sjuk människa? Var finner jag hjälp och stöd?

Det finns oändliga mängder kunskap, också hos behandlare och ansvariga myndigheter, om hur viktigt det är att lyssna till de anhöriga. Gång på gång betonas vikten av ett gott samarbete mellan psykiatrin och de sjukas sociala nätverk. Ändå fungerar detta samarbete sällan bra i praktiken.

I Vara anhörig beskriver Åsa Moberg, författare till den mycket uppmärksammade Adams bok, med utgångspunkt i enskilda fallbeskrivningar och lokala vårdformer, olika förhållningssätt för patienter, anhöriga och närstående. Här finns också berättelser om nytänkande och fungerande vårdformer.

Depression är den vanligaste psykiska sjukdomen i Sverige.Det är en sjukdom som i hög grad påverkar alla närstående. Förändringar i vården är nödvändiga och för det behövs gemensamma mål. Ändå glöms de anhöriga ofta bort.

Idag tycks de psykiatriska diagnosernas antal tillväxa i ungefär samma takt som mängden människor med psykiska lidanden. Sker allt detta diagnosticerande på bekostnad av det stöd, som behövs för att människor med psykiska funktionshinder och deras anhöriga ska klara vardagen? Det tror Åsa Moberg.

1900-talet var det århundrade när de sjukas, "brukarnas", röster började höras. 2000-talet måste bli den tid när de anhöriga äntligen tas på allvar.

Varför söker inte anhörigvårdare stöd? Rapport från FoU-Jämt, 2005:1.

Göransson, S. (2005)

Trots att anhörigvården synliggjorts under senare år är det fortfarande många anhörigvårdare som inte är kända av kommunen och många som inte söker stöd. För att ta reda på orsaken till ovanstående förhållande har jag djupintervjuat sexton anhörigvårdare. Informationsbrist är en orsak, många vet inte att det finns hjälp att få, vadsom finns eller hurman ansöker. Att det är omständligt, att man inte orkar eller att den som vårdas inte vill ha hjälp från någon utomstående är annat som framkommit. Främst handlar det dock om att man vill klara sig själv. Anhörigvård handlar om två parter, den vårdbehövande och den friske parten – anhörigvårdaren – båda parter måste vara beredda att "öppna upp" hemmet för vårdpersonal för att hjälp i hemmet ska kunna påbörjas. Den personliga integriteten påverkas. Stöd utanför hemmet eller från den egna familjen är följaktligen det som anhörigvårdare främst önskar. Lojalitet mot den närstående gör många gånger att anhörigvårdaren utstår mer än vad som verkar vara rimligt att klara men... " – hur långt sträcker sig egentligen det äktenskapliga löftet? "Anhörigvårdare behöver sökas upp och motiveras till att söka avlösning. Givetvis bör också utbudet anpassas efter vad anhörigvårdarna verkligen efterfrågar." – Vad är då ett bra anhörigstöd? "Kanske inte bara det som erbjuds av det offentliga. När en make/maka drabbas av sjukdom kan den friske parten bli väldigt ensam om alltansvar i hemmet. Att då få hjälp med diverse praktiska vardagsgöromål kan vara ett stöd så gott som något annat. För att tillgodose detta är en utveckling av frivilligarbete liknande "Väntjänst" önskvärd.

Writing for recovery: A manual for structured writing after disaster and war

Yule, W., Dyregrov, A., Neuner, F., Pennebaker, J., Raundalen, M. & Van Emmerik, A. (2005)

This manual is easy to administer and group instructors with some basic knowledge of human responses to trauma and disaster can be selected and trained to instruct the adolescents on their writing. Together with UN organizations such as UNICEF or UNHCR, and/or with NGOs, local personnel can reach out to many adolescents by using this manual.

A meta-analysis of parent training: Moderators and follow-up effects

Lundahl, B., Risser, H. J., & Lovejoy, C. M. (2006)

A meta-analysis of 63 peer-reviewed studies evaluated the ability of parent training programs to modify disruptive child behaviors and parental behavior and perceptions. This analysis extends previous work by directly comparing behavioral and nonbehavioral programs, evaluating follow-up effects, isolating dependent variables expressly targeted by parent training, and examining moderators. Effects immediately following treatment for behavioral and nonbehavioral programs were small to moderate. For nonbehavioral programs, insufficient studies precluded examining follow-up effects. For behavioral programs, follow-up effects were small in magnitude. Parent training was least effective for economically disadvantaged families; importantly, such families benefited significantly more from individually delivered parent training compared to group delivery. Including children in their own therapy, separate from parent training, did not enhance outcomes.

Att ge syskon utrymme

Granat, Tina, Nordgren, Ingrid & Rein, George (2006)

Rapport från barn och ungdomshabiliteringen

Being the next of kin of an adult person with muscular dystrophy

Boström, K., Ahlström, G., & Sunvisson, H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Childhood bereavement: psychopathology in the 2 years postparental death

Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A., & Weller, E.B. (2006)

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

Children´s experiences of Hospitalization

Coyne, I. (2006)

Abstract
This article reports on children's experiences of hospitalization. Data were collected via semi-structured interviews with 11 children aged between seven and 14 years from four paediatric units in England. The children identified a range of fears and concerns, which included: separation from parents and family; unfamiliar environment; investigations and treatments; and loss of self-determination. The children's loss of self-determination over personal needs exacerbated their fears and concerns. It needs to be recognized that compliance with hospital routines is a variable, which influences children's reaction to hospitalization. The findings clearly indicate that children need adequate information tailored to their needs, that their views are sought in the planning and delivery of their care and that hospital environments need to be made more child-centred. Interventions designed to reduce children's stress during hospitalization are not only likely to decrease their stress at the time, but also likely to influence how future experiences are appraised and managed.

Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment

Andreas JB, O'Farrell TJ, Fals-Stewart W. (2006)

Psychosocial adjustment in children of alcoholics (COAs; N = 125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Everyday activity settings, natural learning environments, and early intervention practices

Dunst CJ, Bruder MB, Trivette CM, Hamby DW. (2006)

Findings from two studies examining the parent and child outcomes associated with different ways of conceptualizing natural learning environment early intervention practices are presented. One sample in each study was asked to indicate the extent to which early intervention practitioners implemented their interventions in everyday family or community activities, and one sample in each study was asked to indicate the extent to which everyday family or community activities were used as sources of child learning opportunities. Results from both studies showed that using everyday activities as sources of children's learning opportunities were associated with positive benefits, whereas practitioners' implementing their interventions in everyday activities showed little or no positive benefits, and in several cases, had negative consequences. Results are discussed in terms of the need to carefully consider how and in what manner natural learning environment practices are operationalized by early intervention practitioners.

A family perspective for substance abuse: implications from the literature

Gruber KJ, Taylor MF (2006)

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

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

Gruber KJ, Taylor MF. (2006)

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

A pilot study of adjunctive family psychoeducation in adolescent major depression: Feasibility and treatment effect

Sanford, M., Boyle, M., McCleary, L., Miller, J., Steele, M., Duku, E., et al. (2006)

Objective: To obtain preliminary evidence of the feasibility and effectiveness of adjunctive family psychoeducation in adolescent major depressive disorder. Method: Participants were from outpatient clinics in Hamilton and London, Ontario. Over 24 months, 41 adolescents ages 13 through 18 years meeting major depressive disorder criteria were recruited (31 in Hamilton, 10 in London). Participants were randomized to usual treatment or usual treatment plus family psychoeducation. Outcome measures were readministered at 2 weeks, mid-treatment, posttreatment, and 3-month follow-up. Intent-to-treat analyses used χ2 and t tests and growth curve analysis. Standardized effects based on growth curve estimates were calculated for continuous outcomes. Results: The London site was withdrawn because of poor participant retention. In Hamilton, no participant missed more than one assessment and there was good family psychoeducation adherence. Compared to controls, participants in the experimental group showed greater improvement in social functioning and adolescent-parent relationships (with medium standardized effect size >0.5), and parents reported greater satisfaction with treatment. Conclusions: There were positive treatment effects on family and social functioning processes postulated to mediate the clinical course of major depressive disorder. The study provides support for further evaluation of family psychoeducation in this clinical population. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

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

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

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

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

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

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

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

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

Anknytningsteori: Betydelsen av nära känslomässiga relationer

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

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

Ur innehållet:

Evolution och anknytning

Separation och anknytning

Betydelsen av förälderns lyhördhet i samspelet

Äldre barns och vuxnas nära känslomässiga relationer

Barnets biologiska förutsättningar och hur de påverkar anknytningsrelationen.

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

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

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

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

Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort

Keysor JJ, Jette AM, Coster WJ, Bettger JP, Haley SM. (2006)

Keysor JJ, Jette AM, Coster W, Bettger JP, Haley SM. Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort.

Objective

To examine whether home and community environmental barriers and facilitators are predictors of social and home participation and community participation at 1 and 6 months after discharge from an acute care or inpatient rehabilitation hospital.

Design

Cohort study.

Setting

Postacute care.

Participants

Adults (N=342) age 18 years or older with a diagnosis of complex medical, orthopedic, or neurologic condition recruited from acute care and inpatient rehabilitation facilities. The mean age ± standard deviation of participants was 68±14 years; 49% were women and 92% were white.

Interventions

Not applicable.

Main Outcome Measures

Participation in social, home and community affairs as assessed with the Participation Measure for Post-Acute Care.

Results

Adjusting for covariates, 1 month after discharge a greater presence of home mobility barriers (P<.01) was associated with less social and home participation; whereas greater community mobility barriers (P<.01) and more social support (P<.001) were associated with greater participation. At 6 months, social support was the only environmental factor associated with participation after adjusting for covariates.

Conclusions

This study provides new empirical evidence that environmental barriers and facilitators do influence participation in a general rehabilitation cohort, at least in the short term.

Key Words
Disabled persons; Environment; Outcome assessment (health care); Rehabilitation
Supported by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education (grant no. H133B990005), the National Institute of Child Health and Human Development (grant no. 5 K12 HD043444-02), and the Arthritis Foundation (arthritis investigator award).

No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.

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

Wiberg, Maria (2006)

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

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

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

Lindblad, B.-M. (2006)

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

Attention-deficit/hyperactivity disorder: Are we medicating for social disadvantage?

Efron D. (2006)

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.

Being the next of kin of an adult person with muscular dystrophy

Boström K, Ahlström G, Sunvisson H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Being the next of kin of an adult person with muscular dystrophy

Boström, K., Ahlström, G., & Sunvisson, H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Benjamin-Min mamma är speciell

Lazai Stefanie, Phol Stephan (2006)

En bok för barn som handlar om att leva med en förälder som har MS. Boken Benjamin ger föräldrar och barn möjlighet att läsa och diskutera tillsammans. Den berättar om hur det är att leva med en mamma som har MS och tar upp de många oförutsägbara sidorna av sjukdomen. Boken förklarar på ett enkelt sätt vad som händer med mamman och stöttar Benjamin känslomässigt. Detta skapar insikt och trygghet för Benjamin och han blir stolt över hur hans mamma övervinner de svårigheter hon ställs inför.

 

Beyond stroke: Description and evaluation of an effective intervention to support family caregivers of stroke patients.

Schure LM, van den Heuvel ETP, Stewart RE, Sanderman R, de Witte LP, Meyboom-de Jong B. (2006)

OBJECTIVE:
The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den Heuvel's previous effect study showed positive effects of the same intervention program, but unlike our present study differences between the two support variants could not be measured.
METHODS:
Of 257 family caregivers who were included and randomly assigned to an intervention variant or a control group, 127 family caregivers completed the intervention in either the group program or the home visiting program.
RESULTS:
Evaluation data showed that both intervention variants had been helpful and feasible, but home visit participants missed peer contact and follow-up contacts were missed in both intervention programs. In comparison to the home visiting program, the group program participants showed more benefit especially with respect to informational and emotional components. Caregivers' preference for type of intervention revealed that both types of intervention had its supporters. Those that preferred the group program could be clearly characterised: they were burdened, lived with a more psychologically handicapped relative, were using active coping strategies more frequently or lived in a region which is considered to be more sociable.
CONCLUSION:
The present study adds extensively to van den Heuvel's effect study with respect to discriminative aspects of group and home intervention programs and their respective benefits for specific family caregiver groups.
PRACTICE IMPLICATIONS:
In order to suitably match an intervention type with specific caregiver characteristics the intervention provider should utilize caregiver self-selection or undertake professional screening of caregiver burden. Telephone contacts should be offered in addition to the interventions.

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

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

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

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

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

Childhood bereavement: psychopathology in the 2 years postparental death

Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A. & Weller, E.B. (2006)

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

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Death and suicide among former child and adolescent psychiatric patients

Engqvist, U. and P. A. Rydelius (2006)

BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.

Det andra barnet. Föräldrars tankar kring sitt andra barn då deras första har ett funktionshinder

Wanker, Maria (2006)

Bakgrund till studien är ett behov och ett intresse att belysa den situation och de dilemman
som föräldrar har att förhålla sig till då deras första barn har ett funktionshinder och de vill
ha fler barn. Mitt intresse väcktes i samband med att jag träffade nyblivna
förstagångsföräldrar till barn med funktionshinder i mitt arbete på en samtalsmottagning
för anhöriga. Syftet med undersökningen är att få vidgad kunskap om föräldrarnas tankar
och erfarenheter i samband med deras andra graviditet.
Studien bygger på intervjuer med föräldrar utifrån frågor om hur de tänkte kring beslutet
om ett barn till, om graviditeten, om möjligheterna till fosterdiagnostik, hur de upplevde
förlossningen och om hur det var att bli föräldrar igen.
Ur intervjumaterialet framstod ett flertal dilemman som föräldrarna hade att ta ställning
till. Dessa berörde existentiella och etiska frågor bl.a. kring människovärde och
funktionshinder och svåra beslut kring fosterdiagnostik och abort i början av processen.
Genom föräldrarnas berättelser går ett stråk av sorg och graviditeterna präglades av oro.
Oron tog sig olika utryck men för flera fanns den kvar länge trots att barnet bedömts som
friskt. Oron relaterade i hög grad till hur det första barnets funktionshinder uppkommit
och gestaltade sig.
Att få ett friskt barn var för alla intervjuade en stor glädje och en revolutionerande
erfarenhet. Den innebar först och främst vetskapen om att det kunde gå bra. Den innebar
också att deras identitet som föräldrar kunde stärkas och relationerna till omvärlden
normaliseras.
Ett kvarstående dilemma för föräldrarna idag är deras kamp att få det stöd de behöver för
att hinna och orka med sina barn och ändå leva så normalt som möjligt. Ett annat dilemma
som alla de intervjuade delar är hur de ska kunna ge det andra barnet möjlighet att
utvecklas fritt och normalt, samtidigt som de hoppas att det ska komma att känna ansvar
för sitt syskon.

Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment

Andreas JB, O'Farrell TJ, Fals-Stewart W. (2006)

Psychosocial adjustment in children of alcoholics (COAs; N=125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems.

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

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

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

Ett reflexivt syskonskap. En studie om att växa upp tillsammans med fostersyskon

Nordenfors, Monica (2006)

Avhandling för doktorsexamen

The aim of this thesis is to describe and analyse how the natural children of foster carers experience growing up in a foster family. The intention was to gain knowledge about their everyday life through their own participation, and to make the research questions derive from their experiences. The Swedish research project "Growing Up With Foster Siblings" built on empirical material collected via focus groups (17 participants), discussion groups (16 partici- pants), a (web and postal) questionnaire (684 answers) and 8 qualitative interviews. The study follows the sociology of childhood and the young people are considered as social actors participating in interactions, activities and negotiations, which contribute to the construction of their social world. Children's competences as well as their constraints are explored. When a family becomes a foster family the whole family is affected, not in the least the natural children, who often take an active part in the fostering assignment. The young people's experiences vary to a great extent. Some describe their relationships with their foster siblings as an ordinary sibling relationship or as being friends. Some take responsibility and care for both their foster siblings wellbeing as well as for their parent's wellbeing. Several of them describe how they reflexively mould their own part in the interaction by focusing on the needs of other family members. A third of the young people in the study experiences a loss of time and attention from their parents. This theme has brought the analysis to the question of how the young people experience their position in the family. In the young people's descriptions it is noticeable how important the feeling of being able to affect their own situation, of being an actor, is. The young persons who have negative experiences (in groups and individual interviews mostly girls/women) have often described themselves as powerless, with no possibility of negotiating and affecting their situation. Many of the young people describe themselves as active and involved in processes through which relationships in the family are formed. There is no consensus as to their construction of how a child in a certain age should engage in caring activities. The young people are involved and implicated in processes that are complex and full of ambiguity. In line with theories of late modern society where sources of authority are localised within the individual and to negotiating processes, the children seem to be of the opinion that they are active agents who themselves decide what to take responsibility for or not. But they do this in a context. They live within a context where they are expected to behave according to certain conceptions of in what way a natural child to a parent who foster should act in relation to their foster siblings but also towards their parents. Expectations interlock with the active child who engages in processes through which social relationships are formed in the family.

Evaluation of a focused short-term preventive counseling project for families with a parent with cancer

Thastum, M., Munch-Hansen, A., Wiell, A., & Romer, G. (2006)

Twenty-four families participated in counselling for families with a parent with cancer (24 mothers, 17 fathers, and 34 children). Parents who received counselling were significantly more depressed before the counselling than a nonrandomized control group who did not receive counselling, but participated in another part of the project. For the parents, there was a significant decrease in depression and increase in family functioning scores from before to after the intervention. For the children, a significant pre- to post-decrease in depression scores was found. Changes in depression and family functioning were significantly correlated with the degree of counselling contentment. Reasons for seeking counselling were insecurity in relation to the children, problems with communication, high level of conflict, and change of roles. A number of themes appeared when parents and children described what they gained from the counselling: Confirmation in being a 'good-enough' parent, more understanding of emotions and reactions of other family members, more sense of intimacy and cohesion within the family, and normalization of own feelings.

Exploring visual-graphic symbol acquisition by pre-school age children with developmental and language delays

Barton, A., Sevcik, R., & Romski, M.. (2006)

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.

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

Andrén, S. (2006)

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

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

Andrén, S. (2006)

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

Family Treatment Approaches for Depression in Adolescent Males

Pruitt, I. T. P. (2006)

Adolescent depression is a serious and common disorder. Though adolescent males are less likely to report depression than females, they have serious risks associated with the disorder, like suicide, future substance abuse, and illegal activity. Several gender differences have been observed among depressed adolescents and should be considered in assessment and treatment. Little efficacy research exists for family treatments of depression in adolescent males, though several approaches have been proposed. These approaches include Structural Family Therapy, Interpersonal Family Therapy, and Attachment-Based Family Therapy. These treatments have been found useful in clinical settings, but much more efficacy research is necessary. Adapted from the source document.

Frightened, threatening, and dissociative parental behavior in low-risk samples: Description, discussion, and interpretations

Hesse, E., & Main, M. (2006)

In 1990 we advanced the hypothesis that frightened and frightening (FR) parental behavior would prove to be linked to both unresolved (U) adult attachment status as identified in the Adult Attachment Interview and to infant disorganized/disoriented (D) attachment as assessed in the Ainsworth Strange Situation. Here, we present a coding system for identifying and scoring the intensity of the three primary forms of FR behavior (frightened, threatening, and dissociative) as well as three subsidiary forms. We review why each primary form may induce fear of the parent (the infant's primary "haven of safety"), placing the infant in a disorganizing approach-flight paradox. We suggest that, being linked to the parent's own unintegrated traumatic experiences (often loss or maltreatment), FR behaviors themselves are often guided by parental fright, and parallel the three "classic" mammalian responses to fright: flight, attack, and freezing behavior. Recent studies of U to FR, as well as FR to D relations are presented, including findings regarding AMBIANCE/FR+. Links between dissociation, FR, U, and D are explored. Parallel processing and working memory are discussed as they relate to these phenomena.

Funktionshinder och strategival. Om att hantera sig själv och sin omvärld

Peterson, G., Ekensteen, W & Rydén, O (2006)

Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.

Participation and disability - a study of participation in school for children and youth with disabilities.

Eriksson L. (2006)

Participation in everyday life is vital to a child's development and well-being and is a basic human right. One definition of participation is engagement in life areas. The objective of this study is to investigate participation in school activities of children and adolescents with disabilities; the study focus on personal factors and factors in the environment, which are closely related to participation. Data were collected in a large survey and a smaller observational study. In the survey, students, parents, teachers, and special education consultants responded to statements about participation and factors related to participation such as autonomy, interaction, availability, support, and environment. In the observational study, participation was observed during various school activities during an entire school day and after school. Children were interviewed about their school day, friendships, and autonomy. The results revealed that participation is multidimensional, with an emphasis on personal experiences, interactions, and context. The theoretical assumption of the International Classification of Functioning, Disability, and Health (ICF) states that the body, participation, and the environment are related. The research results proved this assumption and support the multidimensionality of the participation construct. As indicated in previous research, children and adolescents with disabilities show a lower degree of participation in school than their peers. Participation seems to be more related to autonomy and interactions with significant others than to disability type and general environment. A closer look at various school activities reveals that children with disabilities primarily have a lower degree of participation in math, practical subjects, and science. Being included and having many friends, who provide emotional support, facilitate participation. While, frequently receiving support from teachers and assistants lowered participation. This indicates that there is a relation between support and participation: providing too much support during class can be detrimental to class participation, whereas a good social support network of other children is vital. In this thesis, participation is measured in two ways: by participation frequency and by participation intensity. By counting the number of activities that children participate in, and how often they participate in these activities, a measure of an individual's average participation is obtained, that is, participation frequency. This measure depends more on internal rather than contextual factors, and it changes more often because of internal rather than contextual changes. Intensity measures of participation refer to the amount of involvement within a specific situation, and are contextually dependent. Involvement change based on the situation and the individual's present state. Participation is personal-it is about feeling good about what you are doing and feeling competent in using available opportunities. Participation is dependent on interaction with significant others. Participation for children with disabilities also depends on being provided with necessary support. Participation frequency seems to be less dependent on support than participation intensity. The fact that intensity seem to be more dependent on support and context, shortterm interventions facilitating participation within situations are probably the most fruitful way to enhance participation.

Positive family environment predicts improvement in symptoms and social functioning among adolescents at imminent risk for onset of psychosis

O'Brien MP, Gordon JL, Bearden CE, Lopez SR, Kopelowicz A, Cannon TD. (2006)

This study investigated whether family factors, such as criticism, emotional over-involvement (EOI), warmth, and positive remarks, as measured by the Camberwell Family Interview (CFI), predict symptom change and social outcome for individuals identified as at imminent risk for conversion to psychosis. Twenty-six adolescent patients were administered the Structured Interview for Prodromal Syndromes and the Strauss-Carpenter Outcome Scale at baseline and follow-up assessment approximately three months later. Patients' primary caregivers were administered the CFI at baseline. After controlling for symptom severity at baseline, there were significant associations between caregivers' EOI at baseline and improvement in high-risk youths' negative symptoms and social functioning at follow-up. Similarly, caregivers' positive remarks at baseline were associated with improvement in negative and disorganized symptoms at follow-up, and warmth expressed by caregivers was associated with improved social functioning at follow-up. Although family members' critical comments were not related to patients' symptoms, the majority of critical remarks were focused on patients' negative symptoms and irritability/aggression, which may be important targets for early intervention. These preliminary results provide a first glimpse into the relationship between family factors and symptom development during the prodrome and suggest that positive family involvement predicts decreased symptoms and enhanced social functioning at this early stage. The finding that four-fifths of the youth enrolled in this early intervention clinical research program have shown symptomatic improvement by the three-month assessment point is very encouraging from an early detection/early intervention standpoint.

Preventing preschool externalizing behavior problems through video-feedback intervention in infancy

VELDERMAN, M. K., BAKERMANS-KRANENBURG, M. J., JUFFER, F., VAN IJZENDOORN, M. H., MANGELSDORF, S. C. & ZEVALKINK, J. (2006)

In the present study (1) intervention effects on children's preschool behavior problems were evaluated in a high risk sample with an overrepresentation of insecure adult attachment representations in 77 first-time mothers, and (2) predictors and correlates of child problem behavior were examined. Early short-term video-feedback intervention to promote positive parenting (VIPP) focusing on maternal sensitivity and implemented in the baby's first year of life significantly protected children from developing clinical Total Problems at preschool age. Also, compared with the control group, fewer VIPP children scored in the clinical range for Externalizing Problems. No intervention effects on Internalizing clinical problem behavior were found. The VIPP effects on Externalizing and Total clinical Problems were not mediated by VIPP effects on sensitivity and infant attachment or moderated by mother or child variables. Maternal satisfaction with perceived support appeared to be associated with less children's Internalizing, Externalizing, and Total Problems. More research is needed to find the mechanisms triggered by VIPP, but the outcomes could be considered as promising first steps in the prevention of disturbing, externalizing behavior problems in young children.

Relations between parent and adolescent problems among adolescents presenting for family-based marijuana abuse treatment

Kamon JL, Stanger C, Budney AJ, Dumenci L. (2006)

Family-based treatments for adolescent substance abuse demonstrate efficacy and are becoming a treatment of choice. Family risk factors for substance abuse may present barriers to or suggest targets for modification during treatment. The sample included 149 adolescents presenting for substance abuse treatment and their parents. Structural equation modeling tested the hypothesis that parent psychological problems, parent substance use, and parenting behaviors influence adolescent psychological problems and substance use. This study is among the first to examine the unique impact of maternal and paternal variables on adolescent problems within one analytical model. Results indicated that parental psychological problems were directly associated with adolescent psychological problems after controlling for parent substance use and parenting behaviors. Paternal positive involvement and poor monitoring were also independently associated with adolescent substance use. Results suggest that both mothers' and fathers' symptoms of psychopathology play an important role in the symptoms of adolescents in treatment for substance abuse. Findings highlight the need for family-based assessment in adolescent treatment populations to address important clinical and research questions.

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

Pakenham, K. I. and S. Bursnall (2006)

Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.

Relations between social support, appraisal, and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of a parent with MS and comparisons with children of healthy parents

Pakenham, K.I.. & Bursnall, S. (2006)

Abstract
OBJECTIVE:
To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents.
SUBJECTS:
A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability.
METHOD:
A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes.
RESULTS:
Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect.

Risk and resilience. Adaptation in changing times

Schoon, I. (2006)

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

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

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

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

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

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

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

Speech, language and aided communication: connections and questions in a developmental context

Smith, M. (2006)

PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.

Speech, language and aided communication: connections and questions in a developmental context

Smith, M. (2006)

Abstract
PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.

Standing guard - Being a relative to a hospitalised, elderly person

Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I. (2006)

Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.

Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology

Standing guard - Being a relative to a hospitalised, elderly person

Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I. (2006)

Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.

Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology

Stress and well-being among parents of children with rare diseases: a prospective interventions study.

Dellve, Lotta, Samuelsson, Lena, Tallborn, Andreas, Fasth, Anders & Hallberg, Lillemor (2006)

This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.
BACKGROUND:
Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders.
METHOD:
We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability.
RESULTS:
We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.
CONCLUSION:
Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.

Så länge jag minns finns du. En minnesbok för barn

Ida Gamborg Nielsen (2006)

En minnesbok för barn som förlorat en förälder, ett syskon eller någon annan närstående.

I boken finns frågor att skriva svar på, och svaren blir en hjälp att minnas. Här finns också plats att rita bilder och klistra in foton. Och många värdefulla tips, till exempel om att prata med andra som kände den saknade och kanske be någon av dem att skriva något.

Att arbeta med boken innebär att arbeta med sina minnen - både glada och svåra - och sin sorg över den man saknar. Boken innehåller texter och illustrationer från personer som själva förlorat någon närstående, t ex Barbro Lindgren, Pernilla Stalfelt och Ilon Wikland.

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

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

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

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

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

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

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

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

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

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

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

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

Background

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

Methods

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

Results

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

Conclusions

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

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

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

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

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

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

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

The kaleidoscope of communication: Different perspectives on communication involving children with severe multiple disabilities.

Olsson, C. (2006)

Avhandlingen består av sex publikationer om kommunikation och grava funktionsnedsättningar. Publikationerna presenterar ett teoretiskt ramverk, metodförslag och empiriska studier. Det teoretiska ramverket gäller generella aspekter på kommunikation och funktionsnedsättning medan de empiriska studierna fokuserar på barn i förskoleåldern vilka har utvecklingsstörning kombinerat med synnedsättning och/eller rörelsehinder. Syftet med avhandlingen är att samla kunskaper om hur barnen kommunicerar med sina vårdgivare, att analysera hur olika forskningsstrategier kan tillföra kunskaper från olika perspektiv och att utveckla modeller för att analysera och beskriva den dyadiska interaktionen.
Den teoretiska ramen tar upp hur barnets kommunikativa utveckling påverkas av multipla funktionsnedsättningar men också kommunikationspartners roll och vad som är betydelsefullt i åtgärdsarbetet. Den metodologiska ramen presenterar och jämför olika forskningsansatser och ett nytt sätt att studera och analysera kommunikation baserat på systemteori föreslås. I de empiriska studierna undersöks först sambanden mellan användning av kommunikativa funktioner och barnets funktionsnedsättningar samt hur situationen påverkar. Detta görs genom en kombinerad analysmodell som är både variabel- och person-inriktad. Sedan testas den föreslagna systemteoretiska analysen på två fallstudier av samspel mellan barn och vårdare.
Resultaten visar att användning av olika kommunikativa funktioner hade vissa samband med typ och grad av funktionsnedsättning hos de undersökta barnen men att det också fanns individuella mönster som skiljde sig från gruppresultatet. Det framkom dessutom att användningen av olika kommunikativa funktioner hade starkare samband med hur situationen såg ut än med vilka funktionsnedsättningar barnen hade. När det gällde undersökningarna av själva kommunikationsprocessen mellan barnet och den vuxne visade det sig att de båda kontinuerligt samordnande sig och att själva processen bestod av att tillsammans konstruera gemensamma ramar av samförstånd. Denna process genomgick kvalitativt olika faser som växlade mellan instabilitet och stabilitet. Användandet av systemteori som ett analysverktyg, gav upphov till tre modeller. Den första visar uppbyggnaden av en hierarkisk ordning av de gemensamma ramarna, den andra gäller dynamiken i processen och den tredje hur skiftet mellan olika faser sker i processen.
Diskussionen koncentreras kring hur resultaten från studierna tillsammans med de teoretiska aspekterna som framförts kan bidra till en erfarenhetsbaserad praxis. De huvudsakliga slutsatserna är att i ett kommunikativt samspel som involverar en person med flera grava funktionshinder så är kommunikationens mening något som konstrueras tillsammans av de båda parterna och därför kan kommunikation inte betraktas som en individuell kompetens kompetensen finns i dyaden.

The MetLife caregiving cost study: productivity losses to US business

MetLife (2006)

Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and
more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.

The Strengthening Washington D.C. Families Project: A Randomized Effectiveness Trial of Family-Based Prevention.

Gottfredson D, Kumpfer K, Polizzi-Fox D, Wilson D, Puryear V, Beatty P, et al. (2006)

The Strengthening Washington DC Families Project (SWFP) examined implementation fidelity and effectiveness when a selective, evidence-based prevention program was implemented with a sample of 715 predominantly African American families across multiple settings in an urban area. Using a true experimental design, this study reports on the differential effectiveness of four conditions (child skills training only, parent skills training only, parent and child skills training plus family skills training, and minimal treatment controls) in reducing child antisocial behavior and its precursors. Major challenges with recruitment and retention of participants and uneven program coverage were documented. No statistically significant positive effects for any of the program conditions were observed, and a statistically significant negative effect on child reports of Negative Peer Associations was observed for children of families assigned to the family skills training condition. Two marginally significant findings were observed: Child's positive adjustment favored families assigned to family skills training condition relative to minimal treatment and child training only, and family supervision and bonding was lower for children in family skills training than in the other three conditions. Hypotheses about potential explanations for the weaker than expected effects of this program are offered, as are thoughts about the infrastructure necessary to successfully implement family strengthening programs and the future of prevention science.

Losing a parent to suicide: Posttraumatic stress, sense of coherence and family functioning in children, adolescents and remaining parents before attending a grief support program

Anneli Silvén Hagström, Ulla Forinder, Emma Hovén (2024)

Parental suicide in childhood increases the risk of mental ill-health, substance use andpremature mortality, particularly through suicide. Postvention supports tailored to thewell-being and functioning of suicide-bereaved children and their remaining parents are thusof critical importance to counteract negative development. This explorative cross-sectionalstudy seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense ofcoherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) andparents (n = 40) before their attendance at a family-based grief support program. The resultsdemonstrate critical health outcomes for children and parents, and in particular for adolescents.Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and37% of parents. All groups showed lower SOC than the norm. Adolescents reporteddysfunctional family functioning for the dimensions Communication and AffectiveResponsiveness. Psychoeducational and trauma-informed support is recommended wherefamily communication and meaning construction of suicide is given special attention

Psychosocial effects on siblings of children with autism and mental retardation: a population-based study

Bågenholm, A. and C. Gillberg (1991)

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more 'stressful events'. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.

The Family Talk Intervention Among Families Affected by Severe Illness: Hospital Social Workers’ Experiences of Facilitators and Barriers to its Use in Clinical Practice

Ingrid Thermaenius, Camilla Udo, Anette Alvariza, Tina Lundberg, Maja Holm, Malin Lövgren (2024)

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs’ experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children’s hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs’ integration in the team and their possibility to organize their own work. The HSWs’ work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.

Ensamhet bland äldre partnervårdare: En översikt över aktuell kvantitativ och kvalitativ forskning

Lena Dahlberg, Mariam Kirvalidze (2024)

En stor del av den informella omsorgen ges av en partner till omsorgstagaren, som kan behöva stöd på grund av åldersrelaterade sjukdomar eller funktionsnedsättningar. Partnervårdare är ofta äldre själva och omsorgen kan ha negativa effekter på deras hälsa och välbefinnande. Samtidigt har ensamhet fått mer uppmärksamhet i forskningen som en viktig faktor för hälsa och välbefinnande, och ensamhet har även lyfts på den politiska agendan. I den här rapporten undersöks sambandet mellan partnervård och ensamhet hos personer i åldern 65 år och äldre, vilka faktorer som ökar risken för ensamhet i denna grupp, konsekvenser av ensamhet, och hur de själva upplever ensamhet.

Caring and Health of Close Family Members of Frail Older Persons Recently Discharged from Acute Hospital Care: A Comparative Cross-Sectional Study

Christina Bökberg , Tove Lindhardt, Eva Björkman, Gerd Ahlström (2024)

Abstract

Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods.

Vem hjälper den som hjälper? : att vara anhörig till någon med psykisk ohälsa

Nelson Martina (2024)

Att leva nära någon med psykisk ohälsa kan vara förknippat med oro, smärta och maktlöshet. Är det möjligt att själv må bra om ens förälder, syskon, barn eller partner mår dåligt? Som anhörig är det lätt att ta på sig andras smärta och lägga allt ansvar på sig själv. Men den som är anhörig behöver också få utrymme att hantera sina känslor och reaktioner. Hur ska man veta när har man gjort tillräckligt och när behöver man släppa taget?

Ungefär var fjärde svensk lider någon gång i livet av psykisk ohälsa vilket betyder många drabbade anhöriga. I den här boken varvas aktuell forskning med strategier för att minska stress, oro och hantera känslor av skuld och skam. Kom ihåg att du behöver ta hand om dig själv för att orka vara stöd åt någon annan.

Att bemöta familjer till barn med särskilda behov

Gunilla Klingberg, Ulrika Hallberg (2024)

Antalet familjer som har barn med särskilda behov ökar både i Sverige och internationellt. Forskning visar att familjemedlemmarna ofta löper stor risk för både psykisk och fysisk ohälsa på grund av den utsatta situation som de lever i. Men vad kan professionella inom vård och omsorg göra för att hjälpa dem?

Den här boken utgår från forskning och förmedlar både familjernas utsatthet och på vilket sätt de vill bli bemötta. Hur mår de anhöriga? Vilket stöd efterfrågar de? Och vilket stöd har de rätt att få, från såväl vård och omsorg som från socialtjänsten? I det avslutande kapitlet ger författarna konkreta råd och tips om kommunikation och bemötande till den yrkesverksamme som möter anhöriga till barn med särskilda behov.

Boken vänder sig till studerande vid utbildningar med fokus på barn och funktionsnedsättningar, till exempel inom socialt arbete och vård. Den kan även användas som ett diskussionsunderlag för vårdpersonal som i sitt dagliga arbete möter och arbetar med barn med särskilda behov och deras anhöriga

Om barn och sorg: en handbok

Atle Dyregrov, Martin Lytje (2022)

För ett barn som tvingas uppleva ett dödsfall eller livshotande sjukdom hos en nära anhörig, förändras livet för alltid. Avgörande för barnets fortsatta psykiska hälsa är att det finns vuxna i närheten som förmår att ge rätt stöd. Syftet med denna bok är att den ska fungera som en handbok för professionella och anhöriga runt barnet.

I Att möta barns sorg – en handbok beskrivs hur skilda typer av förluster ger olika konsekvenser, både på kort och längre sikt. Vanliga sorge­reaktioner och hanteringsstilar skildras, och hur sorgen förändras över tid. Boken tar också upp hur ett barns utvecklingsnivå påverkar dennes förståelse av sorg. I egna kapitel behandlas

• katastrofer, terror och barns sorg
• komplicerad sorg av rigid art som varar under lång tid
• att arbeta med familjer i sorg
• skolans stöd i sorgearbetet
• terapeutiskt arbete med barn i komplicerad sorg.

I boken ges konkreta råd om hur du som professionell eller anhörig kan stödja barnet; i hemmet, i skolan och i barnets andra relationer.

Att möta familjer inom vård och omsorg En samtalsmodell på systemisk grund rev. uppl.

Eva Benzein, Margaretha Hagberg, Carina Persson, Britt-Inger Saveman, Susanne Syrén (2023)

När en familjemedlem insjuknar eller drabbas av ohälsa påverkas övriga familjemedlemmar individuellt, men även familjen som enhet. Genom att använda modellen Hälsostödjande familjesamtal kan samtalsledare och familj tillsammans identifiera upplevda problem och de styrkor och resurser som finns tillgängliga för att hantera situationer med ohälsa och sjukdom. Modellen är därför en viktig del i omvårdnadsarbetet.

I denna reviderade och uppdaterade upplaga är vissa kapitel omarbetade, vissa är borttagna och två kapitel har tillkommit. Dessa behandlar centrala utgångspunkter relaterat till att lära familjecentrerad omvårdnad och för att implementera modellen i kliniskt arbete. Boken vänder sig till studenter inom vård och omsorg på grundläggande och avancerad nivå.

Boken kan med fördel även användas av samtliga yrkesgrupper inom vård och omsorg.

Another Chance Hope and Health for the Alcoholic Family

Wegscheider, S. (1986)

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

Attachment Behavior Q-Set: Revision 2.0.

WATERS, E. (1986)

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.

Seeking a care–life balance: family carers’ perspectives on how quality of life can improve when caring for an older person living with dementia

Kristin Häikiö, Jorun Rugkåsa (2024)

Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.

Loss of parent in childhood and adult psychiatric disorder: the role of lack of adequate parental care

Harris T., Brown G.W., & Bifulco A. (1986)

The inconclusiveness of the literature on the role of loss of parent in influencing psychiatric disorder in adulthood is well known. A number of reasons involving sampling, location and other methodological features, are given to account for these contradictory findings. A study specially designed to cope with these features is then described and basic results are reported. These indicate that, in a sample of women aged 18-65, loss of mother before the age of 17, either by death or by separation of one year or more, was associated with clinical depression in the year of interview. Loss of father by death was in no way associated with current depression, but separation from father showed a trend which, however, did not reach statistical significance. Control for other possible confounding factors did not change this patterning of results; these were further supported when psychiatric episodes earlier in adulthood were examined. Examination of the caregiving arrangements in childhood suggests that it is 'lack of care', defined in terms of neglect rather than simply hostile parental behaviour, which accounts for the raised rate of depression. Such 'lack of care' is more frequent after loss of mother than after loss of father.

The rules of bereavement: Are suicidal deaths different?

Calhoun, L.G., Selby, J.W., & Abernathy, C.B. (1986)

The present article describes two studies designed to identify some of the rules that may govern interactions with bereaved persons and whether those rules are different for suicidal deaths, as compared with death by accident or natural causes. In the first study, with university students, 28 rules were identified. The pattern of results suggests that the rules for suicide are more constraining; that is, judgments about the existence of social rules tend to be more inclusive and extreme, in a "should not do" direction, when the death is suicidal. In the second study, with adult citizens, 13 possible rules were examined. The pattern of results confirmed the findings obtained in the first study — that interacting with the survivors of a suicidal death was seen as a more constraining situation with a predominance of proscriptive rules. It was suggested that while individuals may feel greater compassion for the survivors of suicide, they may avoid the situation for fear of violating one of the proscriptive rules.

A Vicious Circle of Hope and Despair: Stigma Experienced by Relatives of Persons with Severe Mental Illness

Bente Weimand, Anita Johansson ,Nils Sjöström, Margda Waern & Mats Ewertzon (2024)

Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.

Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study

Maria Samuelsson, Jenny Jakobsson, Anne Wennick, Marie-Louise Lydrup, Mariette Bengtsson (2022)

Purpose: The purpose of the present study was to explore cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer.

Method: The study was designed as a qualitative study. Data was collected using individual semi-structured telephone interviews with 21 cancer specialist nurses. The interviews were transcribed and analysed with reflexive thematic analysis.

Results: The analysis generated one overarching theme, In the shadow of the person diagnosed with colorectal cancer, and four themes: striving for confidence, searching for ways to support, seeking individualization, and balancing between needs. Swedish colorectal cancer care is organized with the persons diagnosed with colorectal cancer as the centre of care and lacks both structure and allocated resources for supportive care for family members. Thus, support for family members has to be provided within the existing colorectal cancer care. The support provided focuses mainly on strengthening the family members' ability in the caregiving role and is offered primarily at the time of diagnosis.

Conclusion: There is an apparent need for developing supportive care plans for family members, involving repeated assessments of multidimensional needs, a tailored support, and follow-ups. Accordingly, a re-evaluation of the cancer specialist nurse's role is needed so that key nursing responsibilities are not ranked second to administrative tasks.

Keywords: Cancer specialist nurse; Colorectal cancer; Family members; Needs assessment; Nursing; Oncology; Qualitative research; Supportive care; Thematic analysis.

Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study

Maria Samuelsson, Jenny Jakobsson, Mariette Bengtsson, Marie-Louise Lydrup, Anne Wennick (2025)

Aim: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.

Design: A descriptive qualitative study with a phenomenographic approach.

Method: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.

Results: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.

Conclusion: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.

Impact: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.

Implications for the profession and/or patient care: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.

DET BLIR DYRARE ATT LEVA JU SJUKARE JAG ÄR

NSPH Nationell Samverkan för psykisk hälsa (2024)

En rapport från NSPH om livsvillkoren för personer med psykisk ohälsa och deras anhöriga och om brukarinflytande

NSPH Har tagit fram den här rapporten för att lyfta två viktiga områden för oss och våra medlemsorganisationer – om livsvillkoren för personer med psykisk ohälsa och deras anhöriga, samt arbetet med brukarinflytande.
För att få en överblick över dessa två områden har NSPH under 2024 genomfört två större undersökningar. Resultaten från undersökningarna presenteras i varsin del i denna rapport. En del med fokus på livsvillkor för personer med psykisk ohälsa och en del med fokus på arbetet med brukarinflytande. Målsättningen med undersökningarna har varit att kartlägga hur det ser ut idag inom dessa två områden och peka på utvecklingsområden framåt.

Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions

Therese Lindström, Tiina Holmberg Bergman, Mathilde Annerstedt, Martin Forster, Sven Bölte, Tatja Hirvikoski (2024)

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.

Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).

Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).

Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Needs of Grandparents of Preschool-Aged Children with ASD in Sweden

Zakirova Engstrand Rano, Roll-Pettersson Lise, Westling Allodi Mara, Hirvikoski Tatja (2020)

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

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

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

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

Executive functions

Diamond, A. (2013)

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

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

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

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

Maternal parenting behaviors and adolescent depression: The mediating role of rumination

Gaté, M. A., Watkins, E. R., Simmons, J. G., Byrne, M. L., Schwartz, O. S., Whittle, S., et al. (2013)

Substantial evidence suggests that rumination is an important vulnerability factor for adolescent depression. Despite this, few studies have examined environmental risk factors that might lead to rumination and, subsequently, depression in adolescence. This study examined the hypothesis that an adverse family environment is a risk factor for rumination, such that the tendency to ruminate mediates the longitudinal association between a negative family environment and adolescent depressive symptoms. It also investigated adolescent gender as a moderator of the relationship between family environment and adolescent rumination. Participants were 163 mother–adolescent dyads. Adolescents provided self-reports of depressive symptoms and rumination across three waves of data collection (approximately at ages 12, 15, and 17 years). Family environment was measured via observational assessment of the frequency of positive and aggressive parenting behaviors during laboratory-based interactions completed by mother-adolescent dyads, collected during the first wave. A bootstrap analysis revealed a significant indirect effect of low levels of positive maternal behavior on adolescent depressive symptoms via adolescent rumination, suggesting that rumination might mediate the relationship between low levels of positive maternal behavior and depressive symptoms for girls. This study highlights the importance of positive parenting behaviors as a possible protective factor against the development of adolescent rumination and, subsequently, depressive symptoms. One effective preventive approach to improving adolescent mental health may be providing parents with psychoeducation concerning the importance of pleasant and affirming interactions with their children. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Min mor slangen og mig

M. LaVilla Labial (2013)

Denna danska bilderbok bygger på vikten av att prata med barn när deras förälder eller annan vuxen som barnet bor tillsammans med drabbas av psykisk ohälsa.I slutet av boken diskuterar författaren effekterna för barnen och familjen i sin helhet då någon vuxen drabbas av ångest och/eller depression och vad det gör med familjen. Vilka situationer och frågeställningar som kan uppkomma och som behöver förklaras och besvaras för att barnen ska förstå vad som sker. Boken riktar sig till barn mellan 3-10 år.
Boken går att laddda ner på www.issuu.com

Prevalence of alcohol use before and during pregnancy and predictors of drinking during pregancy: a cross sectional study in Sweden.

Skagerström, J., Alehagen, S., Häggström-Nordin, E., Årestedt, K., & Nilsen, P. (2013)

Background

There is a paucity of research on predictors for drinking during pregnancy among women in Sweden and reported prevalence rates differ considerably between studies conducted at different antenatal care centres. Since this knowledge is relevant for preventive work the aim of this study was to investigate these issues using a multicenter approach.

Methods

The study was conducted at 30 antenatal care centers across Sweden from November 2009 to December 2010. All women in pregnancy week 18 or more with a scheduled visit were asked to participate in the study. The questionnaire included questions on sociodemographic data, alcohol consumption prior to and during the pregnancy, tobacco use before and during pregnancy, and social support.

Results

Questionnaires from 1594 women were included in the study. A majority, 84%, of the women reported alcohol consumption the year prior to pregnancy; about 14% were categorized as having hazardous consumption, here defined as a weekly consumption of > 9 standard drinks containing 12 grams of pure alcohol or drinking more than 4 standard drinks at the same occasion. Approximately 6% of the women consumed alcohol at least once after pregnancy recognition, of which 92% never drank more than 1 standard drink at a time. Of the women who were hazardous drinkers before pregnancy, 19% reduced their alcohol consumption when planning their pregnancy compared with 33% of the women with moderate alcohol consumption prior to pregnancy. Factors predicting alcohol consumption during pregnancy were older age, living in a large city, using tobacco during pregnancy, lower score for social support, stronger alcohol habit before pregnancy and higher score for social drinking motives.

Conclusions

The prevalence of drinking during pregnancy is relatively low in Sweden. However, 84% of the women report drinking in the year preceding pregnancy and most of these women continue to drink until pregnancy recognition, which means that they might have consumed alcohol in early pregnancy. Six factors were found to predict alcohol consumption during pregnancy. These factors should be addressed in the work to prevent alcohol-exposed pregnancies.

Preventive interventions and sustained attachment security in maltreated children

STRONACH, E. P., TOTH, S. L., ROGOSCH, F. & CICCHETTI, D. (2013)

Thirteen-month-old maltreated infants (n = 137) and their mothers were randomly assigned to one of three conditions: child-parent psychotherapy (CPP), psychoeducational parenting intervention (PPI), or community standard (CS). A fourth group of nonmaltreated infants (n = 52) and their mothers served as a nonmaltreated comparison (NC) group. A prior investigation found that the CPP and the PPI groups demonstrated substantial increases in secure attachment at postintervention, whereas this change was not found in the CS and the NC groups. The current investigation involved the analysis of data obtained at a follow-up assessment that occurred 12 months after the completion of treatment. At follow-up, children in the CPP group had higher rates of secure and lower rates of disorganized attachment than did children in the PPI or the CS group. Rates of disorganized attachment did not differ between the CPP and the NC groups. Intention to treat analyses also showed higher rates of secure attachment at follow-up in the CPP group relative to the PPI and the CS groups. However, groups did not differ on disorganized attachment. Both primary and intention to treat analyses demonstrated that maternal-reported child behavior problems did not differ among the four groups at the follow-up assessment. This is the first investigation to demonstrate sustained attachment security in maltreated children 12 months after the completion of an attachment theory informed intervention. The findings also suggest that, although effective in the short term, parenting interventions alone may not be effective in maintaining secure attachment in children over time.

Prognoser i tvångsvårdsärenden om omsorgssvikt

Alexius, K. (2013)

This study set out to analyze how background-context, prognoses and evidence-based facts are referred to in child welfare investigations and judgments concerning coercive care of neglected children. The texts of social investigations and court judgments in 16 cases concerning parents (30) and their children (29) in two counties in Sweden were analyzed by a hermeneutic case study. All cases concerns section 2 in The Care of Young Persons (Special Provisions) Act (1990:52), which states that coercive care shall be decided if, due to neglect or some other situations, there is a "palpable risk of detriment" to the child's health or development. Theoretical framework of sociology of law and of normative legalism were used. The study shows that background-context, prognoses and evidence-based facts seldom are connected in the texts. Background-contexts quantitively dominates, while prognoses are vestigial and rarely enunciates as emanating from evidence-based facts. Instead of describing risk-assessments a plurality of the descriptions in the texts pictures the children as already harmed by neglect. The conclusion of the study is that the sociological conceptions of "a palpable risk" differ a great deal from the legal-theoretical interpretation of the concept.

Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analy

Jervaeus, A., Kottorp, A., & Wettergren, L. (2013)

There is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from persons without this experience, to fully understand the impact and complexity of childhood cancer in regard to different aspects of quality of life. The aim of this study was to evaluate the psychometric properties of KIDCSREEN-27 for use with survivors of childhood cancer.

Methods
KIDSCREEN-27 consists of five dimensions measuring health-related quality of life (HRQoL) in children and adolescents; 63 survivors, (4–6 years post- diagnosis) aged 12–22 and 257 from a comparison group were assessed. KIDSCREEN-27 was evaluated using a Rasch Partial Credit Model (PCM). The aspects studied were the properties of the rating scale including threshold values, internal scale validity, unidimensionality, person response validity, and differential item functioning (DIF) comparing the survivors with peers.

Results
The rating scales revealed almost expected patterns of responses, and the threshold ordering for two of three rating scales displayed acceptable results. The items demonstrated acceptable goodness-of-fit MnSq values in 23 of 27 items (85.2%). The explained variance within each dimension was above the set criterion (50%) for all dimensions except Autonomy & Parent Relations (39.8%). Person goodness-of-fit showed acceptable results in four of five dimensions. No DIF was detected with regard to cancer experience (survivors/comparison group).

Conclusions
Based on the performed Rasch analysis, KIDSCREEN-27 is recommended, with the exception of Autonomy & Parent Relations, due to non-satisfactory unidimensionality, for use among adolescents and young adults who have survived childhood cancer. Still, it is recommended that future research should include a larger sample of childhood cancer survivors in order to monitor some items more thoroughly and explore different levels and patterns of HRQoL in KIDSCREEN-27.

Reciprocity and Social Capital in Sibling Relationships of People With Disabilities

Kramer J, Hall A, Heller T. (2013)

Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, "How do siblings support each other after parents no longer can provide care to the person with IDD?" Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.

Reciprocity in relationships and support between grandparents and grandchildren: An Icelandic example

Sigurdadottir, S. H. and S. Juliusdottir (2013)

This study explores and discusses the relationships between grandchildren and grandparents with an emphasis on the reciprocal, practical, emotional, and financial support that is provided between generations. Two independent surveys were conducted in Iceland, one of grandparents aged 65 years and older (n = 206) and one of grandchildren among college students (n = 648). The questions used were the same. The results indicated that there is a certain consistency in the pattern of views of the younger toward the older generation and the other way around. These findings are discussed in relation to family development and the value of intergenerational relationships and support.

Research Design (International Student Edition) - Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed.

Creswell JW. (2013)

The eagerly anticipated Fourth Edition of the title that pioneered the comparison of qualitative, quantitative, and mixed methods research design is here! For all three approaches, Creswell includes a preliminary consideration of philosophical assumptions, a review of the literature, an assessment of the use of theory in research approaches, and refl ections about the importance of writing and ethics in scholarly inquiry. He also presents the key elements of the research process, giving specifi c attention to each approach. The Fourth Edition includes extensively revised mixed methods coverage, increased coverage of ethical issues in research, and an expanded emphasis on worldview perspectives.

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

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

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

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

Heimdal K, Karlsson P. (2013)

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

Evaluation of a Swedish version of the Strengthening Families Programme

Skärstrand E, Sundell K, Andréasson S. (2014)

BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.

Everyday life in families with a child with ADHD and public health nurses’ conceptions of their role

Larsen Moen Ö. (2014)

Akademisk Avhandling

Aim: The overall aim of this thesis was to describe and explore everyday life in families
with a child with ADHD and public health nurses' role in relation to these families.
Methods: An explorative and descriptive design with qualitative and quantitative
methods was used. In Study I, data was collected with individual interviews with nine
parents, and analyzed using phenomenology. In Study II, data was collected with
individual interviews with 17 family members, and analyzed with phenomenography. In
Study III, data was collected with a questionnaire responded by 265 parents, and analyzed
with statistics. In Study IV, data was collected with group- and individual interviews with
19 public health nurses, and analyzed with phenomenography.
Main findings: The families' everyday life was influenced by living in unpredictability,
though they were striving for predictability. The experience of being a parent was
described as contending and adapting every day, like windsurfing in unpredictable waters.
The parents were balancing between maintaining self and parenthood (I). The family tried
to safeguard a functioning family in managing everyday life and developing special skills,
both within the family and the society. They fought for acceptance and inclusion, in
relation to the social network and professionals. The siblings were both agitators and
diplomats, and their social life was affected (II). Cooperation with professionals was
cumbersome and a relationship built on openness, support, trust and guidance was
essential for cooperation (I, II). Parents' sense of coherence, children's behavior, support
from social networks and community health services had all an impact on family
functioning. In families with children being medicated for ADHD, parents reported less
behavioral problems in their child, better family functioning and more social support than
parents with non-medicated children (III). The PHNs described their role as both a
peripheral and a collaborating partner and they asked for guidelines and multidisciplinary
collaboration (IV).
Conclusions: Everyday life in families with ADHD is both demanding and giving.
Acceptance and support from the social network and supervision from professionals are
essential. The public health nurse is in a unique position to support and supervise these
families.

Factors that may facilitate or hinder a family-focus in the treatment of parents with a mental illness

Lauritzen, C., Reedtz, Ch., van Doesum, K., & Martinussen, M. (2014)

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.

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

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

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

Family Health Conversations: How Do They Support Health?, Nursing Research and practice

Persson, C., & Benzein, E. (2014)

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

Family Intervention: Telephone Tracking (FITT): A Pilot Stroke Outcome Study

Bishop D, Miller I, Weiner D, Guilmette T, Mukand J, Feldmann E, et al. (2014)

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

From Broken Attachments to Earned Security: The Role of Empathy in Therapeutic Change (The John Bowlby Memorial Conference Monograph Series)

ODGERS, A. (2014)

The 2011 John Bowlby Memorial Conference, 'From Broken Attachments to Earned Security - The Role of Empathy in Therapeutic Change', focussed on what needs to take place to facilitate empathy and attunement and ultimately the achievement of earned security. The confernce posed the challenge of how to re-establish a secure sense of self, mutuality, and the capacity for inter/intra-subjectivity when difficulties in empathy and attunement exist as a result of relational trauma. This can be between parent and child, within adult relationships, between client and therapist, or in organisational contexts.

The outstanding collection of papers in this volume make a significant contribution to the field of attachment and our understanding of how child rearing affects each aspect of our lives, from the interpersonal to the organisational and societal. Each paper moves beyond the academic and theoretical to provide answers to the many difficult questions raised at the conference.

The practical, sometimes step-by-step explanation of the use of empathy in one-to-one clinical work, in health service organisations or society generally, offer a positive and hopeful way forward. All of the presenters faced up to the challenges of repairing or reversing the impact of derailed attachments and the toxic impact of trauma, offering a realistic but hopeful route to improved relating and healthier attachments.

This publication will be a valuable resource for students, seasoned practitioners, and health service professionals alike who want to enhance their understanding of empathy and attachment in this demanding field.

Subject areas covered by your book in order of importance and key subject area:

- causes of insecure attachments

- impact of relational trauma

- how to re-establish a secure sense of self

- working one to one and in organisational settings

Får hundar korvar i himlen?

Sara Galli, Mats Molid (2014)

Alva har en hund Musse. Musse är inte bara en hund, Alva ser Musse som en storebror också. När Alva får höra att Musse är gammal och inte kommer att leva länge till blir Alva både ledsen och arg, hon vill att han ska leva för alltid. Det är ju honom hon har som bästa vän och som hon berättar alla hemlisa för! Alva funderar över hur det ska gå till när Musse ska dö och vad händer med honom efteråt? Alva inser till slut att han inte försviner helt. Han finns ju kvar inom henne, lite i köket och kanske även i himlen.

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

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

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

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

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

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

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

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

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

I kroppen min : vägsjäl

Gidlund, Kristian (2014)

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

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

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

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

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

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

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

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

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

ICF and ICF-CY lessons learned: Pandora’s box of personal factors. Disability and Rehabilitation.

Simeonsson RJ, Lollar D, Björck-Åkesson E, Granlund M, Brown SC, Zhuoying Q, et al. (2014)

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

Impact of fear of falling for Patients and Caregivers. Perceptions before and after Participation in Vestibular and Balance Rehabilitation Therapy

Honaker JA, Kretschmer LW (2014)

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

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

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

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

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

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

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

Perspektiv på en skola för alla.

Brodin J, Lindstrand P. (2010)

Perspektiv på en skola för alla
Frågan om en skola för alla eller inkluderande undervisning väcker många känslor och tankar. Vad betyder egentligen en skola för alla och hur förhåller vi oss till den? Är inklusion bara ett politiskt, socialt och ideologiskt mål eller betyder det någonting mer? I denna reviderade upplaga presenterar författarna nya forskningsrön om inkludering.

Poly-Victimization in a National Sample of Children and Youth

Turner, H. A., Finkelhor, D., & Ormrod, R. (2010)

Abstract
BACKGROUND:
Most studies of children's exposure to violence focus on separate, relatively narrow categories of victimization (such as sexual abuse, physical maltreatment, or bullying), paying less attention to exposure to multiple forms of victimization.
PURPOSE:
This study documents children's lifetime exposure to multiple victimization types (i.e., "poly-victimization") and examines the association between poly-victimization and extent of trauma symptomatology.
METHODS:
Analyses were based on telephone interviews conducted between January 2008 and May 2008 with a nationally representative sample of 4053 children aged 2-17 years and their caregivers.
RESULTS:
Exposure to multiple forms of victimization was common. Almost 66% of the sample was exposed to more than one type of victimization, 30% experienced five or more types, and 10% experienced 11 or more different forms of victimization in their lifetimes. Poly-victims comprise a substantial portion of the children who would be identified by screening for an individual victimization type, such as sexual assault or witnessing parental violence. Poly-victimization is more highly related to trauma symptoms than experiencing repeated victimizations of a single type and explains a large part of the associations between individual forms of victimization and symptom levels.
CONCLUSIONS:
Studies focusing on single forms of victimization are likely to underestimate the full burden of victimization that children experience and to incorrectly specify the risk profiles of victims. Research, clinical practice, and intervention strategies are likely to improve with more comprehensive assessments of victimization exposure.

Predicting Posttraumatic Stress Symptoms in Children Following Hurricane Katrina:A Prospective Analysis of the Effect of Parental Distress and Parenting Practices

Kelly, M.-L., Self-Brown, S., Lee, B., Bossoin, J. V., Hernandes, B. C., & Gordon, A. T. (2010)

Research exhibits a robust relation between child hurricane exposure, parent distress, and child posttraumatic stress disorder (PTSD). This study explored parenting practices that could further explicate this association. Participants were 381 mothers and their children exposed to Hurricane Katrina. It was hypothesized that 3–7 months (T1) and 14–17 months (T2) post-Katrina: (a) hurricane exposure would predict child PTSD symptoms after controlling for history of violence exposure and (b) hurricane exposure would predict parent distress and negative parenting practices, which, in turn, would predict increased child PTSD symptoms. Hypotheses were partially supported. Hurricane exposure directly predicted child PTSD at T1 and indirectly at T2. Additionally, several significant paths emerged from hurricane exposure to parent distress and parenting practices, which were predictive of child PTSD.

Prenatal alcohol exposure and neurodevelopmental disorders in children adopted from eastern Europe.

Landgren M, Svensson L, Strömland K, Andersson Grönlund M. (2010)

OBJECTIVES:
The purposes of this investigation were to determine the frequencies of and associations between different neurodevelopmental disorders and to study the potential lasting effects of alcohol on children adopted from eastern Europe.
METHODS:
In a population-based, prospective, observational, multidisciplinary, cross-sectional, cohort study of 71 children adopted from eastern Europe, children were assessed 5 years after adoption, from pediatric, neuropsychological, and ophthalmologic perspectives.
RESULTS:
Fetal alcohol spectrum disorders, that is, fetal alcohol syndrome (FAS), partial FAS, and alcohol-related neurodevelopmental disorders, were identified for 52% of children; FAS was found for 30%, partial FAS for 14%, and alcohol-related neurodevelopmental disorders for 9%. Alcohol-related birth defects were found for 11% of children, all of whom also were diagnosed as having FAS. Mental retardation or significant cognitive impairment was found for 23% of children, autism for 9%, attention-deficit/hyperactivity disorder for 51%, and developmental coordination disorder for 34%.
CONCLUSIONS:
Fetal alcohol spectrum disorders and neurodevelopmental disorders were common in this long-term follow-up study of children adopted from orphanages in eastern Europe. Maternal alcohol consumption during pregnancy has long-lasting adverse effects, causing structural, behavioral, and cognitive damage despite a radically improved environment.

Pre‐school teachers’, other professionals’, and parental concerns on cooperation in pre‐school – all around children in need of special support: the Swedish perspective

Sandberg, Anette & Ottosson, Lisbeth (2010)

The aim of this study was to discover and describe parents', pre‐school teachers', and other professionals' experiences of cooperation regarding children in need of special support. It is a topic that arouses many different feelings and experiences. This study has a qualitative procedure with a phenomenological approach. The data collection in this study consists of interviews from 20 participants. It becomes apparent that pre‐school teachers lack training in cooperation, as well as that further education has not been available to any mentionable extent. In this study it becomes clear that there is a large difference between various pre‐schools regarding knowledge and motivation to provide the extra support that many children need. This study also shows that accessibility to and information from other professionals to parents is basic for them to feel safety and support. Different aspects of cooperation are highlighted and discussed.

Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey

Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A. (2010)

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey

Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A. (2010)

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Prevalence and characteristics of child physical abuse in Sweden – findings from a population-based youth survey

Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A. (2010)

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Program för att förebygga psykisk ohälsa hos barn : En systematisk litteraturöversikt

Anttila, S., E. Clausson, et al. (2010)

Det är angeläget att finna metoder för att förebygga psykisk ohälsa hos barn. Det finns tecken på att psykisk ohälsa hos barn kan ha ökat under de senaste decennierna och strukturerade insatser för att komma till rätta med problemen blir allt vanligare såväl inom kommunal verksamhet som inom hälso- och sjukvård. Interventionen utgörs av så kallade program som är standardiserade och finns beskrivna i manual eller motsvarande. Här sammanfattas det vetenskapliga underlaget för två typer av program: dels de som främst syftar till att förebygga utagerande beteenden hos barn och ungdomar, dels de som i första hand syftar till att förebygga inåtvända problem som ångest, depression och självskadebeteende. Program som har en allmänt hälsobefrämjande effekt, t ex för att förebygga drogmissbruk och våldshandlingar ingår följaktligen inte. Programmen är avsedda att ha effekt, inte bara direkt efter att programmet har avslutats utan även i framtiden. Rapporten har tagits fram på förfrågan av Kungliga Vetenskapsakademien och UPP-centrum (Utvecklingscentrum för barns psykiska hälsa) vid Socialstyrelsen. Båda har efterfrågat en systematisk litteraturöversikt för att klarlägga nyttan med att använda program för att förebygga psykisk ohälsa hos barn. Slutsatser:- Av 33 bedömda standardiserade och strukturerade insatser (program) som syftar till att förebygga psykisk ohälsa hos barn har sju ett begränsat vetenskapligt stöd i den internationella litteraturen. Det är föräldrastödsprogrammen Incredible Years och Triple P, familjestödsprogrammet Family Check-Up samt skolprogrammen Good Behavior Game, Coping Power, Coping with Stress och FRIENDS. Effekterna är med få undantag små. Studierna är utförda i andra länder. Eftersom effekterna sannolikt varierar med sociala och kulturella sammanhang är det oklart i vilken utsträckning som programmen kan överföras till Sverige med bibehållen effekt. Programmen kan också behöva anpassas så att de överensstämmer med svenska värderingar och syn på barns rätt.- I Sverige används ett hundratal olika program för att förebygga psykisk ohälsa hos barn, i huvudsak av utagerande typ. Inget av dem har utvärderats i Sverige i randomiserade studier med minst sex månaders uppföljning. Programmen De otroliga åren (översatt från Incredible Years), Triple P och Family Check-Up har enligt internationella studier begränsat vetenskapligt stöd för förebyggande effekt. Programmen KOMET, COPE, SET, StegVis, Beardslees familjeintervention, Connect och DISA har undersökts i minst en kontrollerad studie vardera men har inte tillräckligt vetenskapligt stöd för förebyggande effekt. Övriga program som används i Sverige är inte vetenskapligt utprövade som preventionsprogram.- Program som bygger på att ungdomar med utagerande problem träffas i grupp kan öka risken för normbrytande beteenden. Andra negativa effekter för såväl program för utagerande som för inåtvända problem är tänkbara men ofullständigt belysta.- Det behövs randomiserade studier som undersöker om de program som används har förebyggande effekt i svenska populationer och inte medför risker. Det behövs också hälsoekonomiska studier som undersöker om programmen är kostnadseffektiva.

Qualitative study on the impact of falling in frail older persons and family caregivers: Foundations for an intervention to prevent falls

Faes M, Reelick M, Joosten-Weyn Banningh L, de Gier M, Esselink R, Olde Rikkert M. (2010)

Abstract
Objectives: The primary aim of this study was to explore the impact of falling for frail community-dwelling older persons with and without cognitive impairments who have experienced a recent fall and their primary family caregivers. The secondary aim was to define components for a future fall prevention programme.

Methods: Grounded theory interview study, with 10 patients (three cognitively unimpaired, four with mild cognitive impairment and three with dementia) and 10 caregivers.

Results: All patients described a fear of falling and social withdrawal. Caregivers reported a fear of their care recipient (CR) falling. Most patients were unable to name a cause for the falls. Patients rejected the ideas that falling is preventable and that the fear of falling can be reduced. Some caregivers rated the consequences of their CRs' cognitive problems as more burdensome than their falls and believed that a prevention programme would not be useful because of the CRs' cognitive impairment, physical problems, age and personalities.

Conclusion: Falling has major physical and emotional consequences for patients and caregivers. A fall prevention programme should focus on reducing the consequences of falling and on promoting self-efficacy and activity. The causes of falls should be discussed. The programme should include dyads of patients and caregivers because caregivers are highly involved and also suffer from anxiety. Before beginning such a programme, providers should transform negative expectations about the programme into positive ones. Finally, caregivers must learn how to deal with the consequences of their CRs' falling as well as their cognitive impairment.

Randomized Controlled Trial of a Cognitive–Behavioral Therapy for At-risk Korean Male Adolescents

Hyun M-S, Nam KA, Kim M-A. (2010)

This study examined the effects of cognitive behavioral therapy (CBT) aimed at enhancing the resilience of high-risk adolescents with alcohol-dependent parents in Suwon, South Korea. The study used a randomized control group pretest and posttest design. The experimental group participated in 10 sessions of CBT, and the scores on resilience increased significantly after the intervention, whereas the scores of self-concept and depression did not change. In the control group, none of the scores of outcome variables changed significantly after the intervention period. The results indicate that the developed CBT program might be effective for improving the resilience of adolescents with alcohol-dependent parents.

Six-year follow-up of a preventive intervention for parentally bereaved youths

Sandler, I., Ayers, T.S., Tein, J., Wolchik, S., Millsap, R., Khoo, S.T., . . . Coxe, S. (2010)

Abstract
OBJECTIVE:
To evaluate the efficacy of the Family Bereavement Program (FBP) to prevent mental health problems in parentally bereaved youths and their parents 6 years later.
DESIGN:
Randomized controlled trial.
SETTING:
Arizona State University Prevention Research Center from November 2002 to July 2005.
PARTICIPANTS:
Two hundred eighteen bereaved youths (89.34% of 244 enrolled in the trial 6 years earlier) and 113 spousally bereaved parents.
INTERVENTIONS:
The FBP includes 12 group sessions for caregivers and youths; the literature control (LC) condition includes bereavement books for youths and caregivers.
MAIN OUTCOME MEASURES:
Comparisons of youths in the FBP and LC on a measure of mental disorder diagnosis, 5 measures of mental health problems, and 4 measures of competent functioning; and comparisons of spousally bereaved parents on 2 measures of mental health problems.
RESULTS:
Youths in the FBP as compared with those in the LC had significantly lower externalizing problems as reported by caregivers and youths (adjusted mean, -0.06 vs 0.13, respectively; P = .02) and on teacher reports of externalizing problems (adjusted mean, 52.69 vs 56.27, respectively; P = .001) and internalizing problems (adjusted mean, 47.29 vs 56.27, respectively; P = .002), and they had higher self-esteem (adjusted mean, 33.93 vs 31.91, respectively; P = .005). Parents in the FBP had lower depression scores than those in the LC (adjusted mean, 5.48 vs 7.83, respectively; P = .04). A significant moderated program effect indicated that for youths with lower baseline problems, the rate of diagnosed mental disorder was lower for those in the FBP than in the LC.
CONCLUSION:
This study demonstrates efficacy of the FBP to reduce mental health problems of bereaved youths and their parents 6 years later.

Social rapport 2010

Socialstyrelsen (2010)

Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.

Social rapport 2010

Socialstyrelsen (2010)

Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.

Structural Ecosystems Therapy for recovering HIV-positive women: Child, mother and parenting outcomes

Mitrani, V.B., McCabe, B.E., Robinson, C., Weiss-Laxer, N.M., & Feaster, D.J. (2010)

This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.

Structural Ecosystems Therapy for recovering HIV-positive women: child, mother, and parenting outcomes

Mitrani VB, McCabe BE, Robinson C, Weiss-Laxer NS, Feaster DJ (2010)

This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.

Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties

Emms, L., & Gardner, H. (2010)

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties

Emms, L., & Gardner, H. (2010)

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

Stöd för anhöriga till personer med demenssjukdom. Fokusrapport.

Stål Söderberg, E. (2010)

Hur är det att vara anhörigtill en person med demenssjukdom? Vilket stöd ges från sam-hällets sida och överensstämmer det med de verkliga behoven? Hur upplever vårdpersonaloch biståndshandläggare det är att stödja anhöriga? Var finns problemen, och hur ska vigöra för att lösa dem? Det är några av de frågor vi har ställt och försöker ge svar på i dennafokusrapport. Demens beskrivs ofta som de anhörigas sjukdomeftersom de förändringar som följer medsjukdomsutvecklingen starkt påverkar livskvaliteten även för de anhöriga. De anhöriga, somofta själva är äldre, har en avgörande roll när det gäller vården av personer med demens-sjukdom.1Invanda mönster och maktförhållanden förändras i en familj när någon insjuknari demenssjukdom.2Att vårda en närstående är vanligt i åldrarna 75 till 84 år, ungefär likamånga män som kvinnor.3Att vara anhörig till en person med demenssjukdom påverkar hälsa, social situation, eko-nomi, livskvalitet och levnadsvillkor i hög grad.Ett flertal studier visar att anhöriga somvårdar en person med Alzheimersjukdom löper en ökad risk för depression4. Data från stu-dier visade att inflyttningen på särskilt boende kan framflyttas med sex månader om anhö-riga erbjuds stöd och hjälp när den demenssjuka fortfarande bor hemma. Välinformeradeoch kunniga anhöriga är en tillgång för både landsting och kommun. Från den 1 juli 2009 är kommunens skyldighet att ge stöd till anhöriga förtydligad genomen ändring i socialtjänstlagen. Kommunal hälso- och sjukvård och socialtjänst ska er-bjuda ett individuellt anpassat stöd till anhöriga, men också arbeta för att se, respektera ochsamarbeta med anhöriga.6Landstinget har ingen uttalad skyldighet att stödja anhöriga men har i uppdrag att svara förförebyggande hälso- och sjukvård enligt 2 c § Hälso- och sjukvårdslagen. Det innebärbland annat att identifiera personer eller grupper som riskerar att drabbas av ohälsa. Hälso-och sjukvården har en otydlig roll i dagens anhörigstöd. Sedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närbehov finns ska en gemensam individuell plan upprättas för personer med psykiska funk-tionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga.De behov som anhöriga till personer med demenssjukdom har, liknar i stor utsträckning be-hoven som andra anhöriga har, det vill säga där det handlar om andra svåra kroniska sjuk-domar eller psykiska funktionshinder. Nästan oavsett vilka sjukdomstillstånd det handlar om innebär vardagen som anhörig ett stort antal utmaningar där samhället måste erbjudastöd och hjälp. I Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010"belyses hela vårdkedjan - över huvudmannaskapsgränserna. I riktlinjerna framgår hur deolika aktörerna bör strukturera sitt arbete för att kunna säkra god och jämförbar vård förpersoner med demens. I de nationella riktlinjerna lyfts begreppet personcentrerad omvårdnadfram, det vill sägaatt omhändertagandet av personer med demenssjukdom i möjligaste mån ska individanpas-sas. Flertalet anhöriga anser att personal inom vård och omsorg inte tar tillvara anhörigaskunskap om deras närstående. För att lyckas med det krävs att företrädare från kommuneroch landsting betraktar anhöriga som samarbetspartners. På så sätt ökas självkänslanhos anhöriga och främjar deras självständighet. Det bidrar också till att man inom kommunoch landsting får en korrekt bild av vad som behövs i ett fungerande anhörigstöd.Olika typer av tekniska hjälpmedel kan även vara till stor hjälp för den anhöriga och bevaraden demenssjuke personens oberoende så länge som möjligt. Idag förskrivs sällan hjälpme-del för patientgruppen med demenssjukdom.I denna fokusrapport redovisas en sammanställning av material insamlat från Socialstyrelsen,Länsstyrelsen i Stockholm, "Stiftelsen Äldrecentrum" och "Nationellt kompetenscentrumAnhöriga" samt en ny kartläggning bestående av fokusgruppsintervjuermed anhöriga,distriktssköterskor, biståndshandläggare och personal på minnesmottagningar i länet. Enkartläggning som visar att: -Anhöriga är i behov av mer stöd och avlastning än de i dagsläget erbjuds.- Många anhöriga tycker att det är svårt att veta vem de ska vända sig till för att få hjälp eftersom det finns flera huvudmän. - Det finns brist i kompetens hos personal som vårdar personer med demens.- Företrädare inom såväl kommun som landsting anser att det behövs en tydligare be-skrivning av vem som ansvarar för vad ifråga om personer med demens, samt en önskan om fler och bättre samverkansformer för att förhindra att personer med demens"faller mellan stolarna". - Vårdpersonal och biståndshandläggare uttrycker önskemålet om att det borde finnas en funktion/roll som är huvudansvarig för varje person med demenssjukdom, och somkan följa denna/denne genom hela vårdkedjan. Resultaten som presenteras i denna rapport är en sammanvägning av allt material somnämns ovan, dvs en analys av kartläggningens olika delmoment: litteraturgenomgång ochfokusgruppsintervjuer. FörbättringsområdenInformation och utbildning till anhörigaUtbildningsprogram till anhöriga kan minska stress och risk för såväl fysisk som psykiskohälsa, och öka deras förmåga att hantera beteendemässiga problem. Utbildning kan ges iform av kontinuerlig och strukturerad information om demenssjukdomar, bemötande ochvilket stöd samhället erbjuder till anhöriga. Utbildningen kan ges individuellt eller i grupp.Primärvården och distriktssjuksköterskan har en viktig roll i fråga om anhörigstöd som be-höver förtydligas särskilt med tanke på att strukturerad anhörigutbildning med psykosocialtstöd ännu inte är rutinförfarande.Såväl kommuner som landsting behöver ge tydligare information om hur ansvarsfördel-ningen ser ut på sina respektive webbplatser. Broschyrmaterial behöver också arbetas framför att finnas tillängligt på de platser där anhöriga och närstående vistas. Det finns flera pa-tient- och frivilligorganisationer som gör viktiga insatser för människor med demenssjuk-dom. Ett utvecklat samarbete med patientorganisationer är angeläget eftersom de har storkunskap inom området och arrangerar utbildningar och konferenser.Utveckling av stödformerStöd till anhöriga finns i olika former: avlösning i hemmet, dagverksamhet, tillfälligt bo-ende, nätverk, tekniska hjälpmedel, utbildning, psykosocialt stöd och hemtjänst. Det är vik-tigt att man fortsätter att utveckla stödformer av alla slag – men framförallt att de erbjudstill alla som har behov. När det gäller yngre personer med demenssjukdom behövs det flerplatser inom dagverksamhet.Tydligare ansvarsfördelningFör att demenssjuka och deras anhöriga ska ha en fungerande vardag behövs klarare lokalariktlinjer och tydligare rollfördelning mellan landsting och kommuner. Att det finns flerahuvudmän som ansvarar för patientgruppen är ett stort problem. Vård och omsorgsgivareinom Stockholms läns landsting och kommunerna behöver tillsammans arbeta fram en an-svarsfördelning förtydligad i lokala vårdprogram. Exempelvis bör stödet till anhöriga fin-nas med i uppdraget både för minnesmottagningarna och husläkarverksamheten så attverksamheterna stödjer varandra och vårdkedjan hänger ihop. Samordnande kontaktpersonSamtliga parter i vård- och omsorgsarbetet kring personer med demens och även anhöriga,efterlyser en samordnande kontaktperson som kan fungera som "spindeln i nätet", somskulle kunna sköta kontakterna mellan primärvård/landsting och omsorg/kommun. En mo-dell finns i Kalmar där distriktssjuksköterskan är processansvarig för utredningen. Ävenanhörigstöd ligger under distriktssköterskans ansvar, vilket innebär att hon anordnar utbild-ningsträffar för anhöriga. Innehållet i stödet omfattas av medicinsk information, bemötandeoch andra råd och tips. Vid utbildningsträffarna deltar även kommunens handläggare somger information om hjälpinsatserna och olika boendeformer. Gemensam vård och omsorgsplanering samt årlig uppföljningSedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närdet finns behov ska en gemensam individuell plan upprättas för personer med psykiskafunktionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga för attbehoven av både hälso- och sjukvård och socialtjänst ska tillgodoses. Dokumentet skaockså beskriva de olika insatser och vårdgivarnas ansvar.Hälso- och sjukvården och socialtjänsten bör minst en gång per år följa upp sjukdomensförlopp och anpassa läkemedel, vård och omsorg. Då är det viktigt att föra ett enskilt sam-tal med den anhörige, dels för att följa upp om de beviljade stödformerna är tillräckliga,dels för att kontrollera om den anhöriga fortfarande har möjlighet och ork att vårda sin de-menssjuka närstående. Huruvida gemensamma individuella planer tas fram och årliga upp-följningar görs enligt ovan är okänt men mycket talar för att det inte sker i tillräckligomfattning.Förbättrad kompetensTrygghet är en viktig faktor i omhändertagandet av personer med demens och deras anhö-riga. Anhöriga önskar mer information, och att vård och omsorg utförs av yrkeskunnig per-sonal i sjukdomens alla skeden – från diagnos till palliativ vård, en period som ofta löperöver 5–7 år.Fortbildning för läkare, distriktssköterskor, arbetsterapeuter, biståndshandläggare, vård-och hemtjänstpersonal och andra är också nödvändigt för att öka förståelsen och kunskapenom det komplexa sjukdomstillstånd som demens är, och hur det drabbar de anhöriga. Ökad kompetens för alla yrkesgrupper som kommer i kontakt med demenssjuka, inomsåväl kommun som landsting, innebär att man kan identifiera risker på ett tidigt stadium.En effekt av detta blir att förhindrar kostsamma åtgärder senare i sjukdomsförloppet samtatt livskvaliteten hos patienterna och deras anhöriga förbättras. Fungerande hemvårdFör många äldre är stödet från en anhörig en förutsättning för att kunna bo kvar i det ordi-nära boendet.8För att anhöriga ska klara av detta krävande och mångfacetterande uppdragmåste det finnas ett utvecklat stöd från såväl landsting som kommun, vilket förutsätter ettfungerande samarbete mellan geriatrik, primärvård och äldreomsorg.9Hemvården bör ut-formas i samarbete med de anhöriga som är "experterna" i fråga om vilka behov närstå-ende i fråga har. För att erbjuda personer med demens och deras anhöriga bättre stöd skulleen utökad satsning på uppsökande verksamhet vara önskvärd, där de olika huvudmännentar ett gemensamt ansvar. Önskvärt är också att det skulle finnas ett fungerande multipro-fessionellt team för att möta behoven. Ett team som är mobilt och kan uppsöka den som ärsjuk, och inte tvärtom. Adekvat stöd och ersättningStödinsatser till anhöriga har en positiv effekt på deras hälsa vilket minskar landstingetskostnader på sikt.10Anhöriga som uttrycker önskan om att vårda närstående med demens-sjukdom behöver genom samhällets försorg få förutsättningar för detta, såväl i fråga omeko- nomi som hjälp med vård- och omsorgsinsatser till den sjuke. Inte minst med tanke påatt lejonparten av anhörigvårdarna själva tillhör gruppen äldre. Olika typer av tekniskahjälpmedel kan vara till stor hjälp för den anhöriga och bevara den demenssjuke personensoberoende så länge som möjligt. Idag förskrivs sällan sådana hjälpmedel för den här grup-pen. KvalitetsindikatorerAntalet nationella indikatorer för vård och omsorg för personer med demenssjukdom är 14stycken. Merparten är så kallade utvecklingsindikatorer - det vill säga indikatorer som inteär möjliga att kontinuerligt följa med de uppföljningssystem som finns i dagsläget.11Ingenindikator tar upp stödet till anhöriga. Det är önskvärt att man i framtiden skapar indikatoreräven för anhörigstöd. Registrering i och användningen av kvalitetsregistret SveDem bordegöras i större sträckning av vårdgivarna än som sker idag. Ekonomiska konsekvenserDe anhöriga svarar för den helt dominerande delen av närståendes omsorg och omvårdnadi eget boende. Att sjukvården ser anhöriga som en samarbetspartner och ger adekvat stöd ärpå sikt kostnadseffektivt för landstingets del. Konsekvenserna av otillräckligt stöd kan ledatill ökade kostnader och vårdkonsumtion för såväl patienter som anhöriga.

Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010

Socialstyrelsen (2010)

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010

Socialstyrelsen (2010)

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Stöd till barn som upplevt våld : Utvecklingen på fältet 2006-2010

Eriksson, M. (2010)

Våren 2006 kartlades verksamheter i Sverige som arbetar för att få män som
utövar våld att upphöra med sin våldsutövning mot kvinnor och barn, samt
verksamheter som riktar sig till flickor och pojkar som i sin familj upplever
mäns våld mot kvinnor. Med anledning av en nationell utvärdering av
stödinsatser till barn, vilken pågår 2008 till 2011, genomfördes en förnyad
kartläggning sommaren 2010, av verksamheter riktade till barn som upplever
våld. För denna ansvarade docent Maria Eriksson, Sociologiska institutionen,
Uppsala universitet. Forskningsassistent Marta Wycichowska deltog
också i arbetet. Den här rapporten redovisar resultatet av den förnyade kartläggningen
och beskriver förändringar på fältet under perioden 2006 till
2010.
2010 års kartläggning har begränsats till de typer av organisationer som
utifrån 2006 års rapport kan antas vara de mest relevanta när det handlar om
stöd till barn som upplevt våld: kommunala verksamheter, kvinnojourer samt
barn- och ungdomspsykiatriska mottagningar. Kvinnojourerna respektive
barn- och ungdomspsykiatriska mottagningar fick en enkät som motsvarar
den som skickades ut 2006. Verksamheter i kommunal regi kartlades genom
en genomgång av kommunernas hemsidor. När det gäller vissa nytillkomna
verksamheter har informationen från hemsidan kompletterats med telefonintervjuer.
För att lokalisera verksamheter har viss information också inhämtats
via Länsstyrelserna, forsknings- och projektfinansiärer (som Allmänna
Arvsfonden) samt genom generella sökningar på internet och personliga
kontakter på fältet.
Kartläggningen visar att stöd till barn som upplevt våld är ett fält som
fortfarande expanderar. Antalet identifierade verksamheter har ökat och i
den länsvisa förteckning över verksamheter som finns i rapportens bilaga 1
återfinns totalt 132 verksamheter (jämfört med 87 år 2006). Det är framförallt
bland kommunerna ökningen kan ses och kartläggningen tyder på att det
idag är minst 147 av landets kommuner som själva erbjuder stöd till barn
som upplevt våld. Kartläggningen visar också att det här är ett fält som konsoliderats,
på så sätt att flera små aktörer (i första hand kommuner) slagit sig
samman och etablerat gemensamma verksamheter. Vidare är det fler verksamheter
erbjuder både individuella insatser och grupper för barn, 46 jämfört
med 26 år 2006. Det går att urskilja några nyheter på fältet, i form av nya
modeller för barngrupper, och för terapi för barn och deras omsorgspersoner.
Nyheterna till trots är dock de övergripande tendenserna i stöd och hjälp till
10
barn som upplevt våld densamma 2010 som de var 2006: den vanligaste
formen av insats riktad direkt till barnen tycks fortfarande vara individuella
samtal, oftast benämnda krissamtal, och det är fortfarande oklart i vilken
grad det finns specialisthjälp för de barn som behöver annan hjälp än individuella
krissamtal eller en pedagogisk barngrupp.
Det har varit möjligt att hitta uppgifter om individuella samtal för barn
från minst 112 verksamheter (jämfört med 67 år 2006). Även denna gång är
det så att det i de flesta fall finns uppgifter om att det här arbetet följer eller
inspirerats av Rädda Barnens arbetsmodell Trappan. Det gäller både kommuner
och frivilligorganisationer. När det gäller grupper för barn har de
också blivit vanligare, jämfört med läget 2006. Uppgifter om grupper för
barn finns från 61 verksamheter (jämfört med 41 år 2006). Fortfarande dominerar
modeller för pedagogiska och jag-stödjande grupper vilka ursprungligen
utarbetats för grupper för barn till föräldrar som missbrukar alkohol.
Det går dock att se en del nyheter på fältet. Internationellt har särskilda program
för barn som upplever mäns våld mot kvinnor har funnits sedan åtminstone
15 år tillbaka. Den stora skillnaden mellan dessa program och de
modeller som ligger till grund för de pedagogiska och jag-stödjande grupperna
i Sverige är att de internationella mycket tydligare sätter fokus på våld
och skydd. Ett av dessa våldsfokuserade program finns nu också översatt till
svenska: ett kanadensiskt grupprogram riktat till förskolebarn respektive
skolbarn. Till programmet hör också en insats till barnens mammor. Ytterligare
en ny våldsfokuserad modell för arbetet i barngrupper är en modell för
terapigrupper för barn hämtad från Alternativ til Vold i Oslo (ATV). Den är
utformad för barn i skolåldern eller äldre och även här är rekommendationen
att arbetet med barnen åtföljs med en parallell insats riktad till mammorna
och om möjligt även till papporna. Vid Alla Kvinnors Hus i Stockholm har
ytterligare en ny typ av grupp utvecklats, som ett komplement till befintliga
gruppinsatser. I ett projekt med medel från Allmänna Arvsfonden har boende
barn erbjudits dramagrupp. Den här typen av grupp har fokus på konsekvenserna
av våldet, snarare än känslomässig bearbetning och våldet "i sig".
Kartläggningen från 2006 visade att skyddade boenden för våldsutsatta
kvinnor och deras barn erbjuder ytterligare interventioner för barn som går
utöver individuella samtal och grupp. Det är både ett miljöterapeutiskt inriktat
arbete och stöd i vardagen så att barnen får en rimlig tillvaro under tiden
på det skyddade boendet. Redan 2006 stod det klart att de frivilliga kvinnojourerna
uppmärksammar barn i allt högre utsträckning. Enligt enkätsvaren
2010 kommer den ökande uppmärksamheten också till uttryck i att kvinnojourerna
satsar mer resurser på barn. Av enkäten framgår att 74 av de 97
svarande jourerna har anställd personal (jämfört med 57 av 70 svarande jourer
2006) och att av dessa har 31 (42 procent) personal med särskilt ansvar
för att arbeta med barn/unga som upplevt våld (jämfört med 6 jourer, 11
procent 2006).
11
När det gäller specialisthjälp till barn som upplevt våld visade 2006 års
enkät till barn- och ungdomspsykiatriska mottagningar att det varierade avsevärt
från mottagning till mottagning hur man inom barn- och ungdomspsykiatrin
ser på frågan om barn som lever med våld i sin familj. Därigenom
blir barns möjligheter att få kvalificerad hjälp från barn- och ungdomspsykiatrin
väldigt olika beroende på var i landet de bor. Man kunde också notera
att när det gäller barn- och ungdomspsykiatrins särskilda insatser för barn
som upplever mäns våld mot kvinnor framkom att de flesta använde sig av
Rädda Barnens material Trappan. Det är samma material och modell som
används av socialtjänsten och frivilligorganisationerna. Med tanke på att
barn som söker hjälp hos BUP många gånger är barn med behov som socialtjänsten
och frivilligorganisationerna inte anser sig ha kompetens att tillgodose,
var dessa svar något som i sin tur väckte frågan i vilken grad barn- och
ungdomspsykiatrin i landets olika delar reellt möter behoven av en specialkompetens
som går utöver den som finns hos socialtjänst och frivilligorganisationer.
Den bild som förmedlas i 2010 års enkätsvar ligger på många sätt
nära den tidigare enkätens resultat. Sammantaget kan även svaren från 2010
års enkät tolkas som att BUP endast i undantagsfall erbjuder en insats inriktad
på barn som upplever mäns våld mot kvinnor. Det finns dock några nyheter
i enkäten. En av dessa är behandlingsmodellen Traumafokuserad kognitiv
beteendeterapi (TF-CBT), och just när det gäller TF-CBT pågår också
ett utvecklingsarbete på området.
När det gäller de perspektiv som interventionsmodellerna bygger på dominerar
fortfarande ett utvecklingsperspektiv på barn, där barn blir objekt för
vuxnas ansvar, snarare än aktörer med rätt till delaktighet och medbestämmande,
liksom könsblinda perspektiv där individuell avvikelse står i fokus.
Nyheterna på området skulle på sikt kunna bidra till en breddning av perspektiven.
Det är dock ännu för tidigt att dra några säkra slutsatser om en
sådan utveckling.

Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar

Wilder, J (2014)

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

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

Dunér, A., & Nordström, M. (2010)

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

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

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

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

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

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

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

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

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

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

Reducing depression in stroke survivors and their informal caregivers: A randomized clinical trial of a Web-based intervention

Smith GC, Egbert N, Dellman-Jenkins M, Nanna K, Palmieri PA. (2012)

Purpose/Objectives: To develop and test the efficacy of a Web-based intervention for alleviating depression in male stroke survivors (SSs) and their spousal caregivers (CGs) that blends both peer and professional support. Design and Methods: The research consisted of an intervention protocol evaluated by a focus group of rehabilitation professionals, a "think aloud" session conducted with female stroke CGs, and a usability test of the intervention's online features with 7 female stroke CGs. Efficacy of the final protocol was tested in a 2-group randomized clinical trial with a sample of 32 CG–SS dyads. The CGs in the intervention condition received an online group intervention. Intervention components were based on the Stress Process Model. Those CGs in a control condition received minimal support with individualized access to relevant online information. Measures of depression, as well as the secondary outcomes of mastery, self-esteem, and social support, were obtained from SSs and CGs at pretest, posttest, and 1-month later. Results: At posttest and 1 month later, CGs in the intervention condition reported significantly lower depression than CGs in the control condition with baseline depression controlled. There was no significant effect on depression among SSs. Although no significant treatment effects for either SSs or CGs were found on the secondary outcomes, posttreatment changes on some constructs were significantly correlated with change in depression. Conclusions/Implications: CGs benefit from Web-based programs that help them better understand both their emotional needs and those of the SS. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Relations between Parent Psychopathology, Family Functioning, and Adolescent Problems in Substance-Abusing Families: Disaggregating the Effects of Parent Gender

Burstein M, Stanger C, Dumenci L. (2012)

The present study: (1) examined relations between parent psychopathology and adolescent internalizing problems, externalizing problems, and substance use in substance-abusing families; and (2) tested family functioning problems as mediators of these relations. Structural equation modeling was used to estimate the independent effects of parent psychopathology and family functioning problems by parent gender. Participants included 242 parents in treatment for substance abuse and/or dependence and 59 of their coparents (16.9% in treatment for substance-abuse/dependence) from middle income households (SES: M = 4.7; SD = 2.1). Ratings were obtained for 325 adolescents (48% female; 27.8% non-Caucasian) between the ages of 10 and 18 years (M = 13.5 years; SD = 2.5 years). Parent psychopathology, family functioning problems, and adolescent problems were assessed with parent and coparent ratings on the Symptom Checklist (SCL-90)/Brief Symptom Inventory (BSI), the Family Relationship Measure, and the Child Behavior Checklist, respectively. Results indicated that maternal psychopathology was directly related to adolescent internalizing problems and substance use, but maternal perceptions of family functioning problems failed to mediate relations between maternal psychopathology and adolescent problems. By contrast, paternal perceptions of family functioning problems uniquely mediated relations between paternal psychopathology and adolescent externalizing problems. Findings underscore the importance of examining how mothers and fathers may differentially impact adolescent problems in substance-abusing families.

Implementing key worker services: a case study of promoting evidence-based practice, Findings

Mukherjee, S., Sloper, P., Beresford, B., & Lund, P. (1999)

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

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

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

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

Social Ecologies an Their Contribution to Resilience

Ungar. M (2012)

More than two decades after Michael Rutter (1987) published his summary of protective processes associated with resilience, researchers continue to report definitional ambiguity in how to define and operationalize positive development under adversity. The problem has been partially the result of a dominant view of resilience as something individuals have, rather than as a process that families, schools,communities and governments facilitate. Because resilience is related to the presence of social risk factors, there is a need for an ecological interpretation of the construct that acknowledges the importance of people's interactions with their environments. The Social Ecology of Resilience provides evidence for this ecological understanding of resilience in ways that help to resolve both definition and measurement problems.

Social skill and parental training plus standard treatment versus standard treatment for children with ADHD- the randomised sostra trial.

Storebo O, Gluud C, Winkel P, Simonsen E. (2012)

OBJECTIVE:
To investigate the effects of social-skills training and parental training programme for children with attention deficit hyperactivity disorder (ADHD).
METHODS:
We conducted a randomized two-armed, parallel group, assessor-blinded superiority trial consisting of social-skills training plus parental training and standard treatment versus standard treatment alone. A sample size calculation showed at least 52 children should be included for the trial with follow up three and six months after randomization. The primary outcome measure was ADHD symptoms and secondary outcomes were social skills and emotional competences. RESULTS 56: children (39 boys, 17 girls, mean age 10.4 years, SD 1.31) with ADHD were randomized, 28 to the experimental group and 27 to the control group. Mixed-model analyses with repeated measures showed that the time course (y  =  a + bt + ct(2)) of ADHD symptoms (p = 0.40), social skills (p = 0.80), and emotional competences (p = 0.14) were not significantly influenced by the intervention.
CONCLUSIONS:
Social skills training plus parental training did not show any significant benefit for children with attention deficit hyperactivity disorder when compared with standard treatment. More and larger randomized trials are needed.

Social Support Moderates Posttraumatic Stress and GeneralDistress After Disaster

Arnberg, F. K., Hultman, C. M., Michel, P.-O., & Lundin , T. (2012)

Social support buffers the negative impact of stressful events. Less, however, is known about the characteristics of this association in the context of disaster and findings have been discrepant regarding direct and buffering effects. This study tested whether the protective effects of social support differed across levels of exposure severity (i.e., buffered distress) and assessed whether the buffering effect differed between event-specific and general distress. Participants were 4,600 adult Swedish tourists (44% of invited; 55% women) repatriated within 3 weeks after the 2004 Indian Ocean tsunami. A survey 14 months after the disaster included the Crisis Support Scale, the Impact of Event Scale-Revised (IES-R), and the General Health Questionnaire (GHQ-12). Social support buffered the negative impact of exposure on both outcomes. The support and distress association ranged from very small in participants with low exposure to moderate in those with high exposure (η(p)(2) = .004 to .053). The buffering effect was not found to differ between the IES-R and GHQ-12, F(2, 4589) = 0.87, p = .42. The findings suggest that social support moderates the stressor-distress relationship after disasters. This study might help explain discrepant findings and point to refinements of postdisaster interventions.

Stepped care in psychological therapies: access, effectiveness and efficiency. Narrative literature review.

Bower, P., & Gilbody, S. (2012)

BACKGROUND:
There is a significant gap between the demand for psychological therapy services and the available supply. One proposal to overcome this problem is to increase efficiency of provision through the adoption of briefer 'minimal interventions' within stepped care models.
AIMS:
To examine the theoretical underpinnings of stepped care, together with the practicalities of the adoption of this system of care.
METHOD:
Narrative literature review.
RESULTS:
The potential clinical and economic benefits of stepped care are dependent upon underlying assumptions of equivalence in terms of clinical outcomes, efficiency in terms of resource use and costs, and acceptability of 'minimal interventions' to patients and therapists. Illustrative studies of these issues are considered.
CONCLUSIONS:
Although psychological services might benefit from the adoption of the stepped care model, a substantial research agenda needs to be fulfilled before a judgement can be made as to whether stepped care might be an efficient method of delivering psychological services.

Strenghtening effective parenting practices over the long term: effects of a preventive intervention for parentally bereaved families

Hagan, M.J., Tein, J., Sandler, I.N., Wolchik, S.A., Ayers, T.S. & Luecken, L.J. (2012)

This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g., caregiver warmth, consistent discipline) 6 years after program completion. Families (n = 101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8 and 16 who had experienced the death of one parent were randomized to the FBP (n = 54) or a literature control condition (n = 47). Multiple regression analyses conducted within a multilevel framework indicated that the FBP had a significant positive impact on a multirater, multimeasure assessment of parenting at 6-year follow-up, controlling for pretest levels of parenting and child mental health problems. Mediation analyses showed that short-term program effects on parenting, including caregiver warmth and effective discipline, significantly mediated the impact of the FBP on effective parenting 6 years later. These findings indicate that a relatively cost-effective brief intervention for families who experienced a major stressor resulted in sustained effects on caregiver warmth and consistent discipline 6 years following the program.

Stöd till anhöriga – erfarenheter från åtta kommuner 2010-2012

Nationellt kompetenscentrum Anhöriga, Nka (2012)

Ett omfattande arbete har utförts i landets kommuner sedan slutet av 1990-talet för att utveckla stödet till anhöriga. I maj 2009 beslutade riksdagen att kommunerna ska "erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en närstående som har funktionshinder."

Studiens syfte är att kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp och utvärderas inom äldre-, funktionshinder- och individ- och familjeområdet samt samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom området. I kartläggningen ingår även att undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga.

I undersökningen kartläggs och följs stödet till anhöriga under tre år i åtta kommuner. De studerade kommunerna är Borås, Härjedalen, Hässleholm, Malmö, Skara, Strängnäs, Uppsala och Västervik. I rapporten presenteras resultatet av kartläggningen för år 2010.

Rapporten är ett samarbete mellan FoU Sjuhärad Välfärd, FoU-stöd Regionförbundet Uppsala län, Fokus Kalmar län, FoU i Sörmland, Kommunförbundet Skåne, Malmö stad, Skaraborgs kommunalförbund, FoU Jämt, Nationellt kompetenscentrum anhöriga.

Stöd till barn och unga med funktionsnedsättning. Handbok för rättstillämpning vid handläggning och utförande av LSS-insatser.

Socialstyrelsen (2012)

I den nya handboken om stöd till barn och unga med funktionsnedsättning får du som handläggare och personal svar på frågor om hur stödet kan utformas.

Hur gör du som LSS handläggare när det ser ut som att lag och verklighet inte går ihop? Vad får föräldrar respektive personalen bestämma och vad får den unge själv bestämma i ett boende? Vad har kommunen för ansvar för planering och uppföljning?

Viktigt att tänka förebyggande
I boken får du exempel på olika stöd som kan ges till barn och familjer. Här framhålls vikten av att tänka förebyggande och vilka risker det kan innebära när familjer inte får tillräckligt stöd. Du som handläggare får också information om vad en personkretsbedömning omfattar och hur barn kan bli delaktiga i handläggningsprocessen.

Stöd för att orka med sitt föräldraskap
– Även om inte LSS ska kompensera för bristande föräldraförmåga, kan LSS-insatserna verka förebyggande så att föräldrarna orkar med sitt föräldraskap. Föräldrarna till ett barn som till exempel behöver vändas flera gånger om natten kan både bli uttröttade och tappa tålamodet. Genom att bevilja avlösning på ett sätt som passar föräldrarna ökar förutsättningarna för att de ska orka med situationen och få utrymme även för syskon och egna intressen, säger projektledaren Ylva Branting.

Viktigt stöd i olika åldrar
Du som förestår eller jobbar på ett boende får exempel på vilka behov omvårdnaden är tänkt att tillgodose. Här görs en koppling till barnens utveckling och vad som är viktigt stöd i olika åldrar. I boendet ställs många frågor på sin spets, till exempel hur en bra bostad bör utformas fysiskt och vad av vårdnadshavarens ansvar som kan tas över av personal. Många av dessa frågor är också aktuella i samband med andra stödformer.

Grund i lagstiftning och forskning
Handboken bygger på lagstiftning, förarbeten, konventioner och rättsfall samt Socialstyrelsens föreskrifter och allmänna råd. Men vissa delar bygger också på källor från psykologisk och pedagogisk forskning.

Stöd till barn och unga med funktionsnedsättning. Handbok för rättstillämpning vid handläggning och utförande av LSS-insatser.

Socialstyrelsen (2012)

I den nya handboken om stöd till barn och unga med funktionsnedsättning får du som handläggare och personal svar på frågor om hur stödet kan utformas.

Hur gör du som LSS handläggare när det ser ut som att lag och verklighet inte går ihop? Vad får föräldrar respektive personalen bestämma och vad får den unge själv bestämma i ett boende? Vad har kommunen för ansvar för planering och uppföljning?

Viktigt att tänka förebyggande
I boken får du exempel på olika stöd som kan ges till barn och familjer. Här framhålls vikten av att tänka förebyggande och vilka risker det kan innebära när familjer inte får tillräckligt stöd. Du som handläggare får också information om vad en personkretsbedömning omfattar och hur barn kan bli delaktiga i handläggningsprocessen.

Stöd för att orka med sitt föräldraskap
– Även om inte LSS ska kompensera för bristande föräldraförmåga, kan LSS-insatserna verka förebyggande så att föräldrarna orkar med sitt föräldraskap. Föräldrarna till ett barn som till exempel behöver vändas flera gånger om natten kan både bli uttröttade och tappa tålamodet. Genom att bevilja avlösning på ett sätt som passar föräldrarna ökar förutsättningarna för att de ska orka med situationen och få utrymme även för syskon och egna intressen, säger projektledaren Ylva Branting.

Viktigt stöd i olika åldrar
Du som förestår eller jobbar på ett boende får exempel på vilka behov omvårdnaden är tänkt att tillgodose. Här görs en koppling till barnens utveckling och vad som är viktigt stöd i olika åldrar. I boendet ställs många frågor på sin spets, till exempel hur en bra bostad bör utformas fysiskt och vad av vårdnadshavarens ansvar som kan tas över av personal. Många av dessa frågor är också aktuella i samband med andra stödformer.

Grund i lagstiftning och forskning
Handboken bygger på lagstiftning, förarbeten, konventioner och rättsfall samt Socialstyrelsens föreskrifter och allmänna råd. Men vissa delar bygger också på källor från psykologisk och pedagogisk forskning.

Supporting hospice volunteers and caregivers through community-based participatory research

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

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

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

Light, J. and D. McNaughton (2012)

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

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

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

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

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

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

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

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

Stefan Andersson, Lennart Magnusson, Elizabeth Hanson (2012)

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

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

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

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

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

Moore, C. D. (2012)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The impact of sociodemographic factors on the utilisation of support services for family caregivers of elderly dependents—Results from the German sample of the EUROFAMCARE study

Lüdecke D, Mnich E, Kofahl C. (2012)

Objectives: As in nearly all European countries, demographic developments in Germany have led to both a relative and an absolute increase in the country's elderly population. The care and support needed by these people is primarily provided by relatives or friends and close acquaintances within the home environment. The major challenges for society are to sustain, promote and support these informal resources. In order to achieve this, it is crucial that family caregivers are provided with situation-specific services that support them and relieve their burden of care. The major challenges for society are therefore to sustain, promote and support informal resources and to provide the opportunity for the use of services aimed at assisting and relieving the burden of family caregivers. Methods: In the context of the EUROFAMCARE study, 1,003 family caregivers from Germany were interviewed at home about their experiences using a standardized questionnaire. Included in the study were primary caregivers providing at least four hours of personal care or support per week to a relative aged 65 years or older. Subjects solely providing financial support were excluded. In this paper, a linear regression analysis has been conducted to analyze impact of sociodemographic factors on the utilization of support services. Results: The family caregivers were 54 years on average (SD=13.4), 76% of them were female. The dependent elderly were 80 years on average (SD=8.3), and 69% of them were women. 60% of them were receiving long-term care insurance benefits. Use of support services aimed directly at family caregivers is very low. After including certain services aimed primarily at those in need of care but also often serving as a source of relief for family caregivers, the percentage of caregivers using support services increased slightly. Among sociodemographic characteristics, caregivers' gender and education level have the greatest influence on services use. Other influential factors are caregivers' perception of their caregiving burden and their assessment of the dependent family member's need for assistance and support.

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

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

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

The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: The siblings' perspectives

Moyson, T. and H. Roeyers (2012)

Background: The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling. Method: As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in‐depth, phenomenology‐based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory. Results: Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well‐being, exchanging experiences, social support and dealing with the outside world. Conclusions: This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Implementation, process, and preliminary outcome evaluation of two community programs for persons with stroke and their care partners

Huijbregts MPJ, Myers AM, Streiner D, Teasell R. (2008)

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

Implementing child-focused family nursing into routine adult psychiatric practice: hindering factors evaluated by nurses

Korhonen, T.,Vehviläinen-Julkunen,K.,& Pietilä, A-M. (2008)

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

Living with an elephant: growing up with parental substance misuse

Kroll B. (2004)

Although parental substance misuse is now a focus of concern in child welfare practice, we know little about what it is really like for children who grow up in families where adult drug and/or alcohol use is an issue. Set against a backdrop of research links between parental substance misuse and child maltreatment, this article examines a number of studies that focus on the experiences of children and young people in this context. Emerging themes are identified which provide insight into the world of children for whom a substance is, effectively, a family member –'the elephant in the living room'– and the implications for practice, particularly in relation to children's visibility, disclosure and confidentiality, are considered. It is argued that a focus on the 'elephant' often leads to children remaining 'invisible' to those whose role it is to ensure their welfare.

Meeting the needs of parentally bereaved children: a framework for child-centered parenting

Saldinger, A., Porterfield, K., & Cain, A.C. (2004)

Abstract
This article describes the development and deployment of a framework for measuring parenting capacities in the context of bereavement. Grounded theoretical analysis of interviews with a community sample of 41 bereaved spouses with school-aged children elicited a set of nine bereavement-specific parenting tasks. A corollary coding system (covering all nine parenting tasks) was created to transform interview materials into quantitative data, thus permitting systematic empirical investigation of the parenting capacities of bereaved spouses. Parenting behaviors were coded on a 5-point scale ranging from least child-centered to most child-centered. Sex of surviving parent and circumstances of death proved to be significant mediating variables: mothers were more child-centered than fathers, and parents surviving sudden deaths more child-centered than those surviving anticipated deaths. Lengthy illness was associated with less child-centered parenting. The more child-centered the parenting, the less symptomatic the child as measured by parent report (Child Behavior Checklist) and child self-report (Children's Depression Inventory, Revised Child Manifest Anxiety Scale). Child-centered parenting was associated with more positive and fewer negative perceptions of the surviving parent by the child as measured by the Parent Perception Inventory. Implications of findings are discussed.

Men’s violence against women: a challenge in antenatal care

Stenson, K. (2004)

Men's violence against women is a universal issue affecting health, human rights and gender-equality. In pregnancy, violence is a risk for both the mother and her unborn child.The overall aims were: to determine the prevalence of such violence in a Swedish pregnant population, to investigate pregnant women's attitudes to questioning about exposure to violence, and to evaluate experience gained by antenatal care midwives having routinely questioned pregnant women regarding violence.All women registered for antenatal care in Uppsala, Sweden, during 6 months were assessed regarding acts of violence. The Abuse Assessment Screen (AAS) was used twice during pregnancy and again after delivery when the women were asked an open-ended written question regarding attitudes to questioning about violence. Midwives' experiences regarding routine assessment were evaluated in focus group discussions.The AAS questions were answered by 93% (1,038) of those eligible. Physical abuse by a partner or relative during or shortly after pregnancy was reported by 1.3%, and by 2.8% when the year preceding pregnancy was included. Lifetime sexual abuse was reported by 8.1%. Repeated questioning increased the abuse detection rate. Abused women reported more previous ill-health, and women physically abused during pregnancy more pregnancy terminations than did non-abused women. Abuse assessment was found entirely acceptable by 80%, both acceptable and unacceptable/disagreeable by 5% and solely unacceptable/ disagreeable by 3%, while 12% were neural. Abused and non-abused women did not differ regarding disinclination to answer the abuse questions. According to the midwives the delicacy of the subject and the male partners' presence were the most prominent remaining obstacles to routine determination of violence. Routines are required to make questioning about violence an integral part of antenatal care. This would necessitate a private appointment for the woman, knowledge among care providers about the nature of men's violence, and awareness of referral options.

Intimate Partner Violence and Preschoolers’ Explicit Memory Functioning

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

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

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

Vinnerljung B. & Sallnäs M. (2008)

ABSTRACT In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.

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

Socially connected while apart: the use of technology to increase social connection between nursing home residents and their relatives

Akhtar, Sehrish Andleeb (2024)

Introduction: This study examines whether the use of a communication technology can enhance social connectedness among nursing home residents in Norway. The concept of social connectedness suggest that positive and significant interpersonal relationships can help reduce the risk of loneliness and social isolation among older adults and can be beneficial for both their health and overall well-being. In recent years, technology has been increasingly utilized as a method to overcome physical distances and to keep families connected. Although the use of digital solutions among older people has increased in recent years, few studies have addressed the use and impact of such technologies within a nursing home context.
Methods: A total of 225 residents participated in the study, making it one of the few quantitative studies that examine the use of communication technologies in nursing homes at such a large scale. The study combines two sources of data: (1) survey data collected over a 14-month period, in three different waves, at all public nursing homes in Oslo municipality and (2) a highly detailed weekly datastream from each Komp-device, which provides an objective measure of the frequency of contact between the residents and their families. The two sources of data were combined and analyzed using multiple regression analysis.
Results: The regression analysis revealed a positive and significant relationship between Komp use and increased social satisfaction among the residents. The results indicate that Komp is a feasible communication tool to help nursing home residents maintain relations with their families.
Discussion: The positive response to Komp among the residents suggests that when designed with the user's needs in mind, technology can indeed facilitate meaningful social interactions, even for those with limited technological experience. Such interventions can thus be crucial in bridging the gap between older residents and the outside world, effectively addressing their unique challenges of social isolation and disconnection from the broader community

Health Provider Experiences in Supporting Social Connectedness Between Families and Older Adults Living in Long-Term Care Homes

Anna Garnett, Hannah Pollock, Kristin Prentice, Natalie Floriancic, Lorie Donelle, Carri Hand, Abe Oudshoorn, Yolanda Babenko-Mould, Cheryl Forchuk (2024)

Introduction: Many people, often older adults, living in long-term care homes (OA-LTCH) became socially isolated during the COVID-19 pandemic due to variable restrictions on in-person visits and challenges associated with using technology for social connectivity. Health providers were key to supporting these OA by providing additional care and facilitating their connections with family using technology such as smartphones and iPads. It is important to learn from these experiences to move forwards from the COVID-19 pandemic with evidence-informed strategies that will better position health providers to foster social engagement for OA-LTCH across a range of contextual situations.

Objective: This exploratory qualitative description study sought to explore health provider experiences in supporting social connectedness between family members and OA-LTCH within the COVID-19 context.

Methods: Qualitative, in-depth semistructured interviews were conducted with 11 health providers.

Results: Using inductive qualitative content analysis study findings were represented by the following themes: (a) changes in provider roles and responsibilities while challenging for health providers did not impact their commitment to supporting OA-LTCH social and emotional health, (b) a predominant focus on OA-LTCH physical well-being with resultant neglect for emotional well-being resulted in collective trauma, and (c) health providers faced multiple challenges in using technology to support social connectivity.

Conclusion: Study findings suggest the need for increased funding for LTC to support activities and initiatives that promote the well-being of health providers and OA living in LTC, the need to prioritize social well-being during outbreak contexts, and more formalized approaches to guide the appropriate use of technology within LTC.

Video Conferencing With Residents and Families for Care Planning During COVID-19: Experiences in Canadian Long-Term Care

Connelly D, Hay M, Garnett A, Hung L, Yous ML, Furlan-Craievich C, Snelgrove S, Babcock M, Ripley J, Snobelen N, Gao H, Zhuang R, Hamilton P, Sturdy-Smith C, O'Connell M (2023)

Background and objectives: Government-mandated health and safety restrictions to mitigate the effects of coronavirus disease 2019 (COVID-19) intensified challenges in caring for older adults in long-term care (LTC) without family/care partners. This article describes the experiences of a multidisciplinary research team in implementing an evidence-based intervention for family-centered, team-based, virtual care planning-PIECESTM approach-into clinical practice. We highlight challenges and considerations for implementation science to support care practices for older adults in LTC, their families, and the workforce.

Research design and methods: A qualitative descriptive design was used. Data included meetings with LTC directors and Registered Practical Nurses (i.e., licensed nurse who graduated with a 2-year diploma program that allows them to provide basic nursing care); one-on-one interviews with family/care partners, residents, Registered Practical Nurses, and PIECES mentors; and reflections of the academic team. The Consolidated Framework for Implementation Research provided sensitizing constructs for deductive coding, while an inductive approach also allowed themes to emerge.

Results: Findings highlighted how aspects related to planning, engagement, execution, reflection, and evaluation influenced the implementation process from the perspectives of stakeholders. Involving expert partners on the research team to bridge research and practice, developing relationships from a distance, empowering frontline champions, and adapting to challenging circumstances led to shared commitments for intervention success.

Discussion and implications: Lessons learned include the significance of stakeholder involvement throughout all research activities, the importance of clarity around expectations of all team members, and the consequence of readiness for implementation with respect to circumstances (e.g., COVID-19) and capacity for change.

Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.

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

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

Separation–individuation conflicts in children of Holocaust survivors

Barocas, H. A., & Barocas, C. B. (1980)

This article examines the developmental conflicts of children of Holocaust Survivors with specific emphasis on psychic trauma and second-generation Survivor effects. Issues related to depression, guilt, and aggression are discussed in relation to Mahler's separation-individuation process. Developmental failures at early phases may predispose these children toward low self-esteem, narcissistic vulnerability, identity problems, and impairments in interpersonal relations. The need for further research and clinical investigation is emphasized to help develop preventive measures and attenuate the effects of the Holocaust on future generations.

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

Davidson, S. (1980)

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

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

Davidson, S. (1980)

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

A locus of control scale for children

Nowicki S, Strickland BR. (1973)

A study to produce a reliable, methodological precise
measure of generalized locus of control of reinforcement, which can
be group administered to a wide range of children, is reported. The
measure produced, the Nowicki-Strickland Locus of Control Scale, is a
paper and pencil instrument of 40 questions which are marked either
yes or no. The scale was administered to 1017 mostly Caucasian
elementary and high school students, grades 3 through 12, with all
socioeconomic levels except the very highest represented. All mean
intelligence scores were in the average range. Results of the test
administration include: (1) the student's responses became more
internal with age, and substantial individual dif ferences occurred at
the third-grade level; (2) all item-total relationships were moderate
but consistent for all ages; (3) locus of control scores were not
significantly related to social desirability; (4) it was tentaively
concluded that internality is related significantly to higher
occupational level, especially for males; and (5) there was a clear
relationship between locus of control and achievement scores; all
correlations were negative, with most of the significant correlations
present in the male group. Two revised scales of 20 items and 21
items for primary and secondary groups, respectively, were
constructed; the scale was also adopted for use with college and
adult subjects. Eight tables present the study data, and samples of
the 20 and 21 item scales are given. (DB)

Bröderna Lejonhjärta, Bok från 6år

Astrid Lindgren. Bilder Ilon Wikland (1973)

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

Some second generation effects of survival of the Nazi persecution

Sigal, J. J., Silver, D., Rakoff, V., & Ellin, B. (1973)

Nazi concentration camp survivors are known to continue to suffer the adverse physical and psychological effects of their internment. This is a study of the effects on their children. A clinical sample of mid-teenage children of survivors was found to have more behavioral and other disturbances and less adequate coping behavior than did a clinical control group. Parental preoccupation is suggested as a contributing factor.

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

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

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

Föräldrar med intellektuell funktionsnedsättning. Stöd till socialtjänsten för att identifiera och ge stöd till barn och familj

Socialstyrelsen (2024)

Föräldrar med intellektuell funktionsnedsättning (IF) kan behöva stöd i sitt föräldraskap för att barnet ska få en bra uppväxt. Socialtjänsten behöver kunskap för att kunna göra välgrundade överväganden och för att kunna ge barn och föräldrar adekvata stödinsatser. Barn riskerar att fara illa om de inte uppmärksammas eller om deras föräldrar får för lite stöd för att kunna utveckla sin föräldraförmåga. Barriskerar också att fara illa om de blir placerade och tappar kontakt med sitt ursprung och nätverk. FN:s konvention om barnets rättigheter anger att samhället behöver ge lämpligt stöd till föräldrar som ansvarar för barnets uppfostran och omvårdnad för att garantera och främja de rättigheter som barnet har. Barnet kan inte ses isolerat från sin familj. Ofta är det dock olika delar av kommunen som utreder och ansvarar för stöd i vardagen till vuxna som har en funktionsnedsättning respektive stöd och skydd för barn. Runt dessa familjer behöver kommunens olika förvaltningar arbeta tillsammans för att en helhetssyn ska vara möjlig. Det gäller både i utredningsförfarandet och vid utformning och utförande av stöd.
Syftet med kunskapsstödet är att öka socialtjänstens kunskap och kompetens för att kunna möta familjerna och tillsammans med dem utforma ett stöd.

Emotion and Adaptation

Lazarus R. (1991)

in our discussion of emotion and dysfunction, we have intimated that emotions are instructive about persons because both emotions and the personality are organized around the problem of surviving, getting along, and flourishing over the life course
begin by addressing the question of what an emotion is / describe our own [the authors'] recent work directed at illuminating what we see as one of the important issues in emotion theory—the role of cognitive appraisal
embed this work in a general model of emotion, which identifies the key variables and processes within a systems framework emphasizing person-environment relationships and cognitive mediation
illustrate how emotion theory makes firm contact with a variety of topics currently being pursued across diverse psychological disciplines, especially personality and social psychology
the adaptational problem and the evolution of emotion / appraisal theory / personality, society, and biology in emotion (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Emotion and Adaptation

Lazarus, RS. (1991)

In this landmark work, Richard Lazarus -- one of the world's foremost authorities -- offers a comprehensive treatment of the psychology of emotion, its role in adaptation, and the issues that must be addressed to understand it. The work provides a complete theory of emotional processes, explaining how different emotions are elicited and expressed, and how the emotional range of individuals develops over their lifetime. The author's approach puts emotion in a central role as a complex, patterned, organic reaction to both daily events and long-term efforts on the part of the individual to survive, flourish, and achieve. In his view, emotions cannot be divorced from other functions--whether biological, social, or cognitive--and express the intimate, personal meaning of what individuals experience. As coping and adapting processes, they are seen as part of the ongoing effort to monitor changes, stimuli, and stresses arising from the environment. After defining emotion and discussing issues of classification and measurement, Lazarus turns to the topics of motivation, cognition, and causality as key concepts in this theory. Next he looks at individual emotions, both negative and positive, and examines their development in terms of social influences and individual events. Finally, he considers the long-term consequences of emotion on physical health and well-being, and the treatment and prevention of emotional dysfunction. The book draws together the relevant research from a wide variety of sources, and distills the author's pioneering work in the field over the last forty years. As a comprehensive treatment of the emotions, the book will interest students, clinicians, and researchers involved in personality, social and clinical psychology, as well as cognitive and developmental psychology. It may also be used as a supplemental textbook in courses on the psychology of adjustment, emotion, and feeling.

Epidemiology and preventive interventions: parental death in childhood as a case example

Gersten, J.C., Beals, J. & Kallgren, C.A. (1991)

Illustrates how standard epidemiologic principles form the knowledge base to justify a preventive intervention for an at-risk population. These principles were applied to a sample of 92 from the population of children aged 8 to 15 at alleged risk for mental health disorders because a parent died. Prior work on this alleged risk population is sparse and flawed. Validly determining the population effect of an alleged risk factor requires assessing the influence of sampling bias. The bias found, underrepresentation of deaths of a mother, did not influence the relations among death of a parent and children's depression and conduct disorder, and the modifiable mediators of risk to be changed by the preventive intervention. The epidemiologic measure of effect indicated that death of a parent is a risk factor for major depression but not for conduct disorder among youth. Families recruited for the preventive intervention by epidemiologic methods (ES families) did not differ significantly from the earlier families on whom the knowledge base was formed. Families referred to the intervention by self or others significantly differed from the ES families in two ways that constituted serious biases. The implications of these biases for prevention were discussed.

Establishing Conversational Exchanges with Family and Friends Moving from Training to Meaningful Communication

Hunt, P., Alwell, M., & Goetz, L. (1991)

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

Establishing Conversational Exchanges with Family and Friends Moving from Training to Meaningful Communication

Hunt, P., Alwell, M., & Goetz, L. (1991)

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

Handbook for the study of parental acceptance and rejection

Rohner R. (1991)

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

Manual for the Child Behavioral Checklist 4-18 and revised 1991 profile.

Achenbach TM (1991)

Purpose
To obtain caregiver report of children's competencies and behavior problems in a standardized format.
Conceptual Organization
The Child Behavior Checklist/4-16 (CBCL/4-16) was the first of what has become a multi-axial
empirically based set of measures for assessing children from parent, teacher, and self-reports. In 1991,
The CBCL/4-16 was re-normed to include children up to 18 years of age (becoming CBCL/4-18), and
eight cross-informant constructs were identified to facilitate direct comparison between problem
behavior scores on the CBCL, the Teacher Report Form (TRF), and the Youth Self-Report Form (YSR)
(Achenbach, 1991). All three instruments include measurement of the following eight constructs or
syndromes: Social Withdrawal, Somatic Complaints, Anxiety/Depression, Social Problems, Thought
Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior. The CBCL is the only
measure among the three instruments that contains the Sex Problems scale (Achenbach, 1991).
In addition to focusing on a child's behavior as defined by one of the eight syndrome scales, the CBCL,
TRF, and YSR also allow the examination of two broad groupings of syndromes: Internalizing Problems
and Externalizing Problems. Internalizing Problems combines the Social Withdrawal, Somatic
Complaints, and Anxiety/Depression scales, while Externalizing problems combines the Delinquent
Behavior and Aggressive Behavior scales (Achenbach, 1991).
The three corollary instruments also contain items that assess social competence. The CBCL/4-18
contains 20 competence items grouped into 3 scales (Activities, Social, and School) (Achenbach, 1991).
Item Origin/Selection Process
Items were derived from research and consultation with professionals and parents, and revisions were
based on the findings of numerous pilot studies. For a complete description of item derivation for the
CBCL, see the Manual for the Child Behavior Checklist/4-18 and 1991 Profile (hereafter referred to as
the Manual) (Achenbach, 1991).
Materials
Manual, forms, and computerized scoring programs, available from the publisher.
Time Required
Twenty-five to thirty minutes.
Administration Method
The CBCL is designed to be completed independently by the caregiver. It requires fifth grade reading
ability. The form can also be administered orally by an interviewer who records the caregiver's answers.
There are several items for which the respondent is asked to elaborate about an endorsed behavior in
order to avoid improper scoring.
Training
Requires thorough familiarity with the Manual, especially with the cautions related to commonly
misinterpreted items (Manual, p. 13, pp. 249-250). Please see the Manual for additional information on
training and educational requirements.
Scoring
Score Types
Items are coded from 0 to 2. Instructions for hand scoring the instrument are provided in Appendix A
of the Manual.
Total scores may be computed for Social Competence, Behavior Problems, Internalizing Problems,
Externalizing Problems, and Sex Problems, plus scores for each of the 8 syndrome scales (Achenbach,
1991)
Raw scores can be converted to age-standardized scores (T scores having a mean = 50 and SD = 10) that
can be compared with scores obtained from normative samples of children within the same broad age
range. Please see the Manual for more information on CBCL scores.
Score Interpretation
For the syndrome scales, T scores less than 67 are considered in the normal range, T scores ranging from
67-70 are considered to be borderline clinical, and T scores above 70 are in the clinical range
(Achenbach, 1991) Please see the Manual for additional information on specific syndrome scales
For Total Problems, Externalizing Problems, and Internalizing Problems, T scores less than 60 are
considered in the normal range, 60-63 represent borderline scores, and scores greater than 63 are in the
clinical range (Achenbach, 1991).
Norms and/or Comparative Data
The CBCL/4-18 was normed on a sample of 2,368 non-handicapped 4 to 18 year old children. See
Manual for additional information on norms and comparative data. .
Psychometric Support
Reliability
Information on test-retest reliability and Cronbach's alphas are available from the author (Achenbach,
1991).
Validity
Evidence for content, construct, and criterion-related validity is well documented. See Chapter 6 in
Manual for additional details.

Public health nurses’ experiences working with children who are next of kin: a qualitative study

Marie Dahlen Granrud, Tuva Sandsdalen, Agneta Anderzén-Carlsson, Anne Kjersti Myhrene Steffenak (2022)

Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

Psychosocial effects on siblings of children with autism and mental retardation: a population-based study.

Bågenholm A, Gillberg C. (1991)

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more 'stressful events'. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.

Scaling and attainment of goals in family-focused intervention

Simeonsson, Rune J, Bailey, Donald B, Huntington, Gail S, Brandon, Lori l (1991)

Evaluating the impact of early intervention as a means to prevent or ameliorate developmental disabilities has been a long standing problem and the issue of effectiveness continues to be debated. This study explored the utility of Goal Attainment Scaling as a planning and evaluation tool whereby intervention outcomes for infants and families could be documented. The 23 families in this study were participants in a larger research effort evaluating the implementation of community based, family-focused intervention. An average of 5.9 goals were written for each family, with approximately 60% of goals written for infants and 40% for families. Attainment of goals was evident in a mean T-score of 51.9 for post-test values and in documentation that approximately two-thirds of all goals were attained at least at the expected level. The practical features of Goal Attainment Scaling and the correspondence of goal attainment scores with other measures of change suggest that it may be a valuable approach to complement traditional evaluation strategies.

Snoezelen: an approach to the provision of a leisure resource for people with profound and multiple handicaps

Haggar, L. E., & Hutchinson, R. B. (1991)

This article outlines the history and development of the Snoezelen Centre at Whittington Hall Hospital in Chesterfield. Snoezelen originates from Holland. It is a leisure and recreation facility for people with profound and multiple handicaps. The concept involves creating high quality, purpose built environments which are used in a sensitive and caring way to provide pleasurable sensory stimulation and relaxation. The article describes the environments at Whittington Hall and the activities within them, together with details of the approach to staff development for Snoezelen workers. It also gives the background of a research project associated with the development of the facility, which seeks to evaluate the impact of Snoezelen on the daily lives of the people who use it.

Social support needs of family caregivers of psychiatric patients from three age group

Norbeck, J. S., Chafetz, L., Skodol-Wilson, H., & Weiss, S. J. (1991)

Sixty family caregivers of child, adult, and elderly psychiatric patients were interviewed to determine their unique and common support needs. Content analysis of interview data was used to identify support categories and their properties. Support needs expressed by caregivers paralleled the general types of support described in the social support literature (emotional, feedback, informational, and instrumental); however, for many categories under each general type the specific meaning of the support was directly linked to the psychiatric caregiving role. Most of the differences in support needs among caregivers from the three age groups reflected the caregivers' stage of life and the length of time they had been caregiving. The group of caregivers of adult patients reported having the least support. Although many support needs were expressed, the needed support did not exist.

Socialt arbete med små barn

Andersson, G. (1991)

Barnavårdsarbetet anses vara bland det svåraste som socialsekreterare ställs inför. Detta beror bl.a på de motstridiga förväntningar och partsintressen som ska tillgodoses. Å ena sidan ska de stödja föräldrarna och visa respekt för deras självbestämmanderätt.

Leva som andra och vara delaktiga i samhället: Information om LSS

Socialstyrelsen (2024)

Delaktighet, tillgänglighet, inflytande, självbestämmande, att få leva som
andra. Det är grundläggande principer i både svensk funktionshinderspolitik
och i lagen (1993:387) om stöd och service till vissa funktionshindrade,
LSS. Som beslutsfattare har du både ett stort ansvar och möjligheter att
förvalta dessa principer och omsätta dem i praktiken. Det är när insatser
beslutas och planeras och i mötet med den enskilde individen som
målsättningarna i funktionshinderpolitiken och i LSS kan förverkligas.

Publikationen finns som pdf på Socialstyrelsens webbplats.

The risks of job flexibility: an analysis of reconciling paid work and informal care across organisations using the capabilities approach

Marcel Hoogenboom, Mara A. Yerkes, Wilco Kruijswijk (2024)

While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.

Family-Oriented Interventions for the Prevention of Chemical Dependency in Children and Adolescents

Demarsh J, Kumpfer KL. (1986)

Researchers and clinicians are begining to recognize the valuable resource that parents and families are for increasing the effectiveness of substance abuse prevention programs for youth and adolescents. To date, however, most prevention interventions have been developed for use in community or school-based programs. There is a growing number of family-oriented interventions which have been developed specifically as substance abuse prevention programs, or may be easily adapted for use by prevention specialists. This article will review these family-oriented interventions and discuss outcome effectiveness data when available.

Dignity for Deeply Forgetful People How Caregivers Can Meet the Challenges of Alzheimer's Disease

Stephen G. Post (2022)

For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of―and find renewed hope in―surprising expressions of selfhood despite the challenges of cognitive decline.

In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:

• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs

At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

The relevance of the workplace for combining employment and informal care for older adults: results of a systematic literature review

Thomas Geisen, Karl Krajic, Sibylle Nideröst, Ingrid Mairhuber, Charlotte Dötig, Andrin Altherr, Salome Schenk, Reka Schweighoffer (2024)

The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.

Barriers and facilitators to physical activity among informal carers: a systematic review of international literature

Lindsay, Rosie K. Vseteckova, Jitka, Horne Joanna, Smith Lee, Trott Mike, De Lappe Joseph, Soysal Pinar, Pizzol Damiano, Kentzer Nichola (2023)

Physical activity is beneficial for overall health; however, informal carers may have lower levels of physical activity than non-carers. The primary aim of this systematic review was to identify barriers and facilitators to physical activity from the perspective of carers internationally, excluding the UK. The study found that barriers to physical activity include lack of time, fatigue, lack of motivation and lack of support. Facilitators of physical activity include health and well-being as a motivator, using physical activity as a coping mechanism, and social support. Participating with the care recipient and care duties were both barriers and facilitators depending on the study or participant

Depends on whom you ask: Discordance in reporting spousal care between older women and men across European welfare states

Ricardo Rodrigues, Cassandra Simmons, Eszter Zólyomi, Afshin Vafaei, Johan Rehnberg, Selma Kadi, Marco Socci, Stefan Fors, Susan P. Phillips (2024)

Purpose: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health.

Materials and methods: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale.

Results: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent.

Conclusions: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Informal care for people with dementia in Europe

Ron Handels, Somboon Hataiyusuk, Anders Wimo, Anders Sköldunger, Christian Bakker, Anja Bieber, Alfonso Ciccone, Carlo Alberto Defanti, Andrea Fabbo, Sara Fascendin, Lutz Frölich, Chloé Gervès-Pinquié, Manuel Gonçalves-Pereira, Kate Irving, Raymond Koopmans, Patrizia Mecocci, Paola Merlo, Bernhard Michalowsky, Oliver Peters, Yolande Pijnenburg, Óscar Ribeiro, Geir Salbaek, Larissa Schwarzkopf, Hilde Verbeek, Marjolein de Vugt, Bob Woods, Orazio Zanetti, Bengt Winblad, Linus Jönsson (2025)

Introduction: Informal care estimates for use in health-economic models are lacking. We aimed to estimate the association between informal care time and dementia symptoms across Europe.

Methods: A secondary analysis was performed on 13,529 observations in 5,369 persons from 9 European pooled cohort or trial studies in community-dwelling persons with dementia. A mixed regression model was fitted to time spent on instrumental or basic activities of daily living using disease severity and demographic characteristics.

Results: Daily informal care time was 0.5 hours higher in moderate compared to mild and 1.3h higher in severe compared to mild cognitive impairment. Likewise, this was 1.2h and 2.7h for functional disability and 0.3h and 0.6h for behavioral symptoms in the same directions.

Discussion: Estimates can be used in both single- and multi-domain health-economic models for dementia in European settings.

Keywords: Dementia; costs; health-economic evaluation; informal care; resource use.

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

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

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

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

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

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

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

Costin J (2007)

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

Age Order and Children’s Agency

Närvänen, A-L., & Näsman, E. (2007)

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

Ambiguous Loss in Families of Children with Autism Spectrum Disorders

O'Brien, M. (2007)

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

Anhörig - omsorg och stöd

Johansson, L. (2007)

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

Anhörig - omsorg och stöd

Johansson, L. (2007)

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

Anhörig - omsorg och stöd

Johansson, L. (2007)

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

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

Carlbom, A., & Östman, M. (2007)

Sammanfattningsvis kan man säga att LSS-boende, som uttrycks av
informanterna i den här studien, har varit positivt för den boende själv och alla
som kommit i kontakt med honom eller henne. Det är tydligt i informanternas
berättelser att de och deras anhöriga, i samband med att LSS-boendet blivit
verklighet, har fått till en förändring av hela den sociala kontext de levde och
lever i. Man kan sammanfatta LSS-boendets sociala och psykologiska effekter i
några konkreta punkter för de anhöriga respektive de boende:
15
De anhöriga
De anhöriga befrias från den oro för den boendes välmående och praktiska
omständigheter som präglade vardagslivet före LSS-boendet. Detta boende
medför alltså en högre grad av vardaglig trygghet. De anhöriga får också en
avlastning av den emotionella anspänning det innebär att ha en familjemedlem
som lider av psykisk ohälsa. Dessutom erhåller de ett delat ansvar för den
familjebörda det innebär att ha en familjemedlem som lider av psykisk ohälsa. De
blir också avlastade det sociala stigma det kan innebära att ha en familjemedlem
som har ett psykiskt funktionshinder.
De boende
Den boende erhåller en struktur i vardagslivet på LSS-boendet som saknades vid
det tidigare boendet. Här finns också möjlighet att få hjälp med den personliga
omvårdnaden och att upprätta relationer specialister av olika slag, bland annat
läkare som kan övervaka eventuell medicinering. Den boende blir också avlastad
det sociala stigma som tidigare präglade relationen till framförallt grannar och
fastighetsägare.
Den generella slutsats som kan dras i den här studien är att denna form av boende
erbjuder en förhöjd livskvalité för samtliga parter. Sammantaget verkar alltså
denna boendeform gynna den psykiska hälsan för alla och kan därmed sägas bidra
till att hela samhället på ett eller annat sätt gynnas.

Anhörig-omsorg och stöd

Johansson L. (2007)

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

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

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

Auditory and visual lexical neighborhoods in audiovisual speech perception

Tye-Murray N, Sommers M, Spehar B. (2007)

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.

Barn som har föräldrar med utvecklingsstörning

Socialstyrelsen (2007)

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

Barn utan hem. Olika perspektiv

Andersson, G. & Swärd, H (2007)

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

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

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

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

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

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

Care trajectories in the oldest old. Diss.

Ernsth, Bravell, M. (2007)

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

Caregiver burden and coping: A prospective study of relationship between burden and coping in caregivers of patients with schizophrenia and bipolar affective disorder

Chadda, R. K., T. B. Singh, et al. (2007)

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

Children and young people’s experiences of UK childhood bereavement services

Rolls, L., & Payne, S. (2007)

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

Children's perceptions and experiences of care giving: A focus group study

Earley, L., Cushway, D. & Cassidy, T. (2007)

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

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

Clinically significant trauma symptoms and behavioral problems in a community-based sample of children exposed to domestic violence

Spilsbury, J. C., Belliston, L., Drotar, D., Drinkard, A., Kretschmar, J., Creeden, R., . . . Friedman, S. (2007)

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.

Collaboration between relatives of frail elderly patients and nurses in acute hospital wards : Dimensions, prerequisites and outcome (Bulletin from the unit of caring sciences, department of health sciences, faculty of medicine, 28).

Lindhardt, T. (2007)

The aim was to investigate collaboration between relatives of frail elderly patients and nurses in acute hospital wards, and to develop and test an instrument to investigate, from the relatives? perspective, dimensions of collaboration in this context and the association between collaboration and satisfaction with the hospital care trajectory. The underpinning assumption for the study was that relatives hold knowledge of the patients? situation, which is important for nurses to make a relevant and sufficient care plan. The first two studies were qualitative, investigating relatives? and nurses? experiences of the collaboration with each other. Eight relatives of elderly patients ³ 75 years of age, living at home and dependent on formal and informal help participated. Eight nurses (6 RN + 2 LPN) who conducted the discharge of the elderly patient participated in the second study. In the third study an instrument was developed for measuring collaboration, its prerequisites and outcomes from the relatives? perspective, and put through psychometric testing. In this study, and in the fourth study, which investigated the association between collaboration and satisfaction with the hospital care trajectory, 156 relatives of elderly patients participated. The context was acute medical and geriatric wards in two Danish hospitals. The lived experience of being a relative to a frail elderly patient revealed itself in two main essences: The history reflected the relationship and care history and was the frame of reference in which the hospital admission was interpreted and understood. The constituents were: The adult child, Parent for my mother, It is always in the back of my mind and A full time job. The essence Standing Guard encompassed the encounter with the hospital system and the constituents were: My God, is it now?, Powerless, If you relax, you fail, Watchdog and case manager and Those poor, poor people. The main theme in the interviews with nurses was Encountering relatives ? To be caught between ideals and practice and reflected that the nurses seemingly held two sets of conflicting attitudes towards relatives and the collaboration with them: One ideal and in accordance with their professional values, and another seemingly governing collaboration in practice. Themes were: The coincidental encounter ? the collaboration, which reflected that though ideally described as a structured process, collaboration appeared to be coincidental and rare; and Relatives ? a demanding resource. The sub themes were: Flee or fight ? the nurses? response, A matter of prioritising ? Barriers and promoters, The unwritten rules and The new relatives ? the demanding and unrealistic relatives. A model for collaboration was developed from literature and constituted the basis for development of instrument variables and items. In the factor analysis (PCA) five factors were extracted: ?Influence on decisions?, ?Quality of contact with nurses?, ?Trust and its prerequisites?, ?Achieved information level? and ?Influence on discharge?. The factor analysis supported the assumption that collaboration was a multi-dimensional construct characterised by shared decision-making and exchange of knowledge and information, with prerequisites such as quality of the contact and communication based on trust and respect. The instrument was mainly reliable and valid, although caution should be made due to the sample being small, and the design being cross sectional. Systematic dropout indicated that the study might have missed the most strained, the oldest and the least educated relatives. Further testing after a reduction of items as well as revising of the wording in some items is warranted. Dimensions of collaboration were predictors for the relatives? satisfaction with the hospital care trajectory, and lower ratings of collaboration were significantly associated with lower level of satisfaction. Further, powerlessness, guilt, having provided help less than one year and not providing psychosocial help were predictors for relatives? satisfaction with the hospital care trajectory. Whereas relatives rated poorly on influence on decisions and exchange of knowledge and information, the contact and relationship qualities with nurses were seemingly more satisfactory, although accessibility of nurses appeared to be a problem.

Consumer and carer participation in mental health care: The carer’s perspective: Part 2 – barriers to effective and genuine participation

Goodwin, V. and B. Happell (2007)

Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.

Patterns of care and support in old age

Sigurdardottir, S. (2013)

This study describes the situation for community living older people, 65 years of age and older in Iceland, analyzing their needs for care and services and how these needs are met. The study analyzes the relationship between the main providers of help and care, the formal caregivers and the informal carers. The study further depicts what kinds of care and support older informal caregivers provide and receive themselves and analyze what factors are related to providing care alone or in combination with other caregivers, informal and formal. The study also analyzes the relationship and mutual support between grandparents and grandchildren and whether there are gender differences in intergenerational relations and support. As little research has been conducted on informal care in Iceland, it is important to show the importance of the informal carers in the care paradigm. Two Icelandic studies were used for the descriptions and analysis. The main data source is the ICEOLD survey (Icelandic older people), based on a random representative national sample of 700 non-institutionalized persons in ages 65 – 79 years and 700 persons aged 80+. The final sample consists of 1,189 older persons to which an introduction letter was sent. They were contacted by phone a few days later and 782 persons, 341 men and 441 women, agreed to participate, giving a response rate of 66%. A study carried out among college students in Iceland, The Grammar School study, was also used to retrieve information on intergenerational relations between grandparents and grandchildren.

Pegasus: kurs för vuxna med adhd och deras närstående. Arbetsbok för kursansvariga

Hirvikoski, T., Waaler, E., Carlsson, J., Helldén, G., & Lindström, T. (2013)

Den andra upplagan av PEGASUS - kurs för vuxna med ADHD och deras närstående är en revidering och uppdatering av det kompletta psykoedukativa kursmaterialet från 2013. Inom många verksamheter har PEGASUS redan hunnit bli ett självklart första steg att erbjuda till vuxna med diagnosen ADHD.

PEGASUS har utvecklats för att bemöta behoven av information, erfarenhetsutbyte och utbildning i funktionsnedsättningen ADHD. Den andra upplagan av PEGASUS har reviderats för att på ett bättre sätt möta de varierande behoven i olika grupper och har uppdaterats med aktuell information bland annat om läkemedelsbehandling.

PEGASUS genomförs i grupp och ger ökad kunskap om ADHD, behandlingar, strategier och vad det finns för stöd att tillgå. Dessutom får deltagarna möjlighet att lära sig mer om sig själva och nå större förståelse för andras situation och på det sättet förbättra relationskvalitén. Gruppformatet ger många tillfällen för erfarenhetsutbyte med andra i liknande situation. PEGASUS är ett bra alternativ som en första psykologisk behandling efter diagnos.

Arbetsgruppen bakom PEGASUS har en lång samlad erfarenhet av arbete med personer med diagnosen ADHD. I Arbetsboken beskrivs och refereras till ett flertal studier där PEGASUS har prövats ut med goda preliminära resultat.

Personer med funktionsnedsättning – vård och omsorg den 1 oktober 2012

Socialstyrelsen (2013)

Statistiken i den här rapporten baseras på personnummerbaserade uppgifter som kommunerna lämnat in per den 1 oktober samt för oktober månad 2012 och visar att:

Drygt 20 500 personer med funktionsnedsättning bodde permanent i särskilt boende eller var beviljade hemtjänst i ordinärt boende. Det är något färre än i oktober 2011.
Drygt 16 400 personer med funktionsnedsättning var beviljade hemtjänst i ordinärt boende. Cirka 200 personer färre än i oktober 2011.
Cirka 31 procent av personerna mellan 0-64 år med biståndsbeslut om hemtjänst i ordinärt boende var beviljade mellan 1 och 9 hemtjänsttimmar per månad. Cirka 10 procent var beviljade 80 timmar eller mer. Det är samma fördelning som vid tidigare mättidpunkter.
Drygt 4 100 personer i åldern 0-64 med funktionsnedsättning bodde permanent i särskilt boende, ungefär 200 färre än i oktober 2011.
Cirka 18 300 personer i åldern 0-64 med funktionsnedsättning hade ett biståndsbeslut om boendestöd. Det är 800 personer fler än i oktober 2011.
Cirka 1 200 personer i åldern 0-64 med funktionsnedsättning hade biståndsbeslut om korttidsvård/korttidsboende, 4 300 om kontaktperson/kontaktfamilj och 5 700 om dagverksamhet.
Ungefär 29 400 personer i åldern 0-64 år med funktionsnedsättning någon gång under oktober månad mottagare av hälso- och sjukvård som kommunen ansvarade för. Nästan hälften av dessa var kvinnor, totalt var det 1 000 fler än i oktober 2011.

Positive and negative evaluation of caregiving among three different types of informal care relationships

Broese, M., et al. (2013)

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.

Posttraumatic stress disorder among preschoolers exposed to ongoing missile attacks in the Gaza war

Kaufman-Shriqui, V., Webeloff, N., Faroy, M., Meiri, G., Shahar, D. R., Fraser, D., Harpaz-Rotem, I. (2013)

BACKGROUND:
The prevalence and manifestation of posttraumatic stress symptoms in young children may differ from that observed in adults. This study examined sociodemographic, familial, and psychosomatic correlates of posttraumatic stress disorder (PTSD) among preschool children and their mothers who had been exposed to ongoing missile attacks in the Gaza war.

METHODS:
One hundred and sixty-seven mothers of preschoolers (aged 4.0-6.5 years) were interviewed regarding PTSD and psychosomatic symptomatology of their children, as well as their own reactions to trauma.

RESULTS:
Fourteen mothers (8.4%) and 35 children (21.0%) screened positive for PTSD. Sociodemographic characteristics were not associated with PTSD among mothers or children. Among children, the only significant risk factor was having a mother with PTSD (OR = 12.22, 95% CI 2.75-54.28). Compared to children who did not screen positive for PTSD, those who did screen positive displayed significantly higher rates of psychosomatic reactions to trauma, most notably constipation or diarrhea (OR = 4.36, 95% CI 1.64-11.60) and headaches (OR = 2.91, 95% CI 1.07-7.94).

CONCLUSIONS:
Results of this study add to the burgeoning literature on child PTSD, emphasizing the important role of maternal anxiety and the psychosomatic reactions associated with exposure to ongoing traumatic experiences in young children.

Predicting Language Outcomes for Children Learning Augmentative and Alternative Communication: Child and Environmental Factors

Brady, N. C., Thiemann-Bourque, K., Fleming, K., & Matthews, K. (2013)

PurposeTo investigate a model of language development for nonverbal preschool-age children learning to communicate with augmentative or alternative communication.

MethodNinety-three preschool children with intellectual disabilities were assessed at Time 1, and 82 of these children were assessed 1 year later, at Time 2. The outcome variable was the number of different words the children produced (with speech, sign, or speech-generating devices). Children's intrinsic predictor for language was modeled as a latent variable consisting of cognitive development, comprehension, play, and nonverbal communication complexity. Adult input at school and home, and amount of augmentative or alternative communication instruction, were proposed mediators of vocabulary acquisition.

ResultsA confirmatory factor analysis revealed that measures converged as a coherent construct, and a structural equation model indicated that the intrinsic child predictor construct predicted different words children produced. The amount of input received at home, but not at school, was a significant mediator.

ConclusionsThe hypothesized model accurately reflects a latent construct of Intrinsic Symbolic Factor (ISF). Children who evidenced higher initial levels of ISF and more adult input at home produced more words 1 year later. The findings support the need to assess multiple child variables and suggest interventions directed to the indicators of ISF and input.

Prevalence of adolescents who perceive their parents to have alcohol problems: A Swedish national survey using a web-panel

Elgán, TH., & Leifman, H. (2013)

The primary aim is to estimate the prevalence of Swedish adolescents who perceive their parent(s) to have alcohol problems. Additional research questions pertain to the prevalence of adolescents who think someone close to them drinks too much alcohol and if this has hurt them or caused them problems.
A cross-sectional design was employed using a web-based survey targeted to 1000 Swedish 16-19-year-olds randomly selected from a web panel. The questionnaire included the CAST-6 scale, used to assess whether or not participants perceived their parents' alcohol consumption as problematic, and questions relating to whether or not they think someone close to them drinks too much and if this has caused them problems. Data was weighted using a post-stratification procedure.
The proportion of adolescents classified as having parents with alcohol problems was 20.1%. Further, 44.0% reported that they think someone close to them drinks too much alcohol and 9.6% that this has hurt them or caused them problems.
These results indicate that the problem is widespread. Our findings are similar to previous research where a more indirect methodology has been adopted, using either psychiatric interviews or self-reported alcohol consumption of adults, to estimate the magnitude of the problem.

Samtalets betydelse

Svensson J-O. (2013)

Detta inspirationsmaterial om samtalets betydelse som anhörigstöd bygger på det material som kommit fram i två blandade lärande nätverks diskussioner och dokumentation under åren 2011 till 2013. Sammanlagt genomfördes sex träffar i respektive nätverk. Ur sammanställningarna, har olika teman och frågeställningar identifierats. Dessa teman utgör rubrikerna i detta inspirationsmaterial.

Getting in touch' with people with severe learning disabilities

Caldwell, P. (1997)

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

Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project

D’Amen Barbara, Socci Marco, Di Rosa Mirko, Casu Giulia, Boccaletti Licia, Hanson, Elizabeth, Santini Sara (2022)

Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

Developing measures of perceived life quality - Results from several national surveys

Andrews, F. M., & Withey, S. B. (1974)

This report presents the current status of a series of studies oriented toward the assessment of perceived life quality. The conceptual model proposes that a person's overall sense of life quality is understandable as a combination of affective responses to life 'domains', which are of two types-role situations and values. Over 100 items used to measure a wide variety of domains and 28 items assessing perceived overall life quality are presented. Various subsets of these items were used in interviews with several representative samples of American adults. Based on these data the domain items were grouped into a smaller number of semi-independent clusters which were internally stable across 10 different subgroups of the respondents and whose interrelationships were highly replicable in independent national samples. A series of analyses, some replicated in more than one survey showed: (1) an additive combination of 12 selected domains explained 50–60% of the variance in an index of overall life quality, (2) neither other domains nor several social characteristic variables contributed additional explanatory power, (3) this level of explanation was achieved in each of 22 subgroups of the population, and (4) additive combinations of domains worked as well as more complicated combinations.

Challenges of combining work and unpaid care, and solutions: A scoping review

Spann A, Vicente J, Allard C, Hawley M, Spreeuwenberg M, de Witte L (2019)

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

Children affected by parental illness or parental substance abuse: young carers, well-being and quality of life

Kallander, Ellen Katrine (2019)

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

Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants.

Israelsson-Skogsberg, Åsa (2019)

Dissertation

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

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

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

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

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

ICF - en grund för tvärprofessionell journaldokumentation

SoS (2006)

När IT-stöden i vården utvecklas blir behovet av enhetliga begrepp och termer mera påtagligt. Detta betonas särskilt i såväl InfoVU-projektets slutrapport som i regeringens Nationella IT-strategi för vård och omsorg.

Flera landsting, sjukhus, kliniker och privata vårdgivare har under de senaste åren valt att använda Världshälsoorganisationen WHOs International Classification of Functioning, Disabilty and Health (ICF) som utgångspunkt för gemensamma termer och begrepp, vid införande av elektroniska journalsystem. ICF ingår i WHOs Family of International Classifications med det uttalade syftet att dels komplettera sjukdomsklassifikationen ICD, dels tillhandahålla ett tvärprofessionellt språk för att beskriva hälsa.

Syftet med förstudien är att få besked om ICF kan ligga till grund för fortsatt arbete med struktur och terminologi för ändamålsenlig vård- och omsorgsdokumentation och tydliggöra likheter och skillnader i dagens användning av ICF i e-journaler.

En enkät med förfrågan om man använder ICF skickades till Socialstyrelsens kontaktnätverk för terminologifrågor. Totalt inkom 36 svar varav 29 fördelade sig på 17 olika landsting, två svar kom från kommuner, fyra svar kom från privata företag och ett svar från en yrkesorganisation. I 13 av svaren angavs att man på något sätt använde, eller planerade att använda, ICF som underlag för struktur och innehåll i e-journalen. Ett kontaktnätverk för erfarenhetsutbyte etablerades och två arbetsseminarier genomfördes med syftet att besvara förstudiens frågeställningar.

I Danmark och Norge har man baserat på ICF utvecklat underlag för insamling av individbaserad vård- och omsorgsstatistik.

Inom ramen för InfoVU-projektet genomfördes tre olika försök baserade på ICF: webbaserad checklista för vårdplanering och överföring av information mellan olika vård- och omsorgsgivare, formulering av behov inom kommunal äldreomsorg samt individbaserad verksamhetsuppföljning.

De professionella organisationerna för arbetsterapeuter, sjukgymnaster och sjuksköterskor har, baserat på ICF, utarbetat förslag till en tvärprofessionell klassifikation för insatser och åtgärder, som ska ingå i Socialstyrelsens Klassifikation av vårdåtgärder (KVÅ).

I landstinget i Värmland och i Västmanlands läns landsting har man tagit beslut på att basera e-journalens struktur och innehåll på ICF. I vårdföretaget Kvalita AB är e-journalen sedan flera år tillbaka baserad på ICF. Inom andra landsting och regioner har man tagit delar av ICF som grund för dokumentationen. Rehabmedicin i Jönköping är ett exempel där ICF ligger till grund för den tvärprofessionella rehabiliteringsplanen.

Vid Karolinska Institutet och vid Örebro universitet används ICF i utbildningen av sjukgymnaster och arbetsterapeuter och som ramverk till forskningen inom respektive område.

Socialstyrelsen har beskrivit vård- och omsorgsassistenternas kvalifikationer med hjälp av ICFs struktur och innehåll.

Det råder konsensus, bland representanterna för de olika verksamhetsområden och professioner som deltagit i förstudien, om att ICF är en bra utgångspunkt för att uppnå en tvärprofessionell vård- och omsorgsdokumentation - en dokumentation som språkligt och innehållsmässigt kan vara en brygga mellan socialtjänst och hälso- och sjukvård.

Erfarenheter från drift, försök och andra tester visar att ICF behöver kompletteras. ICF saknar bl.a. begrepp för att beskriva vårdförlopp, t.ex. kontaktorsak och sjukhistoria. Ärftlighet och tidigare erfarenheter av vård och omsorg är annat som inte finns i ICF.

Språkliga anpassningar måste göras för att ICF ska bli användbar i vård och omsorgsdokumentationen, t.ex. genom att långa och otympliga begreppsbenämningar ges enklare, mera hanterbara s.k. "trivialnamn".

Det finns likheter och skillnader i användandet. Omfattningen av ICF begrepp som förts in i journaldokumentationen varierar. I några fall använder man i princip bara ICF-komponenterna på en övergripande nivå, medan andra byggt upp detaljerade sökordsstrukturer (ca 1000 begrepp). Några använder ICF mycket konsekvent medan andra blandar ganska friskt mellan traditionella sökord och ICF.

Förstudien pekar på följande områden som utgångspunkt för fortsatt arbete med ICF som grund för ändamålsenlig vård- och omsorgsdokumentation:

samordna arbetet inom ramen för den nationella informationsstrukturen och det nationella terminologiarbetet
tillvarata erfarenheterna av praktiska tillämpningar och försök
rikta information, utbildning och förankring till vård- och omsorgens huvudmän och deras personal
tillvarata de berörda yrkesorganisationernas kunskap och intresse att medverka till den tvärprofessionella dokumentationen.
Om Sverige beslutar om att gå med i SNOMED CTs internationella utvecklingsarbete och samtidigt väljer att basera den tvärprofessionella dokumentationen på ICF, är det viktigt att se till att ICFs struktur och terminologi införlivas i SNOMED CT

Oberoende av vilken begreppsstruktur som väljs för den tvärprofessionella e-journalen måste det finnas en etablerad organisation för förvaltning och underhåll. Socialstyrelsens termbank kan vara en del av denna resurs.

Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities

Petry, K., & Maes, B. (2006)

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

Omsorg människor emellan. En översikt av omsorgsgivande i den svenska befolkningen. (förf. Malmberg B. & Sundström G.).

Socialstyrelsen (2006)

Omsorg som ges av anhöriga och närstående är omfattande i alla åldrar och regioner i Sverige, men allra mest bland personer i gruppen 45-64 år, då denna omfattar tre av tio personer. Det finns tecken på att omsorg ökar generellt, men omfattningen beror delvis på hur frågorna ställs: från cirka 10 till väl över 20 procent av befolkningen ger omsorg, beroende på hur man definierar vård och omsorg. Omkring 7 procent ger mer omfattande och in¬tensiv omsorg, med dagliga insatser och med inslag av personlig omvårdnad.

Den exakta nivån för omsorgen är svår att fastställa, men den är i varje fall hög och väl i nivå med den informella omsorgen i andra länder. Intensiteten - tidsinsatsen - är dock möjligen mindre än i t.ex. Spanien. En viktig skillnad är också att nordisk omsorg mest sker mellan hushåll, den kontinentalsydeuropeiska mer inom hushållen.

En stor men ingalunda total del av omsorgen riktar sig till äldre personer. Intressant är att även äldre ofta är omsorgsgivare, för partner och andra. Omsorgsgivandet förefaller vara något mer jämställt i Sverige än på kontinenten, dvs. svenska män är omsorgsgivare nästan lika ofta som kvinnor, om än inte lika intensivt, och partneromsorg är ganska jämställd i Sverige. Anhörigomsorg tycks i Sverige vara klasslös, dvs. ungefär lika vanlig i alla samhällsskikt.

Arbete och omsorg låter sig ofta förenas, både för män och för kvinnor. Orsaken är troligen att omsorgsgivande är vanligast i åldrar då många av andra skäl "trappat ned" förvärvsarbetet och att omsorgen mer sällan är omfattande, daglig och "tung" - för de flesta.

Konsekvenser för arbetslivet får omsorgen ibland, men i stort sett endast när det handlar om omsorg för partner, föräldrar eller vuxna barn. Totalt är cirka var femte yrkesverksam också omsorgsgivare. Dessa tycks inte generellt ha sämre hälsa än de som inte har ett sådant åtagande. Om något gäller det motsatta, dvs. att omsorgsgivare har bättre hälsa än de som inte är omsorgsgivare. I en mindre grupp som vårdar partner eller annan nära anhörig kan dock hälsoproblem förekomma.

Anhörigomsorg i Sverige och offentlig omsorg, främst hemtjänst, överlappar ofta varandra. Detta gäller särskilt hjälp till ensamboende äldre, en stor mottagargrupp. Många anhöriga klarar på egen hand sitt åtagande, men åtskilliga uttrycker också behov av offentligt stöd. Sådant stöd måste troligen ta sig olika former å ena sidan för dem som hjälper någon de bor tillsammans med och å andra sidan för dem - majoriteten - som hjälper någon i ett annat hushåll. Där är sannolikt en utbyggd och välfungerande hemtjänst och annan öppen omsorg ofta en lämplig stödform.

Mer än en miljon svenskar är i dag omsorgsgivare för närstående. En del av den ökning man iakttagit beror troligen på ökande behov, men avspeglar nog också allmänt växande sociala nätverk: fler anhöriga betyder mer omsorgsgivande. Till en del kan ökande anhörigomsorg nog också härledas till att den offentliga omsorgen krympt i relation till hjälpbehoven i befolkningen.

On health, ability and activity: Comments on some basic notions in the ICF

Nordenfelt L. (2006)

Purpose. The purpose of this article is to highlight and at the same time criticize the holistic view of health expressed in the "International Classification of Functioning, Disability and Health (ICF)". Particular attention will be paid to the idea suggested in the ICF that not only the ability to perform a specified action but also its actual performance is included in the person's health. My argument intends to show that this is an untenable position.
Method. The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinctions between ability, opportunity, activity and will. My analysis also uses some insights from the contemporary philosophical discussion of health concepts.
Conclusions. Ability (or capacity) and its opposite disability (or incapacity) are essential ingredients in the implicit philosophy of health of the ICF. However, the ICF also puts an emphasis on the actual performance of actions. This is entailed by the performance qualifier that is included in the ICF. I give some arguments for questioning the relevance of this qualifier if it is intended to have a place in the concept of health or have a general function for decisions in health care or rehabilitation. Instead I suggest the introduction of an opportunity qualifier, which could fulfill some of the purposes intended for the performance qualifier.

Online counselling: The motives and experiences of young people who choose the Internet instead of face to face or telephone counselling

King, R., Bambling, M., Lloyd, C., Gomurra, R., Smith, S., Reid, W., & Wegner, K. (2006)

This study used a Consensual Qualitative Research methodology to explore the motivations and experiences of young people who utilize the Internet for counselling over other counselling media. Semi-structured online group interviews (focus groups) were conducted with 39 participants from the Kids Help Line, a 24-hour national telephone and counselling service located in Australia. Analysis revealed five domains relevant to the adolescents' motives and experiences and the frequency of categories within and across cases were analyzed to generate and understand themes and patterns. Specific motivators and barriers are identified and discussed, as are implications for practice and continued research.

Reducing Conduct Problems Among Children Brought to Women’s Shelters: Intervention Effects 24 Months Following Termination of Services

McDonald, R., Jouriles, E. N., & Skopp, N. A. (2006)

This study evaluated the long-term effects of Project SUPPORT, an intervention designed to reduce conduct problems among children in domestically violent families. Participating mothers had sought shelter because of domestic violence and had at least one child (4-9 years old) exhibiting clinical levels of conduct problems. Results indicated that at 2 years posttreatment, 15% of children in families in the Project SUPPORT condition exhibited clinical levels of conduct problems compared with 53% of those in the existing services condition. In addition, mothers of children in the Project SUPPORT condition reported their children to be happier, to have better social relationships, and to have lower levels of internalizing problems, relative to children in the comparison condition. Mothers in the Project SUPPORT condition were less likely to use aggressive child management strategies and were less likely to have returned to their partners during the follow-up period.

Stressors, quality of the child-caregiver relationship, and children’s mental health problems after parental death: the mediating role of self-system beliefs

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

Abstract
Investigated whether three self-system beliefs, fear of abandonment, coping efficacy, and self-esteem, mediated the relations of stressors and caregiver-child relationship quality with concurrent and prospective internalizing and externalizing problems in a sample of children who had experienced parental death in the previous 2.5 years. The cross-sectional sample consisted of 340 children ages 7-16 and their surviving parent/current caregiver; the longitudinal analyses employed a subset of this sample that consisted of 100 children and their parents/caregivers who were assessed at three time points. A multirater, multimethod measure of caregiver-child relationship quality and a multirater measure of children's mental health problems were used. The cross-sectional model supported a mediational relation for fear of abandonment, coping efficacy, and self-esteem. The three-wave longitudinal model showed that fear of abandonment at Time 2 mediated the relation between stressors at Time 1 and internalizing and externalizing problems at Time 3. Implications of these findings for understanding the development of mental health problems in parentally bereaved children and designing interventions for this at-risk group are discussed.

Suicide attempts and severe psychiatric morbidity among former child welfare clients – a national cohort study

Vinnerljung B, Hjern A & Lindblad F (2006)

BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.

Suicide attempts and severe psychiatric morbidity among former child welfare clients- A national cohort study

Vinnerljung, B., Hjern, A., & Lindblad, F. (2006)

Abstract
BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.

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

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

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

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

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

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

Toward a comprehensive developmental model for major depression in men

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

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

Treating trauma and traumatic grief in children and adolescents

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

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

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

Dag, Munir (2006)

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

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

Olsson, Martin (2006)

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

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

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

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

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

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

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

Using the ICF in goal setting: Clinical application using Talking Mats

Bornman J, Murphy J. (2006)

Purpose. The purpose of this article is to suggest how Talking Mats® can be used in accordance with the International Classification of Functioning, Disability and Health (ICF) proposed by the World Health Organisation (WHO) when setting intervention goals.
Method. A theoretical framework for using Talking Mats® when setting intervention goals in accordance with the ICF is provided.
Conclusions. An international system such as the ICF offers a conceptual framework that can be used to set appropriate goals for intervention. Talking Mats® on the other hand can be seen as the strategy through which individuals can be empowered to participate in this goal-setting activity.

Who knows best? Evidence-based practice and the service user contribution

Glasby J., P. B. (2006)

This paper reviews the assumptions underlying traditional medical research and critiques the concept of 'evidence-based practice'. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on 'knowledge-based practice', recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.

Widowhood and race

Elwert, F., & Christakis, N. A. (2006)

The health effects of marital status are frequently cited in the current debate on marriage promotion, but little is known about how marital health effects vary across groups. This article assembles the largest properly longitudinal and nationally representative dataset of elderly married couples in the United States (N = 410,272 couples) and provides strong evidence that the "widowhood effect"—how the death of a spouse increases the mortality of the survivor-varies substantially by race. The authors find that whites married to whites suffer a large and enduring widowhood effect. By contrast, blacks married to blacks do not suffer a detectable widowhood effect, possibly because they manage to extend the survival advantage of marriage into widowhood. For racially intermarried men, wife's race appears to dominate the size and presence of the widowhood effect entirely, regardless of husband's own race. These results likely arise from differences in the marital cultures and marital contexts of black and white couples. More generally, these results demonstrate that the health effects of social ties depend on the individual attributes of the actors they connect.

Vuxna med förvärvad traumatisk hjärnskada – omställningsprocesser och konsekvenser i vardagslivet. En studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada

Strandberg, Thomas (2006)

The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life.Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition.Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth's (1995) theory of social recognition. The central construct of 'recognition' was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference.Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition.

Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice

Peleg-Oren N, Teichman M. (2006)

This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.

Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice.

Peleg-Oren N, Teichman M. (2006)

This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.

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

Åman, K. (2006)

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

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

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

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

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

Åman, K. (2006)

Doktorsavhandling i pedagogik

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

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

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

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

Bibliotherapy: using books to help bereaved children

Berns, C.F. (2003)

This article explores bibliotherapy as a process in which death-related literature is used to help bereaved children cope with experiences of death and loss. For that exploration, this article defines bibliotherapy, offers an argument in support of its value, and suggests how a potential bibliotherapist might begin. Suggestions are made for selecting and using stories in bibliotherapy. Since most bibliotherapy is actually used as an optional tool in bereavement support groups, guidelines are offered as to how it might best be implemented in that context. Much of this discussion is also relevant to the use of bibliotherapy on a one-to-one basis involving a particular child and an adult guide. Examples of stories and books for children that I have used in bibliotherapy are mentioned throughout this article.

Does grief counseling work?

Jordan, J.R. & Neimeyer, R.A. (2003)

Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.

Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression

Litrownik, A. J., Newton, R., Hunter, W. M., English, D., & Everson, M. D. (2003)

This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.

Föräldrastöd i teori och praktik

Ferrer-Wreder, L., H. Stattin, Karlsson, E. (2003)

Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.

Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach

Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J. (2003)

Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.

Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.

Dawe S, Harnett PH, Rendalls V, Staiger P. (2003)

Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

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

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

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

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

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

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

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

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

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

AAC and Scripting Activities to Facilitate Communication and Play

Taylor, R. and T. Iacono (2003)

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

Action theory, disability and ICF

Nordenfelt L. (2003)

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

Adjö Herr Muffin

Ulf Nilsson, Anna-Clara Tidholm (2003)

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

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

Velleman R, Templeton L. (2003)

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

Anhörigskapets uttrycksformer

Jeppsson-Grassman, E. (2003)

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

Children exposed to domestic violence and child abuse: Terminology and taxonomy

Holden, G. W. (2003)

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

Children of Mothers with Serious Substance Abuse Problems: An Accumulation of Risks.

Conners NA, Bradley RH, Mansell LW, Liu JY, Roberts TJ, Burgdorf K, et al. (2003)

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

Common Questions about AAC Services in Early Intervention

Cress, C. J., & Marvin, C. A. (2003)

Children and adults with developmental delays have benefited from the use of augmentative and alternative
communication (AAC) systems to develop language skills necessary for more generative and functional communication.
Beginning communicators however, have historically been considered too young or too pre-linguistic
and therefore have not been introduced to AAC systems until behaviors, thought to be prerequisites,
have been noted. Recent research and theories about early communication development have challenged this
traditional practice and broadened the scope of what is considered to be AAC. Practitioners and parents unfamiliar
with early AAC options may not recognize possible applications of communication strategies used with
typically developing children and older persons with developmental disabilities. AAC is applicable at all ages
for learning communication roles and behaviors as well as for functional communication for persons who do
not yet demonstrate clear referential symbol use. This article addresses nine questions that are frequently asked
about early introduction of AAC systems to children under 3 years of age. Rationales and strategies are provided
that can assist early interventionists and parents in considering AAC options for children at risk for being
unintelligible or non-speaking.

Communicative spontaneity of children with high support needs who use augmentative and alternative communication systems I: Classroom spontaneity, mode, and function

Carter, M. (2003)

In the present study, the communicative spontaneity of 23 children with high support needs who used Augmentative and Alternative Communication (AAC) in a classroom setting was evaluated. In contrast to previous research, spontaneity was evaluated on a continuum rather than being treated as a binary variable. Spontaneity was found to be highly variable, but some students clearly lacked the range of spontaneity that would be associated with fully functional communication. Aided AAC systems were notably less spontaneous than signing or nonsymbolic communication. There was also evidence of systematic variation in spontaneity across pragmatic function, with instrumental functions being more spontaneous than commenting. The results of the present study highlight the need to consider spontaneity when assessing individuals who use AAC systems.

Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!

COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H. (2003)

Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.

Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.

Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.

Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.

Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.

Correlational and experimental study of resilience in children and parentally bereaved children

Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T. (2003)

This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).

The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.

Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients

Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al. (2003)

Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.

Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.

Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.

Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

Den svenska psykiatrireformen. Bland brukare, eldsjälar och byråkrater

Markström, U. (2003)

Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.

De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.

Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.

Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.

I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
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Den tatuerade mamman

Jaquelin Wilson (2003)

Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?

Evaluation of a stroke family support organiser: a randomized controlled trial.

Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M. (2003)

Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.

Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.

Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.

Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.

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

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

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

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

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

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

Experiences of parents with a son or daughter suffering from Schizophrenia

Ferriter M, Huband N. (2003)

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

Family-Based Interventions for Substance Use and Misuse Prevention

Kumpfer KL, Alvarado R, Whiteside HO. (2003)

Because "substance abuse" is a "family disease" of lifestyle, including both genetic and family environmental causes, effective family strengthening prevention programs should be included in all comprehensive substance abuse prevention activities. This article presents reviews of causal models of substance use and evidence-based practices. National searches by the authors suggest that there is sufficient research evidence to support broad dissemination of five highly effective family strengthening approaches (e.g., behavioral parent training, family skills training, in-home family support, brief family therapy, and family education). Additionally, family approaches have average effect sizes two to nine time larger than child-only prevention approaches. Comprehensive prevention programs combining both approaches produced much larger effect sizes. The Strengthening Families Program (SFP) is the only one of these programs that has been replicated with positive results by independent researchers with different cultural groups and with different ages of children. Few research-based programs have been adopted by practitioners, partly because of technology transfer issues. Overall, research on ways to improve dissemination, marketing, training, and funding is needed to improve adoption of effective prevention programs.

The impact of leisure options on the frequency and spontaneous communication production of a young child with multiple disabilities

Chan, J. B. and D. T. May (1999)

Leisure options were used to facilitate the communication development of a young child with severe multiple disabilities who used augmentative communication. The intervention consisted of selecting a number of leisure options through consultation with the child's mother and teacher about the child's leisure preferences and making available the leisure options at each intervention session. Twelve intervention sessions were carried out over a three month period. The results of this descriptive study showed that with the introduction of leisure options as part of intervention, the child demonstrated increased vocalisations, words and word approximations, communicative gestures and use of signs. The child also showed an increased desire to communicate. The findings indicate the usefulness and efficacy of leisure options as a potential intervention procedure in promoting the communication development of children with disabilities.

The role of community mental health nurses in educating clients and families about schizophrenia

Fung, Carl & Fry, Anne (1999)

The aim of the study was to investigate the role of community mental health nurses in educating clients and families about schizophrenia. A random sample of community mental health nurses was surveyed using a postal questionnaire. Results showed that most nurses did not use a specific approach for education. Families were educated when clients were admitted to hospital and clients were included when they regained the ability to process information. All nurses provided practical advice to families coping with clients' unpredictable behaviours. The client's home was mostly used for education. Clients and families were often in denial of the illness. Time constraints restricted the nurses' role of providing education. Nurses reported that psycho-educational theories or models were not incorporated into their basic professional education. Nurses require the necessary knowledge, skills and confidence to competently perform this role

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

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

Background

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

Objective

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

Patients and Methods

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

Results

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

Conclusions

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

Vår son har schizofreni : familjeröster

Ahnlund M., Rosén I., Lundin L. (1999)

Information till patienter och anhöriga om schizofreni. Boken bygger på personliga intervjuer med 17 föräldrar ur 10 familjer. Den består huvudsakligen av citat ur dessa intervjuer, med våra kommentarer som sammanbindande länkar.

Challenges in evaluating childhood bereavement services

Rolls, L. (2011)

This paper discusses the evaluation of childhood bereavement services in the UK policy context and some of the challenges this presents. Two key difficulties are discussed: the lack of any clear, agreed outcomes from bereavement interventions with children, and the challenge of evaluating the complex social processes that bereavement interventions involve. Two recommendations are made to address these in the short term and to generate data for wider research. These are: to strengthen services' existing evaluation strategies, and to develop a routine evaluation package that can be used by all services. This would comprise a basic data set, a user satisfaction questionnaire, and a childhood bereavementfocused clinical outcome routine evaluation measure. In the longer term, further research is recommended, including UK-based longitudinal studies.

Children with medical complexity: an emerging population for clinical and research initiatives

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011)

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

Children’s representatives in psychiatric services: What is the outcome?

Östman, M., & Afzelius, M. (2011)

Background: Psychiatric services have established children's representatives in an effort to support children of mentally ill patients.
Material: Twenty two specially designated children's representatives and 19 other staff members were asked how they conceived the role of children's representatives and if those representatives had the responsibility of identifying children of mentally ill patients.
Discussion: Children's representatives expressed difficulty in functioning as advocates for children whose parents were being treated for mental illness. Members of the psychiatric staff, although aware their patients had children, seldom met them since they focused on the adults.
Conclusions: More than one third of all patients seeking psychiatric care have children, yet children's representatives and other staff members seldom meet them.

Evaluation of a therapeutic residential intervention for traumatically bereaved children and young people

Trickey, D. & Nugus, D. (2011)

ABSTRACT Child bereavement interventions are rarely subjected to rigorous evaluation, so there is scant evidence in the literature to support their efficacy. This article reports the evaluation of a residential group programme developed by the UK charity Winston's Wish for children and young people and their parents/carers bereaved in traumatic circumstances (murder or manslaughter). A number of validated psychometric measures were taken pre- and post-intervention, and the results indicated positive outcomes for participants. Further research is needed to shed more light on which aspects of bereavement interventions are effective for which children and young people. However, the study does demonstrate that it is possible to conduct scientifically objective and rigorous evaluations of bereavement work with children and young people.

His helping hands – adult daughter´s perceptions´ of fathers with caregiving responsibility

Eriksson, H., Sandberg, J., Holmgren, J., & Pringle, K. (2011)

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

Kvinnors position som informella vårdare har ofta tagits för givet i forskning om och socialpolitisk styrning av informell vård inom familjen i västeuropa, medan relativt få diskussioner har förts om mäns delaktighet och ansvar för densamma. Män som helt oförutsett hamnar i en situation i livet där de måste bestämma sig för om man ska ta sig an ett påtagligt vårdansvar går på många sätt bortom alla de förutsättningar som män vardagsvis har att hantera i livet. Genom att undersöka vårdande mäns insatser i sina familjer kan man lära sig en del av vad som faktiskt sker när män tar på sig ett långvarigt vårdansvar. I denna studie har vi intervjuat åtta döttrar som växt upp och/eller levt nära en pappa som under lång tid vårdat sin partner i det egna hemmet. Resultatet visar att när män har ett långvarigt vårdansvar så kommer det också något gott ur de kunskaper de fått av vårdandet i relation till de egna barnen. Alla döttrar som vi intervjuat prisar sina fäders insatser och -hans hjälpande händer- därför att det hade gett dem en närmare och mer "genuin" relation. Resultatet visar också att vårdansvaret för männen inneburit att de bryter mot rådande konventioner om vad manlighet är och på olika sätt fått hantera och betala för det priset i det offentliga livet. Ett långvarigt och påtagligt vårdansvar innebär således en transformering av sociala relationer, privat och offentligt samt att presentera ett alternativt sätt att vara man på. Avslutningsvis föreslås en mer genusbaserad förståelse och ett mer strategiskt arbets- och förhållningsätt bland professionella, i socialt och välfärdsarbete, i mötet med döttrar och andra familjemedlemmar som stödjer sina vårdande fäder.

Min syster fick Alzheimer – om vård och bemötande ur ett anhörigperspektiv

Andersson, Irene (2011)

Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.

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

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

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

På väg mot hela vägen. En utvärdering av ”Hela vägens psykiatri” i Gävleborg

Finn, Bengt & Bromark, Kristina (2011)

En rad tragiska händelser i början av 2000-talet som får stor massmedial uppmärksamhet är startpunkten för utredningen Nationell psykiatrisamordning. Utredningen syftade till att se över flera av de områden som berör social omsorg och rehabilitering av personer med psykisk sjukdom eller psykiska funktionsnedsättningar. Statliga stimulansmedel avsattes att användas till kompetenshöjande åtgärder för "baspersonal" inom landstingets psykiatri och kommunernas socialtjänst. 2008 ansökte sex kommuner i Hälsingland och landstinget i Gävleborg om dessa medel och projektet som startas får namnet "Hela vägens psykiatri i Gävleborg".
Det övergripande målet med projektet "Hela vägens psykiatri i Gävleborg" är att förstärka kompetensen bland personal som i sitt dagliga arbete kommer i kontakt med personer med psykisk sjukdom eller psykisk funktionsnedsättning. Kompetenssatsningen syftar till att öka den enskildes (brukarens/patientens) möjligheter till integration i samhället och att leva ett självständigt liv.

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

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

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

Theorethical perspectives on siblings relationships

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

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

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

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

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

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

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

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

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

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

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

A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007

Nepal B, Brown L, Ranmuthugala G, Percival R. A (2011)

Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.

A Preliminary Study of an Extension of a Community Dialectic Behaviour Therapy (DBT) Programme to Adolescents in the Looked After Care System

James AC, Winmill L, Anderson C, Alfoadari K. A (2011)

Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oliveros A, Kaufman J. (2011)

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

Keywords: Substance Abuse, Child Welfare, Treatment

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

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

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

AKK-Alternativ och kompletterande kommunikation för personer med autism.

Thunberg, G. (2011)

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

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

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

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

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

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

Annas pappa får rättspsykiatrisk vård

Alphonce, Elisabet (2011)

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

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

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

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

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

Association between the caregiver's burden and physical activity in community-dwelling caregivers of dementia patients

Hirano A, Suzuki Y, Kuzuya M, Onishi J, Hasegawa J, Ban N, et al. (2011)

Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.

Attentional processes in interactions between people with profound intellectual and multiple disabilities and direct support staff

Hostyn, I., Neerinckx, H., & Maes, B. (2011)

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.

I sinnenas värld. Rörelse, kroppsuppfattning

Feldtman K. (1998)

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

Identification of intentional communication in students with severe and multiple disabilities

Iacono T, Carter M, Hook J. (1998)

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

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

SOU 1998:31 (1998)

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

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

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

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

Language within our grasp

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

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

Mother´s stories of the school-age child´s experience with the mother´s breast cancer

Zahlis, E. H. and F. M. Lewis (1998)

Semistructured interviews were conducted with 26 mothers who had one or more children(N = 36) aged 8 to 12 years when they were diagnosed with early stage breast cancer. Formal methods were used to analyze the content of the data inductively. Mothers identified times during their diagnosis and treatment that were most difficult for their children, behaviors they observed indicating that the child was having a difficult time, and factors that prevented them from helping the child during those difficult times. The data provide a partial basis for developing materials, programs, and services designed to minimize the children's distress and to enhance the effectiveness of' parenting when a mother has early stage breast cancer.

Narrative Research. Reading, Analysis and Interpretation

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

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

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

Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice

Dore MM, Doris JM. (1998)

The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.

Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice.

Dore MM, Doris JM. (1998)

The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.

Samhällets stöd till människor med funktionshinder

Direktiv (1998)

Som förälder till barn med funktionsnedsättning har man laglig rätt till stöd från samhället. De flesta insatser måste man söka själv och därför är det bra att känna till vilken typ av hjälp man har rätt till.

Sofia vuxen med sitt MBD

Tikkanen, Märta (1998)

I Sofias egen bok, som kom ut för 15 år sedan, beskrev Märta Tikkanen hur det är att ha och vara ett mbd-barn. Nu är hennes dotter vuxen, och som alla med mbd (numera oftast kallat damp, adhd eller add) har hon problem med impulskontroll, uppmärksamhet och i samspelet med andra människor. Det påverkar alla delar av livet: utbildning, yrkesval, boende, samlevnad. Att vara vuxen och ha mbd är svårt, men som Märta Tikkanen skriver mbd kan också stå för Mycket Bra och Duktig.
Det finns ytterligt lite skrivet om vuxna med mbd, och därför har Märta Tikkanen velat skildra hur livet kan gestalta sig, såväl ur Sofias synvinkel som ur Märtas egen som närstående.
Märta Tikkanen är mest känd för sin diktsamling Århundradets kärlekssaga (1978) som hittills tryckts i 130 000 exemplar enbart i Sverige.

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

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

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

The Labour market cost of community care

Carmichael F, Charles S. (1998)

This paper reports an empirical investigation into the influence of informal care responsibilities on the labour supply of women. The objective is to examine the argument that the UK policy of caring for the chronic sick 'in the community' involves a nontrivial opportunity cost in the form of the forgone labour supply of the informal carers upon which it relies. We find that informal carers who care for less than 20 h per week are, in fact, more likely to participate in the labour market, but tend to work for fewer hours per week than otherwise similar noncarers. Informal carers who care for 20 h or more a week are less likely to participate, but only slightly. However, when they do undertake formal employment, they tend to earn less per hour and work for fewer hours per week.

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

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

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

Theorizing childhood

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

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

Vad förgår och vad består? En antologi om äldreomsorg, kvinnosyn och socialpolitik

Eliasson Lappalainen R, Szebehely M, (red). (1998)

Denna antologi innehåller en rad intressanta texter om äldreomsorg, kvinnosyn och socialpolitik. Boken diskuterar synen på åldrandet och var ansvaret ligger för omsorgen om de gamla -- något som skiftat över tid och från samhälle till samhälle. Den behandlar både frndringar på mycket lång sikt och de högst aktuella och mycket snabba förändringar i svensk och europeisk socialpolitik och omsorgspraktik som vi nu upplever. Utöver redaktörerna Rosmari Eliasson-Lappalainen och Marta Szebehely medverkar Birgitta Odén, Svein Olav Daatland, Annelie Anttonen och Clare Ungerson.

Words and gestures: infants’ interpretations of different forms of symbolic reference

Namy, L. L., & Waxman, S. R. (1998)

In 3 experiments, we examine the relation between language acquisition and other symbolic abilities in the
early stages of language acquisition. We introduce 18- and 26-month-olds to object categories (eg, fruit, vehicles)
using a novel word or a novel symbolic gesture to name the objects. We compare the influence of these
two symbolic forms on infants' object categorization. Children at both ages interpreted novel words as names
for object categories. However, infants' interpretations of gestures changed over development. At 18 months,
infants spontaneously interpreted gestures, like words, as names for object categories; at 26 months, infants
spontaneously interpreted words but not gestures as names. The older infants succeeded in interpreting novel
gestures as names only when given additional practice with the gestural medium. This clear developmental
pattern supports the prediction that an initial general ability to learn symbols (both words and gestures) develops
into a more focused tendency to use words as the predominant symbolic form.

Young Carers and their families

Becker, Saul, Aldridge, Jo & Dearden, Chris (1998)

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

Young Carers in the United Kingdom: A Profile

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

Young Carers in the United Kingdom is the largest survey to date of children with caregiving
responsibilities. The book contains information on over 2,300 young people,
all aged 18 and under, who provide care and support for ill or disabled family
members and who are also in contact with a specialist young carers project. It
combines a statistical profile of these children with case studies of 22 young people,
half of whom have been assessed by social services, half who have not.
The book draws comparisons between the position of young carers now and in 1995
when a similar survey of a smaller number of young carers was conducted (see
notes below). While the situation shows some improvements, notably in a two per
cent reduction in the numbers providing intimate personal care, and a five per cent
reduction in those experiencing educational difficulties, young carers as a whole
remain a vulnerable group of children. Specialist support projects, of which there are
now over 100 in the UK, are greatly valued by young carers and their families. These
projects help young carers to achieve their rights and to access other avenues of
support which will both reduce the incidence of children as carers and ensure that ill
and disabled family members also receive the support to which they are entitled.
In the past young carers have been largely ignored in community care legislation,
but the Carers (Recognition and Services) Act of 1995 allows them to seek an
assessment in their own right when the person they support is being assessed. The
2
Children Act 1989 also protects children in need and many local authorities now
accept that young carers fall into this category and should be supported as such. The
book discusses the incidence of assessment under both Acts and case study material
provides an insight into how children and young people experience both the process
of assessment and its outcomes.

Bereaved adolescents’ evaluations of the helpfulness of support-intended statements: associations with person centeredness and demographic, personality, and contextual factors

Servaty-Seib, H.L., & Burleson, B.R. (2007)

Currently, there is a lack of reliable methods for assessing how bereaved adolescents perceive the informal support they receive. This study provides methodological refinements in, and a theoretical grounding for, a recently developed measure designed to distinguish support efforts that bereaved adolescents find helpful versus harmful. Participants (114 bereaved adolescents) completed the Support Intended Statement Survey (SISS), which assessed the perceived helpfulness of 14 strategies intended to comfort the bereaved. These 14 strategies were coded for the degree of person centeredness they manifested. Level of strategy person centeredness was strongly correlated with perceived strategy helpfulness. Reported helpfulness of the strategies varied substantially as a function of participants' general levels of perceived support availability, but varied less as a function of demographic and contextual factors.

Bereavement support for children

Auman, M.J. (2007)

The death of a parent is one of the most significant and stressful events children can encounter. Surviving children may experience psychiatric problems and social dysfunction during their childhood and possibly throughout their adult lives. Children surviving a sibling's death may develop behavioral problems, because no one can fill the emptiness that remains in their lives, especially if their relationship was close. It is vital to recognize the trauma experienced by children who have suffered the loss of a loved one. Adults need to know when a grieving child needs help. Literature supports the need for education and counseling for grieving children. School nurses can be instrumental in meeting these needs for school-age children by performing early, comprehensive assessments, educating school administration regarding the benefits of bereavement support, initiating appropriate referrals, and providing bereavement support.

Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications

Keefe J, Légaré J, Carrière Y. (2007)

Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated (abstract from p. 4 of report).

Exit and Voice. An Investigation of Care Service Users in Austria, Belgium, Italy and Northern Ireland

Egger de Campo M. (2007)

The past decades have seen an introduction of market elements in the provision of social care services (Finer 1999; Mabbett and Bolderson 1999). Welfare state reforms all over Europe have produced welfare pluralism and claims that the increased choice will enhance user participation, promote older persons' autonomy, and improve the quality of services. Within the Fifth FP Research Project CARMA (Care for the Aged at Risk of Marginalization) a case study among users of care services in Austria, Belgium, Italy, and Northern Ireland was conducted that focussed on friction and conflict between clients and service providers and investigated the reasons for discharge and denial of admission to a service. The data from this study can be interpreted in terms of Hirschman's (Exit, voice, and loyalty: responses to decline in firms, organizations, and states. Harvard University Press, Cambridge, 1970) theory on 'exit' and 'voice' as expressions of consumers' dissatisfaction with the quality of a product. Data were collected in different systems offering a variety of procedures for exit from one provider and the choice of a competitor. Also different practices of handling voice i.e., complaints have been documented. The paper questions to what extent various possibilities for exit and voice can enhance users' autonomy and increase the quality of the service supply. It thus contributes empirical findings to a debate that often emphasizes ideological arguments.

Intentional communication acts expressed by children with severe disabilities in high-rate contexts

Bruce, S. M., & Vargas, C. (2007)

The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.

Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities

Hastings, Richard, P. (2007)

Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.

Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007

Ewertzon, M. (2007)

Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.

The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults

Goodman, D. W. (2007)

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

The earnings of informal carers: Wage differentials and opportunity costs

Heitmueller A, Inglis K. (2007)

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

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

Järbrink, Krister (2007)

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

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

Stephenson, J. (2007)

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

Beardslees preventiva familjeintervention för barn med föräldrar med psykisk sjukdom-Svenska familjers erfarenheter

Pihkala, H. (2011)

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.

Bearing witness to life narratives: Iranian immigrant experiences of taking care of a family member with dementia

Mazaheri M, Sunvisson H, Nikbakht AN, Maddah MS, Emami A. (2011)

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

Descriptions of children's needs and parenthood among mothers with intellectual disability

Starke, M. (2011)

This study looks at how mothers with an intellectual disability describe their children's needs, their own parenting and parenthood, and their encounters with professionals providing them with help and support. The analysis draws upon a relational perspective on disability, theories of modern parenthood, and the concept of the sense of coherence in examining the strategies used by the interviewed mothers in their everyday lives, such as consulting people they trust. Having a child and being entrusted with the role of parenthood were described by the interviewed mothers as creating meaningfulness in their lives, while the comprehensibility of their everyday lives was often found to be lacking and the information given them by professionals not always understandable. Better information and communication thus seem to be necessary to render these mothers' parenthood and its context more comprehensible.

Determining alertness in individuals with profound intellectual and multiple disabilities: the reliability of an observation list

V. Munde, C. Vlascamp, A. Ruijsenaars and H. Nakken (2011)

In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of interpretation and low reliability results have been described as the main problems. In the present study, our aim was to estimate the reliability of the Alertness Observation List (AOL) while, at the same time, minimizing the problems entailed in observations. We calculated both the inter-observer agreement and intra-observer agreement for 39 situations. Since the results exceeded the formulated 80%-criterion, we concluded that the AOL was a reliable instrument. However, the large range found in the results was striking. Moreover, observers with different information about the observed individuals came up with different reliability scores. To determine the value of observation of individuals with PIMD, it might well be necessary to judge the actual usefulness that the instrument has in clinical practice, besides the reliability of the results.

Does Informal Eldercare Impede Women's Employment? The Case of European Welfare States

Kotsadam, A. (2011)

European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work-care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data for 1994-2001, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. For the countries included in the study, the effects of informal caregiving seem to be more negative in Southern Europe, less negative in Nordic countries, and in between these extremes in Central Europe. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the lesser degree of coercion in the caring decision. Adapted from the source document.

Early years of support group 1: Three therapists´ views

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

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

Education and Poststroke Separation Among Couples with Mutual Children

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

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

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

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

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

A support group programme for relatives during the late palliative phase

Henriksson, A. and B. Andershed (2007)

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

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

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

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

Gender, work, and attitudes

Kotsadam, A. (2011)

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

Hannahs mamma får en fobi

Alphonse Elisabet (2011)

text och illustrationer: Elisabet Alphonse

barn/ungdom

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

Health at a glance 2011. OECD indicators

OECD (2011)

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

Hänger din mammas trygghet på dig? : att kombinera jobb med omsorg om föräldrar

Lorentzi U. (2011)

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

ICF och ICF-CY - Historik och utveckling

Björck-Åkesson E, Granlund M, Simeonsson RJ. (2011)

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

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

Identifying child functioning from an ICF-CY perspective: Everyday life situations explored in measures of participation

Adolfsson M, Malmqvist J, Pless M, Granlund M. (2011)

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

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

Socialstyrelsen (2011)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Socialstyrelsen (2011)

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

Vuxna med missbruks- och beroendeproblem

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

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

Övriga vuxna

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

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

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

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

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

Depression in the oldest old in urban and rural municipalities

Bergdahl, E., Allard, P., Lundman, B., & Gustafsson, Y. (2007)

Introduction: The aim was to compare an urban and a rural old population regarding depression. Method: A population-based, cross-sectional study in five depopulated areas and one expanding urban city in northern Sweden. Participants aged 85 and above were evaluated for depression. Data were collected from structured interviews and assessments and from relatives, caregivers and medical charts. Depression was screened for using the Geriatric Depression Scale-15 (GDS-15) and evaluated by the Montgomery-Åsberg Depression Rating Scale (MADRS). Results: In total, 29% of the 363 participants were depressed (34% in the rural municipality and 27% in the urban municipality). Fifty-one percent versus 69% were receiving treatment with antidepressants. In the rural areas, those with depression were less frequently treated with selective serotonin reuptake inhibitor (SSRI) medications (36% versus 65%; p = 0.004), instead there were participants treated with Tri Cyclic Antidepressant's (TCA's) (10%, versus 0%; p = 0.0018). A larger proportion of the participants in the urban sample had responded to treatment (59% versus 27%; p = 0.175). Conclusion: Depression in old age appears to be a common cause of emotional suffering among the oldest old. In the rural areas, depression was more often inadequately treated and it was also treated with inappropriate medications.

Discovering indices of contingency awareness in adults with multiple profound disabilities

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

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

Doktorn kunde inte riktigt laga mig

Renlund, Christina, Can, Mustafa & Sejersen, Thomas (2007)

Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Barn som också har stora frågor, hemliga tankar och starka känslor. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda?

Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor. Som läsare får man konkreta råd och tips om tekniker, lekar och övningar som hjälper barnen att formulera sina tankar och att uppnå en bättre självkänsla. Vi får också möta tre barn som går i barnterapi. De lär oss något om vad barn med funktionshinder möter i sina liv.

Eating well: children and adults with learning disabilities

Crawley H. (2007)

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

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

Elements for successful parent-professional collaboration: The fundamental things apply as time goes by

Sheehey, P. H., & Sheehey, P. E. (2007)

Abstract The Individuals with Disabilities Education Act (IDEA) mandates parent-professional
collaboration. But difficulties between parent and professional collaboration seem to persist.
These difficulties do not seem to be related to a lack of mutual respect or lack of good intentions.
Perhaps difficulties exist because of a lack of common ground. Professionals' thinking is
grounded in theory from personnel preparation and on-the-job experiences. Parents' thinking is
grounded in personal experiences and information from professionals, other parents, technology,
and media. This article describes a mother's and father's experiences over the past 25 years in a
variety of settings as the parents of a child with severe disabilities and as special education professionals.
They present their experiences in special education as parents and provide suggestions
for parents and professionals to develop an effective collaborative relationship

Ett barn är oss fött. Att bli förälder när barnet har en funktionsnedsättning – ett beskrivande och tolkande perspektiv

Lundström, Elisabeth (2007)

Ett barn är oss fött, är det vackraste uttrycket för att man kan hysa hopp och tillit till världen, enligt Hanna Arendt. Arendt beskrev hur varje människas födelse är början på någonting nytt, något som också vill framhållas med avhandlingens titel. Titeln markerar också det faktum att det barn som föds med en funktionsnedsättning på ett särskilt vis blir samhällets barn. Syftet med föreliggande studie är att beskriva upplevelsen av att bli förälder när barnet har en funktionsnedsättning. Utgångspunkten är tagen i ett relationellt perspektiv. De teoretiker som fått ge sina bidrag är, förutom Arendt, Buber, Stern och Winnicott. I analysen av berättelserna har inspiration hämtats från Ricoeur i en hermeneutisk fenomenologisk ansats. De teman som avhandlingen utgår ifrån är möten och dessa är mötet med barnet, mötet med omgivningen och mötet med professionella. 30 föräldrar, 19 mödrar och 11 fäder, har berättat om sina upplevelser av föräldraskapet. Beskedet om barnets funktionsnedsättning upplevdes kaotiskt och omvälvande av föräldrarna. Många starka och olika känslor kom i omlopp. Föräldrarna kunde uppleva sig vara utkastade från världen och att framtiden i ett slag togs ifrån dem. Framtiden blev det som oroade och den fråga som utmejslades var: Hur kan man leva sitt liv? Många professionella blev inblandade kring barnet, vilket både kunde bli till nackdel och fördel för familjen. Professionellas attityd och uttalanden om barnet hade stor påverkan och följde över tid. Samtidigt som barnet på ett sätt blev samhällets barn hade föräldrarna en känsla av att de måste föra en kamp för sitt barn i samhället, en sorts kärlekskamp som gällde att barnet skulle bli betraktad efter sina förutsättningar. En kärlekskamp hade också inledningsvis gällt för en del föräldrar i deras egen inre kamp i att kunna närma sig barnet. Därmed blev kärlekskampen dubbel. I det nya trevande föräldraskapet handlade det om att finna sin plats i världen och att finna ett sätt att vara. I samvaron med barnet konkurrerade två olika varanden under den första tiden, att vara och att göra . Med tiden kunde sorgen över beskedet separeras från barnet och det blev barnet som hjälpte till att bära sorgen över beskedet. I avhandlingen diskuteras föräldrarnas situation, med avstamp i de frågeställningar som Stern menar att föräldrar har att hantera. Även hur lek och träning förhåller sig till varandra diskuteras, liksom berättandets betydelse och professionellas ansvar. Med föräldrarnas berättelser som grund föreslås hur ett specialpedagogiskt perspektiv kan konkretiseras och hur några specialpedagogiska uppgifter därmed kan urskiljas. - See more at: http://www.skolporten.se/forskning/avhandling/ett-barn-ar-oss-fott-att-bli-foralder-nar-barnet-har-en-funktionsnedsattning-ett-beskrivande-och-tolkande-perspektiv/#sthash.VTWKd0g6.dpuf

Evaluation of a cognitive behavioral group intervention program for spouses of stroke patients

Wilz G, Barskova T. (2007)

This study investigated the effectiveness of a cognitive behavioral group program for spouses of stroke patients. The program consists of 15 bi-monthly 112h sessions. The goal of the intervention is to reduce the prevalence of mental disorders and burnout among care-giving spouses of stroke patients. The sample (stroke patients and their spouses) consisted of one intervention group (n=38 couples) and two different control conditions, those receiving informational support (n=35 couples) and those receiving standard care (n=51 couples). We used the following instruments to measure spouses' mental health and quality of life: Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI), WHO Quality of Life Questionnaire. Measurements were taken before the intervention (Time 1), directly following the intervention (Time 2) and 6 months after Time 2 (Time 3). Several regression analyses allowed for examination of the short-term and long-term effects of the intervention. The spouses' participation in the intervention program was associated with significant short-term changes in care-giving spouses' quality of life and with long-term changes in their quality of life and depression. The presented multi-component intervention appears to have an immediate effect on care-giving spouses' quality of life. In contrast, the intervention-related changes in more resistant mental-health-related variables did not appear until after a latent stage in the later post-intervention phase.

Evidence-based care of older people - utopia or reality? : healthcare personnel's perceptions of using research in their daily practice.

Boström, A-M. (2007)

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

Evidence-based care of older people - utopia or reality? : healthcare personnel's perceptions of using research in their daily practice.

Boström, A-M. (2007)

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

Experience of siblings of children treated for cancer

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

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

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

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

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

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

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

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

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

Ahlström, Gerd (2007)

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

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

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

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

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

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

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

Familjers och vårdpersonals erfarenheter av barn och vuxna med autism

Benderix, Y. (2007)

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

Paternal predictors of the mental health of children of Vietnamese refugees

Vaage, A. B., Thomsen, P. H., Rousseau, C., Wentzel-Larsen, T., Ta, T. V., & Hauff, E. (2011)

Background
Intergenerational transmission of trauma as a determinant of mental health has been studied in the offspring of Holocaust survivors and combat veterans, and in refugee families. Mainly negative effects on the children are reported, while a few studies also describe resilience and a possible positive transformation process. A longitudinal prospective cohort study of Vietnamese refugees arriving in Norway in 1982 reports a 23 years follow-up, including spouses and children born in Norway, to study the long-term effects of trauma, flight, and exile on the offspring of the refugees.

Objectives of the study:

1. To study the association between the psychological distress of Vietnamese refugee parents and their children after 23 years resettlement.

2. To analyse paternal predictors for their children's mental health.

Methods
Information from one or both parents at arrival in 1982 (T1), at follow-up in 1985 (T2), and 23 years after arrival (T3) was included. The mental health was assessed by the Global Severity Index (GSI) of the self-report Symptom Check List-90-R (SCL-90-R) for parents (n = 88) and older children (age 19-23 yrs, n = 12), while children aged 4-18 (n = 94) were assessed using the Strengths and Difficulties Questionnaire (SDQ).

Results
Thirty percent of the families had one parent with a high psychological distress score ("probable caseness" for a mental disorder), while only 4% of the children aged 10 - 23 years were considered as probable cases. In spite of this, there was an association between probable caseness in children and in fathers at T3. A significant negative paternal predictor for the children's mental health at T3 was the father's PTSD at arrival in Norway, while a positive predictor was the father's participation in a Norwegian network three years after arrival.

Conclusions
Children of refugees cannot be globally considered at risk for mental health problems. However, the preceding PTSD in their fathers may constitute a specific risk for them.

Paternal predictors of the mental health of children of Vietnamese refugees

Vaage, A. B., Thomsen, P. H., Rousseau, C., Wentzel-Larsen, T., Ta, T. V., & Hauff, E. (2011)

Background
Intergenerational transmission of trauma as a determinant of mental health has been studied in the offspring of Holocaust survivors and combat veterans, and in refugee families. Mainly negative effects on the children are reported, while a few studies also describe resilience and a possible positive transformation process. A longitudinal prospective cohort study of Vietnamese refugees arriving in Norway in 1982 reports a 23 years follow-up, including spouses and children born in Norway, to study the long-term effects of trauma, flight, and exile on the offspring of the refugees.

Objectives of the study:

1. To study the association between the psychological distress of Vietnamese refugee parents and their children after 23 years resettlement.

2. To analyse paternal predictors for their children's mental health.

Methods
Information from one or both parents at arrival in 1982 (T1), at follow-up in 1985 (T2), and 23 years after arrival (T3) was included. The mental health was assessed by the Global Severity Index (GSI) of the self-report Symptom Check List-90-R (SCL-90-R) for parents (n = 88) and older children (age 19-23 yrs, n = 12), while children aged 4-18 (n = 94) were assessed using the Strengths and Difficulties Questionnaire (SDQ).

Peer-group support for bereaved children: a qualitative interview study

Metel, M., & Barnes, J. (2011)

Keywords:
Bereavement;social isolation;support groups;well-being;peers
Background:  While it has been shown that bereaved children can experience emotional or behavioural problems, the evidence is inconclusive regarding which children would benefit from support and the kind of support to offer. This study aimed to obtain children's and parents' views on their experiences following bereavement and the usefulness of a peer-group support programme.

Method:  Thirty-nine families who had attended a community-based peer-group bereavement support programme within the previous 4 years were approached. Of the 23 with confirmed contact details, 17 agreed to participate. Qualitative interviews were conducted with 23 children (range 8 to 17 years) and 17 parents.

Results:  Children were concerned about isolation from peers and emphasized the value of meeting other children with experiences of bereavement in the group. Parents were concerned about lack of communication within the home about the bereavement, which continued after the group. Most children and parents would have liked more support, either more groups or an ongoing link.

Conclusions:  Referral to peer-group support may have the potential to improve bereaved children experiencing feelings of social isolation and help them develop coping strategies. Other family-focused support may also be needed for some children.

Person-centered care—ready for prime time

Ekman, I., Swedberg, K., Taft, C., (2011)

Abstract
Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC.

Relational Psychotherapy Mothers' Group: A randomized clinical trial for substance abusing mothers

Luthar SS, Suchman NE, Altomare M. (2007)

The purpose of this study was to ascertain the effectiveness of the Relational Psychotherapy Mothers' Group (RPMG), a supportive parenting group intervention for substance abusing women. Sixty mothers receiving RPMG were compared to 67 women receiving recovery training (RT); both treatments supplemented treatment in the methadone clinics. At the end of the 6-month treatment period, RPMG mothers showed marginally significant improvement on child maltreatment (self-reported) and cocaine abuse based on urinalyses when compared with RT mothers; notably, children of RPMG mothers reported significantly greater improvement in emotional adjustment and depression than children of RT mothers. At 6 months follow-up, however, treatment gains were no longer apparent. Overall, the findings suggest that whereas supportive parenting interventions for substance abusing women do have some preventive potential, abrupt cessation of the therapeutic program could have deleterious consequences.

Thousands of American children are at risk for negative outcomes because of maternal substance abuse. Estimates are that as many as four million American women regularly use illicit drugs (SAMHSA, Office of Applied Studies, National Survey on Drug Use and Health, 2002/2003); about 80% of these women are likely to be mothers of at least one child (National Center on Addiction and Substance Abuse, 1996). Drug abusing mothers show elevated levels of psychiatric disturbance—particularly depression and anxiety—as well as significant problems with child rearing (Beckwith, Rozga, & Sigman, 2002; Luthar, Cushing, Merikangas, & Rounsaville, 1998; Najavits, Weiss, & Shaw, 1997; Singer et al., 1997). It is not surprising that their children also display several difficulties, with as many as 65% manifesting a psychiatric disorder by the teen years (Luthar et al., 1998).

Although their multiple vulnerabilities indicate that addicted mothers need multifaceted therapeutic interventions, drug treatment programs traditionally have entailed scant attention to their personal and parenting needs (Luthar & Suchman, 2000a). These programs were originally developed for men and then used with women as well, with little consideration of the unique challenges and needs of the latter, particular in terms of their roles as mothers (cf. Hogan, 1998; Millar & Stermac, 2000; Westermeyer & Boedicker, 2000). In the last 2 decades, however, there have been several efforts to develop and test such multi-pronged programs (Camp & Finkelstein, 1997; Catalano, Gainey, Fleming, Haggerty, & Johnson, 1999). In this paper, we focus on one such intervention, which showed promise in early pilot testing (Luthar & Suchman, 2000a), the Relational Psychotherapy Mothers' Group (RPMG), with the goal of assessing effectiveness relative to alternative forms of treatment.

Developed for heroin-addicted mothers with children up to 16 years of age, RPMG is a supportive psychotherapy aimed at facilitating optimal parenting among at-risk mothers, and it is offered over 24 weekly group sessions that supplement standard methadone treatment. Conceptually, the treatment was developed within the scaffolding of the literature on risk and resilience, with (a) consideration of processes operating at multiple levels, related to the individual, family, and community, and (b) a focus on both positive and negative forces among at-risk groups (Luthar & Cicchetti, 2000).

At the individual level, the RPMG intervention is grounded in the view that attention to addicted mothers' personal distress levels is critical to improve their parenting behaviors. At the same time, the treatment entails deliberate attempts to harness mothers' tendencies toward guilt (regret at their past "errors") as catalysts for change toward optimal parenting. Thus, the first half of the 24 sessions in this treatment are directly focused on the women's own functioning, addressing topics such as coping with anger, depression, and the constructive use of guilt.

Vulnerability factors at the familial level span multiple forms of dysfunctional parenting that many of these women experienced as children, ranging from inadequate nurturance to physical or sexual abuse (El-Bassel, Gilbert, Schilling, & Wada, 2000; Harmer, Sanderson, & Mertin, 1999; Hogan, 1998; Najavits et al., 1997). Obviously, these experiences pose risks for their own parenting. Salient among the protective forces conversely, is concern about the well-being of their children along with both the desire and potential to benefit from supportive parenting interventions (Hogan, 1998; Luthar & Suchman, 2000a). Accordingly, the second 12 of the 24 RPMG sessions are focused on specific parenting issues, such as alternatives to physical punishment, age-appropriate limits in discipline, and warmth in parenting.

At the level of the community, a pronounced risk is exposure to stigma (El-Bassel et al., 2000; Eliason & Skinstad, 1995; Hogan, 1998; Luthar et al., 1998; Najavits et al., 1995); in clinical settings, the fallout of such stigmas is wariness of strictly didactic treatment approaches that seem to emphasize addicted women's deficits as parents (Levy & Rutter, 1992). The effort in RPMG, therefore, is to discuss child-rearing issues in the context of nonjudgmental, supportive experiences using insight-oriented therapy. A second community-level risk is dysfunctional social networks: isolation is a serious problem, and close relationships that do exist reflect various difficulties such as domestic violence (Amaro & Hardy-Fanta, 1995; Brunswick & Titus, 1998; El-Bassel et al., 2000; Harmer et al., 1999; Hogan, 1998; Wald, Harvey, & Hibbard, 1995). Accordingly, RPMG was developed as a supportive treatment, with the use of a group format designed to help women develop their interpersonal skills, to perceive the universality of dilemmas pertaining to roles as women and mothers (e.g., Yalom, 1985), and to benefit from mutually supportive interpersonal networks.

In terms of therapeutic characteristics, four features define RPMG as an intervention. The first is a supportive therapists'stance. Encompassing the Rogerian constructs of acceptance, empathy, and genuineness, this is essential to foster a strong therapeutic alliance and to meet mothers' unmet developmental needs (e.g., trust vs. mistrust in relationships). The second is an interpersonal, relational focus (see Klerman, Weissman, Rounsaville, & Chevron, 1984), a component addressing the interpersonal isolation and stress figuring prominently in addicted women's lives. The third feature is discovery-based, insight-oriented parenting skill facilitation. Rather than "instructing" mothers about appropriate parenting, role plays and brainstorming exercises are used to encourage them to explore their own parenting strategies and to guide them toward optimal approaches (for further description of the RPMG intervention, see Luthar & Suchman, 1999, 2000a).

With regard to features as a group treatment, RPMG is restricted to mothers and to female therapists to optimize women's comfort in discussing sensitive issues such as their own victimization. To accommodate the frequently chaotic schedules of patients in methadone treatment, group membership is open or rotating. Although closed-group membership can promote group cohesion and trust, open enrollment provides the opportunity to engage women in treatment when each of them is highly motivated to join. Sessions are led by a graduate level clinician with expertise in working with families as well as addiction-related issues.1 All sessions are semistructured, and a therapists' manual (Luthar, Suchman, & Boltas, 1997) provides a detailed outline for addressing each session topic.

With regard to children's age span, the group intervention was intentionally designed to accommodate mothers of children birth to 16 years for the following reasons. First, a broad age span allowed mothers a natural context within which to share experience and provide guidance to one another, to ask each other questions about upcoming developmental stages, and to share advice with newer mothers about earlier phases of development. Second, our aim was to provide parental guidance that could apply broadly to parenting across different phases of development rather than focusing more specifically on any one stage of child development. For example, although limit setting strategies vary with children's age, limit setting can be more generally understood and applied as a means to maintaining a calm family environment in which the parent maintains control and order. Our aim was to discuss themes such as this one that were more or less universal to all stages of parenting so that mothers could adopt new views about the parent-child relationship and apply them broadly with all children in their families. In contrast to behavioral parent training programs that aim to teach parents to manage children's misbehavior (see, e.g., Catalano et al., 1999; Kumpfer, 1998), this approach aimed to promote mothers' understanding of their children's needs more broadly, including the need for support, nurturance, structure, limits, emotional regulation and security.

Go to:
The Pilot Study
The RPMG treatment was originally designed, manualized, and tested as part of a 3-year psychotherapy development project (Luthar & Suchman, 2000a). Opioid abusing women who received this intervention along with standard treatment in methadone programs were compared with those receiving standard treatment alone. Standard treatment entailed participation in weekly, 1-hr counseling groups and periodic meetings with case managers to secure basic needs (e.g., housing or welfare benefits). The counseling groups were led by certified drug clinicians and focused on information on the unfolding of addictions and pitfalls of addictive behaviors.

Effects of the RPMG intervention were evaluated in terms of the women's functioning as parents, their psychological functioning, and adjustment of their children. The single most critical domain was the mother's risk for maltreating behaviors, a serious problem among addicted parents (Ammerman, Kolko, Kirisci, Blackson, & Dawes, 1999; Dore & Doris, 1998; Dunn et al., 2002; Rogosch, Cicchetti, Shields, & Toth, 1995); this was assessed via the women's own reports and also by children's reports for children over 7 years of age. Also assessed were women's positive parenting behaviors in terms of the affective quality of the relationship: involvement and communication with their children. The women's psychosocial adjustment was assessed in terms of satisfaction in their roles as mothers as well as depressive symptoms, and their children's psychosocial functioning (e.g., internalizing, externalizing, and clinical, school, and personal maladjustment) were evaluated by both mothers' and children's reports. Finally, data on the women's drug use were also examined, as improvements in addicted women's psychosocial functioning can carry over to their substance use as well (e.g., Najavits, Weiss, Shaw, & Muenz, 1998).

In addition to testing effectiveness, also examined in the pilot study was whether RPMG did, in fact, provide therapeutic components distinct from those in standard drug counseling. A Therapist Adherence Rating Scale was developed, with items based on the defining features of each of the two interventions (RPMG and standard drug counseling).

Results showed that at the end of the 24-week treatment, mothers receiving RPMG demonstrated lower risk for child maltreatment (by mothers' and children's reports), greater involvement with children, and more positive psychosocial adjustment, than women who received methadone counseling alone. Small to moderate effect sizes for group differences were also found for mothers' and children's reports of child maladjustment. Notably, urinalyses indicated that RPMG mothers showed greater improvements in opioid use over time than comparison mothers. At 6 months posttreatment, RPMG recipients continued to be at an advantage, although the magnitude of group differences was lower. Finally, the Therapist Adherence Scale had good psychometric properties and did discriminate between the treatments.

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

Hilliard, R.E. (2007)

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

When resources get sparse: A longitudinal, qualitative study of emotions, disabilities coping and resource-creation when parenting a young child with severe

Graungaard, A. H., Andersen, J. S., & Skov, L. (2011)

Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.

Who are the resilient children in conditions of military violence? Family- and child-related factors in a Palestinian community sample

Punamäki, R.-L., Qouta, S., Miller, T., & El-Sarraj, E. (2011)

The prevalence of resilience in the presence of military violence and the role of child and family characteristics fostering that resilience were analyzed in a Palestinian community sample using a person-based approach. The participants consisted of a random sample of 640 Palestinian children and adolescents, their parents, and their teachers, all living on the Gaza Strip. A medical examination of the children and adolescents was conducted to assess health status on somatic, sensory, and cognitive domains. The results revealed an equal share of resilient (21%; high level of trauma and low level of disorders) and traumatized (23%; high level of trauma and high level of disorders) children. As hypothesized, characteristics of the resilient group were good parental mental health, supportive parenting practices, good school performance, superior cognitive functioning, good physical health, high body weight, and normal birth weight. Variable-based analyses revealed no support for the hypothesis that these family- and child-related factors protect child mental health, although their direct association was confirmed. The discussion focuses on mechanisms fostering child resilience in war zones.

World trade center tragedy: Concomitant healing in traumatic grief through art therapy with children

DiSunno, R., Linton, K. & Bowes, E. (2011)

Two graduate students and a professor/clinical supervisor from the art therapy department at New York University discuss their experiences in the wake of September 11, 2001. The authors describe their personal experiences in working soon after the World Trade Center attacks along with their roles as art therapists at a grief camp for traumatically bereaved children. Clinical work with child victims of the attacks is discussed as well as grief experiences of other children. The article addresses how the language of imagery offers an alternative to words in the expression of pain and loss and a glimpse at the resilience of children when allowed a safe haven for grief work, the emergence of universal symbols after a national tragedy, and the unexpected concomitant healing of the trauma experienced by both therapists and children through symbolic imagery.

Young people living with parental bereavement: insights from an ethnographic study of a UK childhood bereavement service

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

The purpose of this two-year ethnographic study was to explore the experiences of parentally bereaved young people who sought support from the Rocky Centre (a pseudonym), a childhood bereavement service in the United Kingdom. Data were generated from extended periods of participant observation and semi-structured interviews with both staff and service users. In this article we focus specifically on the interviews with 13 young people to elucidate the factors that helped them to live with parental bereavement. Of these participants, four had been recently bereaved and nine had experienced the death of a parent over ten years ago. Seven key themes emerged from the analysis of the interview data: expressing emotion, physical activity, positive adult relationship(s), area of competence, friendships/social support, having fun/humour and transcendence. These themes are discussed in turn, and implications for research and practice are addressed.

The Behavior Management Flow Chart: a component analysis of behavior management strategies

Danforth, J. S. (1998)

Representative published child behavior management research was reviewed. Based upon the review, a task analysis of child behavior management strategies was conducted. The Behavior Management Flow Chart is a flow chart of the task analysis that synthesizes the research into a cohesive unit and visually depicts actions that adults may be trained to use to manage misbehavior displayed by disruptive children. A discussion compares and contrasts the Behavior Management Flow Chart with Hanf-model behavior management programs, the appropriate unit of analysis is examined, and concerns regarding integrating a wide range of research variables into a unitary model are addressed.

Young carers and their Families

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Carlhed, Carina (1998)

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

Children of affectively ill parents: a review of the past 10 years

Beardslee W, Versage E, Gladstone T. (1998)

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

Children’s adjustment to parental death

Tremblay, G.C. & Israel, A.C. (1998)

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

Comparison of language task acquisition in adolescents with profound intellectual disabilities

Oda H, Fujita T, Inoue M. (1998)

Using an alternating treatment design, the acquisition, generalization, and maintenance of 8 tasks consisting of 2 communication functions (mand vs tact), 2 communication modes (receptive vs expressive), and 2 communicative symbols (gesture vs picture) were compared in 4 adolescents with profound intellectual disabilities and no receptive or expressive language. All Ss acquired 6 of the 8 tasks; the tasks not acquired were those in the receptive mode of manding, using either gestures or pictures. For all Ss, within the 6 tasks acquired, the tact function in the receptive mode using pictures was the most rapidly obtained and the most easily generalized and maintained, while the tact function in the expressive mode using gestures was the most slowly acquired and the most difficult to generalize and maintain. The communication function of manding was more easily acquired, generalized, and maintained than was tacting in the expressive mode for both types of symbols for all Ss. For the tact function, both types of symbols were acquired, generalized, and maintained better in the receptive mode than the expressive mode for all subjects. Also, for all Ss, pictures were more easily acquired, generalized and maintained than gestures. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

En orolig själ

Jamison Redfield, Kay (1998)

En orolig själ : en berättelse om att vara manodepressiv
Kay Jamison, professor i psykiatri och en internationell auktoritet på manodepressiv sjukdom, ger här ett märkligt och högst personligt vittnesbörd: En skildring av hur hon själv sedan unga år brottats med manodepressivitet och hur den kampen format hennes liv. Det mörka ämnet till trots, genomsyras boken av en stor portion humor.
Författaren tar oss med in i den lika fascinerande som skrämmande värld som den här typen av vansinne utgör – en värld där den ena polen är det lockande tillstånd där tankar och känslor inte vet några gränser, och den andra en öken av livlös förstening där döden ofta framstår som den enda utvägen.
Kay Jamison drabbades av sin sjukdom när hon var sjutton år, och den följde henne genom skolår och universitetsstudier, genom passionerad kärlek och gränslös sorg, genom maniska skov och ett självmordsförsök som sånär kostat henne livet. Hon beskriver också det plågsamma dilemma som sjukdomen ställde henne inför: att ta litium, en medicinering som innebar att hon gick miste om topparnas hänförelse. Hon hade dessutom lärt sig att en bra flicka reder sig själv, dvs utan medicin. Men – med hjälp av kunskap, livsvilja, adekvat medicinering och, mer än något annat, kraften från ett kärleksfullt förhållande finner hon vägen till ett meningsfullt liv.

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