Bibliotek

I den här rapporten redovisar Junis vilken stödverksamhet som landets kommuner
erbjuder barn som växer upp med missbruk eller beroende.
Vi ger också exempel på människor, forskning och verksamhet som gör skillnad för de här
barnen.

Bland professionella som är verksamma i hälso- och sjukvård och socialtjänsten finns i dag ett stort intresse för att följa upp och utvärdera den egna praktiken. Man vill veta om insatserna ger det förväntade resultatet, om klientens problem minskar eller om klientens välbefinnande ökar. Men hur går man till väga för att få relevant och tillförlitlig kunskap om klienternas förbättring och insatsens betydelse?

I denna bok presenteras MOS – målinriktad och systematisk utvärdering av insatser för enskilda personer. MOS är ett sätt att följa upp och utvärdera den egna praktiken och ett verktyg som hjälper professionella och klienter att hålla fokus på det förbättringsmål som klienten vill uppnå i varje led av processen. MOS bygger på Single system designs (SSD) en utvärderingsmetod som länge använts i USA, där den utvecklades redan under 1970-talet. I engelskspråkig litteratur används även andra namn, t.ex. Single subject designs [10] eller Single case experimental designs [1]

I Sverige har detta sätt att utvärdera prövats och använts inom bl.a. rehabilitering och habilitering [5]. Inom socialtjänsten har den endast använts i mindre omfattning. På svenska finns endast några kortare beskrivningar [5,6,11]. En handledning som visar hur metoden ska användas saknas. Därför har denna bok skrivits.

Documented evidence indicates that medication non-compliance for the older person is a common and poorly understood problem. This paper reports on a pilot study, which used a focus group interview to explore carers' attitudes, experiences and perceptions regarding medication compliance for their older depressed relative. It aimed to understand the problems and challenges encountered by carers in respect of their relative being non-compliant, and provide material to develop a comprehensive educational and support package to promote antidepressant compliance. A convenience sample of seven carers participated in the focus group and a qualitative analysis of the interview identified a number of key issues. Carers had little knowledge of depression, they were not well informed regarding antidepressant medication and they took an active role to ensure compliance. The focus group highlighted the need for health care professionals to promote and encourage carers to be part of the older individuals treatment programme and provide concise and unambiguous educational information in relation to antidepressants and the importance of compliance.

Att leva med stora funktionsnedsättningar innebär att vara beroende av god medicinsk omvårdnad. Den här handboken ger kunskap om varför funktionshindren uppstår, hur det påverkar kroppen och hur den praktiska omvårdnaden i vardagen kan utföras på bästa sätt

Det här är en handbok som beskriver den medicinska omvårdnaden om personer med svåra flerfunktionshinder. Den tar upp symtom på olika problem, vilka behandlingsalternativ som finns och hur den praktiska omvårdnaden går till.

Boken riktar sig till alla som möter personer med flerfunktionshinder - anhöriga, assistenter, vårdpersonal - men också till habiliteringens personal. Den förmedlar fakta och kunskap på ett sätt som både går på djupet och är lättillgängligt.

Boken är tydligt uppdelad på olika kapitel som sömn, smärta och epilepsi, och kan därför även användas som uppslagsbok. Längst bak finns en omfattande lista med referenser och tips på vidare läsning.

Författare är Ann-Kristin Ölund, habiliteringsläkare och barnneruolog. Hon har över 20 års erfarenhet av praktiskt arbete med barn med flerfunktionshinder vid habiliteringarna i Uppsala och i Norrbotten. Boken är skriven med värme och en önskan om att personer med flerfunktionshinder ska kunna utvecklas efter sina unika förutsättningar.

Röster från läsare
"Denna bok fungerar utmärkt som uppslagsbok då den är indelad i tydliga kapitel utifrån möjliga problemområden, t.ex. spasticitet, smärta och epilepsi. Den är skriven på ett enkelt och lättförståeligt sätt med flera förklarande bilder samt tips- och faktarutor. Detta gör att den lämpar sig väl för närstående så väl som vårdpersonal. Ann-Kristin Ölunds mångåriga erfarenhet som läkare med praktiskt arbete med habilitering av personer med flerfunktionshinder gör att bokens innehåll känns kärnfullt och relevant."

Anhöriga och anhörigstöd i Stockholms län. Sammanfattning av ett forskningsprojekt, E. Jeppsson Grassman.

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.

Abstract [en]

We estimate how much caregiving men and women respectively do, and how much of the caregiving is done by older (65+) and younger persons, inside their household and for other households, in Spain and in Sweden. To assess this, we use self-reported hours of caregiving from two national surveys about caregiving, performed in 2014 (Spain, N = 2003; Sweden, N = 1193). Spain and Sweden have dissimilar household structures, and different social services for older (65+) persons. Caregivers, on average, provide many more hours of care in Spain than in Sweden. Women provide about 58% of all hours of caregiving, in Spain in all age groups, in Sweden only among younger caregivers. The reason is the dominance of partner caregivers among older Swedes, with older men and women providing equal hours of care. Family caregiving inside the household is more extensive in the more complex Spanish households than in Swedish households. Family care between households prevails in Sweden, where the large majority of older persons live with a partner only, or alone. This is increasingly common in Spain, although it remains at a lower level. We estimate that older persons provide between 22% and 33% of all hours of caregiving in Spain, and between 41% and 49% in Sweden. Patterns of caregiving appear to be determined mainly by demography and household structure.

In caregiving literature, it is often the female gender that has been the focus of attention,
and in particular women's unpaid labor. Studies also tend to make comparisons
between men's and women's caregiving, using men's caregiving experiences to show
not only that women face greater burdens, but also that men's needs can be disregarded.
This means that while gender analyses are not uncommon in the caregiving literature,
gender tends to be equated with womanhood. The research problem that this dissertation
addresses is therefore the gender bias that characterizes caregiving scholarship
at present and the fact that this bias is impeding us from moving the debates on
care and caregiving forward. The aim of the dissertation is twofold. Firstly, it attempts
to contribute to the rectification of the gender bias in question by focusing on men's
caregiving and answering the following research questions: What motivates men to
provide care for their elderly parents? How do adult sons experience caregiving? What
do adult sons think that care and caregiving are, i.e. what are their perspectives on
care? Secondly, this dissertation also aims to explore whether a gender-aware and
masculinity-informed perspective can be used to enhance our understanding of caregiving.
Thus, through a phenomenological analysis of interviews with 19 caregiving
adult sons and sons-in-law, this dissertation discusses how motives, experiences and
perspectives, which have so far been interpreted as unique to women, are also matters
that men talk about and consider important in caregiving. The dissertation argues
therefore that much could be gained if we were to rectify the gender bias that characterizes
the literature on family caregiving and explore caregiving men in the genderaware
and masculinity-informed way that is lacking in this literature at present. Inspired
by the debate within studies of masculinity, the dissertation argues that within
the debate on care there is a hegemony of care which has so far tended to exclude
men's perspectives on caregiving because literature on family caregiving has regarded
women as the ideal caregivers. This dissertation shows that a gender-aware and masculinity-informed
perspective on care can increase our understanding of family caregiving
and contribute to the rectification of the gender bias that care research suffers
from. Against this backdrop, it is proposed that caregiving men should not solely be
regarded as empirically interesting. This is because they are an unexploited and theoretically
profuse source of information about caregiving.
Keywords: care, family caregiving, gender, men, masculinity, motive, experience, perspective

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.

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.

Den här boken handlar om en familj med ett svårt hjärnskadat barn och två friska småsyskon. Boken beskriver deras nioåriga resa. Vi får följa och lära oss om en liten men viktig grupp barn, känna ilska och sorg men också mycket hopp, glädje och stolthet. Vi följer familjens vardag i motgång och medgång. Kampen för en så bra vård som möjligt och ett innehållsrikt liv för den svårt hjärnskadade dottern. Vi får ta del av syskonens och föräldrarnas känslor och får en inblick i hur det är att leva med assistenter i hemmet under dygnets alla timmar. Boken berör många områden och det märks att författaren har fått möta mycket under åren.
Läs och upplev hur någonting som från början ser mycket mörkt ut blir allt ljusare. En stark och engagerande bok med fokus på möjligheter.

Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:

The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation

The birth of a baby with an impairment goes against dominant cultural ideals about a happy event. Therefore, the interaction between professionals and parents is particularly important, from the hospital maternity ward to the home. In this article, the author examines both the representations of neonatal impairments constructed by professionals and the consequent subject positions for these babies with impairments. The study is based on interview data collected among 19 staff members of one Finnish county hospital. The author analyzed the data by means of qualitative discourse analysis and concludes that it would be important for health care professionals to provide many-sided elements for parents to consider in the construction of the image of their baby other than traditional tragically and negatively biased cultural interpretations.

The next of kin play a decisive role in the care provided for patients. This and their unique experience of psychiatric care make it important to include them when defining quality of care. The aim of the present study was to describe how next of kin perceive the concept of quality of care in the case of psychiatric care. Twelve next of kin were included in a qualitative interview study and a phenomenographic approach was used for the analysis of the interviews. The next of kin described quality of care mainly from their own perspective but also to a large extent from the patient's perspective as well. Five descriptive categories resulted: dignity, security, participation, recovery, and health-promoting surroundings. Good relations and communication between staff, patients, and next of kin emerged as the central factors regarding the quality of psychiatric care. The next of kin asked for information about psychiatric illnesses and wanted to cooperate in the care. They avoid telling others about their family member's psychiatric illness because of a feeling of shame and guilt. Staff education regarding such feelings and stigmatization could be useful in furthering the understanding of the next of kin's distress and developing interventions to alleviate it. Clinical practice can be improved by guidelines and instruments developed on the basis of this study.

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

This critique of the term 'carer' argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is 'carers' and those who are cared for. The paper considers the historical and political development of the term 'carer' before examining research in various 'carer'-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term 'carer' is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term 'carer' as a recognisable and valid description of the relationship between 'carers' and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at 'carers', therefore inadvertently meeting the original aims of the term, that is, to increase support for 'carers'. Adapted from the source document.

OBJECTIVE:
Feasibility, acceptability, and efficacy of a Dialectical Behavioral Therapy (DBT) -based method developed in Germany were evaluated in a Swedish outpatient psychiatric context.

METHOD:
Fifty-one adults with ADHD on stable medical treatment or on no medication were randomized to the DBT-based skills training (n=26) or a parallel loosely structured discussion group (n=25). Self-rating scales were administered before randomization and after the treatment.

RESULTS:
Feasibility and participant satisfaction were good in both groups while skills training was perceived as more logical and effective for ADHD-related problems. The analyses of the individuals who completed the treatment and remained stable with regard to medication (n=19 in skills training; n=18 in control group) showed a significant reduction in ADHD symptoms in the skills training group, but not in the control group. No reduction of comorbidity was observed in any of the groups.

CONCLUSIONS:
The treatment was feasible in an outpatient psychiatric context, well tolerated, and significantly reduced ADHD symptoms in on-treatment individuals who remained stable regarding medication status.

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.

This study was an experimental evaluation of an intervention designed to reduce conduct problems among children of battered women. Participants were 36 families (mothers and children) in which the mother had sought shelter because of relationship violence and had at least 1 child (4-9 years old) with clinical levels of conduct problems. The intervention consisted of 2 primary components: (a) providing instrumental and emotional support and (b) teaching child management skills to mothers. Families were randomly assigned to either the intervention condition or the existing services comparison condition and were assessed on 5 occasions over 16 months after shelter departure. Compared with families receiving existing services, children in the intervention condition improved at a faster rate, the proportion of children displaying clinical levels of conduct problems was greatly diminished, and mothers displayed greater improvements in child management skills.

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)

Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.

Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.

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

"Jag skulle önska att vi helt slutar att tala om terapi och forskning som människoteknik, och hellre talar om det som människokonst, konsten att delta i band med varandra." Så skriver Tom Andersen i avslutningen av det nya kapitel som tillfogats i denna upplaga av Reflekterande processer. Vidare utveckling av den ursprungliga bokens tankar redovisas också, till exempel om uttrycksformer som tar tillvara kroppens perspektiv och erfarenheter från arbetsrelationer i praktik och forskning "där man lagt vikt på att relationerna ska vara till nytta för alla som tar del i dem."

Bokens ursprungliga budskap om reflektion och mångfald av perspektiv i familjeterapeutiskt arbete är fortfarande är lika angelägna, och har visat sin bärkraft och utvecklingsförmåga i långt vidare sammanhang. Eller som författaren uttrycker i förordet till den här upplagan. "Det har på sätt och vis stämt till eftertanke att boken har blivit läst och dess idéer blivit använda i så många sammanhang i så många länder. Särskilt att den har slagit an så starkt i länder som varit under totalitära regimer."

Reflekterande processer ges numera ut av Studentlitteratur AB. Denna andra upplaga innehåller dock inga förändringar av innehållet jämfört med den första upplagan.

Vem blir man, när man får veta att ens barn är nära att dö i en livshotande hjärtsjukdom? Vad kan man ta in och vad flyter förbi? Hur går tankarna för den som tvingas bo länge på ett sjukhus? Vad innebär det att leva och hur nära kan Döden stå utan att ta den man älskar?
"Nästan alla dagar grät jag" är berättelsen om en familj där sonen blir akut inlagd på sjukhus för hjärtsvikt. Dag för dag följer vi familjen på sjukhuset, totalt 313 dagar. Berättelsen bygger på en verklig händelse.

Objective

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

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

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

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

Abstract [en]

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

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

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

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

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

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

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

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.

AIM:
To review the literature on the impact of parental problem drug use on children, and indicate the efficacy of key evaluated interventions to reduce the impact of parental drug use on children.
METHODS:
Comprehensive narrative review of English language published research and intervention spanning the last three decades identified through searching library databases and citation.
FINDINGS:
Problem drug use can impede parenting and the provision of a nurturing environment. Although small-scale, localized and resource-intensive these key evaluated interventions show cautious optimism that problem drug-using parents can reduce drug use and achieve better family management. Children have rarely been directly the focus of intervention.
CONCLUSIONS:
Wider application and more rigorous evaluation of interventions in this area are needed. Given the scale of the problem it is important to establish how statutory services can apply the lessons of these more localized interventions.

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.

By definition children with autism spectrum disorders (ASD) experience difficulty understanding and using language. Accordingly, visual and picture-based strategies such as the Picture Exchange Communication System (PECS) show promise in ameliorating speech and language deficits. This study reports the results of a multiple baseline across participants investigating the implementation of the PECS with three preschool children with characteristics of ASD. The first four phases of PECS were taught to the participants: basic picture exchange, increasing distance use of PECS, discriminating among a variety of pictures, and communicating in sentences composed of pictures. Relative to the impact of PECS's implementation in providing the participants with a functional communication system, word approximations, and intelligible word and phrase use, results indicated that two of the three participants mastered PECS. However, participants did not significantly increase in use of word approximations and intelligible words.

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

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

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

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

BACKGROUND:
Previous findings suggest that the loss of a family member is associated with health and mortality. The purpose of this study was to investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
OBJECTIVE:
To investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
METHODS:
We used cross-sectional data with retrospective questions from the Swedish Level of Living Survey (LNU) of 2000, including 5,142 individuals. The bereavement experiences examined in the study include the loss of a sibling, a parent or a spouse, and time since the death of a parent. BMI (kg/m2) was calculated using self-reported measurements of weight and height. The association between bereavement and BMI was evaluated through linear regressions.
RESULTS:
After controlling for possible confounders, most of the models detected an association between bereavement and BMI. The fully-adjusted model showed that loss of parents was associated with a 0.45 increase in BMI (SE = 0.20). The effect also seemed to be dependent on time since the loss and social class position.
CONCLUSIONS:
The present study is the first to examine associations between different types of familial losses and BMI. We find an association between the death of a family member and BMI, but it appears to be related to time since the death, type of bereavement experience and social class.

BACKGROUND: The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care. OBJECTIVE: To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context. METHODS: Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as "high" or "low" adopters. RESULTS: Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT "informal interactions" denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved. LINKING EVIDENCE TO ACTION: Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention.

The aims of this thesis where the target population has been older adults suffering from osteoporosis related fractures were firstly to study the association between functional impairment due to pain, and activity expressed as walking speed (WS) and Timed Get up and-Go (TUG), and to examine the associations between functional impairment and social participation (SP) and quality of life (QoL). Secondly, to study the association between activity and SP and QoL. Thirdly, to study the effect of informal and/or formal support on SP.
In study I activity 3 years after trauma and stratified for pain was examined. For fractured, both with and without pain, higher WS was noted for subjects with the last fracture more than 3 years ago compared to subjects fractured less than 3 years ago. The median time for fractured in pain and a trauma more than 3 years ago walking 15m at a self selected speed was 14 s compared to 20 s (p = 0.04) for subjects in pain and fractured less than 3 years ago. Both fracture and pain independently explained levels of WS.
In study II the association between functional impairment and SP and QoL was investigated. QoL included Life satisfaction index A (LSI- A) and SF-12 consisting of a mental component (MCS) and a physical component (PCS). Fractured with and without pain were compared to non-fractured controls and in 12 out of 21 activities fewer fractured in pain took part compared to controls. Regarding QoL, fractured in pain scored lower for MCS, PCS and LSI-A, compared to controls.
In study III the association between WS, TUG and QoL and SP was examined. In a logistic regression model adjusting for confounders, significant associations remained between SP and WS, TUG where an increased probability of taking part increased with a faster performance.
In study IV the extent of SP due to formal and/or informal care was examined. Adjusted odds ratios for SP using non support as a reference, showed that subjects with informal support did not have a lower probability for participating while subjects with informal and/or formal support had a significant lower probability for SP.
In conclusion, fractured had a limitation in activity. For both fractured with and without pain a limitation in WS was observed up to three years after trauma suggesting that there is rehabilitation potential the first years after fracture. A health condition with fracture and a functional impairment due to pain, or a deterioration WS or TUG are associated with a restriction in SP and a lowered QoL. The results also substantiate the influence of informal support i.e. care given by relatives and friends have decisive influence to maintain SP and thereby an active lifestyle.

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

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

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

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

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

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

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

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

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

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

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.

Inspirationsmaterial som vänder sig till dig som vill få inspiration kring frågor om individualisering av anhörigstödet. Det bygger dels på kunskapsöversikten med samma namn, samt de frågor och diskussioner från det lärande nätverket inom "Individualisering, utveckling och utvärdering" perioden 2008 och 2009.

Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.

Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av 11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.

Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-
10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.

Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av
11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.

Ett av Nationellt kompetenscentrum Anhörigas (Nka) prioriterade områden har varit Individualisering, utvärdering och utveckling av anhörigstöd. Syftet med denna kunskapsöversikt är att utifrån litteraturgenomgångar beskriva hur anhörigstöd för anhöriga som ger omsorg till äldre personer, har utvecklats och vad forskning och utvärderingar av anhörigstöd har givit för resultat med fokus speciellt på anhörigstödets anpassning till anhörigas olika förutsättningar. Översikten är en uppdaterad version av en rapport med samma namn som kom ut år 2010.
Frågeställningar som studerats är:
 Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
 Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
 Hur ser anhörigas behov av stöd ut?
 Vad har utvärderingar av olika former av anhörigstöd givit för resultat när
det gäller anpassning till individuella behov och situationer. Kunskapsöversikten bygger på publicerade forskningsresultat, FoU-rapporter, utredningar och offentliga skrifter från tidsperioden år 2000 till mitten december år 2015. Endast svenska förhållanden studeras.Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig 300 och framåt. Statens satsningar har varit stora och anhörigstödet har utvecklats starkt, men mycket återstår att göra inom området. Kunskap som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet och om anhörigstödet motsvarar anhörigas behov. För att problematisera vad det är för olika slags behov och situationer som anhörigstödet skall möta görs en genomgång av den kunskap som finns om anhörigskapets olika förutsättningar. Teman som behandlas är olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform, sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vård- och omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns betydelse, socialt stöd och coping. Resultatet av denna genomgång visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer och att detta ställer krav på anhörigstödet om det skall skräddarsys eller individualiseras. Hur det är att vara anhörig som ger omsorg, speciellt till personer med demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhörigas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma samtidigt och kanske till och med förutsätter varandra. Återkommande inom forskning beskrivs känslomässiga och existentiella upplevelser som svåra, tillsammans med bundenhet och fysisk trötthet. Studier visar även att anhöriga kan skatta sina liv i positiva termer och att det är tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna stödbehov, men insatser som efterfrågas är avlösning (flexibelt och lättillgängligt), information och kunskap, någon att tala med (att bli bekräftad, uppskattad och sedd) samt ekonomisk ersättning. Att vara anhörig i samband med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets slutskede kan innebära speciella krav och förväntningar. En presentation ges därför av kunskap om att vara anhörig i dessa specifika situationer. Genomgången avslutas med en redovisning av de utvärderingar som har gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård och växelvård, dagverksamhet, kombination av dag- och nattavlösning och avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av personal, anhörigcentraler och träffpunkter, "må bra-aktiviteter", enskilda samtal samt övrigt stöd. De erfarenheter som har dragits av att använda instrumentet COAT för planering, uppföljning och utvärdering av stöd till anhöriga
redovisas samt resultaten från svenska kontrollerade interventionsstudier om anhörigstöd där resultaten visar att utbildning och stödgrupper för anhöriga har positiva effekter. Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget inom området anhörigstöd eftersom dokumentation och systematiska uppföljningar av befintliga verksamheter när det gäller innehåll och kvalitet, vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning saknas. Området är också behäftat med en del metodologiska svårigheter som bland annat medför att det är svårt att jämföra resultaten mellan olika studier. Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för
många anhöriga, men att det är svårt att uttala vilka dimensioner som är bra för vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation och målet med anhörigstödet kan utvecklas. I kunskapsöversikten diskuteras också avgränsningar när det gäller vad som skall kallas för anhörigstöd samt allmänt behovet av definitioner av använda ord och begrepp.

Cross-national comparisons employed welfare state classifications to explain differences in care use in the European older population. Yet these classifications do not cover all care-related societal characteristics and limit our understanding of which specific societal characteristics are most important. Using the Survey of Health, Ageing and Retirement (second wave, 2006–07), the effect of societal determinants relating to culture, welfare state context and socio-economic and demographic composition on informal and formal care use of older adults in 11 European countries was studied. Multinomial multi-level regression analyses showed that, in addition to individual determinants, societal determinants are salient for understanding care use. In countries with fewer home-based services, less residential care, more informal care support and women working full time, older adults are more likely to receive informal care only. Older adults are more likely to receive only formal home care or a combination of formal and informal care in countries with more extensive welfare state arrangements (i.e. more home-based services, higher pension generosity), whereas the odds of receiving a combination of informal and formal care are also larger in countries that specify a legal obligation to care for parents. We tentatively conclude that the incorporation of societal determinants rather than commonly used welfare state classifications results in more understanding of the societal conditions that determine older adults' care use.

The overall aim of this thesis was to explore informal caregivers' daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person's main concern. The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography. Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple's relationship. The caregiving men's daily life was conceived as burdened, restricted and the partner relationship was affected. The men's attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as "Me and my spouse". The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females. Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.

Abstract 
Objective: The aim of the study was to highlight informal caregivers' interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People's Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worldwide. Europe has the highest old age dependency ratio, but other parts of the world are also experiencing a dramatic ageing of their population. The demands for care are increasing, and resources are shrinking. One way to support informal caregivers is through ICT.

Methods: The study employed a qualitative design. Focus group interviews were carried out with informal caregivers in Sweden. The interviews were analysed using a latent content analysis method.

Results: The analysis yielded a major theme, striving to feel confident, with four categories: informal caregivers' reflections and ideas about ICT; promoting their own health process; increasing their knowledge bank and informal caregivers' rights; and striving for inclusiveness.

Conclusions: The present study highlights the challenges that informal caregivers face in their daily life as well as their resources to devise possible solutions that could improve their situation. To preserve their health, a carer support plan including regular health checks could be helpful. ICT-based support (such as the ACTION service) could act as a way forward for supporting informal caregivers in their striving to feel confident. The study highlighted that ICT-based support has the potential to act as a direct benefit for informal caregivers.

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.

Older people take a great share of caregiving responsibility already and thus understanding of their strain, coping and satis-faction is required. The aim was to investigate dimensions of caregiving activities among elderly (75+) caregivers and to study the dimensions in relation to health-related quality of life (Paper I). It was also to investigate quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among men and women in a population-based sample aged 75 or older (Paper II). Another aim was to investigate coping strategies and sense of coherence (SOC) in relation to gender, the extent of care, caregiving activities and QoL in a sample of caregivers aged 75+ (n=171) and to explore the reliability and validity of an instrument assessing coping (CAMI) (Paper III). It was also to study correlation between gender, extent and content of the care, coping, satisfaction and difficulties in the caregiving situation and to identify clusters of caregivers (Paper IV), and to psycho-metrically explore two instruments assessing satisfaction (CASI) and difficulties (CADI) in the care (Paper IV) as well as sources of satisfaction together with caregiving difficulties. Responses to a Swedish postal survey (n=4278) (Paper II) showed that 18% helped another person due to that person's impaired health (Paper I), 41.6% women among the caregivers, mean age 81.8 (SD 4.96) for men 81.7 (SD 4.32). The second sample included 171 caregivers (59.6% men, mean age 82.1, SD 4.6, women 80.6, SD 3.9), response rate 47%, of whom almost 70% provided help every day (Papers III & IV). Adapting their activities to be prepared if something happened (52%), having regular contact to prevent problems (35%), helping in contacts with the hospital (57%), helping with IADL (49%), PADL (14%), medical care (11%) and helping to improve functions (14%) were activities reported. Adapting own activities, regular contact, weak economy and needing help with IADL oneself predicted low MCS-12 (Paper I). Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers, indicating that caregiving takes place mainly in the phase when the older person is healthy (Paper II). There were gender differences in loneliness, with women being more lonely. Loneliness and a small network were associated with low QoL among caregivers as well as elderly in general (Paper II). The 25% of the respondents (n=171) with the lowest MCS-12 scores were more dissatisfied with the information given about the practical and medical care than those with higher scores (Paper III). Higher MCS-12 predicted with using self-sustaining coping and a high SOC while poor economy and asking for social and practical support predicted low scores. The most frequent source of satisfaction was seeing the care recipient happy (77%) and problems with mobility in the person cared for (28%) and difficulties sleeping were frequently reported (14%) which shows that feelings of satisfaction were more frequent than experiencing difficulties. The difficulties did not differ between men and women.

Until recently, informal care (provided by relatives and friends) has been overlooked by policy-makers in the context of long-term care for dependent older people. Driven by concerns about the fiscal sustainability of long-term care services and by more self-conscious and demanding carers' movements across countries, informal care has been brought into the limelight.
Data on carers is still relatively scarce due in part to the nature of the care itself as it is often provided informally at home. In view of this, what do we know about informal carers and who benefits from them? Which country differences exist? Which policies are set in place to support them? This Policy Brief tries to shed light on these issues by using available data from (inter)national sources as well as qualitative information gathered in our recent publication "Facts and Figures on Long-term Care -- Europe and North America". It seeks to increase knowledge on informal carers and discuss some of the implications surrounding social policies that impact them. The analysis is very much policy-oriented and takes a comparative view, focusing mostly on the wider Europe.

This paper examines the role of care decision processes on informal caring-time choices. We focus on three care decisions: the caregiver's own decision, a family decision and a recipient request. Results show that informal caregivers, engaged in care activities as a result of a family decision, are more likely to devote more than 5 h to care activities, even after allowing for endogeneity. Our findings are robust to controlling for a large number of socio-demographic characteristics, including care recipient and caregiver characteristics. Supplemental analysis, developed to explore whether care arrangements are related to informal caregiver's satisfaction, indicates that the family decision heavily penalizes informal caregivers. Given the importance of informal care activities in reducing health care costs, our findings imply that care decision processes should be taken into consideration when formulating health care policies.

This paper uses the European Community Household Panel (ECHP) to analyze the relationship between the dynamics of labour force participation and informal care to the elderly for a sample of women aged 20-59 across 13 European countries. The analysis has two focal points: the relative contributions of state dependence as well as observed and unobserved heterogeneity in explaining the dynamics in women's labour force participation and the existence and consequences of non-random attrition from the ECHP. The results indicate positive state dependence in labour force participation in all 13 EU countries used in the analysis. The share of unobserved heterogeneity accounts for between 45% and 86% of the total variation in labour force participation. Informal care-giving is found to have a significant, negative impact on the probability of employment only in Germany. Nevertheless, analysis of different sub-groups indicates that the impact is largest for middle-aged women and also for single women in several EU countries.

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

Avhandling

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

"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.

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.

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.

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.

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.

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

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

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

The importance of involving family members in the care of individuals with schizophrenia or other psychotic illnesses has received increasing attention within psychiatric healthcare services. However, several studies suggest that family members often experience a lack of involvement. Furthermore, research indicates that family members' experience of the professional's approach has bearing on whether they feel involved or not. Thus, the aims of this study were to investigate the level of importance that the family members of individuals with schizophrenia or other psychotic illnesses ascribe to the professionals' approach, the level of agreement between their experiences and what they consider as important, and aspects they consider to be important with regards to contact with professionals. Seventy family members from various parts of Sweden participated. Data were collected by the Family Involvement and Alienation Questionnaire and open-ended questions. The median level and quartiles were used to describe the distribution, and percentage agreement was analysed. Open-ended questions were analysed by qualitative content analysis. The results reveal that the majority of the participants consider Openness, Confirmation, and Cooperation as important aspects of a professional's approach. Continuity emerged as an additional aspect. The results show a low level of agreement between the participants' experience and what they consider as important.

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

The aim of this article is to reveal how family members act, react and reason when their elderly relative considers relocation to a residential home. Since family members are usually involved in the logistics of their elderly relative's relocation, yet simultaneously expected not to influence the decision, the focus is on how family members experience participation in the relocation process in a Swedish context. 17 family members are included in 27 open, semi-structured interviews and follow-up contacts. Prominent features in the findings are firstly the family members' ambition to tone down their personal opinions, even though in their minds their personal preferences are clear, and secondly, the family members' ambivalence about continuity and change in their everyday lives. Family members are found to apply the adapting, the representing, or the avoiding strategy, indirectly also influencing their interaction with the care manager. Siblings applied the adapting strategy, spouses the representing strategy, while family members in the younger generation at times switched between the strategies.

Abstract:
Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

Finch discusses the nature of family life, especially concepts of duty, responsibility and obligation and how these factors operate in family and kin relationships.

OBJECTIVES:
This study evaluated client-level outcomes among an entire statewide group of Family Preservation and Family Support (FPFS) programs funded under PL 103-66.
METHOD:
A total of 1,601 clients (primarily low income, moderate to high risk with no current involvement in the child protection system) were assessed and followed over time for future child maltreatment events reported to Child Protective Services. The study compared program completers with program dropouts, compared recipients of more lengthy full-service programs with recipients of one-time services, and examined the effects of program duration, intensity, service site (center-based vs. home based) and service model/content. Effects were modeled using survival analysis and variable-exposure Poisson hierarchical models, controlling for initial client risk levels and removing failure events because of surveillance bias. Changes in lifestyle, economic and risk factors were also examined.
RESULTS:
A total of 198 (12.2%) participants had at least one defined failure event over a median follow-up period of 1.6 years. Controlling for risk and receipt of outside services, program completers did not differ from program dropouts or from recipients of one-time services, and there was no relationship between program intensity or duration and outcomes. Program types designed to help families meet basic concrete needs and programs using mentoring approaches were found to be more effective than parenting and child development oriented programming, and center-based services were found to be more effective than home-based services, especially among higher risk parents.
CONCLUSIONS:
The findings did not support the effectiveness of these services in preventing future maltreatment cases, and raised questions about a number of common family support assumptions regarding the superiority of home-visiting based and parent training services. A number of possible reasons for this are explored.

Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed. Adapted from the source document.

Background

Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

Methods

Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

Findings

323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0·03), SF-36 scores (energy p=0·02, mental health p=0·004, pain p=0·03, physical function p=0·025, and general health perception p=0·02), quality of life on the Dartmouth co-op chart (p=0·01), and satisfaction with understanding of stroke (82 vs 71%, p=0·04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0·04), but use of other services was similar.

Interpretation

Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

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.

This article utilizes four knowledge sources to characterize a current gap in policy and practice related to serving families in early intervention (birth to 5) programs. It argues that the field of early intervention has focused primarily on implementing family-centered practices by focusing on how families and professionals should interact. The field has not sufficiently addressed what supports and services should be offered to families to enhance the likelihood of positive outcomes for families themselves and for their children with disabilities. The paper concludes with recommendations for enhancing policy, research, and professional development related to family services and supports.

A master of family therapy, Salvador Minuchin, traces for the first time the minute operations of day-to-day practice. Dr. Minuchin has achieved renown for his theoretical breakthroughs and his success at treatment. Now he explains in close detail those precise and difficult maneuvers that constitute his art. The book thus codifies the method of one of the country's most successful practitioners.

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.

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.

Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.

Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.

Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.

Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.

Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.

Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.

Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.

Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.

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.

Findings from 2 studies investigating sources of variations in parents' assessment of help-giving practices and personal control appraisals are reported. A total of 280 parents of young children with disabilities or at-risk for poor developmental outcomes participated. Parents were involved in early intervention and human services programs that differed along a continuum from professionally centered to family focused. Demographic characteristics showed no relationship to either help-giving practices or perceptions of personal control. In contrast, program characteristics were highly related to help-giving practices, and both program characteristics and help-giving practices were highly related to personal control.

Abstract

The Family Initiative's International Neonatal Fathers Working Group, whose members are the authors of this paper, has reviewed the literature on engaging fathers in neonatal units, with the aim of making recommendations for improving experience of fathers as well as health outcomes in neonatal practice. We believe that supporting the father-baby bond and supporting co-parenting between the mother and the father benefits the health of the baby, for example, through improved weight gain and oxygen saturation and enhanced rates of breastfeeding. We find, however, that despite much interest in engaging with parents as full partners in the care of their baby, engaging fathers remains sub-optimal. Fathers typically describe the opportunity to bond with their babies, particularly skin-to-skin care, in glowing terms of gratitude, happiness and love. These sensations are underpinned by hormonal and neurobiological changes that take place in fathers when they care for their babies, as also happens with mothers. Fathers, however, are subject to different social expectations from mothers and this shapes how they respond to the situation and how neonatal staff treats them. Fathers are more likely to be considered responsible for earning, they are often considered to be less competent at caring than mothers and they are expected to be "the strong one", providing support to mothers but not expecting it in return. Our review ends with 12 practical recommendations for neonatal teams to focus on: (1) assess the needs of mother and father individually, (2) consider individual needs and wants in family care plans, (3) ensure complete flexibility of access to the neonatal unit for fathers, (4) gear parenting education towards co-parenting, (5) actively promote father-baby bonding, (6) be attentive to fathers hiding their stress, (7) inform fathers directly not just via the mother, (8) facilitate peer-to-peer communication for fathers, (9) differentiate and analyse by gender in service evaluations, (10) train staff to work with fathers and to support co-parenting, (11) develop a father-friendly audit tool for neonatal units, and (12) organise an international consultation to update guidelines for neonatal care, including those of UNICEF.

Siblings are often overlooked in the provision of services to families of children with disabilities. These children also need education and support to ensure their own optimal development. Moreover, as funding and support services decrease, engaging siblings is paramount to the health and safety of children with developmental disabilities. Focusing on the observed therapeutic impact of the group process, this article describes and assesses a model for facilitating a support group for siblings of children with developmental delays. It advocates for significantly increased attention within the social work community to the needs of the sibling population.

OBJECTIVES:
The objective of this study was to conduct a systematic search of the literature for studies that estimated the prevalence/incidence of Fetal Alcohol Spectrum Disorder (FASD) in correctional systems in different countries and, based on these data, to estimate a) the number of people with Fetal Alcohol Syndrome (FAS)/FASD within the criminal justice system population, and b) the relative risk of becoming imprisoned for individuals with FAS/FASD compared with those without FAS/FASD.
METHOD:
A systematic world literature review of published and unpublished studies concerning the prevalence/incidence of FASD in correctional systems was conducted in multiple electronic bibliographic databases.
SYNTHESIS:
Very little empirical evidence is available on the prevalence of FASD in correctional systems. There were no studies estimating the prevalence/incidence of FASD in correctional systems found for any country other than Canada and the USA. The few studies that have identified incarcerated individuals with FASD estimate that the number of undiagnosed persons in correctional facilities is high. Based on available Canadian data, this study estimates that youths with FASD are 19 times more likely to be incarcerated than youths without FASD in a given year.
CONCLUSION:
More studies investigating the prevalence/incidence of alcohol-affected people in the criminal justice system are required. There is an urgent need to raise awareness about the prevalence and disabilities of individuals with FASD in the criminal justice system and about appropriate responses. The criminal justice system is an ideal arena for intervention efforts aimed at the rehabilitation and prevention or reduction of recidivism in this unique population.

Kunskapsöversikten har skrivits på uppdrag av Socialstyrelsen. Det är en sammanställning av aktuell vetenskaplig litteratur rörande psykosociala konsekvenser av alkoholrelaterade fosterskador samt preventiva aspekter på denna typ av fosterskador.

När en gravid kvinna dricker alkohol gör hennes foster det också. Eftersom det inte finns
någon skyddande blodbarriär kan alkohol fritt korsa moderkakan och orsaka omfattande
skador både fysiologiskt, neurologiskt och beteendemässigt på det växande fostret.
Alkoholrelaterade fosterskador går under den engelska termen Fetal Alcohol Spectrum
Disorders (FASD, Fetala alkohol spektrum störningar). Trots att alkoholrelaterade skador är
fullt möjliga att förhindra utgör de idag en av de vanligaste orsakerna till utvecklingsstörning
i västvärlden. I västländer där prevalensundersökningar har gjorts är antalet barn som
föds med FASD fler än de med autismspektrumstörningar, Downs syndrom eller cerebral
pares. I siffror handlar det om mellan 1 och 6 % av alla levande födda, vilket i Finland skulle
innebära att 600–3600 barn föds med alkoholrelaterade fosterskador varje år. Utöver de
direkta toxiska effekterna av alkohol utsätts barnen som föds med FASD ofta för en dubbel
börda i livet. Dels har barnen redan vid födseln neurologiska skador, dels föds de också
med stor sannolikhet in i en familj med minst en missbrukande förälder och en omgivning
där de utsätts för ytterligare risker i sin utveckling. Trots detta är FASD idag en starkt
underdiagnosticerad grupp inom hälso- och sjukvården.
Den här avhandlingen utgör en del av ett större multinationellt forskningsprojekt, The
Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), som initierades av det
nationella institutet för alkoholmissbruk och alkoholism (National Institute of Alcohol Abuse and
Alcoholism, NIAAA) i USA. Det huvudsakliga syftet med den föreliggande avhandlingen var att
undersöka en kohort med barn och ungdomar med alkoholrelaterade fosterskador i Finland.
Avhandlingen består av fem studier med ett brett fokus på diagnos, kognition, beteende,
adaptiva färdigheter och avvikelser i hjärnans ämnesomsättning hos barn och unga med FASD.
Deltagarna bestod av fyra olika grupper: en grupp som varit utsatt för alkohol under
graviditeten (FASD); en IQ-matchad kontrollgrupp som huvudsakligen bestod av barn med
specifika inlärningssvårigheter (Specific Learning Disorder, SLD); och två grupper med normala
kontroller (CON1 och CON2). Deltagarna rekryterades via genomgång av medicinska journaler,
slumpmässigt urval ur det finska befolkningsregistret och e-postförfrågningar till studerande.
Med diagnoser som är såpass svåra att fastställa som de inom FASD-spektret är det av stor
betydelse att de föreliggande studierna har utförts i nära samarbete med ledande experter
på FASD (prof. Edward Riley och prof. Sarah Mattson från Center for Behavioral Teratology vid
San Diego State University, USA och prof. Eugene Hoyme från Sanford School of Medicine,
University of South Dakota, USA). Deltagarna i föreliggande studier är således mycket noggrant
undersökta och diagnosticerade. I den här avhandlingen testades för första gången de
amerikanska reviderade Institute of Medicines diagnoskriterier för FASD på en finsk population.
Kriterierna visade sig tillförlitliga i att särskilja olika undergrupper bland alkoholskadade barn.
Ett annat värdefullt hjälpmedel som användes vid diagnosticeringen var en speciellt utarbetad
skala för bedömning av de specifika dysmorfa dragen vid FASD (Studie 1).
Syftet med Studie 2 var att klargöra relationen mellan alkoholrelaterade dysmorfa drag och
allmän kognitiv kapacitet. Resultaten visade på en signifikant korrelation mellan dysmorfa
drag och kognitiv kapacitet, så att barn med större avvikelser i sin tillväxt och med mer
dysmorfa drag också tenderade att uppvisa större kognitiva svårigheter. Sambandet var
emellertid måttligt och det kan betonas att fysiologiska markörer och kognitiv kapacitet inte
alls alltid går hand i hand hos individer med FASD.
Barnen och ungdomarna i FASD-gruppen uppvisade omfattande problem i beteende och
mental hälsa jämfört med kontrollgruppen (CON1). I studie 3 utforskades närmare hurudana
risk- och skyddande faktorer som kunde associeras med beteendeproblemen i FASD-gruppen.
Studien fokuserade på diagnosrelaterade och omgivningsrelaterade faktorer. Resultaten visade
att två grupper med förhöjd risk för beteendeproblem kunde urskiljas: 1) Ju längre tid ett barn
hade spenderat intaget på barnhem desto högre risk för beteendeproblem och 2) ju mindre
dysmorfa drag ett barn med FASD hade desto mer omfattande beteendeproblem uppvisade
barnet. Resultaten understryker betydelsen av att inom hälso- och sjukvården uppmärksamma
och ge vård och adekvata insatser också (eller framför allt) till mindre synligt alkoholskadade
barn. Det är också av stor vikt att uppmärksamma behoven och välmåendet hos de barn med
FASD som växer upp på olika former av barnhem. För dessa barn verkar kombinationen av
medfödda fysiologiska och psykologiska skador tillsammans med minskad möjlighet till en nära
och kontinuerlig relation till en närstående vuxen göra dem extra utsatta och sårbara i livet.
Studie 4 fokuserade på adaptiva färdigheter så som kommunikationsförmåga, förmåga att
klara ett dagligt liv och sociala förmågor. Adaptiva färdigheter handlar med andra ord om
förmågor som gradvis hjälper en individ att klara ett självständigt liv, upprätthålla sociala
relationer och integreras i samhället. Resultaten visade att de adaptiva färdigheterna hos
barn och unga som växer upp med FASD är avsevärt sämre än hos både normalt utvecklade
barn och IQ-matchade barn med inlärningssvårigheter. Klart skilda adaptiva profiler
uppdagades där FASD-gruppen klarade sig sämre än barnen med inlärningssvårigheter
som i sin tur klarade sig sämre än barnen i den normala kontrollgruppen. Det är viktigt att
poängtera att barnen med inlärningssvårigheter presterade bättre än FASD-gruppen trots
att de kognitivt befann sig på samma nivå. Den här studien är den första att jämföra adaptiva
förmågor hos en grupp barn och unga med FASD jämfört med både en grupp IQ-matchade
barn med inlärningssvårigheter och en grupp normalt utvecklade barn.
Slutligen påvisades i studie 5 neurokemiska förändringar med hjälp av magnetisk resonansspektroskopi
(MRS) hos tonåringar och unga vuxna med FASD som kunde relateras till
alkoholbruk under fosterstadiet 14–20 år tidigare. De neurokemiska förändringarna kunde
påvisas i ett flertal områden i hjärnan: i den frontala och parietala hjärnbarken, i corpus
callosum, thalamus, i frontala områden med vit substans samt i lilla hjärnans nucleus dentatus.
Förändringarna stämmer överens med den neuropsykologiska profilen vid FASD. Glia celler (vit
hjärnsubstans) verkade mer påverkade av alkohol under fosterstadiet än neuron (nervceller).
Sammantaget kan konstateras att större samhälleliga ansträngningar och resurser borde
fokuseras på att känna igen och diagnosticera FASD och på att stöda speciellt utsatta
riskgrupper av alkoholskadade barn och unga. Utan tillräcklig intervention och stöd löper
de en stor risk för marginalisering och utslagning, vilket är kostsamt inte bara för samhället
utan också för de många barn som växer upp med FASD.

When fetal alcohol syndrome (FAS) was initially described, diagnosis was based upon physical parameters including facial anomalies and growth retardation, with evidence of developmental delay or mental deficiency. Forty years of research has shown that FAS lies towards the extreme end of what are now termed fetal alcohol spectrum disorders (FASD). The most profound effects of prenatal alcohol exposure are on the developing brain and the cognitive and behavioral effects that ensue. Alcohol exposure affects brain development via numerous pathways at all stages from neurogenesis to myelination. For example, the same processes that give rise to the facial characteristics of FAS also cause abnormal brain development. Behaviors as diverse as executive functioning to motor control are affected. This special issue of Neuropsychology Review addresses these changes in brain and behavior highlighting the relationship between the two. A diagnostic goal is to recognize FAS as a disorder of brain rather than one of physical characteristics.

Fetal alcohol syndrome (FAS) is currently recognized as the most common known cause of mental retardation, affecting from 1 to 7 per 1000 live-born infants. Individuals with FAS suffer from changes in brain structure, cognitive impairments, and behavior problems. Researchers investigating neuropsychological functioning have identified deficits in learning, memory, executive functioning, hyperactivity, impulsivity, and poor communication and social skills in individuals with FAS and fetal alcohol effects (FAE). Investigators using autopsy and brain imaging methods have identified microcephaly and structural abnormalities in various regions of the brain (including the basal ganglia, corpus callosum, cerebellum, and hippocampus) that may account for the neuropsychological deficits. Results of studies using newer brain imaging and analytic techniques have indicated specific alterations (i.e., displacements in the corpus callosum, increased gray matter density in the perisylvian regions, altered gray matter asymmetry, and disproportionate reductions in the frontal lobes) in the brains of individuals prenatally exposed to alcohol, and their relations with brain function. Future research, including using animal models, could help inform our knowledge of brain-behavior relations in the context of prenatal alcohol exposure, and assist with early identification and intervention.

FIB-projektet 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.

This study examined the effects of filial piety on the appraisal of caregiving burden by Chinese-Canadian family caregivers. A quantitative telephone survey was used as the research design for this study. A total of 339 randomly selected Canadian-Chinese family caregivers of elderly were interviewed by telephone. A hypothesized model denoting both the direct and indirect effects of filial piety on caregiving burden was tested using structural equation modeling. While stressors and appraisal factors reported direct predicting effects on caregiving burden, filial piety indirectly affected caregiving burden by altering appraisals of the caregiver role. Filial piety served as a protective function to reduce the negative effects of stressors and to enhance the positive effect of appraisal factors on caregiving burden.

This paper examines the relationship between attitudes of filial responsibility and five different types of care-giving behaviours to parents among three cultural groups. It does so within an assessment of the relative importance of cultural versus structural factors for care-giving behaviours. Face-to-face interviews were conducted with 100 Caucasian-Canadians, 90 Chinese-Canadians and 125 Hong Kong-Chinese. Multiple regression analyses assessed the association of cultural and structural factors with behaviours among the total sample and each of the three cultural groups. Limited support was found for an association between care-giving attitudes and care-giving behaviours. Attitudes are related to emotional support only among the two Chinese groups as well as to financial support among Chinese-Canadian respondents and to companionship among Hong Kong-Chinese respondents. Attitudes are not the strongest predictors and are unrelated to assistance with basic and instrumental activities of daily living. However, cultural group per se is a strong predictor of care-giving behaviours as are: parental ill health, living arrangements, and relationship quality. This study suggests gerontological assumptions about the role of societal norms and personal attitudes in parental care-giving should be questioned. It also suggests the need for further inquiry into unpacking those aspects of 'cultural group' that are related to behavioural differences, and the importance of examining multiple types of care-giving behaviours and of distinguishing task-oriented helping behaviour from other types of assistance.

I denna rapport beskrivs politikeruppdraget vid politisk och finansiell samordning. Vid samordning samlas resurser över organisationsgränser för att användas gemensamt. Det unika med politisk och finansiell samordning är att huvudmännen har ett gemensamt kostnadsansvar. Resurserna kan omfördelas mellan huvudmän. Politisk samordning innebär att en politisk arena skapas som prioriterar resurser över organisationsgränser. I rapporten påvisas att politikeruppdraget skiljer sig mycket åt beroende på vilken inriktning som finns på olika områden; mot samordningsperspektiv eller befolkningsperspektiv. Inriktningen har skapats av vald struktur men också av hur aktörerna ser på sin roll och dess utövande. En ny struktur skapas på den parlamentariska arenan. I denna samordning betonas politikernas roll. Rollskillnader utvecklas dock mellan olika politiker, vilket gör att de får olika betydelse och status. Detta påverkar i sin tur deras inflytande. En samförståndspolitik utvecklas, där politikerna inte driver partipolitik. Genom politisk samordning skapas förutsättningar för gemensamma prioriteringar av behov. Den nya strukturen påverkar politikerna som aktörer i samtliga områden.

I rapporten återges ambitioner med finansiell och politisk samordning samt hur en ny politisk struktur skapas. Dessutom beskrivs politikernas motiv till engagemang, hur de ser på sin uppgift samt hur politisk organisering genom behovsidentifiering, prioritering, resursmobilisering och utvärdering utvecklas. Studien behandlar också politikernas betydelse för samarbete mellan chefer och professionella.

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity (i. e. the number of messages posted per week) did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing. These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups.

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.