Bibliotek

ABSTRACT Child bereavement interventions are rarely subjected to rigorous evaluation, so there is scant evidence in the literature to support their efficacy. This article reports the evaluation of a residential group programme developed by the UK charity Winston's Wish for children and young people and their parents/carers bereaved in traumatic circumstances (murder or manslaughter). A number of validated psychometric measures were taken pre- and post-intervention, and the results indicated positive outcomes for participants. Further research is needed to shed more light on which aspects of bereavement interventions are effective for which children and young people. However, the study does demonstrate that it is possible to conduct scientifically objective and rigorous evaluations of bereavement work with children and young people.

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

Kvinnors position som informella vårdare har ofta tagits för givet i forskning om och socialpolitisk styrning av informell vård inom familjen i västeuropa, medan relativt få diskussioner har förts om mäns delaktighet och ansvar för densamma. Män som helt oförutsett hamnar i en situation i livet där de måste bestämma sig för om man ska ta sig an ett påtagligt vårdansvar går på många sätt bortom alla de förutsättningar som män vardagsvis har att hantera i livet. Genom att undersöka vårdande mäns insatser i sina familjer kan man lära sig en del av vad som faktiskt sker när män tar på sig ett långvarigt vårdansvar. I denna studie har vi intervjuat åtta döttrar som växt upp och/eller levt nära en pappa som under lång tid vårdat sin partner i det egna hemmet. Resultatet visar att när män har ett långvarigt vårdansvar så kommer det också något gott ur de kunskaper de fått av vårdandet i relation till de egna barnen. Alla döttrar som vi intervjuat prisar sina fäders insatser och -hans hjälpande händer- därför att det hade gett dem en närmare och mer "genuin" relation. Resultatet visar också att vårdansvaret för männen inneburit att de bryter mot rådande konventioner om vad manlighet är och på olika sätt fått hantera och betala för det priset i det offentliga livet. Ett långvarigt och påtagligt vårdansvar innebär således en transformering av sociala relationer, privat och offentligt samt att presentera ett alternativt sätt att vara man på. Avslutningsvis föreslås en mer genusbaserad förståelse och ett mer strategiskt arbets- och förhållningsätt bland professionella, i socialt och välfärdsarbete, i mötet med döttrar och andra familjemedlemmar som stödjer sina vårdande fäder.

Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.

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

En rad tragiska händelser i början av 2000-talet som får stor massmedial uppmärksamhet är startpunkten för utredningen Nationell psykiatrisamordning. Utredningen syftade till att se över flera av de områden som berör social omsorg och rehabilitering av personer med psykisk sjukdom eller psykiska funktionsnedsättningar. Statliga stimulansmedel avsattes att användas till kompetenshöjande åtgärder för "baspersonal" inom landstingets psykiatri och kommunernas socialtjänst. 2008 ansökte sex kommuner i Hälsingland och landstinget i Gävleborg om dessa medel och projektet som startas får namnet "Hela vägens psykiatri i Gävleborg".
Det övergripande målet med projektet "Hela vägens psykiatri i Gävleborg" är att förstärka kompetensen bland personal som i sitt dagliga arbete kommer i kontakt med personer med psykisk sjukdom eller psykisk funktionsnedsättning. Kompetenssatsningen syftar till att öka den enskildes (brukarens/patientens) möjligheter till integration i samhället och att leva ett självständigt liv.

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

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

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

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

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

Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.

Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.

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

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

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

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

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

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

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

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

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

Keywords: Substance Abuse, Child Welfare, Treatment

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

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

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

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

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

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

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

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

Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.

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

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

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

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

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

Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.

Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.

Brukarmakt i teori och praktik fördjupar, problematiserar och breddar diskussionen om brukarnas inflytande i människovårdande verksamheter. Utgångspunkten är det socialpsykiatriska området, men boken ger redskap för att förstå brukarmakt i vidare mening inom socialtjänst, vård och omsorg.

Brukarnas makt och delaktighet diskuteras i relation till begrepp som demokrati, medborgarskap och sociala rättigheter, liksom till evidensbaserat socialt arbete. Historiska beskrivningar och teori kompletteras med exempel från praktiken. Även brukarorganisationernas roll analyseras.

Boken är avsedd som kurslitteratur vid utbildningar med inriktning mot vård, omsorg och socialt arbete, men kan också användas av anställda inom offentlig sektor och engagerade i ideella organisationer och föreningar.

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

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

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

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

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

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

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

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

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

Ett barn är oss fött, är det vackraste uttrycket för att man kan hysa hopp och tillit till världen, enligt Hanna Arendt. Arendt beskrev hur varje människas födelse är början på någonting nytt, något som också vill framhållas med avhandlingens titel. Titeln markerar också det faktum att det barn som föds med en funktionsnedsättning på ett särskilt vis blir samhällets barn. Syftet med föreliggande studie är att beskriva upplevelsen av att bli förälder när barnet har en funktionsnedsättning. Utgångspunkten är tagen i ett relationellt perspektiv. De teoretiker som fått ge sina bidrag är, förutom Arendt, Buber, Stern och Winnicott. I analysen av berättelserna har inspiration hämtats från Ricoeur i en hermeneutisk fenomenologisk ansats. De teman som avhandlingen utgår ifrån är möten och dessa är mötet med barnet, mötet med omgivningen och mötet med professionella. 30 föräldrar, 19 mödrar och 11 fäder, har berättat om sina upplevelser av föräldraskapet. Beskedet om barnets funktionsnedsättning upplevdes kaotiskt och omvälvande av föräldrarna. Många starka och olika känslor kom i omlopp. Föräldrarna kunde uppleva sig vara utkastade från världen och att framtiden i ett slag togs ifrån dem. Framtiden blev det som oroade och den fråga som utmejslades var: Hur kan man leva sitt liv? Många professionella blev inblandade kring barnet, vilket både kunde bli till nackdel och fördel för familjen. Professionellas attityd och uttalanden om barnet hade stor påverkan och följde över tid. Samtidigt som barnet på ett sätt blev samhällets barn hade föräldrarna en känsla av att de måste föra en kamp för sitt barn i samhället, en sorts kärlekskamp som gällde att barnet skulle bli betraktad efter sina förutsättningar. En kärlekskamp hade också inledningsvis gällt för en del föräldrar i deras egen inre kamp i att kunna närma sig barnet. Därmed blev kärlekskampen dubbel. I det nya trevande föräldraskapet handlade det om att finna sin plats i världen och att finna ett sätt att vara. I samvaron med barnet konkurrerade två olika varanden under den första tiden, att vara och att göra . Med tiden kunde sorgen över beskedet separeras från barnet och det blev barnet som hjälpte till att bära sorgen över beskedet. I avhandlingen diskuteras föräldrarnas situation, med avstamp i de frågeställningar som Stern menar att föräldrar har att hantera. Även hur lek och träning förhåller sig till varandra diskuteras, liksom berättandets betydelse och professionellas ansvar. Med föräldrarnas berättelser som grund föreslås hur ett specialpedagogiskt perspektiv kan konkretiseras och hur några specialpedagogiska uppgifter därmed kan urskiljas. - See more at: http://www.skolporten.se/forskning/avhandling/ett-barn-ar-oss-fott-att-bli-foralder-nar-barnet-har-en-funktionsnedsattning-ett-beskrivande-och-tolkande-perspektiv/#sthash.VTWKd0g6.dpuf

This study investigated the effectiveness of a cognitive behavioral group program for spouses of stroke patients. The program consists of 15 bi-monthly 112h sessions. The goal of the intervention is to reduce the prevalence of mental disorders and burnout among care-giving spouses of stroke patients. The sample (stroke patients and their spouses) consisted of one intervention group (n=38 couples) and two different control conditions, those receiving informational support (n=35 couples) and those receiving standard care (n=51 couples). We used the following instruments to measure spouses' mental health and quality of life: Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI), WHO Quality of Life Questionnaire. Measurements were taken before the intervention (Time 1), directly following the intervention (Time 2) and 6 months after Time 2 (Time 3). Several regression analyses allowed for examination of the short-term and long-term effects of the intervention. The spouses' participation in the intervention program was associated with significant short-term changes in care-giving spouses' quality of life and with long-term changes in their quality of life and depression. The presented multi-component intervention appears to have an immediate effect on care-giving spouses' quality of life. In contrast, the intervention-related changes in more resistant mental-health-related variables did not appear until after a latent stage in the later post-intervention phase.

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

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

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

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

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.

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.

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Doktorsavhandling

Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade "brukares" självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett "idealt" självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det "ideala" självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det "samtalande" och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.

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

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

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

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

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

Regeringens skrivelse 2007/08:39.

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

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

The aim of this study was to explore and interpret the meaning of residents' experiences of encounters with their relatives and other significant persons in nursing homes. Twelve residents in three different nursing homes in a western Sweden municipality were interviewed. The method used was hermeneutical text analysis. Three themes emerged in the interpretation of the text: being pleased, being someone, and being inconvenient. These themes were also described through seven subthemes: to be happy to have someone, to make someone else happy, going back in life, to be together in a community, not being alone, to be disconnected, and to be a burden. The study concludes that it is important for nurses in nursing homes to develop a deeper insight into what various social contacts can mean for residents. To develop this knowledge, it is important that nurses in nursing homes can be educated, and supported by clinical supervision, in relation to residents' experiences of encounters with relatives and other significant persons.

den 11 juli

Svar på fråga

2011/12:669 Samordnare för föräldrar till barn med funktionsnedsättning

Statsrådet Maria Larsson

Lennart Axelsson har frågat mig om försöksverksamhet med samordnare för föräldrar till barn med funktionsnedsättning har startats, och om inte, när och var kommer det att ske.

Inledningsvis vill jag understryka vikten av att de brister som fortfarande finns i samordningen av stödet till barn och unga med funktionsnedsättning åtgärdas. Regeringens arbete för att förbättra både informationen och samordningen av stödet till barn och unga med funktionsnedsättning är prioriterat. Det är dock angeläget att de åtgärder som vidtas är effektiva och får avsedd effekt.

Landstingen ansvarar för att erbjuda personer som tillhör personkretsen för LSS, det vill säga lagen (1993:387) om stöd och service till vissa funktions­hindrade, rådgivning och annat personligt stöd (se 9 § 1 p. LSS). Insatsen innefattar kvalificerade insatser av rådgivande och allmänt stödjande karaktär från flera olika kompetenskategorier som behövs för att underlätta det dagliga livet för den enskilde och dennes anhöriga. Insatserna kan vara såväl medicinska, psykologiska, sociala som pedagogiska. I förarbetena till bestämmelsen om rådgivning och annat personligt stöd (prop. 1992/93:159, s. 59 f.) betonas särskilt behovet av stöd för den dagliga livsföringen hos såväl föräldrar till ett barn med funktionsnedsättning som barn och unga med funktionsnedsättning och deras anhöriga. Vikten av allsidiga och samordnade insatser betonas härvidlag.

Socialstyrelsen fördelar årligen medel till landstingen för ovanstående insats. För innevarande år disponerar Socialstyrelsen 94 500 000 kronor att fördelas till landstingen på grundval av antalet invånare i respektive landsting (se närmare statsbudgetens utgiftsområde 9 Hälsovård, sjukvård och social omsorg, anslag 4:2, anslagsposten 1 Rådgivning och annat stöd).

För att så långt möjligt säkerställa att en försöksverksamhet med samordnare ska få avsedd effekt och kunna finansieras inom ramen för befintliga medel vill regeringen först kartlägga hur tilldelade anslag för landstingens insatser för råd och annat personligt stöd används i dag och för vilka ändamål. Vidare är det angeläget att inventera de goda exempel som finns på fungerande samverkan mellan olika kompetenskategorier för att erbjuda råd och annat stöd till enskilda enligt intentionerna i LSS. De goda exemplen kan sedan tjäna som utgångspunkt för förslag till utformning av försöksverksamhet. Regeringen avser därför inom kort att ge Socialstyrelsen i uppdrag att genomföra en sådan kartläggning samt föreslå hur en försöksverksamhet med samordnare för barn och unga med funktionsnedsättning samt deras anhöriga skulle kunna bedrivas inom ramen för ovan angivet anslag och syfte. Samordnarens uppgift bör vara att underlätta samverkan mellan olika aktörer för att förbättra samordningen av samhällets stöd till familjer med barn och unga med funktionsnedsättning.

När Socialstyrelsen har redovisat sina förslag kommer sedan regeringen att ta ställning till när och var en försöksverksamhet kan startas.

av Lennart Axelsson (S)

till statsrådet Maria Larsson (KD)

Familjer som har barn med funktionsnedsättning har varje år kontakt med i genomsnitt 17 personer kring sitt barns funktionsnedsättning och de insatser som barnet behöver. Det visade Riksförbundet för rörelsehindrade barn och ungdomar (RBU) 2008 i rapporten Men dom har ju fått det så bra!? .

Det finns föräldrar som måste ha upp till 90 myndighetskontakter, något som tar både tid och kraft. RBU har sedan 2008 drivit kravet att familjer med barn med funktionsnedsättning ska få hjälp av en särskild hjälpsamordnare. De har fått stöd av många andra. Socialdemokraterna har i riksdagen drivit frågan om försöksverksamhet med samordnare.

År 2011 konstaterade även Riksrevisionen att föräldrar till barn med funktionsnedsättning bär en tung börda med att samordna stöd som barnen får från olika håll och föreslog därför en försöksverksamhet och med särskilda samordnare.

Riksdagens socialutskott konstaterade att samordningsproblemen var stora och skrev i ett betänkande som antogs av riksdagen hösten 2011 att: "Utskottet har fått veta att regeringen har för avsikt att påbörja en försöksverksamhet med samordnare. Utskottet förutsätter att försöksverksamheten ges hög prioritet och påbörjas under 2012."

Såvitt jag vet har inte statens försöksverksamhet startat.

Med anledning av detta vill jag fråga statsrådet:

Varför har inget hänt trots att 1,5 år har gått sedan beslutet?

När kommer försöksverksamheten i gång?

Varför har inte riksdagen informerats om att försöksverksamheten inte har startat?

As more people with intellectual disability have children, serious concerns are being raised about the unusually high rate at which their children are removed. This review describes how parents with intellectual disability fare in child protection and court processes and offers both an empirical and a legal critique of frequently encountered presumptions about their parenting capacity.

Background Stigma affects not only people with mental illnesses, but their families as well. Understanding how stigma affects family members in terms of both their psychological response to the ill person and their contacts with psychiatric services will improve interactions with the family.

Aims To investigate factors of psychological significance related to stigma of the relatives.

Method In a Swedish multi-centre study, 162 relatives of patients in acute psychiatric wards following both voluntary and compulsory admissions were interviewed concerning psychological factors related to stigma.

Results A majority of relatives experienced psychological factors of stigma by association. Eighteen per cent of the relatives had at times thought that the patient would be better off dead, and 10% had experienced suicidal thoughts. Stigma by association was greater in relatives experiencing mental health problems of their own, and was unaffected by patient background characteristics.

Conclusions Interventions are needed to reduce the negative effects of psychological factors related to stigma by association in relatives of people with mental illness.

Background Stigma affects not only people with mental illnesses, but their families as well. Understanding how stigma affects family members in terms of both their psychological response to the ill person and their contacts with psychiatric services will improve interactions with the family.

Aims To investigate factors of psychological significance related to stigma of the relatives.

Method In a Swedish multi-centre study, 162 relatives of patients in acute psychiatric wards following both voluntary and compulsory admissions were interviewed concerning psychological factors related to stigma.

Results A majority of relatives experienced psychological factors of stigma by association. Eighteen per cent of the relatives had at times thought that the patient would be better off dead, and 10% had experienced suicidal thoughts. Stigma by association was greater in relatives experiencing mental health problems of their own, and was unaffected by patient background characteristics.

Conclusions Interventions are needed to reduce the negative effects of psychological factors related to stigma by association in relatives of people with mental illness.

Vårdprogram utarbetat i samarbete mellan Akademiska sjukhuset, primärvården och Uppsala kommun. Gäller från den 1 januari 2003 till och med 31 december 2005. Reviderad september 2002.

Social support buffers the negative impact of stressful events. Less, however, is known about the characteristics of this association in the context of disaster and findings have been discrepant regarding direct and buffering effects. This study tested whether the protective effects of social support differed across levels of exposure severity (i.e., buffered distress) and assessed whether the buffering effect differed between event-specific and general distress. Participants were 4,600 adult Swedish tourists (44% of invited; 55% women) repatriated within 3 weeks after the 2004 Indian Ocean tsunami. A survey 14 months after the disaster included the Crisis Support Scale, the Impact of Event Scale-Revised (IES-R), and the General Health Questionnaire (GHQ-12). Social support buffered the negative impact of exposure on both outcomes. The support and distress association ranged from very small in participants with low exposure to moderate in those with high exposure (η(p)(2) = .004 to .053). The buffering effect was not found to differ between the IES-R and GHQ-12, F(2, 4589) = 0.87, p = .42. The findings suggest that social support moderates the stressor-distress relationship after disasters. This study might help explain discrepant findings and point to refinements of postdisaster interventions.

BACKGROUND:
There is a significant gap between the demand for psychological therapy services and the available supply. One proposal to overcome this problem is to increase efficiency of provision through the adoption of briefer 'minimal interventions' within stepped care models.
AIMS:
To examine the theoretical underpinnings of stepped care, together with the practicalities of the adoption of this system of care.
METHOD:
Narrative literature review.
RESULTS:
The potential clinical and economic benefits of stepped care are dependent upon underlying assumptions of equivalence in terms of clinical outcomes, efficiency in terms of resource use and costs, and acceptability of 'minimal interventions' to patients and therapists. Illustrative studies of these issues are considered.
CONCLUSIONS:
Although psychological services might benefit from the adoption of the stepped care model, a substantial research agenda needs to be fulfilled before a judgement can be made as to whether stepped care might be an efficient method of delivering psychological services.

This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g., caregiver warmth, consistent discipline) 6 years after program completion. Families (n = 101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8 and 16 who had experienced the death of one parent were randomized to the FBP (n = 54) or a literature control condition (n = 47). Multiple regression analyses conducted within a multilevel framework indicated that the FBP had a significant positive impact on a multirater, multimeasure assessment of parenting at 6-year follow-up, controlling for pretest levels of parenting and child mental health problems. Mediation analyses showed that short-term program effects on parenting, including caregiver warmth and effective discipline, significantly mediated the impact of the FBP on effective parenting 6 years later. These findings indicate that a relatively cost-effective brief intervention for families who experienced a major stressor resulted in sustained effects on caregiver warmth and consistent discipline 6 years following the program.

In this study 165 Swedish parents of young children with Downs's syndrome (DS) were investigated regarding their perception of the quality of the first information and support received after the birth of the child. The parents' opinions were compared with clinical routines at the paediatric clinics regarding these issues. Strong clinical ambitions fell short, however, since 70 % of the parents felt insufficiently informed; 56 % felt unsupported, and the timing of the disclosure varied between 0 hour to >5 days. On the basis of a grounded theory analysis the parents' written narratives regarding the quality of the first information and support were analysed to better understand the reasons underlying the parental dissatisfaction. Criticisms were raised by the parents concerning: the low communication skills by professionals; the lack of privacy; too much negative information; and an unmet desire to early meet other DS parents. The implications of being DS parents regarding their daily life were examined by measuring parental health, stress, sense of coherence, employment and sick leave rates. Results were compared with those in a randomly selected group of parents of healthy age-matched children. The similarities between the DS and control parents were more pronounced than the differences regarding divorce rates, siblings in the family, time spent on child care, employment and sick leave rates, and their self-perceived health, stress, and sense of coherence. However, self-perceived health of the DS mothers was impaired and stress was increased. A small group of DS parents (5 mothers and 1 father) had an extremely high rate of sick leave and no such group was seen in the control parents. In addition, the DS mothers stayed at home because of the child's sickness most frequently and the DS fathers stayed at home for this reason more than control mothers.Conclusions: Existing guidelines for optimal first information and support of new parents of children with DS are not always followed in Sweden. Qualitative clinical improvements from the parents' perspective are proposed. Most DS parents live an ordinary family life in respect to the measured parameters, but the risk for health deterioration, particularly in DS mothers, might need attention

The goal of this chapter is to map the developmental trajectory of family therapy in family psychology intervention science (FT-FPIS) from its early roots to its current status. The authors also hope to provide a perspective on its developmental process with an eye toward future challenges. Four key elements in the developmental evolution of FT-FPIS are discussed: science, the theory and techniques of family therapy, core principles in basic psychology, and the broader cultural and sociopolitical contexts in which FT-FPIS has evolved. In addition, the emergence of family-based empirically supported treatments and family-based empirically supported treatment as an intervention science are discussed.

The PLUS Nursing Intervention, which is aimed at caregivers of elderly persons with depression and designed to increase caregiver personal resources, respond to caregiver learning/skill development needs, address caregiver unanticipated needs, and assist with caregiver stress/illness management, was pilot tested for efficacy. Thirteen families were assigned to the PLUS group and 12 families to the standard home care control group. There were no significant outcome differences between the two groups. However, caregivers who received the PLUS intervention made significantly more improvements over Standard Home Care caregivers when patients made functional improvements. Findings suggest that patient functioning might be a better predictor of long-term caregiver outcomes than psychiatric symptoms.

A narrative story-stem task was used to evaluate the efficacy of two competing, developmentally informed preventive interventions for maltreated preschoolers and their mothers designed to modify children's internal representations of self and of self in relation to other. One hundred and twenty-two mothers and their preschoolers (87 maltreated and 35 nonmaltreated) served as participants. Maltreating families were randomly assigned to either the preschooler-parent psychotherapy (PPP, n = 23), psychoeducational home visitation (PHV, n = 34), or community standard (CS, n = 30) intervention group at baseline. Thirty-five nonmaltreating (NC) families served as comparisons. Narratives were administered to children at baseline and at the postintervention evaluation. Children in the PPP intervention evidenced more of a decline in maladaptive maternal representations over time than PHV and CS children and displayed a greater decrease in negative self-representations than CS, PHV, and NC children. Also, the mother-child relationship expectations of PPP children became more positive over the course of the intervention, as compared to NC and PHV participants. These results suggest that an attachment-theory informed model of intervention (PPP) is more effective at improving representations of self and of caregivers than is a didactic model of intervention directed at parenting skills. Findings are discussed with respect to their implications for developmental theory, with a specific focus on attachment theory and internal working models of relationships.

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

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

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

Sammanfattningsvis kan man säga att LSS-boende, som uttrycks av
informanterna i den här studien, har varit positivt för den boende själv och alla
som kommit i kontakt med honom eller henne. Det är tydligt i informanternas
berättelser att de och deras anhöriga, i samband med att LSS-boendet blivit
verklighet, har fått till en förändring av hela den sociala kontext de levde och
lever i. Man kan sammanfatta LSS-boendets sociala och psykologiska effekter i
några konkreta punkter för de anhöriga respektive de boende:
15
De anhöriga
De anhöriga befrias från den oro för den boendes välmående och praktiska
omständigheter som präglade vardagslivet före LSS-boendet. Detta boende
medför alltså en högre grad av vardaglig trygghet. De anhöriga får också en
avlastning av den emotionella anspänning det innebär att ha en familjemedlem
som lider av psykisk ohälsa. Dessutom erhåller de ett delat ansvar för den
familjebörda det innebär att ha en familjemedlem som lider av psykisk ohälsa. De
blir också avlastade det sociala stigma det kan innebära att ha en familjemedlem
som har ett psykiskt funktionshinder.
De boende
Den boende erhåller en struktur i vardagslivet på LSS-boendet som saknades vid
det tidigare boendet. Här finns också möjlighet att få hjälp med den personliga
omvårdnaden och att upprätta relationer specialister av olika slag, bland annat
läkare som kan övervaka eventuell medicinering. Den boende blir också avlastad
det sociala stigma som tidigare präglade relationen till framförallt grannar och
fastighetsägare.
Den generella slutsats som kan dras i den här studien är att denna form av boende
erbjuder en förhöjd livskvalité för samtliga parter. Sammantaget verkar alltså
denna boendeform gynna den psykiska hälsan för alla och kan därmed sägas bidra
till att hela samhället på ett eller annat sätt gynnas.

Rapporten är ett resultat av ett forskningsprojekt om elever med flera funktionsnedsättningar i särskolan. Projektet belyser hur egenskaper hos barnet, egenskaper i barnets livsmiljöer samt de omgivande servicesystemen, samverkar och påverkar förutsättningar för barnets utveckling

Avhandling för doktorsexamen

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

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

Despite widespread recognition of the risks that parental drug use pose to children, few resources are available to help such children. Using a developmental intervention approach, the authors designed and tested a model curriculum for use with groups of latency-aged children in schools located in communities where drug use is pervasive. In implementing this curriculum, the authors documented the need that children affected by family drug use have for workable strategies and skills for coping with aversive environments. The responsiveness of group participants to structure, predictability, and affirmation in the groups was remarkable. Measurable changes occurred in classroom behavior and feelings of self-worth. Obstacles to implementing and testing such an intervention are discussed.

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

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

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

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

Riksförbundet för rörelsehindrade barn och ungdomar (RBU) vill med den här rapporten bidra till en bättre förståelse för familjer som har rörelsehindrade barn. Syftet är dels att familjer i liknande situationer skall få en insikt om att de inte är ensamma och dels att påverka politiker, tjänstemän samt vårdpersonal

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

Avhandling

Objective. This article was designed to give pediatricians a basic knowledge of the needs of children who live in families with alcoholism. It briefly presents issues involved in the identification and screening of such individuals and provides primary attention to a variety of preventive and treatment strategies that have been used with school children of alcoholics (COAs), along with evidence of their effectiveness.

Methodology. A literature search including both published and unpublished descriptions and evaluations of interventions with COAs.

Results. The scope and nature of the problems of growing up in an alcoholic home are presented. The risk and protective factors associated with this population have been used as a foundation for preventive and treatment interventions. The most common modality of prevention and intervention programs is the short-term small group format. Programs for COAs should include the basic components of information, problem- and emotion-focused coping skills, and social and emotional support. Physicians are in a unique position to identify and provide basic services and referrals for COAs. School settings are the most common intervention sites, but family and broad-based community programs also have shown promise in alcohol and other drug prevention.

Conclusions. Several COA interventions have demonstrated positive results with respect to a variety of measures including knowledge of program content, social support, coping skills, and emotional functioning. Rigorous studies are needed to understand better the complex ways children deal with parental alcoholism. A need remains for empirically sound evaluations and for the delineation of research findings.

This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.

The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.

More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'

The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.

This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.

The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.

More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'

The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.

Inom allt fler av välfärdsstatens kärnområden har samverkan blivit en nödvändighet för att myndigheter ska kunna fullgöra sina åtaganden gentemot allmänheten. Samverkan ställer nya krav på planering och ledning av verksamheterna – något som de inblandade aktörerna inte alltid är rustade för. Skillnader beträffande regelverk, kunskaps- och förklaringsmodeller samt organisationsprinciper leder ofta till problem i hanteringen av enskilda projekt. I denna bok beskrivs hur tre av välfärdens centrala aktörer, socialtjänsten, hälso- och sjukvården samt försäkringskassan har identifierat samverkansproblemen och hur de har lärt sig hantera och undanröja de problem som uppkommer i samverkanssituationen.

Boken vänder sig till utbildningar inom samhälls- och beteendevetenskap samt verksamma personer inom socialtjänst, vård och skola.

The death of a child's parent engenders many primary and secondary losses. In this article, a case study is used to examine secondary losses for two children following the sudden deaths of their parents. Childhood bereavement is described as comprised of prolonged pain, gradual acclimation, and tainted experiences. The framework is used to understand primary and secondary losses, as well as the effects of secondary losses and lack of control on the process of childhood bereavement. In this case, secondary losses, especially isolation, exacerbated the bereavement processes of these children. It is proposed that anticipating secondary losses, and minimizing them when possible, perhaps by providing bereaved children more control, is an appropriate framework for intervening with parentally bereaved children.

In a social and political climate which encourages active participation in decision-making by people who have severe and profound intellectual disabilities, the onus is often on practitioners, carers and advocates to represent the wishes and interests of individuals. The issue of the validity of their interpretations is then foregrounded. This paper discusses theoretical issues associated with the development of guidelines to support a process of validation. It is argued that meaning should be viewed as the negotiated outcome of interactions, always involving inference. Validity of interpretation is thus a continuous rather than a categorical variable, and needs to be supported by the systematic collection of evidence from a range of sources. This framework is compatible with a social constructivist view of communicative development, and allows for information derived from subjective, intuitive insights to be combined with information obtained through observation and testing.

As part of the psychiatric assessment after a suicide attempt contact with a significant other could be of importance in order to obtain an additional view of the patient's situation, and thereby possibly broadening the basis of the assessment. The aims of this study were to investigate whether information from a significant other would be helpful in the psychiatric assessment of the patient, and also in assessing the well-being of significant others and their need for support. For the purposes of the study, the significant other (SO) who had been recommended by the patient was contacted directly after the suicide attempt. Almost all the patients (95%) agreed to a social worker contacting an SO, and all the contacted SOs (n = 81) agreed to take part in the study. A semi-structured interview was performed by telephone or in person on the same occasion as we interviewed the patient or as soon as possible afterwards. The study found that the SOs provided valuable additional information regarding the patient's situation. When comparing the outcomes of the interviews with the SOs and those of the patients, problem areas such as loneliness and lack of self-confidence were mentioned more often by SOs. Also, more patients were reported to be repeaters by SOs, and suicidal signals from the patient had been apprehended by 41% of them. Fifty-seven percent of the SOs who had given psychological and/or practical support to the patient stated it was a burden to them, particularly if the patient had psychiatric disorders other than adjustment disorders. It was also found that more than half of the SOs wanted individual counselling and/or counselling together with the patient. This study stresses the value of co-operation with the SOs after a suicide attempt, both in the immediate assessment of the patient and in the planning of treatment strategies.

Leisure options were used to facilitate the communication development of a young child with severe multiple disabilities who used augmentative communication. The intervention consisted of selecting a number of leisure options through consultation with the child's mother and teacher about the child's leisure preferences and making available the leisure options at each intervention session. Twelve intervention sessions were carried out over a three month period. The results of this descriptive study showed that with the introduction of leisure options as part of intervention, the child demonstrated increased vocalisations, words and word approximations, communicative gestures and use of signs. The child also showed an increased desire to communicate. The findings indicate the usefulness and efficacy of leisure options as a potential intervention procedure in promoting the communication development of children with disabilities.

The aim of the study was to investigate the role of community mental health nurses in educating clients and families about schizophrenia. A random sample of community mental health nurses was surveyed using a postal questionnaire. Results showed that most nurses did not use a specific approach for education. Families were educated when clients were admitted to hospital and clients were included when they regained the ability to process information. All nurses provided practical advice to families coping with clients' unpredictable behaviours. The client's home was mostly used for education. Clients and families were often in denial of the illness. Time constraints restricted the nurses' role of providing education. Nurses reported that psycho-educational theories or models were not incorporated into their basic professional education. Nurses require the necessary knowledge, skills and confidence to competently perform this role

Background

Routine use of a brief psychosocial screening instrument has been proposed as a means of improving recognition, management, and referral of children's psychosocial morbidity in primary care.

Objective

To assess the feasibility of routine psychosocial screening using the Pediatric Symptom Checklist (PSC) in pediatrics by using a brief version of the check-list in a large sample representative of the full range of pediatric practice settings in the United States and Canada. We evaluated large-scale screening and the performance of the PSC in detecting psychosocial problems by (1) determining whether the prevalence of psychosocial dysfunction identified by the PSC was consistent with findings in previous, smaller samples; (2) assessing whether the prevalence of positive PSC screening scores varied by population subgroups; and (3) determining whether the PSC was completed by a significant proportion of parents from all subgroups and settings.

Patients and Methods

Twenty-one thousand sixty-five children between the ages of 4 and 15 years were seen in 2 large primary care networks: the Ambulatory Sentinel Practice Network and the Pediatric Research in Office Settings network, involving 395 pediatric and family practice clinicians in 44 states, Puerto Rico, and 4 Canadian provinces. Parents were asked to complete a brief questionnaire that included demographic information, history of mental health services, the 35-item PSC, and the number of pediatric visits within the past 6 months.

Results

The overall prevalence rates of psychosocial dys-function as measured by the PSC in school-aged and preschool-aged pediatric outpatients (13% and 10%, respectively) were nearly identical to the rates that had been reported in several smaller samples (12%–14% among school-aged children and 7%–14% among preschoolers). Consistent with previous findings, children from low-income families were twice as likely to be scored as dysfunctional on the PSC than were children from higher-income families. Similarly, children from single-parent as opposed to those from 2-parent families and children with a past history of mental health services showed an elevated risk of psychosocial impairment. The current study was the first to demonstrate a 50% increase in risk of impairment for male children. The overall rate of completed forms was 97%, well within an acceptable range, and at least 94% of the parents in each sociodemographic subgroup completed the PSC form.

Conclusions

Use of the PSC offers an approach to the recognition of psychosocial dysfunction that is sufficiently consistent across groups and locales to become part of comprehensive pediatric care in virtually all out-patient settings. In addition to its clinical utility, the consistency and widespread acceptability of the PSC make it well suited for the next generation of pediatric mental health services research, which can address whether earlier recognition of and intervention for psychosocial problems in pediatrics will lead to cost-effective outcomes.

Information till patienter och anhöriga om schizofreni. Boken bygger på personliga intervjuer med 17 föräldrar ur 10 familjer. Den består huvudsakligen av citat ur dessa intervjuer, med våra kommentarer som sammanbindande länkar.

This paper discusses the evaluation of childhood bereavement services in the UK policy context and some of the challenges this presents. Two key difficulties are discussed: the lack of any clear, agreed outcomes from bereavement interventions with children, and the challenge of evaluating the complex social processes that bereavement interventions involve. Two recommendations are made to address these in the short term and to generate data for wider research. These are: to strengthen services' existing evaluation strategies, and to develop a routine evaluation package that can be used by all services. This would comprise a basic data set, a user satisfaction questionnaire, and a childhood bereavementfocused clinical outcome routine evaluation measure. In the longer term, further research is recommended, including UK-based longitudinal studies.

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

Background: Psychiatric services have established children's representatives in an effort to support children of mentally ill patients.
Material: Twenty two specially designated children's representatives and 19 other staff members were asked how they conceived the role of children's representatives and if those representatives had the responsibility of identifying children of mentally ill patients.
Discussion: Children's representatives expressed difficulty in functioning as advocates for children whose parents were being treated for mental illness. Members of the psychiatric staff, although aware their patients had children, seldom met them since they focused on the adults.
Conclusions: More than one third of all patients seeking psychiatric care have children, yet children's representatives and other staff members seldom meet them.

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

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

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

Abstract
PURPOSE:

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients.
DESIGN AND METHODS:

Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services.
RESULTS:

Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers.
IMPLICATIONS:

Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Avhandling

This dissertatian i concerned with the ways in which caregivers within elderly care reason and respond to questions concerning ethnicity. The research is based on a discursive analysis of a focus group study; interwiews with caregivers; and participant observation from fieldwork within one elderly care team. The main ambition is to present an alternative model for understanding how ethnicity becomes important in relation to care. A primary purpose it to place elderly care within a new theoretical perspective, particularly by shifting the focus from ethnicity per se to the relational aspect of constructions of ethnicity. I do that by showing how the ethnic dimension often is located in language use, in the relations created by various discourses and their institutional conditions. By applying the concept of doing to the analysis of ethnicity, I can show how ethnicity is a product of social interaction rather than a pre-defined role or mode of being. To do ethnicity in the context of care giving is to be assigned and take discursively created subject positions through the constant interactions of the workplace. Through such an analysis it becomes possible to understand ethnicity and ethnic relations as a continuous process revolving around the conceptions of each other's identities. By employing doing ethnicity as an analytical tool, it becomes possible to understand how caregivers, sometimes unwittingly, use ethnicity as a marker for thier constructions of care.

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

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

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

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

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

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

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

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

Frågeställningar som berörs är bland andra:

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

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

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

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

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

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

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

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

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

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

The aim was to investigate collaboration between relatives of frail elderly patients and nurses in acute hospital wards, and to develop and test an instrument to investigate, from the relatives? perspective, dimensions of collaboration in this context and the association between collaboration and satisfaction with the hospital care trajectory. The underpinning assumption for the study was that relatives hold knowledge of the patients? situation, which is important for nurses to make a relevant and sufficient care plan. The first two studies were qualitative, investigating relatives? and nurses? experiences of the collaboration with each other. Eight relatives of elderly patients ³ 75 years of age, living at home and dependent on formal and informal help participated. Eight nurses (6 RN + 2 LPN) who conducted the discharge of the elderly patient participated in the second study. In the third study an instrument was developed for measuring collaboration, its prerequisites and outcomes from the relatives? perspective, and put through psychometric testing. In this study, and in the fourth study, which investigated the association between collaboration and satisfaction with the hospital care trajectory, 156 relatives of elderly patients participated. The context was acute medical and geriatric wards in two Danish hospitals. The lived experience of being a relative to a frail elderly patient revealed itself in two main essences: The history reflected the relationship and care history and was the frame of reference in which the hospital admission was interpreted and understood. The constituents were: The adult child, Parent for my mother, It is always in the back of my mind and A full time job. The essence Standing Guard encompassed the encounter with the hospital system and the constituents were: My God, is it now?, Powerless, If you relax, you fail, Watchdog and case manager and Those poor, poor people. The main theme in the interviews with nurses was Encountering relatives ? To be caught between ideals and practice and reflected that the nurses seemingly held two sets of conflicting attitudes towards relatives and the collaboration with them: One ideal and in accordance with their professional values, and another seemingly governing collaboration in practice. Themes were: The coincidental encounter ? the collaboration, which reflected that though ideally described as a structured process, collaboration appeared to be coincidental and rare; and Relatives ? a demanding resource. The sub themes were: Flee or fight ? the nurses? response, A matter of prioritising ? Barriers and promoters, The unwritten rules and The new relatives ? the demanding and unrealistic relatives. A model for collaboration was developed from literature and constituted the basis for development of instrument variables and items. In the factor analysis (PCA) five factors were extracted: ?Influence on decisions?, ?Quality of contact with nurses?, ?Trust and its prerequisites?, ?Achieved information level? and ?Influence on discharge?. The factor analysis supported the assumption that collaboration was a multi-dimensional construct characterised by shared decision-making and exchange of knowledge and information, with prerequisites such as quality of the contact and communication based on trust and respect. The instrument was mainly reliable and valid, although caution should be made due to the sample being small, and the design being cross sectional. Systematic dropout indicated that the study might have missed the most strained, the oldest and the least educated relatives. Further testing after a reduction of items as well as revising of the wording in some items is warranted. Dimensions of collaboration were predictors for the relatives? satisfaction with the hospital care trajectory, and lower ratings of collaboration were significantly associated with lower level of satisfaction. Further, powerlessness, guilt, having provided help less than one year and not providing psychosocial help were predictors for relatives? satisfaction with the hospital care trajectory. Whereas relatives rated poorly on influence on decisions and exchange of knowledge and information, the contact and relationship qualities with nurses were seemingly more satisfactory, although accessibility of nurses appeared to be a problem.

Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.

Introduction: The aim was to compare an urban and a rural old population regarding depression. Method: A population-based, cross-sectional study in five depopulated areas and one expanding urban city in northern Sweden. Participants aged 85 and above were evaluated for depression. Data were collected from structured interviews and assessments and from relatives, caregivers and medical charts. Depression was screened for using the Geriatric Depression Scale-15 (GDS-15) and evaluated by the Montgomery-Åsberg Depression Rating Scale (MADRS). Results: In total, 29% of the 363 participants were depressed (34% in the rural municipality and 27% in the urban municipality). Fifty-one percent versus 69% were receiving treatment with antidepressants. In the rural areas, those with depression were less frequently treated with selective serotonin reuptake inhibitor (SSRI) medications (36% versus 65%; p = 0.004), instead there were participants treated with Tri Cyclic Antidepressant's (TCA's) (10%, versus 0%; p = 0.0018). A larger proportion of the participants in the urban sample had responded to treatment (59% versus 27%; p = 0.175). Conclusion: Depression in old age appears to be a common cause of emotional suffering among the oldest old. In the rural areas, depression was more often inadequately treated and it was also treated with inappropriate medications.

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

Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Barn som också har stora frågor, hemliga tankar och starka känslor. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda?

Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor. Som läsare får man konkreta råd och tips om tekniker, lekar och övningar som hjälper barnen att formulera sina tankar och att uppnå en bättre självkänsla. Vi får också möta tre barn som går i barnterapi. De lär oss något om vad barn med funktionshinder möter i sina liv.

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

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

Abstract The Individuals with Disabilities Education Act (IDEA) mandates parent-professional
collaboration. But difficulties between parent and professional collaboration seem to persist.
These difficulties do not seem to be related to a lack of mutual respect or lack of good intentions.
Perhaps difficulties exist because of a lack of common ground. Professionals' thinking is
grounded in theory from personnel preparation and on-the-job experiences. Parents' thinking is
grounded in personal experiences and information from professionals, other parents, technology,
and media. This article describes a mother's and father's experiences over the past 25 years in a
variety of settings as the parents of a child with severe disabilities and as special education professionals.
They present their experiences in special education as parents and provide suggestions
for parents and professionals to develop an effective collaborative relationship

Äldreforskning

Akademisk avhandling

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

Traumatic brain injury can interrupt without warning the life story that any one of us is in the midst of creating. When the author's fifteen-year-old son survives a terrible car crash in spite of massive trauma to his brain, she and her family know only that his story has not ended. Their efforts, Erik's own efforts, and those of everyone who helps bring him from deep coma to new life make up a moving and inspiring story for us all, one that invites us to reconsider the very nature of "self" and selfhood.

Ruthann Knechel Johansen, who teaches literature and narrative theory, is a particularly eloquent witness to the silent space in which her son, confronted with life-shattering injury and surrounded by conflicting narratives about his viability, is somehow reborn. She describes the time of crisis and medical intervention as an hour-by-hour struggle to communicate with the medical world on the one hand and the everyday world of family and friends on the other. None of them knows how much, or even whether, they can communicate with the wounded child who is lost from himself and everything he knew. Through this experience of utter disintegration, Johansen comes to realize that self-identity is molded and sustained by stories.

As Erik regains movement and consciousness, his parents, younger sister, doctors, therapists, educators, and friends all contribute to a web of language and narrative that gradually enables his body, mind, and feelings to make sense of their reacquired functions. Like those who know and love him, the young man feels intense grief and anger for the loss of the self he was before the accident, yet he is the first to see continuity where they see only change. The story is breathtaking, because we become involved in the pain and suspense and faith that accompany every birth. Medical and rehabilitation professionals, social workers, psychotherapists, students of narrative, and anyone who has faced life's trauma will find hope in this meditation on selfhood: out of the shambles of profound brain injury and coma can arise fruitful lives and deepened relationships.

OBJECTIVE:
To investigate the relationships between characteristics of the living situation in the community and subjective quality of life and social network among community-based individuals with schizophrenia.
METHOD:
A total of 418 individuals with schizophrenia from 10 sites were interviewed with regard to quality of life, psychopathology, social network and needs for care. Characteristics of the living situation investigated were: living alone or not, living with family or not, and having an independent or a sheltered housing situation.
RESULTS:
An independent housing situation was related to a better quality of life concerning living situation and living with the family to a better quality of life concerning family relations. An independent housing situation was associated with a better social network regarding availability and adequacy of emotional relations.
CONCLUSION:
People with schizophrenia with an independent housing situation have a better quality of life associated with more favorable perceptions of independence, influence, and privacy. Their social network is better irrespective of whether they live alone or not, or with family or not

Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.

Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.

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

Mothers with learning difficulties1 are thought to be among the most socially isolated parents in the community. A great deal of attention has been directed to assessing their parenting abilities and teaching parenting skills, but less has been given to the support that mothers may (or may not) receive from family, friends and the service system. The present paper investigates mothers' views about the types of support which they receive and from whom they receive it. Data were derived from 70 mothers who participated in interviews using a support interview guide designed to accommodate the mothers' cognitive difficulties. The primary purpose of the interview was to explore the quantity and composition of the mothers' support networks, the frequency of contact and geographical proximity of support people, and the type of support provided. Key findings include: the central place that family members have in these mothers' lives; the importance of service providers as sources of information and advice; and the relative absence of friends and neighbours. Briefly, mothers living alone have service-centred networks, mothers living with a partner have family-centred networks with relatively dispersed family ties, and mothers living in a parent/parent-figure household have local, family-centred networks. The overall conclusion to be drawn from the present results is that these mothers do not live in a social vacuum, but many are socially isolated. The finding that so few mothers could identify supportive ties with friends and neighbours suggests that these mothers are isolated from their local communities and are potentially vulnerable if a breakdown occurs in the support provided by their families. The need for service providers to be more actively involved in linking mothers to their communities is discussed.

Since the initial publication of this breakthrough work, Motivational Interviewing (MI) has been used by countless clinicians. Theory and methods have evolved apace, reflecting new knowledge on the process of behavior change, a growing body of outcome research, and the development of new applications within and beyond the addictions field. Extensively rewritten, this revised and expanded second edition now brings MI practitioners and trainees fully up to date. William R. Miller and Stephen Rollnick explain how to work through ambivalence to facilitate change, present detailed guidelines for using their approach, and reflect on the process of learning MI. Chapters contributed by other leading experts then address such special topics as MI and the stages-of-change model, applications in medical, public health, and criminal justice settings, and using the approach with groups, couples, and adolescents.

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.

10 % av alla barn kommer från hem där den ena föräldern missbrukar eller har missbrukat alkohol. Det är 150 000 glömda barn, som först på senare år börjat uppmärksammas. Erfarenheter visar att arbete i grupp ger goda möjligheter att framgångsrikt möta de här barnens behov. Handbok med arbetsblad.

In the context of parents caring at home for an adult child with mental illness, this study explored the positive aspects and rewards of caregiving. Specifically, it measured the extent to which parents perceive their ill child as providing assistance and support--practical and emotional--and perceive their own caregiving as emotionally and mentally rewarding. One parent from each of 93 households completed a self-administered questionnaire. All the parents reported receiving help and support from their child, but perceived the satisfaction gained from fulfilling their parental duties and from learning about themselves as far more important. Their assessment of this satisfaction was entirely unaffected by the subjective and objective burdens on them and the severity of the child's illness.

I boken ges kunskaper om vad kognitiva störningar är, hur de yttrar sig i vardagen och hur man skall bemöta och stödja individen. Boken vänder sig till alla som i sin dagliga verksamhet har till uppgift att lämna stöd, service, och vård till psykiskt funktionshindrade. Det kan vara personliga ombud, vårdpersonal, boendestödjare, personal vid daglig verksamhet och liknande.
Politiker och beslutsfattare inom skilda verksamhetsområden som har ansvar för att fatta beslut som ofta kan vara av livsavgörande betydelse för individen, kommer att ha nytta av boken.

Autism, a chronic condition that develops in early childhood, is characterized by a marked impairment in the ability to relate to others, delayed language, and restricted patterns of behavior. The disorder affects as many as 20 children per 10,000.1
In addition to core symptoms, children with autism frequently have serious behavioral disturbances, such as self-injurious behavior, aggression, and tantrums in response to routine environmental demands.2 These behavioral problems interfere with rehabilitative efforts and pose enormous challenges to parents and educators. Although behavior therapy may reduce aggression and self-injury, it tends to be highly individualized and has not been evaluated in randomized clinical trials.3 Attempts to treat autism with several medications in various chemical classes have had limited success.4 To date, only haloperidol, a potent postsynaptic dopamine-receptor antagonist, has been shown in more than one study to be superior to placebo for the treatment of serious behavioral problems.5,6 However, many clinicians avoid using haloperidol in children because of concern about its short- and long-term side effects.7
Unlike haloperidol, atypical antipsychotic agents block postsynaptic serotonin receptors. The affinity of these agents for serotonin receptors may enhance their efficacy and provide protection against extrapyramidal symptoms.8 Alternatively, atypical antipsychotic agents may be more easily displaced by endogenous dopamine, which reduces the risk of neurologic side effects.9 Given the lower frequency of extrapyramidal symptoms with atypical antipsychotic agents and their reported efficacy for treating both positive and negative symptoms in adults with schizophrenia, there is great interest in the question of whether these agents are beneficial in children with developmental disorders.10 To date, only one placebo-controlled study of risperidone in adults with autism and a handful of open-label studies in children with pervasive developmental disorders have been reported.11-13 We conducted a multisite study to evaluate the efficacy and safety of risperidone in children with autism accompanied by serious behavioral disturbances.
METHODS
Subjects
The first phase of the study was an eight-week, double-blind, randomized, placebo-controlled trial of risperidone (Risperdal, Janssen) conducted by the Autism Network of the Research Units on Pediatric Psychopharmacology between June 1999 and April 2001. At the end of the double-blind phase, children in the placebo group who had had no improvement in their behavior were offered open-label treatment with risperidone, as were children in the risperidone group who met the predetermined criteria for a positive response. Open-label treatment was given for four months, followed by a two-month, placebo-controlled discontinuation phase, as described elsewhere.14 The study sites included the University of California at Los Angeles, Ohio State University, Indiana University, Yale University, and the Kennedy Krieger Institute at Johns Hopkins University. The protocol was approved by the institutional review board at each site, and written informed consent was obtained from a parent or guardian before enrollment. Safety and adherence to the protocol were monitored through weekly conference calls, annual site visits by investigators at the coordinating center (Yale University), and quarterly reviews by the data and safety monitoring board convened by the National Institute of Mental Health.
All children met the criteria for autistic disorder described in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition,15 with tantrums, aggression, self-injurious behavior, or a combination of these problems. Other enrollment criteria included an age of 5 to 17 years, a weight of at least 15 kg, and a mental age of at least 18 months. The children had to be free of serious medical disorders and of other psychiatric disorders requiring medication. We reviewed each child's past and current treatments for autism. In consultation with parents, children receiving a psychotropic drug that was deemed effective for the treatment of aggression, tantrums, or self-injurious behavior were excluded. Ineffective medications were gradually withdrawn, and a drug-free interval of 7 to 28 days, depending on the drug, was required before enrollment. Treatment with an anticonvulsant agent for seizure control was allowed if the dose had been unchanged for at least four weeks and if there had been no seizures for at least six months.
Base-Line Assessment and Outcome Measures
The diagnosis of autistic disorder was corroborated by the Autism Diagnostic Interview — Revised. This semistructured interview was administered by a clinician with special training and systematic review to ensure reliability.16 Screening also included intelligence testing; administration of the Vineland Adaptive Behavior Scales (the population mean [±SD] for each scale is 100±15; higher scores indicate more adaptive behavior)17; routine laboratory tests; electrocardiography; measurement of height, weight, and vital signs; medical history taking; and physical examination. The child's race was reported by the parent or primary caretaker. Clinically significant behavioral problems were defined by a rating of moderate or higher on the Clinical Global Impressions — Severity (CGI-S) scale, as determined by a clinician,18 and by a score of 18 or higher on the Irritability subscale of the Aberrant Behavior Checklist, as rated by the parent (or primary caretaker) and confirmed by a clinician. The 15-item Irritability subscale includes questions about aggression, self-injury, tantrums, agitation, and unstable mood on a scale of 0 to 45, with higher scores indicating greater severity. Data from studies of developmentally disabled children indicate that a score of 18 is 1.3 to 1.5 SD above the population mean, depending on the age and sex of the child.19,20 To exclude children whose symptoms might improve in response to nonspecific clinical contact, the children were reassessed at base line, 7 to 14 days after the initial assessment. Only children who met the inclusion criteria for the CGI-S scale (according to an experienced clinician) and the score on the Irritability subscale (based on the parent's or primary caretaker's rating) at base line as well as at the time of screening were eligible for randomization. The Irritability scores obtained at this second evaluation were used as base-line values.
Each child was seen weekly by two clinicians who were unaware of the treatment assignment: a primary clinician, who reviewed side effects and adjusted the dose of medication, and a clinical evaluator, who assessed the response to treatment. The primary outcome measures were the score at eight weeks on the Irritability subscale of the Aberrant Behavior Checklist, based on the parent's or primary caretaker's rating, and the rating on the Clinical Global Impressions — Improvement (CGI-I) scale, as determined by the clinical evaluator. Children who had at least a 25 percent reduction in the Irritability score and a rating of much improved or very much improved on the CGI-I scale were considered to have a positive response.
Other outcomes were scores on the other subscales of the Aberrant Behavior Checklist (Social Withdrawal, Stereotypy, Hyperactivity, and Inappropriate Speech), based on ratings by the parent or primary caretaker. At base line, the parent or primary caretaker was interviewed to identify the target symptoms and to rate compulsive behavior according to the Children's Yale–Brown Obsessive Compulsive Scale. These semistructured interviews were used in determining the score on the CGI-I scale at subsequent visits, as described in detail elsewhere.21
Medication Schedule
For children who weighed 20 to 45 kg, risperidone was given at an initial dose of 0.5 mg at bedtime and was increased to 0.5 mg twice daily on day 4. The dose was gradually increased in 0.5-mg increments to a maximum of 2.5 mg per day (1.0 mg in the morning and 1.5 mg at bedtime) by day 29. A slightly accelerated dose schedule was used for children who weighed more than 45 kg, with a maximal dose of 1.5 mg in the morning and 2.0 mg at bedtime. For children who weighed less than 20 kg, the initial dose was 0.25 mg per day. Scheduled dose increases could be delayed because of adverse effects or because of marked improvement at a lower dose. Dose reductions to manage side effects were allowed at any time, but there were no dose increases after day 29.
Monitoring for Safety
Laboratory tests, electrocardiographic studies, and physical examination were repeated at eight weeks; weight and vital signs were assessed weekly. At each visit, the primary clinician inquired about health problems, intercurrent illness, and concomitant medications and administered a 32-item questionnaire concerning energy level, muscle stiffness, motor restlessness, bowel and bladder habits, sleep, and appetite. Neurologic side effects were assessed weekly with the use of the Simpson–Angus scale22 and the Abnormal Involuntary Movement Scale.18 Adverse events noted as a result of any of these methods were documented with respect to severity, duration, management, and outcome.
Statistical Analysis
Data were analyzed according to the intention-to-treat principle. Statistical tests were two-tailed. P values of 0.05 or less were considered to indicate statistical significance, except for the analysis of adverse events (P<0.10) and analyses adjusted for multiple comparisons (the Bonferroni method). The biweekly scores on the Irritability subscale were analyzed with the use of mixed-effects linear models in which the study group and site were the fixed effects and the outcome and time were the random effects.23 The mixed-effects approach makes full use of available data and allowed us to combine subject-specific scores on the Irritability subscale in order to estimate the slope of the regression line for each group over time. A strong downward trend in Irritability scores in the risperidone group, as compared with the placebo group, would indicate a statistically significant interaction between treatment and time. Interactions with the site that were not significant were removed from the final model. The parameters of the mixed-effects model were estimated with the use of SAS Proc Mixed software.24
To compare our results with those of other trials and to estimate the likelihood of a response to risperidone in other patients with similar problems, we conducted two additional analyses. First, using our previously stated definition of a treatment response, we compared the rate of positive responses in each study group with the use of the chi-square test. Second, we calculated the size of the effect (the change from base line at eight weeks) for each scale of the Aberrant Behavior Checklist.
Differences in adverse events were tested by the chi-square test or Fisher's exact test when subgroups contained fewer than five children. Continuous variables were assessed with the use of the regression model described above.
RESULTS
Base-Line Characteristics
Of the 270 children who were screened for the study, 112 did not meet the criteria for enrollment, the parents or guardians of 57 children declined participation. The remaining 101 children (82 boys and 19 girls) were enrolled and randomly assigned to receive risperidone (49 children) or placebo (52). We subsequently identified four children who did not meet the entry criteria because their Irritability subscale had fallen below the threshold of 18 at base line. An analysis of the Irritability data that excluded these four children had results that were virtually identical to those with the full sample. Thus, the intention-to-treat analysis included all 101 children.
The children ranged in age from 5 to 17 years (mean [±SD], 8.8±2.7); 87 percent (88 children) were prepubertal; 66 percent (67) were white, 11 percent (11) were black, 7 percent (7) were Hispanic, 8 percent (8) were Asian, and 8 percent (8) were members of other racial or ethnic groups; and 91 percent (92) lived at home with at least one parent. The two groups were similar at base line with respect to a range of demographic, developmental, and clinical characteristics, including mean scores on the Aberrant Behavior Checklist subscales, with the exception of the score on the Inappropriate-Speech subscale, which was higher in the placebo group than in the risperidone group

Primary Outcome
Analysis of the scores on the Irritability subscale revealed a significant interaction between the study group and time (P<0.001) (Figure 1FIGURE 1
Mean Scores for Irritability in the Risperidone and Placebo Groups during the Eight-Week Trial.
). After eight weeks of treatment, the risperidone group had a 56.9 percent decrease in the mean Irritability score (from 26.2±7.9 at base line to 11.3±7.4 at eight weeks), as compared with a 14.1 percent decrease in the placebo group (from 25.5±6.6 to 21.9±9.5, P<0.001) (Table 2TABLE 2
Scores on the Aberrant Behavior Checklist at Base Line and Eight Weeks.
). The rate of a positive response (at least a 25 percent improvement in the score on the Irritability subscale and a rating of much improved or very much improved on the CGI-I scale) was 69 percent in the risperidone group (34 of the 49 children had a positive response) and 12 percent in the placebo group (6 of 52, P<0.001).
These gains in the risperidone group were maintained for six months in 23 of the 34 children (68 percent) who had had positive responses in the double-blind phase of the study. Of the other 11 children who had positive responses with risperidone, 2 did not enter the extension phase of the study because the family moved and 2 because the parents decided to evaluate the children's behavior in the absence of medication. During the extension phase, the parents of two children decided to seek other treatment in addition to risperidone; four children were withdrawn because the treatment was no longer effective, and one child was withdrawn because of an unrelated medical problem.
Secondary Outcomes
Table 2 shows the mean base-line and end-point scores, as well as the effect size, for all the subscales of the Aberrant Behavior Checklist in each study group. After correction for multiple comparisons, there was a significant interaction between the study group and time for scores on the Stereotypy and Hyperactivity subscales, suggesting that risperidone improved behavior in these areas as well. Scores for Social Withdrawal and Inappropriate Speech did not differ significantly between the two groups (after Bonferroni correction).
The rate of improvement over time is shown in Figure 2FIGURE 2
Percentage of Children with a Rating of Much Improved or Very Much Improved on the Clinical Global Impressions — Improvement Scale during the Eight-Week Trial.
. The proportion of children whose behavior was rated as much improved or very much improved on the CGI-I scale differed by 44 percent between the study groups at week 4 (P<0.001) and by 64 percent at week 8 (P<0.001).
Medication Dose
The mean daily dose of risperidone during the final week of the study was 1.8±0.7 mg (range, 0.5 to 3.5). The mean dose of placebo dispensed was equivalent to 2.4±0.6 mg per day (range, 1.0 to 3.5; P<0.001).
Adverse Events
There was a significantly greater mean increase in weight in the risperidone group (2.7±2.9 kg) than in the placebo group (0.8±2.2 kg, P<0.001) (Table 3TABLE 3
Adverse Events Reported during the Eight-Week Trial.
). The weight gain in the risperidone group was associated with a mild increase in appetite (in 49 percent of children) or a moderate increase in appetite (in 24 percent), as reported by the parent or primary caretaker (P=0.03 and P=0.01, respectively, for the comparison with the placebo group).
Sixty different adverse events were recorded during the trial, 29 of which occurred in 5 percent or more of the children (Table 3). There were no serious adverse events in the risperidone group, and no children were withdrawn from the study because of an adverse event. Most adverse events were mild and self-limited. For example, 23 children (47 percent) in the risperidone group had mild fatigue, but only 6 (12 percent) had moderate fatigue. In most cases, the fatigue had subsided by week 6. Similarly, of the 24 children in the risperidone group described as drowsy by their parents or primary caretakers, 16 were considered to be mildly drowsy, and they were no longer drowsy by week 4.
Weekly assessment with the Abnormal Involuntary Movement Scale and the Simpson–Angus scale showed no extrapyramidal symptoms in either group. Parents or caretakers reported five neurologic side effects: tremor, dyskinesia, rigidity, akathisia, and difficulty swallowing. Of these, tremor was significantly more common in the risperidone group (P=0.06). One child in each group had a value for serum glutamic-oxaloacetic transaminase that was more than twice the upper limit of the normal range at eight weeks, and one child in the placebo group had an elevated serum glutamic-pyruvic transaminase level. One child in the placebo group had a nonspecific, clinically insignificant change in cardiac conduction. The pulse, blood pressure, and results of routine laboratory tests did not differ significantly between the two groups. Eighteen children (8 in the risperidone group and 10 in the placebo group) had fever in association with a documented, time-limited illness.
Withdrawal from the Study
Three children in the risperidone group were withdrawn from the study because the treatment was not effective. One child in the placebo group was withdrawn because of a severe headache and a seizure attributed to the failure of a ventriculoatrial shunt. An additional 17 children in the placebo group did not complete the study for the following reasons: withdrawal of consent (1 child), nonadherence (1), loss to follow-up (3), and lack of efficacy (12). The rate of withdrawal was 35 percent (18 of 52 children) in the placebo group, as compared with 6 percent (3 of 49) in the risperidone group (P=0.001).
DISCUSSION
In this trial, risperidone was safe and effective for the short-term treatment of tantrums, aggression, and self-injurious behavior in children with autistic disorder. Improvements were also observed in stereotypic behavior and hyperactivity. Scores on the Social Withdrawal subscale, which rates social isolation and interest in communicating with others, did not differ significantly between the risperidone and placebo groups. Adverse effects such as weight gain, increased appetite, fatigue, drowsiness, dizziness, drooling, tremor, and constipation were more common in the risperidone group. Most of these adverse effects were mild and resolved within a few weeks. Thus, the risk–benefit ratio for risperidone therapy appears to be favorable.
Our findings confirm the results of small, open-label trials of risperidone in children with autism or another pervasive developmental disorder.4 The benefits of risperidone in our study exceeded the improvements observed in a recent controlled study involving 38 adolescents with mental retardation and explosive behavior.25 In our study, there was a difference of 43 percentage points between the risperidone and placebo groups in the change from the base-line score on the Irritability subscale, whereas studies of haloperidol for the treatment of autism showed a difference of 15 to 20 percent between the placebo and active-treatment groups, depending on the measure.5 Our findings with respect to the rate and severity of adverse effects also differ from previous findings. Excessive sedation was reported in 78 percent of children who received haloperidol,6 as compared with generally mild sedation in 59 percent of the children in our study who received risperidone. An acute dystonic reaction occurred in 25 percent of haloperidol-treated patients6 but in none of the children in our trial who received risperidone. Although parents or primary caretakers reported tremor in a few of the children treated with risperidone, weekly neurologic assessments showed no abnormalities. The low risk of extrapyramidal symptoms in our study is consistent with the results of studies in adults.8 Nonetheless, the adverse events observed in our study and the lack of a clear benefit with regard to core symptoms of autism indicate that risperidone should be reserved for treatment of moderate-to-severe behavioral problems associated with autism.
There are several limitations to this study. First, the observation period was only eight weeks long. However, a majority of the children who were classified as having a positive response during the double-blind phase of the study (23 of 34) continued to show benefit at six months. Second, the study included only children with autistic disorder. It is not clear whether our findings can be generalized to children with other forms of pervasive developmental disorder. Third, although the mean doses of risperidone used in this study were not high, the study could not identify the minimal effective dose. Finally, we focused on specific behavioral problems rather than on the core symptoms of autism. Indeed, when designing the study, we were unable to identify a validated measure for the core symptoms of autism that was suitable for repeated administration. Our focus on severe behavioral problems leaves unanswered the question of whether pharmacologic therapy and behavioral treatment could have additive effects.

Behovet av samverkan mellan kommuner och landsting har blivit allt tydligare. Ur den enskildes perspektiv är det viktigt att metoder för samordnad planering utvecklas samt att en god kvalitet säkerställs. Verksamheter har också utvecklats med utgångspunkt från brukarnas samlade behov. Med denna proposition vill regeringen stödja och stimulera en fortsatt kvalitetsutveckling av samverkan på vård- och omsorgsområdet. Inriktningen är att utöka landstingens och kommunernas befogenheter att utforma arbetet utifrån de lokala förutsättningarna. Kommuner och landsting skall därför genom en ny lag ges möjlighet att samverka i en gemensam nämnd för att gemensamt fullgöra uppgifter inom vård- och omsorgsområdet. Lagändringarna föreslås träda i kraft den 1 juli 2003.

The establishment of an initial request lexicon is often targeted when introducing augmentative and alternative communication systems to beginning communicators. For many of these individuals, graphic symbols provide an effective way to communicate requests to others. Because there are literally dozens of graphic symbol sets and systems to choose from, interventionists face the dilemma of selecting those that are deemed appropriate. This article integrates theory and research concerning the selection of graphic symbols for an initial request lexicon. Directions for further research are articulated, and, when the evidence permits, suggestions for clinical practice are offered.

The establishment of an initial request lexicon is often targeted when introducing augmentative and alternative communication systems to beginning communicators. For many of these individuals, graphic symbols provide an effective way to communicate requests to others. Because there are literally dozens of graphic symbol sets and systems to choose from, interventionists face the dilemma of selecting those that are deemed appropriate. This article integrates theory and research concerning the selection of graphic symbols for an initial request lexicon. Directions for further research are articulated, and, when the evidence permits, suggestions for clinical practice are offered.

Ett omfattande arbete har utförts i landets kommuner sedan slutet av 1990-talet för att utveckla stödet till anhöriga. I maj 2009 beslutade riksdagen att kommunerna ska "erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en närstående som har funktionshinder."

Studiens syfte är att kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp och utvärderas inom äldre-, funktionshinder- och individ- och familjeområdet samt samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom området. I kartläggningen ingår även att undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga.

I undersökningen kartläggs och följs stödet till anhöriga under tre år i åtta kommuner. De studerade kommunerna är Borås, Härjedalen, Hässleholm, Malmö, Skara, Strängnäs, Uppsala och Västervik. I rapporten presenteras resultatet av kartläggningen för år 2010.

Rapporten är ett samarbete mellan FoU Sjuhärad Välfärd, FoU-stöd Regionförbundet Uppsala län, Fokus Kalmar län, FoU i Sörmland, Kommunförbundet Skåne, Malmö stad, Skaraborgs kommunalförbund, FoU Jämt, Nationellt kompetenscentrum anhöriga.

I den nya handboken om stöd till barn och unga med funktionsnedsättning får du som handläggare och personal svar på frågor om hur stödet kan utformas.

Hur gör du som LSS handläggare när det ser ut som att lag och verklighet inte går ihop? Vad får föräldrar respektive personalen bestämma och vad får den unge själv bestämma i ett boende? Vad har kommunen för ansvar för planering och uppföljning?

Viktigt att tänka förebyggande
I boken får du exempel på olika stöd som kan ges till barn och familjer. Här framhålls vikten av att tänka förebyggande och vilka risker det kan innebära när familjer inte får tillräckligt stöd. Du som handläggare får också information om vad en personkretsbedömning omfattar och hur barn kan bli delaktiga i handläggningsprocessen.

Stöd för att orka med sitt föräldraskap
– Även om inte LSS ska kompensera för bristande föräldraförmåga, kan LSS-insatserna verka förebyggande så att föräldrarna orkar med sitt föräldraskap. Föräldrarna till ett barn som till exempel behöver vändas flera gånger om natten kan både bli uttröttade och tappa tålamodet. Genom att bevilja avlösning på ett sätt som passar föräldrarna ökar förutsättningarna för att de ska orka med situationen och få utrymme även för syskon och egna intressen, säger projektledaren Ylva Branting.

Viktigt stöd i olika åldrar
Du som förestår eller jobbar på ett boende får exempel på vilka behov omvårdnaden är tänkt att tillgodose. Här görs en koppling till barnens utveckling och vad som är viktigt stöd i olika åldrar. I boendet ställs många frågor på sin spets, till exempel hur en bra bostad bör utformas fysiskt och vad av vårdnadshavarens ansvar som kan tas över av personal. Många av dessa frågor är också aktuella i samband med andra stödformer.

Grund i lagstiftning och forskning
Handboken bygger på lagstiftning, förarbeten, konventioner och rättsfall samt Socialstyrelsens föreskrifter och allmänna råd. Men vissa delar bygger också på källor från psykologisk och pedagogisk forskning.

I den nya handboken om stöd till barn och unga med funktionsnedsättning får du som handläggare och personal svar på frågor om hur stödet kan utformas.

Hur gör du som LSS handläggare när det ser ut som att lag och verklighet inte går ihop? Vad får föräldrar respektive personalen bestämma och vad får den unge själv bestämma i ett boende? Vad har kommunen för ansvar för planering och uppföljning?

Viktigt att tänka förebyggande
I boken får du exempel på olika stöd som kan ges till barn och familjer. Här framhålls vikten av att tänka förebyggande och vilka risker det kan innebära när familjer inte får tillräckligt stöd. Du som handläggare får också information om vad en personkretsbedömning omfattar och hur barn kan bli delaktiga i handläggningsprocessen.

Stöd för att orka med sitt föräldraskap
– Även om inte LSS ska kompensera för bristande föräldraförmåga, kan LSS-insatserna verka förebyggande så att föräldrarna orkar med sitt föräldraskap. Föräldrarna till ett barn som till exempel behöver vändas flera gånger om natten kan både bli uttröttade och tappa tålamodet. Genom att bevilja avlösning på ett sätt som passar föräldrarna ökar förutsättningarna för att de ska orka med situationen och få utrymme även för syskon och egna intressen, säger projektledaren Ylva Branting.

Viktigt stöd i olika åldrar
Du som förestår eller jobbar på ett boende får exempel på vilka behov omvårdnaden är tänkt att tillgodose. Här görs en koppling till barnens utveckling och vad som är viktigt stöd i olika åldrar. I boendet ställs många frågor på sin spets, till exempel hur en bra bostad bör utformas fysiskt och vad av vårdnadshavarens ansvar som kan tas över av personal. Många av dessa frågor är också aktuella i samband med andra stödformer.

Grund i lagstiftning och forskning
Handboken bygger på lagstiftning, förarbeten, konventioner och rättsfall samt Socialstyrelsens föreskrifter och allmänna råd. Men vissa delar bygger också på källor från psykologisk och pedagogisk forskning.

Drawing on the results of community-based research with a local hospice organisation, this article addresses the need to enhance social support for caregivers of people with life-threatening illnesses. The goal of the research was to involve palliative care stakeholders in the identification, prioritisation and implementation of social support interventions for caregivers who provide palliative care support as hospice volunteers and as family members of those at end-of-life. Guided by a community-based participatory research approach, primary data were collected from 39 volunteer and family member caregivers through four focus groups and nine personal diaries in July 2008. Content analysis and modified constant comparison techniques resulted in emergent themes and priorities relating to challenges, existing coping strategies and resources, and potential support interventions. The findings revealed communication, emotional support, education, advocacy and personal fatigue as the most important challenges to be addressed through support interventions at the organisational (professional support, volunteer mentoring and continuing education) and household levels (caregiver assessments, telephone support and follow-up). There was convergence in how caregivers perceived and access existing social supports, yet a crucial divergence in the availability of resources among volunteers and family members. The findings are discussed in the light of the capacity for hospices to implement social supports and the potential efficacy of the community-based participatory research approach for enhancing social support for caregivers in other parts of health-care and social care.

Children with complex communication needs (CCN) resulting from autism spectrum disorders, cerebral palsy, Down syndrome and other disabilities are severely restricted in their participation in educational, vocational, family, and community environments. There is a substantial body of research that demonstrates convincingly that children with CCN derive substantial benefits from augmentative and alternative communication (AAC) in their development of communication, language and literacy skills, with no risk to their speech development. Future research must address two significant challenges in order to maximize outcomes for children with CCN: (1) investigating how to improve the design of AAC apps/technologies so as to better meet the breadth of communication needs for the diverse population of children with CCN; and (2) ensuring the effective translation of these evidence-based AAC interventions to the everyday lives of children with CCN so that the possible becomes the probable. This article considers each of these challenges in turn, summarizing the state of the science as well as directions for future research and development. © 2012 Copyright 2012 RESNA.

Children with complex communication needs (CCN) resulting from autism spectrum disorders, cerebral palsy, Down syndrome and other disabilities are severely restricted in their participation in educational, vocational, family, and community environments. There is a substantial body of research that demonstrates convincingly that children with CCN derive substantial benefits from augmentative and alternative communication (AAC) in their development of communication, language and literacy skills, with no risk to their speech development. Future research must address two significant challenges in order to maximize outcomes for children with CCN: (1) investigating how to improve the design of AAC apps/technologies so as to better meet the breadth of communication needs for the diverse population of children with CCN; and (2) ensuring the effective translation of these evidence-based AAC interventions to the everyday lives of children with CCN so that the possible becomes the probable. This article considers each of these challenges in turn, summarizing the state of the science as well as directions for future research and development.

Objective: To examine the co-occurrence of physical teen dating violence (TDV) with other forms of victimization. Method: The sample includes 1,680 youth aged 12 to 17 from the National Survey of Children's Exposure to Violence (NatSCEV), a nationally representative telephone survey of victimization experiences. Results: Every victim of physical TDV (100%) reported at least one other type of victimization. Physical TDV is very closely associated with several other forms of victimization in this sample, with adjusted odds ratio ranging from 1.48 to 17.13. The lifetime rate of TDV was 6.4% for all youth, but TDV rates reached 17% for youth who had been physically abused by a caregiver, 25% for youth who had been raped, and 50% for youth (<16 years) who had experienced statutory rape or sexual misconduct by a partner more than 5 years older. Victims of TDV reported, on average, twice as many other types of victimizations as those with no history of TDV. Conclusions: These data indicate that physical TDV is especially closely associated with some forms of child maltreatment, sexual victimization, and polyvictimization. Universal dating violence prevention programs designed for youth who have not yet, or just recently, started dating will typically include a large number of youth who have already been victimized by other forms of violence. Prevention curricula may be more effective if they address the needs of victimized youth, for example, by teaching skills for coping with prior victimization experiences. (PsycINFO Database Record (c) 2013 APA, all rights reserved)

Nationellt kompetenscentrum anhöriga fick i uppdrag av Hjälpmedelsinstitutet att under 2012 utvärdera tre projekt inom programmet, "Teknik för äldre II" som fokuserar på tekniskt stöd till anhöriga "Mitt i livet" som kombinerar förvärvsarbete med anhörigomsorg. Det första projektet, "Teknikstöd – ökad social interaktion mellan anhöriga mitt i livet", i Alingsås kommun implementerade det internetbaserade IT systemet "Gapet" för yrkesverksamma anhöriga. Det andra projektet, "Modell för virtuellt anhörigstöd" i Gävle kommun, utvecklade en modell och struktur för ett enhetligt virtuellt anhörigstöd som riktade sig till yrkesverksamma anhöriga vilket inkluderade den IT-baserade stödtjänsten "Anhörigstödsportalen". Det tredje projektet, "Teknikstöd för yrkesverksamma anhöriga – en behovsstudie, fokuserade på att utföra en inventering av yrkesverksamma anhörigas behov av ny teknik, utveckla en modell för teknikstöd riktat till yrkesverksamma anhöriga samt hitta vägar för att sprida kunskap för att öka målgruppens möjlighet att nås av teknikstöd. Detta område är särskilt viktigt därför att det i nuläget finns få stödtjänster, i Sverige men även internationellt, som är speciellt anpassade till yrkesverksamma anhöriga som hjälper, stödjer och/eller vårdar en äldre närstående. Många yrkesverksamma anhöriga uttrycker att de vill hjälpa sin förälder/sina föräldrar, men att det är svårt att uppnå en balansgång mellan arbetsliv och familjeliv samtidigt som man hjälper, stödjer och/eller vårdar en äldre närstående. Det är inte ovanligt att egen tid för avkoppling och välbefinnande blir alltmer sällan och prioriteras bort. Som en följd av detta upplever de yrkesverksamma anhöriga ofta stress för att de inte räcker till och ständigt behöver bolla mellan olika sfärer av sina liv. Den senaste statistiken från Socialstyrelsen visar att närmare 100 000 anhöriga har behövt minska sin arbetstid eller sluta arbeta pååtta procent män. Yrkesverksamma anhörigas behov kan sammanfattas med information, rådgivning och/eller utbildning/ träning, praktiskt samt känslomässigt stöd som är flexibelt och passar de egna rutinerna och den egna situationen. Mot denna bakgrund, utvecklades och diskuterades en utvärderingsplan med projektledarna tillsammans med den övergripande koordinatorn för initiativet "Teknik för Äldre II" vid det första gemensamma projektmötet och utvärderingen var en återkommande nyckelfråga vid efterföljande gemensamma projektmöten som hölls under året. Utvärderingen av projekt 1 och 2 genomfördes under hösten 2012 med en liknande utformning för båda projekten där en kvalitativ utvärdering genomfördes med hjälp av fokusgruppsintervjuer och individuella intervjuer och en kvantitativ utvärdering utfördes med hjälp av ett standardiserat frågeformulär om användbarhet. Utvärderingen av projekt 3 genomfördes kontinuerligt från starten till slutet av projektet. Detta berodde på att projektet var en behovsstudie som omfattade anhörigvårdare i en kontinuerlig utvecklingsprocess vilket betyder att det var olämpligt att genomföra en utvärdering under en specifik period vilket var fallet i de två första projekten. Resultaten från utvärderingarna av de första två projekten visar att teknikstöd har en stor potential avseende yrkesverksamma anhöriga då det erbjuder ett flexibelt sätt för anhöriga att få tillgång till information och en möjlighet för anhöriga att kunna utbyta erfarenheter med andra i samma situation och själva skapa stödnätverk. På samma gång erbjuder teknikstöd personalen att arbeta på ett systematiskt sätt med stöd till anhöriga. Men, för att teknikstöd ska användas av fler anhörigvårdare och för att det ska bli mer allmänt accepterat av personalen behövs det grundläggande datorutbildning för både anhöriga och vård- och omsorgspersonal samt kontinuerlig tillgång till handledning och stöd i användningen. Resultat som härrör från en utvärdering från behovsstudien (projekt 3) visar att utbudet av kreativa och sekventiella metoder som användes under utvecklingsprocessen möjliggjorde en genuin brukarmedverkan av yrkesverksamma anhöriga så att deras röster blev hörda gällande teknikstöd. Samtidigt kan dessa innovativa metoder bilda en användbar modell för vård- och omsorgs personal gällande hur anhöriga kan nås av stöd genom produkter, tjänster och ny teknik.

För att stödja anhöriga med behov av extra stöd i samband med en närståendes
flytt till äldreboenden erbjöd Östermalms stadsdelsförvaltning under 2011 anhörigstöd
i form av gruppsamtal, så kallat fördjupat anhörigstöd. Målet med det
fördjupade anhörigstödet var att stödja anhöriga som gått igenom den svåra
processen att fatta beslutet om närståendes flytt. En terapeut ledde sammankomsterna
och stadsdelsförvaltningens anhörigkonsulent var behjälplig i detta arbete.
Stiftelsen Äldrecentrum fick i uppdrag av Östermalms stadsdelsförvaltning att
göra en deskriptiv studie av deltagarnas erfarenheter av att vara med i pilotprojektet
med fördjupat anhörigstöd. Syftet var att beskriva vad det fördjupade
anhörigstödet innebär samt att redogöra för deltagarnas erfarenheter. De fem
anhöriga, samtliga kvinnor, som deltog i det fördjupade anhörigstödet intervjuades.
Intervjuer genomfördes även med ledarna för gruppsammankomsterna.
Ett fördjupat anhörigstöd är terapi, där det handlar om att få verktyg för att
kanske välja en annan väg och att gå vidare. Man berör tidigare upplevelser i livet
och kopplar dessa till den anhöriges nuvarande situation. I ett fördjupat anhörigstöd
får den anhörige hjälp att bearbeta sin situation, vilket möjliggör för deltagarna
att komma ur sin kris.
Inom ramen för det fördjupade anhörigstödet genomfördes totalt tio gruppsammankomster.
Deltagarnas erfarenheter av sammankomsterna visade bland
annat att:
 Samtliga deltagare var mycket nöjda med det fördjupade anhörigstödet
Träffarna beskrevs som innehållsrika och intensiva.
 Deltagarna lyfte fram det positiva med sammankomsterna dels den goda
sammanhållningen i gruppen dels ledarnas engagemang och stöd.
 Tre av deltagarna ansåg att de hade fått ut det de hoppades på av det
fördjupade anhörigstödet, en visste inte och en deltagare sa att hon tyckte att
det var positivt att gå dit och att hon hade mått bra i stunden.
När det fördjupade anhörigstödet avslutades erbjöds deltagarna att fortsätta sina
sammankomster själva. Samtliga deltagare har också möjlighet till fortsatt kontakt
med anhörigkonsulenten.
Möjligheten för anhöriga att få hjälp att bearbeta sorg och förlust behöver uppmärksammas
i större utsträckning i det anhörigstöd som ges. Pilotprojektet
"Fördjupat anhörigstöd" är en intressant stödform som visar att behov finns av
stöd till anhöriga i en svår och utsatt situation. Stödformen behöver prövas och utvecklas
ytterligare. Ett område att få mer kunskap om är hur stort behovet av
terapi är för att stödja anhöriga. Intressant vore att prova olika terapiformer. En
annan intressant utveckling skulle vara att genomföra ett fördjupat anhörigstöd i
samverkan mellan kommun och landsting.

This article summarizes the development of the caregiver-provider relationship assessment (CPRA) designed to measure family caregivers' perceptions of relationship quality with health care providers. Using an online sample of family caregivers (n = 156), the patient reactions assessment (PRA) was adapted for use with family caregivers and subjected to principal component and reliability analyses. Analyses indicate that the CPRA factor structure is analogous to the original PRA scale, and Cronbach's BFGR181|END for the three CPRA subscales range from .85 to .91. The tool can be used by clinicians and researchers in efforts to help family caregivers become more effective communicators in health care contexts.

Purpose:  The purpose of this study was to develop effective intervention programmes that can reduce family caregiver burden as they provide care to stroke patients so that family caregivers can adapt to and deal with the new circumstances from the early stages of stroke. We also intended to verify the effectiveness of the developed programme.

Methods:  This study employed a quasi-experimental design with a repeated-measures analysis. We included five hospitals specialized in stroke care in Seoul Metropolitan areas. Seventy-three patients from these hospitals agreed to participate in this study.

Results:  The score of family caregiver burden decreased by 8.07 (±18.67) in the experimental group and increased by 1.65 (±7.47) in the control group, which was a significant difference (t = 2.257, P = 0.027) between pre- and post-intervention. The family caregiver burden of experimental group was significantly lower than the control group (F = 3.649, P = 0.033).

Conclusions:  The home-based individual tele-care intervention, in addition to the hospital-based group programme, was cost-effective and supportive in reducing family caregivers' burden by providing relevant information for their needs in timely manner.

Background: Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. Objective: To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. Design: This is a quasi-experimental study design. Methods: Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Results: Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function—Relationships between family and subsystems and Relationships between family and society were improved in the experimental group compared to the comparison group, but Relationships between family and family members was not different. Conclusions: The results provide evidence that telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first 30 days at home after heart failure patients are discharged from the hospital. Telenursing specialists cared caregivers with the concepts of providing transitional care to help them successful cross the critical transition stage.

Gunilla Thunberg, logoped och fil Dr på DART har på updrag av Sveriges Habiliteringschefers förening lett en grupp som sammanställt evidens för tidiga språk- och kommunikationsinsatser till förskolebarn inom barnhabilitering. Gruppen är nu färdig med sitt arbete och den 1/4 publicerades rapporten och rekommendationerna på Sveriges Habiliteringsschefers förenings hemsida. Det finns mycket spännande att ta del av när det gäller tidiga AKK-insatser så missa inte denna viktiga rapport! Du hittar den och kan ladda ner den här:

Föreningen Sveriges Habiliteringschefer har som uppgift att verka för en utveckling av habiliteringsverksamheten för barn, ungdomar och vuxna utifrån de övergripande mål som beskrivs i hälso- och sjukvårdslagen, lagen om särskilt stöd och service till vissa funktionshindrade samt föreskriften God Vård, SOSFS 2005:12. Föreningen ska på olika sätt stimulera forsknings- och utvecklingsarbete. Våra verksamheter riktar sig till en grupp barn, ungdomar och vuxna i samhället med stora och komplicerade behov.

Föreningen har en ambition att gemensamt utveckla en kvalitetssäker och effektiv verksamhet. Effektivitet kan ses ur en traditionell kostnadsaspekt men också ur barnet/den vuxnes och anhörigas levnadsaspekt.

Det finns en flora av interventioner. Inom ett flertal områden behöver metoder, arbetssätt och behandlingsresultat för barn, ungdomar och vuxna med funktionsnedsättningar beskrivas och dokumenteras. För att med största möjliga säkerhet veta vad som ska utvecklas och vad som ska avvecklas krävs ett nationellt samarbete. 2001 initierades därför ett projekt som fick namnet Evidens Baserad Habilitering (EBH). Syftet var att pröva en nationell arbetsmodell bestående av övergripande arbetsgrupper med uppgift att granska olika interventioners evidens. Projektet har med tiden övergått till att bli ett vedertaget arbetssätt när det gäller att ta fram evidensläget för ett interventionsområde. Detta är den sjunde arbetsgruppen där arbetsmodellen har använts.

Arbetsgruppens uppgift har varit att:

göra en litteraturöversikt över aktuell forskning och erfarenhetsbaserade resultat avseende tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering,
utifrån överenskomna kriterier kritiskt granska de utvärderingar och studier som publicerats,
på ett lättfattligt sätt göra erhållna resultat tillgängliga i en rapport.
Rapporten var färdig i februari 2011 och en revidering är gjord september 2012.

Föreningen Sveriges Habiliteringschefer ställer sig bakom de rekommendationer som arbetsgruppen lagt fram. Rapporten bidrar till en fördjupad kunskap.

Ett stort tack till Anna Blomgren, Barbara Eberhart, Jessika Forsberg, Lena Nilsson, Maria Nolemo och Gunilla Thunberg för att ni med lust, energi och stort engagemang har gripit er ann uppgiften. Genom er granskning tydliggörs också behovet av fortsatta studier för att säkra en habilitering på säker grund.

Göteborg 2012-11-05

Anna Kågeson
Styrgruppen Evidensbaserad habilitering
Föreningen Sveriges Habiliteringschefer

I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. För att dra lärdom utvecklingsarbetet har Nationellt
kompetenscentrum anhöriga (Nka) tagit initiativ till denna undersökning för att i samverkan
med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till anhöriga under
tre år i åtta kommuner.
Syftet med studien är att:
- Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp
och utvärderas inom områdena äldre, funktionshinder och individ- familjeomsorg samt
samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom
området.
- Undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga
- Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.
Stödet till anhöriga i de utvalda kommunerna har kartlagts år 2010 och år 2013 genom att ta
del av tillgängliga dokument, kommunernas hemsida och informationsblad samt intervjuer
med och enkätutskick till chefer och andra nyckelpersoner. Genom en enkätstudie med
uppföljande telefonintervjuer har anhörigas situation och syn på sitt stöd, undersökts vid två
tillfällen. Årligen genomfördes fokusgruppsintervjuer, en inom vardera äldre-,
funktionshinder- samt individ och familjeområdet med syftet att beskriva och följa
utvecklingen av stödet till anhöriga; vad som fungerade bra och mindre bra. I varje
fokusgrupp ingick personal, beslutsfattare och representanter från ideella sektorn.
I denna delrapport, som också är slutrapport för hela projektet, presenteras resultatet för den
sista kartläggningen, gällande år 2013. Utvecklingen av anhörigstödet under de senaste åren
beskrivs också genom en jämförelse av resultaten från de olika kartläggningarna.
Tyngdpunkten i denna sammanfattning ligger på denna jämförelse.
Resultat
Det har inte skett några omvälvande förändringar i anhörigstödet i Uppsala kommun som
helhet under åren 2010 till 2013, men utvecklingen har inte stått stilla. Medvetenheten om
vikten av ett anhörigperspektiv hade på flera håll ökat.
Anhörigcentrum genomgick under tidsperioden en stor organisationsförändring.
Verksamheten bedrevs under två år som projekt, för att sedan fortsätta med ettåriga avtal i
väntan på beslut om eventuell konkurrensutsättning. Kunskapen om Anhörigcentrums
existens ökade under undersökningsperioden i kommunen och allt fler anhöriga sökte sig dit.
Målgruppen förändrades genom att också inkludera anhöriga till personer på boenden.
Anhöriga till äldre personer var fortfarande den största målgruppen, men en ökning av
anhöriga till yngre personer och framför allt från psykiatri och socialpsykiatri kunde noteras.
Utformningen av stödet till anhöriga var i stort densamma, men förändrades i viss mån till
exempel genom att anhöriggrupperna vände sig till andra målgrupper, rekreationshelger
infördes och anhöriga fick möjlighet till juristhjälp. Behovsinventeringar gjordes årligen, men
på lite olika sätt och med olika fokus. Anhörigcentrum ingick vid tiden för kartläggning två i
kommunens Nöjd-Kund-Index. Samverkan med landstinget utvecklades under tidsperioden
med t.ex. bemanning av "anhörighörna" på Akademiska sjukhuset och Anhörigcentrum hade
också tagit en aktiv del i landstingets projekt för utveckling av anhörigstöd.
8
I Äldrenämndens uppdragsplaner var effektmålen desamma för anhörigstödet under
uppföljningstiden, men målvärdena för antalet personer som skulle använda sig av
anhörigstödet (läs Anhörigcentrum) ökade från år till år. I förfrågningsunderlaget gällande
hemvård hade nya ska-krav införts under en egen rubrik; Anhörigvänlig vård och omsorg.
Inom hemvården hade också anhöriga börjat uppmärksammas genom anhörigträffar
information med mera. Inom vård- och omsorgsboendena fortsatte anhörigstödet
huvudsakligen inom den palliativa och avancerade sjukvården, men nytt var att Silviasystrar
inom åtminstone ett annat boende hade introducerat anhöriggrupper. Ett omfattande
värdegrundsarbete genomfördes inom äldreomsorgen som också inkluderade anhörigfrågor.
I förfrågningsunderlagen för upphandling av LSS-boendeenheter hade år 2013 infogats, under
rubriken Anhöriga, specifika ska-krav rörande anhöriga som inte hade funnits tidigare. Inom
Affärsområde assistans hade en grupp chefer i utvecklingssyfte börjat arbeta med
anhörigfrågor och anhörigas delaktighet. Verksamheten för anställda anhöriga bedrevs med
höga ambitioner och engagemang. Affärsområdeschefen i Affärsområde barn, ungdom &
familj beklagade bristen på stöd till anhöriga till personer under 21 år. Några insatser inom
verksamheten hade blivit mer flexibla bland annat för att underlätta för anhöriga. Arbete med
Samordnad individuell plan (Sip) infördes under uppföljningstiden och detta trodde många
skulle underlätta anhörigas situation.
I måldokument från de båda åren lyftes helhetsperspektiv och familjens roll fram på likartat
sätt inom individ- och familjeområdet. I kommunens drogpolitiska program nämndes
anhöriga som målgrupp för verksamheten. Viktiga stödinsatser erbjöds under hela den
undersökta tidsperioden inom Råd- och behandlingsgruppen, Trappan och familjeenheterna.
Inom Affärsområde socialpsykiatri & beroende hade en ny form av utbildning skapats. Den så
kallade återhämtningsakademin som ämnade samla brukare, personal och anhöriga i
gemensamma utbildningar.
Resultaten från enkäten till de anhöriga skiljer sig inte i någon större omfattning mellan de
båda studerade åren. Det är relativt stora andelar av respondenterna som beskriver en
problematisk livssituation och resultaten antyder också att det är de känslomässiga
dimensionerna som kan kräva ytterligare stödinsatser.
Det mest slående resultatet i de båda intervjuundersökningarna var att de anhöriga var nöjda
med det stöd som de hade fått. Framför allt gällde detta Anhörigcentrums verksamhet.
Rapporten avslutas med en begreppsdiskussion. Orden anhöriga, närstående, anhörigstöd med
flera används på olikartade sätt. För att kunna beskriva, följa, jämföra och inte minst utveckla
innehållet i stödet till anhöriga krävs att begreppsapparaten utvecklas. Fördelar och nackdelar
med ett specialiserat centraliserat anhörigstöd i jämförelse med ett integrerat decentraliserat
stöd diskuteras vidare och vikten av att ett anhörigperspektiv och anhörigstöd implementeras i
hela socialtjänsten betonas. För detta krävs bland annat att anhörigfrågorna finns med i
styrdokumenten på alla nivåer och att utbildningsinsatser genomförs.
Uppsala kommun har i en nationell jämförelse legat långt framme i anhörigfrågor under en
lång tid. Klimatet för att bygga upp och utveckla ett (specialiserat) anhörigstöd har varit gott.
En förhoppning är att den positiva trenden kommer att fortsätta i vetskapen om att mycket
hitintills är gjort, men att de svåraste uppgifterna kanske återstår; att se till att
anhörigperspektiv och anhörigstöd integreras inom hela socialtjänsten.

The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimer's Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimer's Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimer's Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues.

AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.

AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.

Socialstyrelsen får i uppdrag att genomföra en kartläggning av landstingens användning av anlagsmedel för rådgivning och annat personligt stöd enligt lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Socialstyrelsen ska även föreslå en försöksverksamhet med samordnare för barn och unga med funktionsnedsättning.

Vidare får Socialstyrelsen i uppdrag att genomföra en förstudie om hur information om samhällets stöd till barn med funktionsnedsättning på bästa sätt görs tillgänglig för målgruppen.

Uppdraget ska redovisas till Regeringskansliet (Socialdepartementet) senast den 18 januari 2013.
Socialstyrelsen får under 2012 använda högst 1 miljon kronor för att genomföra uppdraget.

Objective: To evaluate a newly developed integrated digital prosthetic, the COGKNOW Day Navigator (CDN), to support persons with mild dementia in their daily lives, with memory, social contacts, daily activities and safety. Methods: A user participatory method was applied in the development process, which consisted of three iterative 1-year cycles with field tests in Amsterdam, Belfast and Luleå. In the successive cycles 16, 14 and 12 persons with dementia and their carers participated. Data on usability were collected by means of interviews, observations, questionnaires, logging and diaries. The CDN prototype consists of a touch screen, a mobile device, sensors and actuators. Results: The evaluation showed that persons with dementia and carers valued the CDN overall as user-friendly and useful. Conclusions regarding the effectiveness of the system in daily life were limited due to insufficient duration of the testing period caused by delays in development and some instability of the final prototype. Conclusion: With the suggested adaptations, the CDN is expected to be a useful tool for supporting community-dwelling persons with mild dementia and their carers.

The Internet is used to help informal caregivers provide assistance to people with chronic illness and disability. We identified factors associated with Internet use by informal caregivers assisting people with multiple sclerosis (MS) using a logistic regression model. Duration of MS in the person receiving care and caregiver age predicted lower Internet use. More hours per week providing care and higher caregiver educational level increased odds of Internet use. The Internet can be a low-cost service delivery option to provide education and support to caregivers assisting people with MS.

Föräldrautbildning erbjuds idag bl.a. inom förskola/skola, socialtjänst liksom hälso- och sjukvård. Lärandet kan beskrivas ur olika perspektiv. Om barnet är det primära brukar man tala om Parent Education, när fokus ligger på familjen som helhet talar man om Parent Training och när det är föräldrarna som står i centrum för utbildningsinsatsen säger man ofta Parent Support. En viktig tanke är att få tillstånd ett bra samarbete mellan föräldrar och personal. Det är nödvändigt för att skapa större delaktighet och ett bättre lärande för föräldrar.

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

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

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

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

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

In this chapter, we describe the development and evaluation of the Family Bereavement Program (FBP), a theoretically derived intervention program for children who have experienced parental death. We first present a discussion of risk and protective factors for parentally bereaved children and discuss these within a general theoretical framework of resilience following adversity. We then discuss the modifiable risk and protective factors that were targeted for change in the FBP and the theoretical model underlying the program. Finally, we present evidence from the evaluation of the FBP, including assessment of mediators and moderators of program effects at posttest and short-term follow-up and findings from preliminary analyses at the 6-year follow-up. This research on a theoretically based intervention for bereaved children follows a similar program of research we have conducted with children from divorced families, and we discuss ways in which the findings with bereaved children replicate, and in some cases diverge from, findings regarding children in divorced families.

Living with children with a disability is often perceived as a permanent stressor to the family and it affects all aspects of family life including the well-being of family members. Since little is known about parenting teenage daughters diagnosed with ADHD, the aim of the study was to gain a deeper understanding of the main problem involved using a grounded theory approach. Interviews were carried out with 12 parents, 11 mothers and 1 father, of teenage daughters diagnosed with ADHD. The parents´situation was conceptualized as living at the edge of one´s capability with the properties having the sole parental responsibility, fighting for professional support, being on duty around the clock and trying to solve family conflicts. Parents described how their health was negatively affected by their life situation.

Living with children with a disability is often perceived as a permanent stressor to the family and it affects all aspects of family life including the well-being of family members. Since little is known about parenting teenage daughters diagnosed with ADHD, the aim of the study was to gain a deeper understanding of the main problem involved using a grounded theory approach. Interviews were carried out with 12 parents, 11 mothers and 1 father, of teenage daughters diagnosed with ADHD. The parents´situation was conceptualized as living at the edge of one´s capability with the properties having the sole parental responsibility, fighting for professional support, being on duty around the clock and trying to solve family conflicts. Parents described how their health was negatively affected by their life situation.

Akademisk avhandling

The overall aim of this thesis was to elucidate family members' lived experiences and needs during a child's cancer trajectory and to describe how the illness and its treatment influence both individuals within the family and the family as a whole. Seventeen families with a child under the age of 13 and newly diagnosed with cancer were followed during the child's treatment trajectory by means of interviews and observations. Parents, patients and siblings seven years or older were interviewed at the time of diagnosis, during the treatment and after it was completed. Patients younger than seven were observed during their initial hospitalization. The interviews were analyzed with a hermeneutic phenomenological approach and the observations with content analysis. The results from the observations (Paper II) showed that the young children's needs during their initial hospitalization were described as a need to have the parent close by, a need to play and feel joy, a need for participation in care and treatment, a need for a good relationship with the staff and a need for physical and emotional satisfaction. The results from the interviews showed that, at time of diagnosis (Paper I) the families' lived experience was described as a broken life world and an immediate striving to survive. Their secure everyday life disappeared and was replaced by fear, chaos and loneliness. When striving to help the child and the family survive, family members endeavoured to feel hope and have a positive focus, to gain control and to feel close to other people. During treatment (Paper III) the families lived experience was described as focus on the ill child - an everyday struggle. Each day's focus was on the child and the families experienced it as a tough period which they struggled to come through. Only when the sick child's needs were satisfied, could the focus move to other parts of the family. Family members felt drained, locked up and isolated. Family life was experienced as disrupted and they struggled to retain normality and become experts. Perspectives on life changed; it was important to enjoy life and to be aware of sources of support. When treatment was completed (Paper IV) the families' lived experience was described as returning to a changed ordinary life - incorporating a trying and contradictory experience. The families felt relieved that the child's treatment was over but, at the same time they still experienced stresses and strains in life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. The families wanted closeness but, from time to time, felt a loss of concern from others. The findings from this thesis can deepen the understanding of what it is like living with childhood cancer and of the needs of young children with cancer. By reflecting on the findings, paediatric oncology staff may become increasingly thoughtful and thereby better prepared to take care of family members of a child with cancer, including the sick children themselves.

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

Aims and objectives. We aimed to discover the significance of the participation of relatives in the treatment process using the principles of the Need-Adapted Approach. The study is based on joint interviews with 10 psychiatric patients, their relatives and a multiprofessional treatment team. Background. The Need-Adapted Approach was developed in Finland for difficult psychiatric problems in public sector psychiatry. The central feature of the approach is the active participation of patients and their relatives in planning the treatment and in the treatment process. It emphasises horizontal expertise and open discussions between the patient, relatives and professionals. Design. A qualitative method based on the grounded theory approach was used. Method. The main focus in the analysis was on how the informants experienced the significance of the participation of their relatives in the treatment process. Results. Seven categories and one core category were identified. Primary categories which increased safety were: (1) shared understanding, (2) a new kind of relationship opens up and (3) being able to cope with life. Secondary categories were: (4) exclusion and (5) need for a one-to-one relationship. Ambivalent categories were: (6) whom or what one can believe and (7) keeping the illness secret. One core category, safety, was identified among the categories. A theoretical model was created for clinical purposes. Conclusions. When practiced correctly, the Need-Adapted Approach makes it possible to create circumstances in psychiatric treatment where the patient and his/her relatives can experience increased safety in spite of the anxiety connected to the psychiatric difficulties. Relevance to clinical practice. Clinical workers and nursing personnel can use our findings in their practical work with psychiatric patients and their relatives. Our findings support further theoretical considerations concerning safety and can be used as guidelines for nursing personnel in their work

This review summarizes a growing number of methodological concerns emerging from research on child witnesses of intimate partner violence (IPV). A brief summary of various psychological, biological, and cognitive impairments associated with witnessing IPV is presented. Directions for future research in this area are explored with particular attention paid to experimental design. Advantages and disadvantages of retrospective, cross-sectional, and longitudinal designs are evaluated. Suggested improvements include the use of multiple informants, behavioral observations, and prospective, longitudinal assessment.

Detta är en målgruppsanpassad version av rapporten Effekter av stöd till anhöriga som vårdar äldre med demenssjukdom eller sköra äldre – en systematisk översikt. Den riktar sig till alla som arbetar med anhöriga och beskriver effektiva sätt att ge stöd till anhöriga som vårdar eller stödjer äldre med demenssjukdom.

En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.

Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.

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

Syftet med utvärderingen är att följa upp resultaten från den första nationella utvärderingen, som presenterades 2004 i rapporten "Förskola i brytningstid", och studera förskolereformens genomslag och konsekvenser knappt tio år efter införandet av läroplanen. Utvärderingen sätter också in den svenska förskolan i ett internationellt perspektiv och pekar på viktiga vägval som förskolan står inför i sin fortsatta utveckling.

Utvärderingen bygger dels på en enkätstudie riktad till ledningsansvariga i landets samtliga kommuner och kommundelar, dels fallstudier i ett urval kommuner och förskolor.

Som ett led i säkerställandet av trygghet, lämplighet och etik i utövande av sörjandestöd i Sverige har vi som forskare och praktiskt verksamma på detta område studerat andra länders regelverk. Då vi anser, att Storbritannien och Nordirland (refereras i texten till U.K.) kommit långt i detta hänseende - och vi också beretts tillfälle att på plats ta del av engelska stödorganisationers arbetssätt och vägledande regler - vill vi gärna vidarebefordra dokumentet och regelverket " Standards for Bereavement Care in the UK", i svensk version "De nationella riktlinjerna för sörjandestöd i Storbritannien och Nordirland". Detta sker med de engelska upphovsmännens samtycke och förhoppning om att värna om sörjandestödet även utanför deras hemland. (Engelsk titel: Standards for Bereavement Care in the UK).

Background: It is both complex and difficult for relatives when a loved one moves into a nursing home and many relatives are not prepared for the realities these new situations entail. Little attention has been paid to scrutinising the involvement of relatives in patient care, particularly in relation to the structures and routines of nursing homes or to the staff's reasoning concerning their involvement. Aim: To describe, from a gender perspective, how nursing staff's routines and reasoning act to condition the involvement of relatives in nursing homes. Methods: Focused ethnographic fieldwork was conducted in a medium-sized urban community in central Sweden in three different nursing homes. Results: The nursing staff assigns a certain code of conduct to all relatives they perceived as 'visitors' in their working arena. This code of conduct was related to the routines and subcultures existing among the nursing staff and stemmed from a division of labour; the underlying concept of 'visitor' predetermined the potential for relatives' involvement. This involvement is explicitly related to the general gendered characteristics that exist in the nursing staff's perception of the relatives. Discussion: The study's limitations are primarily concerned with shortcomings associated with a research presence during the fieldwork. The discussion focuses on the dimensions of power structures observed in the nursing home routines and the staff's reasoning based on their gendered assumptions. We argue that it is important to develop mechanisms that provide opportunities for nursing staff in elderly care to reflect on these structures without downplaying the excellent care they provide. We stress the importance of further exploring these issues concerning relatives and their involvement in nursing homes to facilitate the transition from informal caregiver to 'visitor'

This mixed-method study investigated the use of a bibliotherapy intervention that was designed specifically for preteen siblings of children with autism. Bibliotherapy is a facilitated method in which books related to participants' issues are used in order to help develop their insight about circumstances they share. Approximately one million siblings of children with autism have unique life circumstances that only those with similar lives can understand. Siblings, an intricate part of the dynamic family system, are often excluded from social services that are available to parents and children with autism. Siblings of children with autism can benefit from support, too; however, intervention research that investigates the effectiveness of supporting siblings of children with autism is limited.

The purposes of this study were to measure the effectiveness of a bibliotherapy intervention and to examine whether participants progressed through the three stages of bibliotherapy, increased their knowledge of autism, and whether interactions with their family members changed as a result of engaging in bibliotherapy sessions. Six participants, male and female, attended six bibliotherapy sessions. The book Rules (Lord, 2006) was the catalyst for the sibling discussion and activities that were a part of each bibliotherapy session. Pre and post surveys, sibling comments expressed during the bibliotherapy sessions, and sibling journal entries were used to collect data. The data were then analyzed using the Page Test for Ordered Alternatives and the Wilcoxon Signed-Ranks test (WSR). Results indicated statistically significant outcomes for increasing autism knowledge and nonstatistically significant results for progressing through the three stages of bibliotherapy and changes in family interactions. However, parents reported that the participant siblings demonstrated an increase in understanding and patience for their brothers with autism, and the siblings reported overall satisfaction with the bibliotherapy intervention. Results, implications, and recommendations for future research are provided.

Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.

Background: At the central administrative level in Sweden, care work is presented as a complex task for which personnel require special qualifications. In elderly care, questions of training and qualifications form the highly topical theme noticed by central actors. According to The National Board of Health and Welfare, the supply of manpower and the educational levels of the workers are the most important factors in ensuring high quality care for the elderly. The question of educational levels is, however, with the exception of personal assistants, not given as much attention in care for people with disabilities.Aim: The aim of this dissertation is firstly to compare elderly care and care for persons with disabilities with the focus to describe and analyse education and work environment in these sectors. Secondly, the aim is to analyse if, and if so how, questions of education interacts with personnel's view of the social work environment.Methods: The thesis is comprised of four studies and paper 1, 2 and 3 are based on the results of a qualitative interview study, which was comprised of 48 persons who worked in elderly care and the care for persons with disabilities. Of the 48 persons who took part in the study, 11 of them worked as middle managers and 37 worked as care workers in the every day care. Paper 4 consists of a research summary on how education for care workers is being studied in a Swedish and an international context.The personnel who participated in the interview study work in different care settings; in elderly care the personnel work in both sheltered housing and public home care services. In the care for disabled persons, the personnel work in residential housing with special services, in public daily activities for people with intellectual disabilities and as personal assistants.Result: Both managers and personnel find it important for care workers to have a degree of educational background as a basis for the learning process at the work place. The results also show that educational levels and the work environment are themes that are discussed differently by different actors. In previous research on education for care workers in both elderly care and the care for People with disabilities, academic education or education at a ground level has been seen as problematic due to the distance it is said to create between the worker and the care recipient. My results show that the discussion about education for care workers has become rather biased, and that highly educated personnel tend to be more aware of the power they possesses and that the relation to the care receiver is important. In elderly care the issue of education seems to be more a question of a general educational level. In the care for people with disabilities, the question of education for personnel is on a more individual basis, where the care workers learn together with the care recipient. Educational levels, the work environment and relations with colleagues and care recipients are connected and support from the managers is important for understanding the work and the relational perspective.

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

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

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

Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.

Encounters and relationships are basic foundations of nursing care and the preconditions for these foundations are changing along with a change in healthcare towards an increase of home-based care. In this development the use of distance-spanning technology is becoming increasingly common. There is a need to develop more knowledge and a theory base about the role of the encounter and the relationship in home-based care. Most studies so far cover the topic in the context of hospital care. There is also need to develop more knowledge of experiences of distance-spanning technology in home-based care. The overall aim of this doctoral thesis was to explore home-based care with specific focus on the use of distance-spanning technology, encounters and relationships from the perspectives of persons in need of care, general practitioners (GPs) and registered nurses (RNs).
The thesis contains studies with persons in need of home-based care (n=9), general practitioners (n=17) and registered nurses (n=24). The study with RNs consisted of registered nurses (n=13) and district nurses (n=11). The data was collected through individual interviews and group interviews and were analyzed by qualitative content analysis with various degrees of interpretations.
Home-based care with mobile distance-spanning technology (MDST) was experienced as positive and it opens up possibilities, however MDST also has limitations. It was considered that MDST should be used by care professionals and not by the person in need of care or their family members. The MDST affects home-based care and the work and cooperation in home-based care. The expression was that a face-to-face encounter should be the norm and MDST cannot replace all face-to-face encounters in home-based care. MDST could work in some situation, but should be used with caution. The findings also show that good encounters in home-based nursing care contain dimensions of being personal and professional, and that the challenge is to create a good balance between these. Being together in the encounter is a prerequisite for the development of relationships and good nursing care at home is built on a trusting relationship. The relationship is a reciprocal relationship that the person and the nurse develop together and nurses have to consciously work on the relationship. It seems that a good encounter and a trusting relationship could affect the views on the use of distance-spanning technology in homebased care. The participants in the studies in general expressed positive attitude towards distancespanning technology at the same time as they expressed caution about an extensive use of it in home-based care. They highlighted the importance of positive encounters and the importance of the relationship in order to receive and provide good care and nursing care in the homes. The context of home-based care has changed and will continue to change over time. This change leads to that the use of distance-spanning technology is increasing and challenges the nurses to develop work strategies that can promote competence, caring and communication in the encounter, and building and maintaining relationships in home-based nursing care.

A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people with dementia.

Delaktighet och kommunikation är centrala ideal inom vård, omsorg och socialt arbete. Men vad innebär delaktighet i praktiken och hur kan teorier om delaktighet och professionella samtal förstås i olika praktiska sammanhang? Med utgångspunkt i svensk och internationell forskning ger den här boken en djupare inblick i villkor och möjligheter för professionella samtal. I ett tvärvetenskapligt perspektiv på kommunikation presenteras exempel från nya studier på vad delaktighet innebär inom en rad miljöer: nödsamtal, akut- och specialistsjukvård, äldreomsorg, biståndsbedömning, arbetsrelaterad rehabilitering och vårdutbildning.

Boken passar väl för utbildningar till sjuksköterska, socionom, arbetsterapeut, sjukgymnast och läkare. I boken beskrivs även olika metoder för datainsamling och analys av data. Det innebär att boken med fördel kan knytas till metodundervisning och examensarbete på avancerad nivå.

Redaktörerna, Pia Bülow, Daniel Persson Thunqvist & Inger Sandén, och de övriga författarna är knutna till forskarnätverket Kommunikation i vård och omsorg (KIVOS).

Pia Bülow är lektor i socialt arbete vid Avdelningen för beteendevetenskap och socialt arbete på Hälsohögskolan i Jönköping.

Inger Sandén är lektor i vårdvetenskap vid Avdelningen för specialistutbildning vid Högskolan Väst och vid Avdelningen för omvårdnad vid Hälsouniversitetet, Linköpings universitet.

Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.

I vilken utsträckning är hälsan ojämlikt fördelad i Sverige och i övriga världen? Varför lever människor med högre social position längre än andra? Hur kan hälsan fördelas mer rättvist?
Dessa är några av de frågor som denna unika svenska bok önskar besvara och klargöra. Boken handlar om hur människors position i samhällets hierarkiska strukturer är nära förknippad med systematiska skillnader i hälsa. Var vi råkar födas i världen, men även den sociala position vi har i ett givet samhälle, har stor betydelse för vår hälsa och livslängd. Trots att en jämlik hälsa borde vara en mänsklig rättighet har hälsans ojämlika fördelning ofta stått långt ned på den politiska dagordningen.

Den orättvisa hälsan är en lärobok som samlar det breda forskningsfältet kring social ojämlikhet i hälsa och förklarar dess teorier, begrepp och metoder. Boken tar upp dagsaktuella frågor om hälsans sociala villkor och ger förslag på möjliga åtgärder för att minska ojämlikhet i hälsa i befolkningen utifrån de sociala bestämningsfaktorerna för hälsa.
Boken vänder sig till studerande inom samhällsvetenskapliga ämnen, vård och medicin samt andra som vill fördjupa sig i ojämlikhet i hälsa. Den lämpar sig också för verksamma inom folkhälsoområdet och för politiker.

Background
The aim of the study was to explore resilience among refugee children whose parents had been traumatized and were suffering from Post-Traumatic Stress Disorder (PTSD).

Methods
The study comprised 80 refugee children (40 boys and 40 girls, age range 6–17 yrs), divided into two groups. The test group consisted of 40 refugee children whose parents had been tortured in Iraq before coming to Sweden. In accordance with DSM-IV criteria, these children were further divided in two sub-groups, those who were assessed as having PTSD-related symptoms (n = 31) and those who did not have PTSD-related symptoms (n = 9). The comparison group consisted of 40 children from Egypt, Syria and Morocco whose parents had not been tortured. Wechsler Intelligence Scale for Children, 3rd edn. (WISC-III), Diagnostic Interview for Children and Adolescents- Revised (DICA-R), Post-Traumatic Stress Symptoms checklist (PTSS), "I Think I am" (ITIA) and Strengths and Difficulties Questionnaire (SDQ) were used to assess IQ; PTSD-related symptoms; self-esteem; possible resilience and vulnerability.

Results
Children without PTSD/PTSS in the traumatized parents group had more favorable values (ITIA and SDQ) with respect to total scores, emotionality, relation to family, peer relations and prosocial behavior than the children in the same group with PTSD/PTSS and these values were similar to those the children in the comparison group (the non-traumatized parents group). The children in the non-traumatized parents group scored significantly higher on the IQ test than the children with traumatized parents, both the children with PTSD-related symptoms and those without PTSD-related symptoms.

Conclusion
Adequate emotional expression, supportive family relations, good peer relations, and prosociality constituted the main indicators of resilience. Further investigation is needed to explore the possible effects of these factors and the effects of IQ. The findings of this study are useful for treatment design in a holistic perspective, especially in planning the treatment for refugee children, adolescents and their families.

I maj 2010 presenterades Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom". Under hösten 2010 arbetade en tvärprofessionell arbetsgrupp med en anpassning av de Nationella riktlinjerna till Blekingeförhållanden. Detta arbete där Landstinget Blekinge och länets kommuner deltog, resulterade i "Regionala riktlinjer — Utredning, vård och omsorg av personer med demenssjukdom i Blekinge", skrift 2011:6.

The aim of this thesis was to investigate old people's care and quality of life during the last period of life, but also to investigate their own and next-of-kin's experience of this phase. The thesis is based on four studies using separate samples. The sample (n=1198) in study I was drawn from the care and services part of the sub-study ?Good Aging in Skåne? (GAS). The criteria for inclusion in study I were: being 75 years and older having died during the years 2001?2004 and having received public care and services at home or in special accommodation. The study sample in study II comprised 411 people being 75 years and older of whom fifty of the respondents (the study group) had died one year after data collection, the 361 survivors were considered a comparison group. In study III, 17 people aged 75 years or older, who received municipal help and/or care and had a life-threatening disease and/or received palliative care, were interviewed. In study IV 17 next-of-kin's of people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life, were interviewed. Quantitative descriptive statistics, comparative statistics and logistic regression analysis, but also qualitative content analysis, were used when analysing the data. The results showed that in the last year of life, 82% of those living at home and 50% of those living in special accommodation were hospitalised. The results also showed that those living at home and those with several hospital stays more often died in hospital than those living in special accommodation and those with fewer hospitals stay. More visits to physicians in outpatient care predicted death in hospital, while living in special accommodation and PADL dependency predicted death outside hospital (Paper I). The results in paper II showed that the study group had a lower QoL than the comparison group. Factors that effected the quality of life negatively were more admissions to hospital and a larger number of health complaints. The analysis showed that factors predicting mortality were older age and more health complaints. The older persons? experience of their situation could be understood as Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life; Maintaining dignity, Enjoying small things, Feelings of ?being at home?, Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death (Paper III). The next of kin's experience of this situation could be understood as Being a companion in the transition towards an inevitable death feeling of having the major responsibility and needing to be acknowledged by professionals, which included the categories: Being a companion on the path to death; Focusing on the needs of the dying person, and making adjustments to everyday life; Feeling the major responsibility, and Gaining strength from support. The results showed that older peoples? last phase of life is coloured by health complaints and frequent visits to hospital, which in turn affects their quality of life. Their own experience of this situation was being in the hands of several care providers, and trying to adjust to the situation. To provide high quality care in this phase it is important to increase the co-operation between various care providers. It also seems important for older people to have the possibility to enjoy the small things in life, being able to still be involved in the world around, and to be supported to complete life in order to achieve peace of mind. As the next-of-kin are involved in the care and are emotionally affected by the situation, their needs for support should also be acknowledged. This means they need to be seen by the professionals as well as by others around in order to retain their sense of participation, even when professional care providers are involved.

[Possible connection between eating disorders and ADHD. Bulimia can relieve ADHD symptoms, central nervous stimulants are of good help]In Sweden the risk for female Anorexia Nervosa and Bulimia Nervosa is estimated to 1%. Females have ten times higher prevalence than males. Attention Deficit Hyperactivity disorder (ADHD) on the contrary has a male 2-3 times dominante. Among adults aprox. 3% has ADHD. ADHD is complex with at least one major associated psychiatric diagnosis. The aim of the present study was to investigate whether clinical findings, not just related to Eating Disorder (ED), could match ADHD as a co-existing diagnosis, as well as to follow the patients the first months after treatment with Methylfenidate had been induced. Five patients, one male and four females, age 18-43, with a history of Eating Disorder (ED) of 5-35 years, were clinically described with DSM-IV diagnoses, treatment regimen and therapeutic outcome. They suffered from disability in normal social functioning, i.e. education, professional career and family life. All of them had symptoms matching ADHD. In this case report the assumtion is made that treatment with Methylfenidate lead to an decrease of ADHD-symptoms as well as typical ED-symptoms, better social functioning and increased quality of life.

Tidigare forskning har visat på en koppling mellan bulimia nervosa och uppmärksamhets- och hyperaktivitetsstörningar (ADHD). Det har föreslagits att ätstörningspatienter med långvarig psykosocial ohälsa och flera samtidigt förekommande psykiatriska tillstånd bör utredas för att utesluta/bekräfta samexisterande, tidigare odiagnostiserad ADHD.Under de senaste åren har studier redovisats där sambandet mellan bulimia nervosa och ADHD diskuteras. Positiv effekt på såväl ätstörningsrelaterade som ADHD-relaterade symtom vid behandling med centralstimulantia har kunnat konstateras.De fall som beskrivs här ger ytterligare stöd för betydelsen av att låta patienter med bulimia nervosa och andra svåra psykiatriska problem genomgå neuropsykiatrisk utredning och i förekommande fall av ADHD få behandling med centralstimulantia.

This study examined the effectiveness of a Swedish parent management training (PMT) intervention for parents of children aged 3 to 10 within the context of regular social service. Self-referred parents of 159 children (aged 3 to 10) with conduct problems were randomly assigned to either 11 practitioner-assisted group sessions (PMT-P), or a single instructional workshop followed by self-administration of the training material (PMT-S), or a waitlist control group. Intent-to-treat analyses showed that both PMT-P and PMT-S improved parent competence and reduced child conduct problems compared to the waitlist at posttest. Both training conditions showed further significant improvements at the 6-month follow-up. In direct comparison, PMT-P was superior to PMT-S on measures of child conduct problems at both posttest and follow-up. Improvement in child conduct was mediated by improvement in parent competencies and homework fidelity. The findings in this study have implications for large-scale dissemination of parent management training through different means of delivery.

The understanding of nature and nurture within developmental science has evolved with alternating ascendance of one or the other as primary explanations for individual differences in life course trajectories of success or failure. A dialectical perspective emphasizing the interconnectedness of individual and context is suggested to interpret the evolution of developmental science in similar terms to those necessary to explain the development of individual children. A unified theory of development is proposed to integrate personal change, context, regulation, and representational models of development.

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

Inte bara den som är sjuk utan även de anhöriga drabbas av psykossjukdomen. Psykiatrireformen som delvis tillkom för att stärka den psykiskt funktionshindrade individens rätt till självbestämmande, blev för många anhöriga en tung börda. De anhöriga känner sig ensamma och utan stöd, med den stress och oro som psykossjukdom innebär. Problemet har emellertid uppmärksammats och år 2009 tillkom en ny lag om utökat stöd för anhöriga till psykiskt funktionshindrade.

Den utveckling mot ökad polarisering som visade
sig på många samhällsområden under 1990-talet
har under 2000-talet mattats av och stabiliserats.
Fler kan försörja sig på sitt arbete men den andel
som under längre tid står både utanför arbetsmarknaden
och utanför de sociala försäkringssystemen
är oförändrad (3–4 procent). Den långvariga fattigdomen
(som varar fem år eller längre) fortsatte
att minska för alla grupper. Även om inkomsterna
ökade för alla var dock inkomstökningarna större
bland höginkomsttagarna än bland dem med låga
inkomster. Därför har inkomstskillnaderna ökat.
Den etniska boendesegregationen i de tre storstadsregionerna
har stabiliserats efter att ha ökat under
hela 1990-talet, medan den ekonomiska segregationen
uppvisar en långsamt ökande trend över tid.
Sedan flera år tillbaka märks en tydlig koppling mellan
etnisk och ekonomisk segregation i storstadsregionerna.
Konjunktursvängningarna har stor betydelse
för utsatta grupper. I högkonjunktur ökar andelen
personer som kan försörja sig på sitt arbete i alla
befolkningsgrupper. Det gör att möjligheterna att
ta sig ur fattigdom och ekonomiskt biståndstagande
ökar. De som är speciellt konjunkturkänsliga
när det gäller nyetablering på arbetsmarknaden är
ungdomar som varken arbetar eller studerar under
övergångsfasen mellan skola och arbete samt nyanlända
invandrare.
Ungdomar, ensamstående mödrar samt invandrare,
främst de nyanlända och de från utomeuropeiska
länder, har hög risk för fattigdom och andra välfärdsproblem.
Välfärdsproblem kan uppträda tillsammans
och en vanlig kombination är ohälsa och
ekonomisk utsatthet. Allvarliga sjukdomar leder
ofta till försämrade ekonomiska villkor och ökad
risk för upplösning av parförhållanden.
Barn till papperslösa föräldrar har en otrygg tillvaro
och de som föds i Sverige folkbokförs inte och
kan inte identifieras genom person- eller samordningsnummer.
Detta begränsar bland annat möjligheterna
till att få kunskap om dessa barns situation
och hälsa.
I Social rapport 2010 presenteras ny kunskap
inom olika områden. För de allra flesta är fattigdom
inte bestående – hälften lämnar den redan
inom ett år. Den som en gång varit fattig löper
däremot stor risk att återigen hamna i fattigdom.
Risken att ärva sina föräldrars fattigdom är bara
något förhöjd i Sverige, däremot är det betydligt
vanligare att barn till höginkomsttagare blir välbärgade
som vuxna.
Utbildningen är en av de viktigaste faktorerna
för ungdomars framtida möjligheter. Ju tidigare
utbildningskedjan bryts desto sämre är framtidsutsikterna.
De grupper som har låga eller ofullständiga
betyg från grundskolan har kraftigt förhöjda
risker för framtida psykosociala problem.
Betygen är särskilt viktiga för utsatta barns framtidsutsikter.
Barn som växer upp i samhällets vård
eller i familjer med återkommande ekonomiskt
bistånd lämnar grundskolan med mycket lägre
betyg än andra barn och har också mycket höga
överrisker för framtida psykosociala problem.

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

Substance-dependent patients (N=29) living with a family member other than a spouse were randomly assigned to equally intensive treatments consisting of either (a) Behavioral Family Counseling (BFC) plus Individual-Based Treatment (IBT) or (b) IBT alone. Outcome data were collected at baseline, post-treatment, and at 3- and 6-month follow-up. BFC patients remained in treatment significantly longer than IBT patients. BFC patients improved significantly from baseline at all time periods on all outcomes studied, and had a medium effect size reflecting better primary outcomes of increased abstinence and reduced substance use than IBT patients. For secondary outcomes of reduced negative consequences and improved relationship adjustment, both BFC and IBT patients improved significantly and to an equivalent extent. The present results show BFC is a promising method for retaining patients in treatment, increasing abstinence, and reducing substance use. These results also provide support for larger scale, randomized trials examining the efficacy of behavioral family counseling for patients living with family members beyond spouses.

Background: Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear. Methods: Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity). Results: Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses. Conclusions: For patients residing in community dwellings, the direct influence of patients cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.

Background: Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear.

Methods: Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity).

Results: Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses.

Conclusions: For patients residing in community dwellings, the direct influence of patients' cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients' ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.

Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö?

Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning - som utvecklar resiliens.

Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv.

Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.

Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö? Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning – som utvecklar resiliens. Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv. Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.

Disorganized/controlling attachment in preschool has been found to be associated with maternal and child maladjustment, making it of keen interest in the study of psychopathology. Additional work is needed, however, to better understand disorganized/controlling attachment occurring as early as age three. The primary aims of this study were to evaluate risk factors and outcomes associated with disorganized/controlling behavior at age three and to evaluate the risk factors and outcomes differentiating the four subtypes of disorganized/controlling attachment. Analyses were conducted with the first two phases of the NICHD Study of Early Child Care and Youth Development, a prospective study of 1,364 children from birth. At 36 months of age, across the attachment-relevant domains of maternal well-being, mother-child interactions, and child social adaptation, the disorganized/controlling group evidenced the most maladaptive patterns in comparison to both secure and insecure-organized groups. At 54 months of age, the disorganized/controlling group displayed the highest levels of internalizing and externalizing behavior problems, as rated by mothers and teachers, and the lowest quality relationships with teachers. Significant differences found among the disorganized/controlling subtypes indicated that the behaviorally disorganized and controlling-punitive subtypes had more maladaptive patterns across variables than did the controlling-caregiving and controlling-mixed subtypes.

Samtal utgör en väsentlig del av kommunernas anhörigstöd och är också avgörande för anhörigas kontakter med professionella inom vård- och omsorgsverksamheter. I rapporten presenteras bland annat forskning om anhörigas behov av samtal som stöd i allmänhet samt i mötet med vård och omsorg

Attention deficit/hyperactivity disorder (ADHD) is a lifespan developmental syndrome that is associated with significant impairments. Although there is strong evidence that ADHD persists into adulthood for a majority of individuals, adults with ADHD are identified and treated at much lower rates than are children with ADHD. Considering the heritability of ADHD, there is an increased likelihood that at least one parent of a child with ADHD will also have ADHD, or exhibit prominent features of the disorder. Parental ADHD also affects help-seeking behavior regarding treatment, as well as follow through on treatment recommendations. There is a paucity of data on parental ADHD and help-seeking among underserved populations. The goal of this paper is to review parental ADHD among underserved groups in terms of factors affecting help-seeking behavior and readiness to engage in care. A model for conceptualizing and addressing issues of readiness for change for parents with ADHD is also proposed.

OBJECTIVES:
To explore whether a group programme for community-dwelling chronic stroke survivors and their carers is feasible in rural settings; to measure the impact of the programme on health-related quality of life and functional performance; and to determine if any benefits gained are maintained.
DESIGN:
Randomized, assessor blind, cross-over, controlled trial.
SETTING:
Rural outpatient.
SUBJECTS:
Twenty-five community-dwelling, chronic stroke survivors and 17 carers of participant stroke survivors.
INTERVENTION:
The intervention group undertook a once-a-week, seven-week group programme combining physical activity, education, self-management principles and a 'healthy options' morning tea. At completion, the control group crossed over to receive the intervention.
MAIN MEASURES:
Stroke Impact Scale (stroke survivors), Health Impact Scale (carers), Six Minute Walk Test, Timed Up and Go, Caregiver Strain Index.
RESULTS:
There were insufficient participants for results to reach statistical significance. However between-group trends favoured the intervention group in the majority of outcome measures for stroke survivors and carers. The majority of measures remained above baseline at 12 weeks post programme for stroke survivor participants. The programme was well attended. Of the seven sessions all participants attended four or more and 88% attended six or seven sessions.
CONCLUSIONS:
This novel programme incorporating physical activity, education and social interaction proved feasible to undertake by a stroke-specific multidisciplinary team in three rural Australian settings. This programme may improve and maintain health-related quality of life and physical functioning for chronic stroke survivors and their carers and warrants further investigation.

This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Both participants significantly increased their target response (body swing) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.

Sleep disturbance is a prevalent and complex issue within the family caregiver population that affects the overall health of the caregivers themselves and their care recipients. However, there is limited evidence to support the efficacy of current practice and a lack of consensus regarding the optimal treatment protocol. This article will provide an overview of sleep research in family caregivers. It explores current trends in sleep research and identifies relevant conceptual and methodological issues, suggesting implications for further research and highlighting the need to improve sleep quality in the caregiver population.

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

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

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

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

Att växa upp med ett funktionshindrat syskon

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

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

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

The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board functionality for standing posture correction (i.e., actively adjust abnormal standing posture) to assessed whether two persons with multiple disabilities would be able to actively correct their standing posture by controlling their favorite stimulation on/off using a Wii Balance Board with a newly developed standing posture correcting program (SPCP). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Data showed that both participants significantly increased time duration of maintaining correct standing posture (TDMCSP) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

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

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

Den här studiens syfte har varit att delge hur personer som bor på demensboende, och hur anhöriga som har närstående som bor på demensboende, upplever det sociala innehållet. Ett innehåll som utgår från faktorer som bemötande, social samvaro, aktiviteter, utevistelse, inflytande, boendemiljö, kan sammanfattas som ett meningsfullt socialt innehåll.

Vidare var syftet att delge några av de synpunkter och reflektioner som framkom från ett seminarium om Socialt innehåll i vardagen som hölls vid Blekinge kompetenscentrum i november 2009. De som deltog var från olika kommuner i Blekinge och hade i sina yrkesroller på olika sätt arbetat med det sociala innehållet för personer med demenssjukdom.

Caregiving for a family member with severe and persistent mental illness places significant demands on the caregiver. Yet caregivers also report personal rewards from the experience. Multiple regression analyses were conducted for 137 parent and sibling caregivers to compare risk and protective factors for well being, subjective burden, and depressive symptoms among respondents. Sibling status predicted increased well-being. Grief and family stress functioned as risk factors for decreased well-being, more depressive symptoms, and increased subjective burden. Pride for the relative contributed to depressive symptoms but protected against burden, and both informal social support and formal support from providers offered a buffer against depressive symptoms for all caregivers. Intervention strategies to promote resilience and address challenges for caregivers are discussed.

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin's experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient's state of mind and care provision). Data also consisted of next-of-kin's self reports concerning health, burden and satisfaction. The result showed that patients' state of mind was mainly positive at baseline but a deterioration was seen over time in the patient's mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients' mood and the caregiver's satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins' general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.

The prevalence of resilience in the presence of military violence and the role of child and family characteristics fostering that resilience were analyzed in a Palestinian community sample using a person-based approach. The participants consisted of a random sample of 640 Palestinian children and adolescents, their parents, and their teachers, all living on the Gaza Strip. A medical examination of the children and adolescents was conducted to assess health status on somatic, sensory, and cognitive domains. The results revealed an equal share of resilient (21%; high level of trauma and low level of disorders) and traumatized (23%; high level of trauma and high level of disorders) children. As hypothesized, characteristics of the resilient group were good parental mental health, supportive parenting practices, good school performance, superior cognitive functioning, good physical health, high body weight, and normal birth weight. Variable-based analyses revealed no support for the hypothesis that these family- and child-related factors protect child mental health, although their direct association was confirmed. The discussion focuses on mechanisms fostering child resilience in war zones.

Two graduate students and a professor/clinical supervisor from the art therapy department at New York University discuss their experiences in the wake of September 11, 2001. The authors describe their personal experiences in working soon after the World Trade Center attacks along with their roles as art therapists at a grief camp for traumatically bereaved children. Clinical work with child victims of the attacks is discussed as well as grief experiences of other children. The article addresses how the language of imagery offers an alternative to words in the expression of pain and loss and a glimpse at the resilience of children when allowed a safe haven for grief work, the emergence of universal symbols after a national tragedy, and the unexpected concomitant healing of the trauma experienced by both therapists and children through symbolic imagery.

Examensarbete våren 2011, socionomprogrammet

The purpose of this two-year ethnographic study was to explore the experiences of parentally bereaved young people who sought support from the Rocky Centre (a pseudonym), a childhood bereavement service in the United Kingdom. Data were generated from extended periods of participant observation and semi-structured interviews with both staff and service users. In this article we focus specifically on the interviews with 13 young people to elucidate the factors that helped them to live with parental bereavement. Of these participants, four had been recently bereaved and nine had experienced the death of a parent over ten years ago. Seven key themes emerged from the analysis of the interview data: expressing emotion, physical activity, positive adult relationship(s), area of competence, friendships/social support, having fun/humour and transcendence. These themes are discussed in turn, and implications for research and practice are addressed.

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

Avhandling för doktorsexamen

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

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

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

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

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

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.

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

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

När IT-stöden i vården utvecklas blir behovet av enhetliga begrepp och termer mera påtagligt. Detta betonas särskilt i såväl InfoVU-projektets slutrapport som i regeringens Nationella IT-strategi för vård och omsorg.

Flera landsting, sjukhus, kliniker och privata vårdgivare har under de senaste åren valt att använda Världshälsoorganisationen WHOs International Classification of Functioning, Disabilty and Health (ICF) som utgångspunkt för gemensamma termer och begrepp, vid införande av elektroniska journalsystem. ICF ingår i WHOs Family of International Classifications med det uttalade syftet att dels komplettera sjukdomsklassifikationen ICD, dels tillhandahålla ett tvärprofessionellt språk för att beskriva hälsa.

Syftet med förstudien är att få besked om ICF kan ligga till grund för fortsatt arbete med struktur och terminologi för ändamålsenlig vård- och omsorgsdokumentation och tydliggöra likheter och skillnader i dagens användning av ICF i e-journaler.

En enkät med förfrågan om man använder ICF skickades till Socialstyrelsens kontaktnätverk för terminologifrågor. Totalt inkom 36 svar varav 29 fördelade sig på 17 olika landsting, två svar kom från kommuner, fyra svar kom från privata företag och ett svar från en yrkesorganisation. I 13 av svaren angavs att man på något sätt använde, eller planerade att använda, ICF som underlag för struktur och innehåll i e-journalen. Ett kontaktnätverk för erfarenhetsutbyte etablerades och två arbetsseminarier genomfördes med syftet att besvara förstudiens frågeställningar.

I Danmark och Norge har man baserat på ICF utvecklat underlag för insamling av individbaserad vård- och omsorgsstatistik.

Inom ramen för InfoVU-projektet genomfördes tre olika försök baserade på ICF: webbaserad checklista för vårdplanering och överföring av information mellan olika vård- och omsorgsgivare, formulering av behov inom kommunal äldreomsorg samt individbaserad verksamhetsuppföljning.

De professionella organisationerna för arbetsterapeuter, sjukgymnaster och sjuksköterskor har, baserat på ICF, utarbetat förslag till en tvärprofessionell klassifikation för insatser och åtgärder, som ska ingå i Socialstyrelsens Klassifikation av vårdåtgärder (KVÅ).

I landstinget i Värmland och i Västmanlands läns landsting har man tagit beslut på att basera e-journalens struktur och innehåll på ICF. I vårdföretaget Kvalita AB är e-journalen sedan flera år tillbaka baserad på ICF. Inom andra landsting och regioner har man tagit delar av ICF som grund för dokumentationen. Rehabmedicin i Jönköping är ett exempel där ICF ligger till grund för den tvärprofessionella rehabiliteringsplanen.

Vid Karolinska Institutet och vid Örebro universitet används ICF i utbildningen av sjukgymnaster och arbetsterapeuter och som ramverk till forskningen inom respektive område.

Socialstyrelsen har beskrivit vård- och omsorgsassistenternas kvalifikationer med hjälp av ICFs struktur och innehåll.

Det råder konsensus, bland representanterna för de olika verksamhetsområden och professioner som deltagit i förstudien, om att ICF är en bra utgångspunkt för att uppnå en tvärprofessionell vård- och omsorgsdokumentation - en dokumentation som språkligt och innehållsmässigt kan vara en brygga mellan socialtjänst och hälso- och sjukvård.

Erfarenheter från drift, försök och andra tester visar att ICF behöver kompletteras. ICF saknar bl.a. begrepp för att beskriva vårdförlopp, t.ex. kontaktorsak och sjukhistoria. Ärftlighet och tidigare erfarenheter av vård och omsorg är annat som inte finns i ICF.

Språkliga anpassningar måste göras för att ICF ska bli användbar i vård och omsorgsdokumentationen, t.ex. genom att långa och otympliga begreppsbenämningar ges enklare, mera hanterbara s.k. "trivialnamn".

Det finns likheter och skillnader i användandet. Omfattningen av ICF begrepp som förts in i journaldokumentationen varierar. I några fall använder man i princip bara ICF-komponenterna på en övergripande nivå, medan andra byggt upp detaljerade sökordsstrukturer (ca 1000 begrepp). Några använder ICF mycket konsekvent medan andra blandar ganska friskt mellan traditionella sökord och ICF.

Förstudien pekar på följande områden som utgångspunkt för fortsatt arbete med ICF som grund för ändamålsenlig vård- och omsorgsdokumentation:

samordna arbetet inom ramen för den nationella informationsstrukturen och det nationella terminologiarbetet
tillvarata erfarenheterna av praktiska tillämpningar och försök
rikta information, utbildning och förankring till vård- och omsorgens huvudmän och deras personal
tillvarata de berörda yrkesorganisationernas kunskap och intresse att medverka till den tvärprofessionella dokumentationen.
Om Sverige beslutar om att gå med i SNOMED CTs internationella utvecklingsarbete och samtidigt väljer att basera den tvärprofessionella dokumentationen på ICF, är det viktigt att se till att ICFs struktur och terminologi införlivas i SNOMED CT

Oberoende av vilken begreppsstruktur som väljs för den tvärprofessionella e-journalen måste det finnas en etablerad organisation för förvaltning och underhåll. Socialstyrelsens termbank kan vara en del av denna resurs.

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

Smaller social networks are associated with poorer health and well-being, especially as people negotiate life transitions. Many older adults, however, tend to have smaller networks, without the expected negative outcomes. To understand better how older adults avoid such outcomes we measured social network management skills, attachment style, and depression among individuals going through a life transition. Older adults who recently became caregivers were compared with young adults who recently transitioned to college. Although older adults initiated fewer and terminated more social ties (being selective in their choice of network members), both age groups had an equal number of close network members. A closer look revealed that securely attached older adults maintained their social ties, and in turn, sustained low levels of depression. These findings emphasize the importance of attachment style and network skills to mental health in general, and among older adults specifically

Fyll-i-böcker om barnens första tid och dina vänner har blivit allt fantasifullare. De hjälper oss att fästa speciella ögonblick på papper, så att vi inte glömmer bort dem i vardagssurret. Men vad händer när vardagen försvinner? När din mamma eller pappa drabbas av en allvarlig sjukdom förändras hela livet. Många ungdomar, som varit med om det har berättat att de inte kunde prata med någon när de hade det som svårast. De som skriver dagbok får en ventil från familjens oro och ett sätt att bearbeta sina egna tankar. Men det är inte så lätt att komma igång med en dagbok.

Dagboken- för dig som är ung och har en sjuk förälder är en hjälp på vägen. Med frågor och rubriker kommer dagboksskrivandet igång. Ett yngre skolbarn kan läsa och skriva tillsammans med en vuxen, för en tonåring kan det vara en hemlig dagbok. Det finns ingen övre åldersgräns. Gott om plats för egna skriverier när du kommit igång, och för bilder.

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

Skriften bygger på rapporten "Program för att förebygga psykiatrisk ohälsa hos barn – en systematisk litteraturöversikt, utgiven 2010 av SBU.

Beskrivning av vilket ansvar förskrivaren har utifrån lagar, förordningar och föreskrifter. Vägledning för förskrivare och annan personal inom hjälpmedelsområdet.

Kartläggningsrapport

Familjecentralens verksamhetsidé för öppna förskolan på familjecentraler – formulerat som en hypotes - har utvärderats steg för steg genom samla in data på sammanlagd sex familjecentraler för att pröva hållbarheten i hypotesen. Utvärderingen visar på ett föräldraskapande bland småbarnsföräldrar genom att de lär sig om barn och föräldraskap, får möjlighet att utöka sitt sociala kontaktnät och att bara vara i en trygg omgivning där socialt stöd finns till hands. De får tillsammans med andra känna sig 'good enough' som en vanlig förälder med ett normalt barn. Professionell följsamhet utmärker personalens arbetssätt. De bedömer den "mognadsgrad" som föräldern befinner sig i för att söka stöd och anpassar sitt förhållningssätt till föräldern genom fysiskt avstånd och djup i samtalet. På så vis kan pedagogiska, sociala och psykologiska mekanismer triggas igång och förklara de resultat som föräldrar upplever för dem själva och deras barn. Artikeln avslutas med en omformulerad hypotes om öppna förskolors verksamhet på familjecentraler

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

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

text och illustrationer: Elisabet Alphonse

barn/ungdom

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

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

from www.oecd.org/health/longtercare/helpwanted

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

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

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

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

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.

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.

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

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

This article presents long-term effects of a randomized trial evaluating 2 standardized, manual-based prevention strategies for families with parental mood disorder: informational lectures and a brief, clinician-based approach including child assessment and a family meeting. A sample of 105 families, in which at least 1 parent suffered from a mood disorder and at least 1 nondepressed child was within the 8- to 15-year age range, was recruited. Parents and children were assessed separately at baseline and every 9 to 12 months thereafter on behavioral functioning, psychopathology, and response to intervention. Both interventions produced sustained effects through the 6th assessment point, approximately 4.5 years after enrollment, with relatively small sample loss of families (<14%). Clinician-based families had significantly more gains in parental child-related behaviors and attitudes and in child-reported understanding of parental disorder. Child and parent family functioning increased for both groups and internalizing symptoms decreased for both groups, with no significant group differences. These findings demonstrate that brief, family-centered preventive interventions for parental depression may contribute to long-term, sustained improvements in family functioning.

There is a need for psychometrically sound measures of children's participation in recreation and leisure activities, for both clinical and research purposes. This paper provides information about the construct validity of the Children's Assessment of Participation and Enjoyment (CAPE) and its companion measure, Preferences for Activities of Children (PAC). These measures are appropriate for children and youth with and without disabilities between the ages of 6 and 21 years. They provide information about six dimensions of participation (i.e. diversity, intensity, where, with whom, enjoyment and preference) and two categories of recreation and leisure activities: (i) formal and informal activities; and (ii) five types of activities (recreational, active physical, social, skill-based and self-improvement). This paper presents information about the performance of the CAPE and PAC activity type scores using data from a study involving 427 children with physical disabilities between the ages of 6 and 15 years. Intensity, enjoyment and preference scores were significantly correlated with environmental, family and child variables, in expected ways. Predictions also were supported with respect to differences in mean scores for boys vs. girls, and children in various age groups. The information substantiates the construct validity of the measures. The clinical and research utility of the measures are discussed.

PURPOSE:
The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of children's participation.
METHOD:
Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth.
RESULTS:
Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge one's ability to develop a coherent body of knowledge about children's participation and the factors that influence it.
CONCLUSION:
Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.

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

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

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.

Välfärdsstatens insatser för personer med funktionshinder och för äldre människor särskiljs sällan i statistik och forskning. När, som i denna artikel, verksamheterna separeras, blir det tydligt att de båda välfärdstjänsterna under senare år har utvecklats åt skilda håll. Ekonomiska resurser, tjänsternas omfattning och personalens arbetsvillkor skiljer sig påtagligt mellan äldre- och handikappomsorgen, och gränsen mellan statens, familjens och marknadens roller har förskjutits på olika sätt.

This popular clinical reference and text provides a multisystems perspective on childhood disability and its effects on family life. The volume examines how child, family, ecological, and sociocultural variables intertwine to shape the ways families respond to disability, and how professionals can promote coping, adaptation, and empowerment. Accessible and engaging, the book integrates theory and research with vignettes and firsthand reflections from family members.

Objectives
Although partner violence during pregnancy has serious consequences for women's health, little is known about how physical partner violence may change throughout pregnancy transitions. Even less is known about changes in sexual and psychological partner violence throughout pregnancy transitions. In addition, few research studies on pregnancy and partner violence have examined these changes among both victimized women (i.e., women who report physical partner violence at the beginning of their pregnancies) and comparison women (i.e., women who do not report physical partner violence during this same time period).

Methods
This longitudinal research study investigated 76 women's experiences with partner violence beginning 1 year before their pregnancies, and continuing throughout their pregnancies until 1 year after delivery. Four structured interviews were administered to participants, and information was collected concerning the women's partner violence experiences. Hierarchical linear modeling was used to determine whether there were statistically significant differences between the violence rates experienced by the victimized women relative to the comparison women at each time period.

Results
The results show that partner violence rates do change throughout pregnancy transitions, and that these changes are seen for both victimized and comparison women.

Conclusions
Pregnant and postpartum women are in need of comprehensive services that promote both their health and safety. This study offers care providers clinical implications for their work with pregnant and postpartum women, as well as policy and research recommendations.

Aim.  This paper is a report of a study to explore different perceptions of psychiatric care among foreign- and Swedish-born people with psychotic disorders.

Background.  Research from different countries reports a high-incidence of psychosis among migrants. The risk-factors discussed are social disadvantages in the new country. To understand and meet the needs of people from different countries, their perspective of psychiatric care must be illuminated and taken into consideration.

Method.  A phenomenographic study was conducted in 2005–2006 using semi-structured interviews with a convenience sample of 12 foreign-born people and 10 Swedish-born people with psychosis.

Findings.  Three categories were identified: personal and family involvement in care; relating to healthcare staff; and managing illness and everyday life. Foreign-born people differed from Swedish-born people in that they struggled to attain an everyday life in Sweden, relied on healthcare staff as experts in making decisions, and had religious beliefs about mental illness. Among Swedish-born people, the need for more support to relatives and help to perform recreational activities was important.

Conclusion.  It is important to identify individual perceptions and needs, which may be influenced by cultural origins, when caring for patients with psychosis. Previous experience of care, different ways of relating to staff, and individual needs should be identified and met with respect. Social needs should not be medicalized but taken into consideration when planning care, which illustrates the importance of multi-professional co-operation.

This paper considers children's right to personal assistance according to 9th
§ 2, Act concerning Support and Service for Persons with Certain
Functional Impairments (referred to as the Act henceforth). The purpose is
to investigate the legal relation between the society's responsibility for
disabled children according to the Act and parent's responsibility according
to 6th chapter 2nd § the Book on Parents and Children (referred to as the
Book henceforth). The main interest is to look deeper into the way the rule
of law is being handled in situations concerning these matters.
In the first part of the paper the method is described. I discuss the concept of
rule of law, I describe the background of the regulations of current interest
and I investigate the current rules concerning children's right to personal
assistance and assistance benefit. Then an empirical investigation follows in
which I have revised in what way three different county administrative
courts have assessed the parental responsibility in cases concerning personal
assistance and assistance benefit. Finally the results of the investigation are
analysed with focus on the rule of law in its formal meaning. I also discuss
what the consequences of the conflict between the parental responsibility
and the society's responsibility according to the Act might be.
The Act was grounded to give persons with certain functional impairments a
right to apply for measures which are enumerated in the Act. The measure
of personal assistance has made a great effort in improving life for many
persons with functional impairments, but there are several problems in the
application of the law. The act is clear to the extent that what is decisive is
that the individual has need of the measure and that this need is not already
satisfied in any other way. The fact that it takes a judgement of a person's
individual need does bring difficulties in the adjudication. Children's right
to personal assistance is affected of the fact that it is regarded that parents
have a responsibility for their children according to the Book, but
unfortunately it is unclear how this parental responsibility shall be
considered, with respect to extent and contents. The answer cannot be found
in the text of the law nor the preparatory work. Some guidance is given in a
legal case from the Supreme Administrative Court in year 1997, which
stipulates that parental responsibility should not be regarded respecting the
fundamental needs of a twelve year old. The fundamental needs are: Help
with personal hygiene, get dressed and undressed, help related to meals,
help to communicate with others and help which requires detailed
knowledge of the person with functional impairments. Besides that, what
should be considered is that the appraisal of the parental responsibility
should be preceded by a comparison to the normal parental responsibility of
a child at the same age without any functional impairment. Only needs in
addition to the normal parental responsibility constitute a right to assistance.
1
The empirical investigation reveals great deficiencies respecting the motives
of the courts' judgements. In most cases, there is only a short statement that
a parental responsibility exists, but there is never any reasons stated to the
judgement respecting extent and contents. This ought to be contrary to the
courts' obligation to justify decisions and represents a large shortage
respecting the rule of law for the individual. The most important conclusion
in this essay is that it needs more guidance for the decision-makers
respecting children's right to personal assistance and assistance benefit. This
can be done either through more case law or on the government's or
legislator's initiative. The main thing is that it actually happens. In this way
the conflict between the society's responsibility according to the Act and the
parental responsibility can be able to find a solution with the result of an
improved rule of law for children with functional impairments and their
legal representatives.

Den övergripande handikappolitiska målsättningen är att främja jämlikhet i levnadsvillkor och full delaktighet i samhällslivet för människor med funktionshinder. Assistansreformen, som är en av denna handikappolitiks viktigaste åtgärder, har inneburit att en ny yrkeskategori vuxit fram – personliga assistenter. Det beräknas att ungefär 50 000 personer arbetar som personliga assistenter i Sverige. Inför framtiden uppskattas behovet öka till cirka 60 000.

Den här studiens syfte är att utifrån svensk forskning och annan empirisk kartläggning sammanställa och analysera de yrkesmässiga problem som personliga assistenter möter i sitt arbete. Häri ingår att kartlägga frågeställningar relaterade till de personliga assistenternas yrkesroll och identifiera områden som bör utvecklas. I rapporten återges studier av personliga assistenters arbetssituation och upplevelser av yrkesområdet. Aktuell lagstiftning refereras i förekommande fall i fotnot men då rapportens syfte inte är att återge denna eller andra regler kring området hänvisar författaren till andra källor för sakkunnig återgivning av dessa.

Många personliga assistenter berättar om arbetsglädje, givande samvaro med den assistansanvändare de bistår, variationsrika arbetsdagar och om upplevelser av ett viktigt och meningsfullt arbete. Den särskilda arbetssituationen som ofta inbegriper en arbetsplats i brukarens hem, en nära och intim samvaro samt insyn i privata relationer innebär dock att yrkesrollen innehåller en rad potentiella svårigheter. Samtidigt som många vittnar om tillfredsställelse med arbetet som personlig assistent har yrket låg status, en låg lönebild, betraktas som ett genomgångsyrke och omfattas av rekryteringsproblem. Det sistnämnda har även påverkat vilka områden som forskningen främst berört. Vidare förekommer det sällan en uppdelning på olika anordnare utan kooperativ, kommunala och privata anordnare beskrivs gemensamt.

I myndighetsrapporter och forskningssammanställningar framträder tydligt att personlig assistans är ett bristyrke såväl som ett genomgångsarbete. Vid en granskning av anställningsförhållanden, anställningstrygghet, tjänstgöringsgrad, arbetstider och lön framträder brister som ger upphov till oro bland de personliga assistenterna samt innebär en osäker anställningssituation. De personliga assistenterna uppfattar ibland en oklar ansvarsuppdelning mellan arbetsgivare och arbetsledning, vilket kan innebära utsatthet och ett svagt stöd i arbetssituationen. Studier av arbetslednings-/chefsuppgifter som introduktion, arbetsbeskrivning, utvecklingssamtal, handledning, fortbildning, personalmöten och kvalitetsarbete visar att de personliga assistenternas arbetsförhållanden skiljer sig markant åt. Här framkommer att det hos många assistansanordnare finns anledning till organisatoriska förbättringar.

Arbetsmiljöverket har bedrivit en relativt omfattande arbetsmiljötillsyn riktad gentemot assistansanordnare. Genom att arbetsområdet är nytt har det funnits oklarheter om ansvar och arbetsformer, framförallt till följd av att arbetsplatsen i många fall är förlagd till assistansanvändarens hem. I många fall saknas rutiner för ett fungerande arbetsmiljöarbete. Det handlar om systematisk information, riskinventering, uppföljning etc. Genom de inspektioner som genomförts inom vissa distrikt har information och förtydliganden kunnat spridas vilket påverkat arbetsmiljöarbetet och arbetsmiljön på ett positivt sätt.

Förutom de organisatoriska bristerna kan arbetsmiljöproblemen hänföras dels till risker för fysisk skada till följd av tunga lyft och belastning, dels till psykosociala arbetsmiljörisker till följd av exempelvis oklara arbetsbeskrivningar, kommunikationsproblem eller oklarheter i kontakten med assistansanvändare eller anhöriga samt otillräckligt arbetsledarstöd. Särskilt framstår de personliga assistenternas ensamarbete, utan kontakt med kollegor, som ett av de största arbetsmiljöproblemen. Detta kan kombineras med att assistenter upplever hot och våld i sitt arbete samt att assistansanvändarnas livsstil kan orsaka konkreta arbetsmiljöproblem för den personliga assistenten. Det framgår i ett flertal studier av personlig assistans att assistenterna uppfattar sitt yrke som betydelsefullt. Här innefattas en tillfredställelse med att medverka till att förbättra livssituationen för assistansanvändaren samt att det är en privilegierad arbetssituation att kunna ägna sig åt en person, utan kraven att på kort tid behöva räcka till för många personers hjälpbehov.

Just arbetet med en enskild person kan dock även innebära nackdelar ur ett arbetstillfredsställelseperspektiv. Det kan upplevas som påfrestande att umgås intensivt med en person hur väl man än kommer överrens. Många assistenter upplever även att en stor del av arbetet innebär väntan och passivitet vilket kan vara nog så påfrestande. En nära relation kan innebära svårigheter att skilja mellan arbete och fritid och mellan yrkesroll och privatliv. Vidare är det inte ovanligt att assistansanvändarens funktionshinder innebär en försämring över tid och det är känslomässigt svårt att se hur en person man kommit nära försämras.

I en analys skildras vad forskning och andra empiriska kartläggningar belyst avseende den personliga assistentens relationer till olika personer och grupper som man möter i sin yrkesutövning. I fokus är i första hand relationen till assistansanvändaren, vilket innefattar diskussion kring arbetsuppgifter, fördelning av arbetet och arbetsbeskrivning. Det framgår att för den personliga assistenten kan det vara av stor vikt att arbetsuppgifterna är tydligt klargjorda då assistenterna annars kan uppfatta sig som utnyttjade. Vidare skildras asymmetrin i förhållandet mellan assistansanvändare och assistent, där det i flera studier framgår att brukaren är beroende av sin assistent men att även assistenten befinner sig i ett sårbart läge genom assistansanvändarens arbetsledning och självbestämmande över av vem, hur och när assistansen ska utföras.

För många assistenter ingår även motivationsarbete i arbetsuppgifterna. Att arbeta för en assistansanvändare med begränsad autonomi kan vara en utmaning. Assistenterna ställs inför uppgiften att styra brukaren och samtidigt balansera detta gentemot rätten till självbestämmande. Det framgår i studierna att det kan vara frustrerande när assistansanvändarens preferenser är skilda från assistentens. Här framträder även att assistenterna upplever svårigheter med att hantera de krav som ställs på sjukgymnastik och aktiviteter från anhöriga eller andra yrkesgrupper när dessa förväntningar går emot assistansanvändarens vilja.

Ett särskilt stycke tar upp anhörigassistentens situation. Här belyser studierna att funktionen som assistent till en nära anhörig innebär en särskild assistansroll. Många anhörigassistenter upplever sig inte heller som i första hand personliga assistenter. Förutom att arbetsbördan ofta är stor och går utöver den egentliga arbetstiden känner dessa assistenter såväl tillfredsställelse med att kunna bistå som omgivningens misstro och en oro inför framtiden. I övrigt behandlas assistentens relation till assistansanvändarens familj, assistans till barn, relationen till anhöriga, mellan assistenter, till arbetsgivare, till god man, andra yrkeskategorier och till allmänheten. Det framgår av forskning, myndighetsrapporter och citat från intervjuer med personliga assistenter att yrkesrollen personlig assistent har låg status. Allmänhetens bild, säger en assistent, är att vem som helst kan arbeta som personlig assistent. De låga formella kraven på utbildning, efterfrågan på assistenter, lönen, ryktet om att assistansarbetet är ett tillfälligt genomgångsarbete och arbetets karaktär med personlig omvårdnad och hemarbete förstärker bilden. Beskrivningarna av den personliga assistenten som brukarens armar och ben, redskap, en tyst skugga som smälter in i tapeten etc. bidrar också till en negativ yrkesbild i en tid då framåtanda, självständighet och initiativförmåga premieras och betraktas som eftersträvansvärda egenskaper inom arbetslivet i övrigt.

I rapportens avslutande kapitel sammanfattas de i forskningsstudierna och övriga empiriska kartläggningar identifierade utvecklingsområdena inom personlig assistans som yrke. Utan inbördes ordning är det som här lyfts fram otrygghet i anställningen, ensamarbete, lön, osäkerhet vad gäller arbetsuppgifter, arbetsmiljö, arbetsgivaransvar och arbetsledning, svårigheter att hålla isär yrkesutövande och privatliv, tjänstgöringsgrad, fortbildning, yrkesstatus samt yrkesidentitet.

Avslutningsvis diskuteras utbildning för personliga assistenter, en eventuell profilering samt kunskapsuppbyggnad som områden som bör utvecklas. Utbildning till personlig assistent är en omtvistad frågeställning. Då det bedrivs ett antal utbildningar på gymnasienivå, som arbetsmarknadsutbildning, vid folkhögskolor och som uppdragsutbildning vid universitet finns det all anledning att närmare granska detta område. I den fortsatta diskussionen om relevant utbildning för personliga assistenter borde dessa utbildningar inventeras och utvärderas. Dessutom föreslås att en eventuell profilering av assistansyrket ska övervägas utifrån dels den kompetenshöjning det innebär samt att detta skulle öppna upp för utvecklingsmöjligheter inom yrket. Slutligen konstateras att det finns en begränsad vetenskaplig kunskapsproduktion kring personlig assistans. Utifrån det stora antal personer som berörs som assistansanvändare, anhöriga och personliga assistenter är detta anmärkningsvärt och otillfredsställande.

I denna rapport analyseras de yrkesmässiga problem som personliga assistenter möter i sitt arbete utifrån befintlig svensk forskning och annan empirisk kartläggning.

The brain is the key organ of the response to stress because it determines what is threatening and, therefore, potentially stressful, as well as the physiological and behavioral responses which can be either adaptive or damaging. Stress involves two-way communication between the brain and the cardiovascular, immune, and other systems via neural and endocrine mechanisms. Beyond the "flight-or-fight" response to acute stress, there are events in daily life that produce a type of chronic stress and lead over time to wear and tear on the body ("allostatic load"). Yet, hormones associated with stress protect the body in the short-run and promote adaptation ("allostasis"). The brain is a target of stress, and the hippocampus was the first brain region, besides the hypothalamus, to be recognized as a target of glucocorticoids. Stress and stress hormones produce both adaptive and maladaptive effects on this brain region throughout the life course. Early life events influence life-long patterns of emotionality and stress responsiveness and alter the rate of brain and body aging. The hippocampus, amygdala, and prefrontal cortex undergo stress-induced structural remodeling, which alters behavioral and physiological responses. As an adjunct to pharmaceutical therapy, social and behavioral interventions such as regular physical activity and social support reduce the chronic stress burden and benefit brain and body health and resilience.

OBJECTIVE:
Children and adolescents of the Gaza Strip have been subjected to continuous violence since the eruption of the second Intifada (Uprising). Little is known, however, about the psychological effects of this violence on children and adolescents of Gaza. Thus, the purpose of the present investigation was to evaluate and describe the psychological effects of exposure of war-like circumstances on this population.

METHOD:
Participants for this study were 229 Palestinian adolescents living in the Gaza Strip who were administered measures of post-traumatic stress disorder (PTSD), depression, anxiety, and coping.

RESULTS:
Of the 229 participants, 68.9% were classified as having developed PTSD, 40.0% reported moderate or severe levels of depression, 94.9% were classified as having severe anxiety levels, and 69.9% demonstrated undesirable coping responses. A canonical discriminant analysis revealed that adolescents diagnosed with PTSD tended to be those who reported the highest levels of depression, anxiety, and positive reappraisal coping, and the lowest levels of seeking guidance and support coping.

CONCLUSIONS:
These results indicate that a significant proportion of Palestinian adolescents living in the Gaza Strip are experiencing serious psychological distress.

OBJECTIVE:
Children and adolescents of the Gaza Strip have been subjected to continuous violence since the eruption of the second Intifada (Uprising). Little is known, however, about the psychological effects of this violence on children and adolescents of Gaza. Thus, the purpose of the present investigation was to evaluate and describe the psychological effects of exposure of war-like circumstances on this population.

METHOD:
Participants for this study were 229 Palestinian adolescents living in the Gaza Strip who were administered measures of post-traumatic stress disorder (PTSD), depression, anxiety, and coping.

RESULTS:
Of the 229 participants, 68.9% were classified as having developed PTSD, 40.0% reported moderate or severe levels of depression, 94.9% were classified as having severe anxiety levels, and 69.9% demonstrated undesirable coping responses. A canonical discriminant analysis revealed that adolescents diagnosed with PTSD tended to be those who reported the highest levels of depression, anxiety, and positive reappraisal coping, and the lowest levels of seeking guidance and support coping.

CONCLUSIONS:
These results indicate that a significant proportion of Palestinian adolescents living in the Gaza Strip are experiencing serious psychological distress.

OBJECTIVE: The objective of this study was to determine the effects of counseling and support on the physical health of caregivers of spouses of people with Alzheimer disease. METHODS: A randomized controlled trial, conducted between 1987 and 2006 at an outpatient research clinic in the New York City metropolitan area compared outcomes of psychosocial intervention to usual care. Structured questionnaires were administered at baseline and regular follow-ups. A referred volunteer sample of 406 spouse caregivers of community dwelling patients with Alzheimer disease enrolled over a 9.5-year period. Enhanced counseling and support consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad-hoc telephone counseling. Indicators of physical health included self-rated health (SRH) of caregivers and the number of reported illnesses. RESULTS: Controlling for baseline SRH (mean: 7.24), intervention group caregivers had significantly better SRH than control group caregivers based upon model predicted mean scores four months after baseline (6.87 versus 7.21), and this significant difference was maintained for two years (6.70 versus 7.01). The effect of the intervention on SRH remained significant after controlling for the effects of patient death, nursing home placement, caregiver depressive symptoms and social support satisfaction. Similar benefits of intervention were found for number of illnesses. CONCLUSION: Counseling and support preserved SRH in vulnerable caregivers. Enhancing caregivers' social support, fostering more benign appraisals of stressors, and reducing depressive symptoms may yield indirect health benefits. Psychosocial intervention studies with biological measures of physical health outcomes are warranted.

This article describes primary outcomes of the development and field-testing of a curriculum Promoting learning through active interaction with 27 infants and their caregivers and early interventionists in 2 different states. The curriculum was designed to provide a systematic approach to supporting interactions with infants who have sensory impairments and complex multiple disabilities and who are at the preintentional level of communication. Participating infants had both a visual impairment and hearing loss and additional disabilities. Their families represented diverse socioeconomic, educational, and cultural backgrounds, and participating early interventionists varied widely in their qualifications. Results indicate that a diverse group of families used the strategies successfully and found them to be helpful in supporting their children 1/4s interactions and communication development. The article outlines key components of the curriculum and discusses evaluation data on the basis of caregiver feedback on use of strategies and analysis of videotaped observations on the caregivers 1/4 use of sensory cues with their infants. Copyright © 2007 Wolters Kluwer Health | Lippincott Williams & Wilkins.

Self-determination and control over one's own life is critical for all individuals, including
individuals with developmental disabilities (Kennedy, 1996). Self-determination provides the
conceptual foundation for policy, vision, and social systems in the field of developmental
disabilities. As the field has evolved from early assumptions about "handicap" and "disability"
the central role of the individual has been captured by the construct of "self-determination." A
need exists to link the vision with both existing empirical evidence, and overt description of the
practices that will help us better realize a society in which self-determination represents the
lifestyle of all citizens. Promoting self-determination has become best practice in the education
of students with intellectual and developmental disabilities. The purpose of this practice guide
is to review and summarize existing practices that enhance self-determination and the
empirical support associated with those practices. Self-determination offers a broad vision with
personal implications. It is a construct with multiple facets and as such there will be no single
practice or package of practices for achieving self-determination that applies to all people or all
contexts. We offer in this practice guide first a summary of the way in which self-determination
has been conceptualized for the purposes of this Practice Guide and by the Gateway to SelfDetermination
project, then an organizational framework for linking practices that will enhance
self-determination, and finally a brief summary of the research literature supporting use of
these practices. Our hope is that this guide will not only provide recommendations for
educators, but also prove useful in fostering research, policy, and systems efforts to expand the
role of self-determination in the lives of people with disabilities

In this study, we investigate the feasibility and acceptability of a 9-month psychoeducational multi-family group (PMFG) intervention for adolescents who are at ultra-high-risk (UHR) for developing psychosis. The treatment programme was adapted from those previously shown to be effective in patients with established psychotic illness, but emphasizes content relevant to adolescence and to a pre-onset phase of illness. Participants report that psychoeducational presentations are highly useful, they attend the PMFG group sessions regularly and report feeling comfortable in meetings and benefiting from them, and adolescents demonstrate improvement in symptoms and functional outcome. This study was not a randomized controlled trial and multiple interventions were introduced simultaneously; thus, changes in outcome cannot be attributed to the PMFG intervention per se. Nonetheless, these results establish the acceptability of PMFG to adolescents and families, and encourage further research into the potential positive impact of PMFG with this at-risk population.

OBJECTIVE:
To examine the 1-year prevalence of psychotic symptoms and schizophrenia in nondemented 95-year-olds, and to examine the relation between psychotic symptoms and other psychiatric symptoms, sensory impairments, and cognitive functioning.
PARTICIPANTS:
The representative sample was 95-year-olds living in Göteborg, Sweden (N = 338). Individuals with dementia were excluded (N = 175), leaving 163 subjects for this study.
DESIGN:
This was a cross-sectional population study, including psychiatric and physical examinations, cognitive tests, and interviews with close informants.
MEASUREMENTS:
Diagnosis of schizophrenia, psychotic symptoms, paranoid ideation and dementia according to Diagnostic and Statistical Manual of Mental Disorders, Third Revision (DSM-III) were measured. Cognitive function was tested with the Mini-Mental State Exam. Other psychiatric symptoms were measured by the Comprehensive Psychopathological Rating Scale.
RESULTS:
The one-year prevalence of any psychotic symptom was 7.4% (95% confidence interval [CI] 3.8-12.5); including hallucinations 6.7% (95% CI 3.4-11.8) and delusions 0.6% (95% CI 0.0-3.4). Four (2.4%) individuals fulfilled DSM-III-R criteria for schizophrenia. Individuals with psychotic symptoms or paranoid ideation did not differ regarding cognitive functioning compared with individuals without these symptoms. Individuals with hallucinations and paranoid ideation had an increased frequency of previous paranoid personality traits compared with individuals without psychotic symptoms and paranoid ideation. No individuals with psychotic symptoms had a formal thought disorder, incoherence of speech, or flat affect.
CONCLUSION:
The authors found a high prevalence of psychotic symptoms, paranoid ideation, and schizophrenia in the very old. Most of the symptoms were elucidated by information from key informants, illustrating the importance of including relatives in the evaluation of elderly persons.

High rates of child abuse and neglect occur in many families in which either or both parents abuse illicit drugs. This study reports on the results of a randomized controlled trial with families having a parent on methadone maintenance (N = 64), in which an intensive, home-based intervention, the Parents Under Pressure (PUP) program, was compared to standard care. A second brief intervention control group of families received a two-session parenting education intervention. The PUP intervention draws from the ecological model of child development by targeting multiple domains of family functioning including the psychological functioning of individuals in the family, parent–child relationships, and social contextual factors. Mindfulness skills were included to address parental affect regulation, a significant problem for this group of parents. At 3- and 6-month follow-up, PUP families showed significant reductions in problems across multiple domains of family functioning, including a reduction in child abuse potential, rigid parenting attitudes, and child behavior problems. Families in the brief intervention group showed a modest reduction in child abuse potential but no other changes in family function. There were no improvements found in the standard care group and some significant worsening was observed. Results are discussed in terms of their implications for improved treatment.

High rates of child abuse and neglect occur in many families in which either or both parents abuse illicit drugs. This study reports on the results of a randomized controlled trial with families having a parent on methadone maintenance (N = 64), in which an intensive, home-based intervention, the Parents Under Pressure (PUP) program, was compared to standard care. A second brief intervention control group of families received a two-session parenting education intervention. The PUP intervention draws from the ecological model of child development by targeting multiple domains of family functioning including the psychological functioning of individuals in the family, parent–child relationships, and social contextual factors. Mindfulness skills were included to address parental affect regulation, a significant problem for this group of parents. At 3- and 6-month follow-up, PUP families showed significant reductions in problems across multiple domains of family functioning, including a reduction in child abuse potential, rigid parenting attitudes, and child behavior problems. Families in the brief intervention group showed a modest reduction in child abuse potential but no other changes in family function. There were no improvements found in the standard care group and some significant worsening was observed. Results are discussed in terms of their implications for improved treatment.

The purpose of this study was to ascertain the effectiveness of the Relational Psychotherapy Mothers' Group (RPMG), a supportive parenting group intervention for substance abusing women. Sixty mothers receiving RPMG were compared to 67 women receiving recovery training (RT); both treatments supplemented treatment in the methadone clinics. At the end of the 6-month treatment period, RPMG mothers showed marginally significant improvement on child maltreatment (self-reported) and cocaine abuse based on urinalyses when compared with RT mothers; notably, children of RPMG mothers reported significantly greater improvement in emotional adjustment and depression than children of RT mothers. At 6 months follow-up, however, treatment gains were no longer apparent. Overall, the findings suggest that whereas supportive parenting interventions for substance abusing women do have some preventive potential, abrupt cessation of the therapeutic program could have deleterious consequences.

Thousands of American children are at risk for negative outcomes because of maternal substance abuse. Estimates are that as many as four million American women regularly use illicit drugs (SAMHSA, Office of Applied Studies, National Survey on Drug Use and Health, 2002/2003); about 80% of these women are likely to be mothers of at least one child (National Center on Addiction and Substance Abuse, 1996). Drug abusing mothers show elevated levels of psychiatric disturbance—particularly depression and anxiety—as well as significant problems with child rearing (Beckwith, Rozga, & Sigman, 2002; Luthar, Cushing, Merikangas, & Rounsaville, 1998; Najavits, Weiss, & Shaw, 1997; Singer et al., 1997). It is not surprising that their children also display several difficulties, with as many as 65% manifesting a psychiatric disorder by the teen years (Luthar et al., 1998).

Although their multiple vulnerabilities indicate that addicted mothers need multifaceted therapeutic interventions, drug treatment programs traditionally have entailed scant attention to their personal and parenting needs (Luthar & Suchman, 2000a). These programs were originally developed for men and then used with women as well, with little consideration of the unique challenges and needs of the latter, particular in terms of their roles as mothers (cf. Hogan, 1998; Millar & Stermac, 2000; Westermeyer & Boedicker, 2000). In the last 2 decades, however, there have been several efforts to develop and test such multi-pronged programs (Camp & Finkelstein, 1997; Catalano, Gainey, Fleming, Haggerty, & Johnson, 1999). In this paper, we focus on one such intervention, which showed promise in early pilot testing (Luthar & Suchman, 2000a), the Relational Psychotherapy Mothers' Group (RPMG), with the goal of assessing effectiveness relative to alternative forms of treatment.

Developed for heroin-addicted mothers with children up to 16 years of age, RPMG is a supportive psychotherapy aimed at facilitating optimal parenting among at-risk mothers, and it is offered over 24 weekly group sessions that supplement standard methadone treatment. Conceptually, the treatment was developed within the scaffolding of the literature on risk and resilience, with (a) consideration of processes operating at multiple levels, related to the individual, family, and community, and (b) a focus on both positive and negative forces among at-risk groups (Luthar & Cicchetti, 2000).

At the individual level, the RPMG intervention is grounded in the view that attention to addicted mothers' personal distress levels is critical to improve their parenting behaviors. At the same time, the treatment entails deliberate attempts to harness mothers' tendencies toward guilt (regret at their past "errors") as catalysts for change toward optimal parenting. Thus, the first half of the 24 sessions in this treatment are directly focused on the women's own functioning, addressing topics such as coping with anger, depression, and the constructive use of guilt.

Vulnerability factors at the familial level span multiple forms of dysfunctional parenting that many of these women experienced as children, ranging from inadequate nurturance to physical or sexual abuse (El-Bassel, Gilbert, Schilling, & Wada, 2000; Harmer, Sanderson, & Mertin, 1999; Hogan, 1998; Najavits et al., 1997). Obviously, these experiences pose risks for their own parenting. Salient among the protective forces conversely, is concern about the well-being of their children along with both the desire and potential to benefit from supportive parenting interventions (Hogan, 1998; Luthar & Suchman, 2000a). Accordingly, the second 12 of the 24 RPMG sessions are focused on specific parenting issues, such as alternatives to physical punishment, age-appropriate limits in discipline, and warmth in parenting.

At the level of the community, a pronounced risk is exposure to stigma (El-Bassel et al., 2000; Eliason & Skinstad, 1995; Hogan, 1998; Luthar et al., 1998; Najavits et al., 1995); in clinical settings, the fallout of such stigmas is wariness of strictly didactic treatment approaches that seem to emphasize addicted women's deficits as parents (Levy & Rutter, 1992). The effort in RPMG, therefore, is to discuss child-rearing issues in the context of nonjudgmental, supportive experiences using insight-oriented therapy. A second community-level risk is dysfunctional social networks: isolation is a serious problem, and close relationships that do exist reflect various difficulties such as domestic violence (Amaro & Hardy-Fanta, 1995; Brunswick & Titus, 1998; El-Bassel et al., 2000; Harmer et al., 1999; Hogan, 1998; Wald, Harvey, & Hibbard, 1995). Accordingly, RPMG was developed as a supportive treatment, with the use of a group format designed to help women develop their interpersonal skills, to perceive the universality of dilemmas pertaining to roles as women and mothers (e.g., Yalom, 1985), and to benefit from mutually supportive interpersonal networks.

In terms of therapeutic characteristics, four features define RPMG as an intervention. The first is a supportive therapists'stance. Encompassing the Rogerian constructs of acceptance, empathy, and genuineness, this is essential to foster a strong therapeutic alliance and to meet mothers' unmet developmental needs (e.g., trust vs. mistrust in relationships). The second is an interpersonal, relational focus (see Klerman, Weissman, Rounsaville, & Chevron, 1984), a component addressing the interpersonal isolation and stress figuring prominently in addicted women's lives. The third feature is discovery-based, insight-oriented parenting skill facilitation. Rather than "instructing" mothers about appropriate parenting, role plays and brainstorming exercises are used to encourage them to explore their own parenting strategies and to guide them toward optimal approaches (for further description of the RPMG intervention, see Luthar & Suchman, 1999, 2000a).

With regard to features as a group treatment, RPMG is restricted to mothers and to female therapists to optimize women's comfort in discussing sensitive issues such as their own victimization. To accommodate the frequently chaotic schedules of patients in methadone treatment, group membership is open or rotating. Although closed-group membership can promote group cohesion and trust, open enrollment provides the opportunity to engage women in treatment when each of them is highly motivated to join. Sessions are led by a graduate level clinician with expertise in working with families as well as addiction-related issues.1 All sessions are semistructured, and a therapists' manual (Luthar, Suchman, & Boltas, 1997) provides a detailed outline for addressing each session topic.

With regard to children's age span, the group intervention was intentionally designed to accommodate mothers of children birth to 16 years for the following reasons. First, a broad age span allowed mothers a natural context within which to share experience and provide guidance to one another, to ask each other questions about upcoming developmental stages, and to share advice with newer mothers about earlier phases of development. Second, our aim was to provide parental guidance that could apply broadly to parenting across different phases of development rather than focusing more specifically on any one stage of child development. For example, although limit setting strategies vary with children's age, limit setting can be more generally understood and applied as a means to maintaining a calm family environment in which the parent maintains control and order. Our aim was to discuss themes such as this one that were more or less universal to all stages of parenting so that mothers could adopt new views about the parent-child relationship and apply them broadly with all children in their families. In contrast to behavioral parent training programs that aim to teach parents to manage children's misbehavior (see, e.g., Catalano et al., 1999; Kumpfer, 1998), this approach aimed to promote mothers' understanding of their children's needs more broadly, including the need for support, nurturance, structure, limits, emotional regulation and security.

Go to:
The Pilot Study
The RPMG treatment was originally designed, manualized, and tested as part of a 3-year psychotherapy development project (Luthar & Suchman, 2000a). Opioid abusing women who received this intervention along with standard treatment in methadone programs were compared with those receiving standard treatment alone. Standard treatment entailed participation in weekly, 1-hr counseling groups and periodic meetings with case managers to secure basic needs (e.g., housing or welfare benefits). The counseling groups were led by certified drug clinicians and focused on information on the unfolding of addictions and pitfalls of addictive behaviors.

Effects of the RPMG intervention were evaluated in terms of the women's functioning as parents, their psychological functioning, and adjustment of their children. The single most critical domain was the mother's risk for maltreating behaviors, a serious problem among addicted parents (Ammerman, Kolko, Kirisci, Blackson, & Dawes, 1999; Dore & Doris, 1998; Dunn et al., 2002; Rogosch, Cicchetti, Shields, & Toth, 1995); this was assessed via the women's own reports and also by children's reports for children over 7 years of age. Also assessed were women's positive parenting behaviors in terms of the affective quality of the relationship: involvement and communication with their children. The women's psychosocial adjustment was assessed in terms of satisfaction in their roles as mothers as well as depressive symptoms, and their children's psychosocial functioning (e.g., internalizing, externalizing, and clinical, school, and personal maladjustment) were evaluated by both mothers' and children's reports. Finally, data on the women's drug use were also examined, as improvements in addicted women's psychosocial functioning can carry over to their substance use as well (e.g., Najavits, Weiss, Shaw, & Muenz, 1998).

In addition to testing effectiveness, also examined in the pilot study was whether RPMG did, in fact, provide therapeutic components distinct from those in standard drug counseling. A Therapist Adherence Rating Scale was developed, with items based on the defining features of each of the two interventions (RPMG and standard drug counseling).

Results showed that at the end of the 24-week treatment, mothers receiving RPMG demonstrated lower risk for child maltreatment (by mothers' and children's reports), greater involvement with children, and more positive psychosocial adjustment, than women who received methadone counseling alone. Small to moderate effect sizes for group differences were also found for mothers' and children's reports of child maladjustment. Notably, urinalyses indicated that RPMG mothers showed greater improvements in opioid use over time than comparison mothers. At 6 months posttreatment, RPMG recipients continued to be at an advantage, although the magnitude of group differences was lower. Finally, the Therapist Adherence Scale had good psychometric properties and did discriminate between the treatments.

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

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

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

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

FEX A, FLENSNER G, EK A-C and SÖDERHAMN O. Nursing Inquiry 2011; 18: 336-347 Living with an adult family member using advanced medical technology at home An increased number of chronically ill adults perform self-care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self-care at home, either using long-term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent-care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent-care and transition, which may have an influence on the self-care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context.

As primary caregivers of children with mental health problems, mothers face challenges that put them at risk for depression, which is rarely identified or addressed. The aims of this paper were to (a) identify mean differences among demographic, stressor, threat, and resource variables specified in a theoretical model and thought to be associated with maternal depressive symptoms and (b) determine how much variability in depressive symptoms is explained by these variables. High levels and prevalence of depressive symptoms were found within a quality of life study that these data were drawn from. Of 139 mothers participating in this study, 58% had a score of 16 or greater on the CES-D indicating moderate to high levels of depressive symptoms. Significant differences were found between mothers with higher versus lower levels of depressive symptoms for 11 of the 18 variables. Hierarchical regression was used to examine the variance explained in depressive symptoms based upon the conceptual model with 4 composite variables. Income (step 1), behavioral problems (step 2), threat appraisal (step 3), and resource appraisal (step 4) combined explained 42% of the variance.

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person's need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers' self-image were connected to intimacy, decreasing personal space and experiences such as "forbidden thoughts". The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Barnens hälsa påverkas redan tidigt i livet av föräldrarnas livsvillkor. Låg social status, brist på vänner och stress tidigt i livet leder till hälsoskillnader. Familjecentraler med en öppen förskola och förebyggande socialt arbete är en tidig insats och en lågriskstrategi som riktar sig till alla. Den har goda förutsättningar för att stärka föräldrarnas tillit och gemenskap med andra och kan bidra till att minska hälsoskillnader genom att främja barnens hälsoutveckling. Syftena med utvärderingen av de 16 familjecentralerna var att undersöka i vilken mån besökarna är representativa för befolkningen i upptagningsområdet och av vilka anledningar föräldrarna besöker öppna förskolan på familjecentralen. Jämförelse mellan befintlig befolkningsdata i upptagningsområdena och föräldrabesökares bakgrundsdata visar att familjecentralen i huvudsak når en representativ del av befolkningen. Föräldrar använder sig av familjecentralen för att få råd, utbyte av erfarenheter, barnens skull och att umgås med andra. I synnerhet för invandrare har familjecentralen stor betydelse för att komma in i det svenska samhället.

Den 1 januari 2010 infördes en ny bestämmelse i hälso- och sjukvårdslagen som ger hälso- och sjukvårdens verksamheter och dess personal skyldighet att särskilt beakta barnets behov av information, råd och stöd när en förälder har en psykisk sjukdom, är allvarligt somatiskt sjuk eller missbrukar. Detsamma gäller när en förälder oväntat avlider. Den nya lagstiftningen stärker barns rätt och ställer krav på att ett familjeorienterat synsätt utvecklas inom verksamheter som möter vuxna patienter inom de ovan nämnda grupperna.

Stiftelsen Allmänna Barnhuset och Socialstyrelsen har 2008 -2010 drivit ett gemensamt projekt i syfte att skaffa kunskap om vilka åtgärder som behöver vidtas för att lagen ska få avsedd effekt. Denna bok är en rapport från det arbete och vi hoppas att den kan inspirera, stimulera och visa på möjliga vägar för lokalt och regionalt utvecklingsarbete i syfte att bättre uppmärksamma barn som anhöriga.

I boken framkommer också vilka svårigheter som finns och vikten av ett gemensamt ansvarstagande av de huvudmän som möter barn i dessa situationer.

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

Socialstyrelsen har haft i uppdrag att utveckla två nationella kompetenscentrum för att samla och
sprida kunskaper samt stimulera utvecklingen inom områdena demens och demensvård samt
anhöriga till äldre. År 2008 startade Svenskt demenscentrum (SDC), med huvudmännen Stiftelsen
Silviahemmet och Stiftelsen Stockholms läns Äldrecentrum, och Nationellt kompetenscentrum
Anhöriga (NkA) med Fokus Kalmar, FoU Sjuhärad – Välfärd Högskolan i Borås,
Humanvetenskapliga inst. & eHälsoinstitutet vid Linnéuniversitetet, Anhörigas Riksförbund,
Hjälpmedelsinstitutet, Länssamordnarna för anhörigstöd i Norrland och Landstinget i Kalmar län
som huvudmän.
Socialstyrelsen har låtit utvärdera centrumens verksamheter och utsåg Linköpings universitet som
utvärderare i en lärande utvärdering. Uppdraget har letts av professor Lennart Svensson.
Upplägget av utvärderingen har skett i samverkan med Socialstyrelsen och centrumens
ledningar/medarbetare. Metoderna var kvalitativa intervjuer och enkäter. Tre analysseminarier har
anordnats. Fokus i frågeställningarna har legat på om centrumen uppnått: en kvalitetsmässig
substans i innehållet, en strategisk påverkan gentemot beslutsfattare, en spridning och ett
synliggörande av sitt material, samt att agera som intermediär mellan intressenter inom området.
Enkäterna besvarades av 800 (NkA:s) respektive 2 450 (SDC:s) personer, de flesta personal i
kommunal social-/omsorgsförvaltning. Största andelarna var för NkA anhörigkonsulenter och för
SDC deltagare i webbutbildningen Demens ABC. Två tredjedelar (i båda enkäterna) läste
nyhetsbreven, som över 95 % hade nytta av. Båda centrumens hemsidor och informationsmaterial
var i hög grad uppskattades. En stor majoritet ansåg att centrumens fortsatta existens var
nödvändig.
Utvärderingen fann att båda centrumen lyckats väl i spridning och synliggörande av sina
verksamheter. Konferenser och mötesdagar hade arrangerats. Informationsmaterial av hög
kvalitet hade spridits i hela landet. Hemsidorna var lättillgängliga och informativa.
NkA hade på en landsomfattande nivå byggt upp Blandade lärande nätverk vars verksamhet
byggde på att anhöriga, politiker, tjänstemän och anhörigsamordnare möttes och diskuterade
temafrågor. Nätverken inom respektive temaområden samordnades av en forskare och en
praktiker som tillhandhöll relevant och lättillgänglig forskning och som samlade in och
sammanställde kunskaper från diskussionerna.
SDC hade nått ut på en nationell nivå med sin utbildning Demens ABC, baserad på
Socialstyrelsens Nationella riktlinjer för vård och omsorg vid demenssjukdom. Demens ABC har
i dagsläget genomgåtts av nästan 25 000 personer. Utbildningen har också bidragit till en stor
spridning då deltagarna ofta börjar prenumerera på SDC:s nyhetsbrev.
Politiker ute i landet var delvis nådda, bl.a. genom centrumens deltagande på partiernas kommunoch
landstingsdagar, men inte i stor omfattning. Dock fanns det riksdagspolitiker som lyssnade på
båda centrumen och även äldreministern sökte aktivt del av informationen. Flertalet intervjuade
ansåg att den största nyttan centrumen hittills lett till var att frågan lyfts och kommit på agendan
även bland höga beslutsfattare. En strategisk påverkan kan därmed anses vara uppnådd, vilket
även syns i att de båda centrumen fått nya uppgifter. Både SDC och NkA hade svårigheter att nå
ut till landstingen, särskilt till läkarkåren. Tydliga strategier för framtiden att nå ut till grupper
som läkare, studerande och politiker fanns dock hos båda centrumen.
Forskningsanknytningen i informationsmaterialet var god hos båda centrumen och kontakten med
forskningen inom respektive område var mycket väl tillgodosedd. Inom båda centrumen fanns
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forskare, även om forskning inte ingick i uppdragen. Den djupare förståelsen för frågorna fanns
på så sätt att flera medarbetare hade en bakgrund ute i verksamheter. Utvärderingens fann därmed
en hög grad av substans i centrumens innehåll och arbete. Båda centrumen har en stark vilja att
påverka för att demensvård respektive anhörigstöd ska bli välkända ämnen för politiker och
allmänhet samt för att vård och stöd ska fungera bättre ute i praktiken. Framförallt har de en vilja
att hjälpa andra, t.ex. ideella organisationer, att påverka genom att bidra med tillförlitlig kunskap.
Utvärderingens samlade bedömning av svar i intervjuer och enkäter var att de positiva svaren om
båda centrumen var helt överskuggande, det framkom få negativa uppfattningar. En negativ sak
var emellertid att flera intervjuade och svarande på enkäten saknade information om andra
anhöriggrupper (än anhöriga till äldre) från NkA. En stark opinion fanns för att NkA:s uppdrag
skulle utökas till att gälla samliga anhöriga. Utvärderingen delar den uppfattningen till fullo då
det finns risk för förvirring och oklarheter hos allmänhet och kommun-/landstingspersonal när de
inte hittar den önskade informationen om anhöriga hos ett kompetenscentrum för anhöriga.
Utvärderingen ser flera framgångsfaktorer som förklarar de båda centrumens framgångar:
En kunnig och engagerad ledning och involverade medarbetare i båda fallen.
Ett öppet klimat som stimulerar till egna initiativ.
Utvecklade kontakter med relevanta aktörer, till stora delar skapade redan
före start vilket gett vinster i form av bra kontaktnät för påverkan.
Förmågan att skapa legitimitet hos forskarsamhället.
En stor efterfrågan på kunskap från omgivningen, där centrumen fyllt ett
vakuum som intermediärer mellan forskning och praktik.
Förmågan att ständigt lära av gjorda erfarenheter och att vidareutveckla
verksamheten.
Socialstyrelsens goda stöd har gett en bra bas för uppbyggnaden av centrumen.
Centrumen saknar inte framtida utvecklingsområden. NkA har ett utvecklingsområde i att utöka
sina målgrupper till samtliga anhöriga. Båda centrumen har en stor utmaning inför framtiden i att
påverka för att forskningen styr mot att de många vita fläckarna på kunskapskartan blir fyllda.
Påverkan på det formella utbildningssystemet i att där få in utbildningar om demens och anhöriga
är en viktig uppgift för framtiden. NkA ser en utmaning i att lyfta frågan till samhällsnivån för att
nå en anhörigvänlig vård och omsorg och påverkan av arbetslivet. SDC ser en utmaning i att med
fortsatt hög kvalitet kunna möta upp en ökad efterfrågan av rådgivning.
Båda verksamhetsledarna ansåg att de fått ett gott och tillräckligt stöd från Socialstyrelsen under
etableringsfasen av centrumen. Kontakten hade varit mycket god, det hade varit ett "äkta
samarbete" med en bra dialog. I framtiden, ansåg centrumen, borde dock finansieringen höjas och
indexregleras så att mer insatser kunde utföras där de såg stora behov. Utvärderingen finner att
Socialstyrelsens agerande under hela fasen bör utgöra en god modell inom myndigheten – och
även spridas som ett lärande exempel till andra myndigheter.
Utvärderingens övergripande slutsats är att det finns goda skäl för att de båda centrumen ska få
fortsätta med, och vidareutveckla, sina verksamheter i ett mer långsiktigt perspektiv, vart och ett
efter sina olika förutsättningar och med delvis skilda strategier. Båda har svarat väl upp mot det
stora trycket från samhället på mer kunskap och de kommer att behövas framöver eftersom dessa
frågor fortsätter att vara aktuella i allt högre grad.

Socialstyrelsens nationella riktlinjer för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd innehåller 43 rekommendationer. I tillstånds- och åtgärdslistan ovan finns samtliga tillstånd och åtgärder presenterade.

Centrala rekommendationer som medför ekonomiska och organisatoriska konsekvenser

Socialstyrelsen bedömer att rekommendationerna om samordnade åtgärder, familjeinterventioner, psykologisk behandling och arbetslivsinriktad rehabilitering är de som får störst konsekvenser. Dessa rekommendationer kommer få såväl ekonomiska som organisatoriska konsekvenser, då de ställer krav på förändringar av hälso- och sjukvårdens och socialtjänstens organisationsstruktur samt investeringar i personal och kompetens.

Socialstyrelsens bedömningar av rekommendationernas ekonomiska och organisatoriska konsekvenser har utgått från den verksamhet som hälso- och sjukvården och socialtjänsten bedriver i dag. Informationen om vilka åtgärder som utförs och i vilken utsträckning dessa utförs är dock ofta bristfällig, vilket gör bedömningen svår.

Flera åtgärder som Socialstyrelsen rekommenderar har utvecklats internationellt och är nya för psykiatrin och socialtjänsten. Under arbetet med framtagandet av de nationella riktlinjerna för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd har det blivit tydligt att det finns ett behov av att utveckla en organisation och modeller för hur ny kunskap ska kunna omsättas i praktiken.

Samordnade åtgärder tidigt – och även senare

Socialstyrelsen rekommenderar samordnade åtgärder som omfattar samhällsbaserad uppsökande vård och omsorg enligt den så kallade ACT-modellen (Assertive Community Treatment) med tillägg av familjeinterventioner och social färdighetsträning för personer som är nyinsjuknade i psykossjukdom. Dessa åtgärder tycks ge positiva effekter på möjligheten att ha ett självständigt boende och att personen tillbringar färre dagar på sjukhus.

Socialstyrelsen rekommenderar även så kallad intensiv case management enligt ACT-modellen för personer med schizofreni eller schizofreniliknande tillstånd som är högkonsumenter av vård, riskerar att ofta bli inlagda på psykiatrisk vårdavdelning eller avbryter vårdkontakter. Jämfört med sedvanlig behandling minskar åtgärden antalet vårdtillfällen, dagar på sjukhus, risken för hemlöshet och arbetslöshet samt ger en större stabilitet i boendet.

Rekommendationerna kräver ökad samverkan mellan hälso- och sjukvården (psykiatrin) och socialtjänsten. På kort sikt innebär rekommendationen ökade kostnader för både hälso- och sjukvården och socialtjänsten, framför allt för utbildning, handledning och eventuellt personaltillskott. På längre sikt bedömer Socialstyrelsen dock att kostnaderna kommer vara oförändrade eller lägre jämfört med i dag bland annat genom minskade kostnader för sjukhusvård.

Familjeinterventioner

Socialstyrelsen rekommenderar familjeinterventioner till personer med schizofreni eller schizofreniliknande tillstånd som har kontakt med sin familj eller närstående. Insatsen minskar återfall och inläggning på sjukhus och tycks förbättra personens sociala funktion och livskvalitet samt det känslomässiga klimatet i familjen.

Rekommendationen medför ökade kostnader till en början för kompetensutveckling för personalen och ett eventuellt ökat personalbehov. På sikt bedömer Socialstyrelsen dock att kostnaderna bli oförändrade eller lägre jämfört med i dag som en följd av en mer samordnad och flexibel verksamhet, och som en följd av ett minskat antal återfall och inläggningar på sjukhus.

Tillgång till psykologisk behandling med kognitiv beteendeterapi

Socialstyrelsen rekommenderar att hälso- och sjukvården erbjuder individuell kognitiv beteendeterapi (KBT) till personer med schizofreni eller schizofreniliknande tillstånd med så kallade kvarstående symtom. Huvudskälet till rekommendationen är att behandlingen visar positiva effekter på kvarstående symtom och på centrala problem för individen. Hälso- och sjukvården kan även erbjuda musikterapi när personer har behov av så kallade icke-verbala terapiformer.

Socialstyrelsen är medveten om att det råder stor brist på personal med adekvat kompetens inom kognitiv beteendeterapi. Rekommendationen ställer krav på att varje landsting och region gör en analys av nuläget när det gäller tillgång till personal med rätt kompetens och hur man utformar effektiva behandlingar. Socialstyrelsen bedömer att kostnaderna för hälso- och sjukvården ökar på kort sikt, men kostnaderna förväntas sedan återgå till befintliga nivåer alternativt till en lägre nivå.

Arbetslivsinriktad rehabilitering i samverkan

Socialstyrelsen rekommenderar arbetslivsinriktad rehabilitering enligt IPS-modellen, då metoden är bättre än arbetsförberedande träningsmodeller när det gäller att skaffa arbete åt personer med schizofreni eller schizofreniliknande tillstånd som har en vilja och motivation till ett arbete.

Ansvaret för arbetslivsinriktad rehabilitering ligger i dag hos flera olika myndigheter i Sverige. Det är inte givet hur den rekommenderade åtgärden ska placeras in i det svenska vård- och stödsystemet. Det finns därmed ett behov av att fortsätta med försöksverksamheter i samverkan mellan olika berörda myndigheter. En förutsättning för att kunna genomföra rekommendationen är att hälso- och sjukvården och socialtjänsten samverkar och har kontakt med Arbetsförmedlingen och Försäkringskassan.

Socialstyrelsen bedömer att kostnaderna till en början kommer att öka för hälso- och sjukvården och socialtjänsten i och med att personalen behöver fortbildning och handledning samt en förändrad organisation. På sikt kommer dock kostnaderna för hälso- och sjukvård, socialtjänst och andra delar av samhället att minska.

Brist på datakällor försvårar uppföljningen

Socialstyrelsen har utarbetat 22 indikatorer för uppföljning inom det psykosociala området för personer med schizofreni eller schizofreniliknande tillstånd.

Ett stort problem för uppföljningen inom det psykosociala området är att det i dag saknas datakällor. Bristen på datakällor gör att uppföljningen av de åtgärder som rekommenderas i riktlinjerna till stor del får begränsas till om den psykiatriska verksamheten och socialtjänsten i dag kan erbjuda dessa insatser. En utveckling av datakällor pågår och på sikt kommer sådana indikatorer att utformas som kan ge kunskap om de processer som används på det psykosociala området och vilka resultat de ger.

Några indikatorer som föreslås är i nuläget inte möjliga att följa på nationell nivå. De bör dock börja användas i uppföljningen av den psykiatriska verksamheten och socialtjänstens verksamhet för personer med psykisk funktionsnedsättning. Sammanlagt har 15 nationella indikatorer tagits fram för uppföljning av den psykiatriska verksamheten och 12 nationella indikatorer för socialtjänstens verksamhet för personer med psykisk funktionsnedsättning. Dessutom föreslås fyra mer generella indikatorer för att spegla resultatet av huvudmännens åtgärder på det psykosociala området.

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.

This study aimed to analyse the outcomes of an educational intervention for family members living with a person with bipolar disorder. A longitudinal study was conducted comprising a 10-session educational intervention designed for families with members in outpatient mental health care. Thirty-four family members agreed to participate. Data were collected on five occasions, at baseline and during a 2-year follow-up through self-assessment instruments: the Carers of Older People in Europe Index, the Jalowiec Coping Scale-40, the Sense of Coherence questionnaire and the Social Adaptation Self-evaluation Scale. The results showed that the condition had a considerable negative impact on the family members as carers, but the educational intervention increased their understanding, which facilitated the management of their lives. A significant improvement in stress management was seen over time and social functioning was retained. The study showed that families living with one member with bipolar disorder benefited from the educational intervention in terms of increasing understanding of the condition and reducing stress. Mental health care needs to develop educational interventions further and offer the families support to strengthen their ability to manage with the situation.

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Objective

This study investigated the impact of parental ADHD symptoms on the peer relationships and parent-child interaction outcomes of children with ADHD among families completing a randomized-controlled trial of Parental Friendship Coaching (PFC) relative to control families.

Method

Participants were 62 children with ADHD (42 boys; ages 6–10) and their parents. Approximately half of the families received PFC (a 3-month parent training intervention targeting the peer relationships of children with ADHD) and the remainder represented a no-treatment control group.

Results

Parental inattention predicted equivalent declines in children's peer acceptance in both treatment and control families. However, treatment amplified differences between parents with high versus low ADHD symptoms for some outcomes: Control families declined in functioning regardless of parents' symptom levels. However, high parental inattention predicted increased child peer rejection and high parental inattention and impulsivity predicted decreased parental facilitation among treated families (indicating reduced treatment response). Low parental symptoms among treated families were associated with improved functioning in these areas. For other outcomes, treatment attenuated differences between parents with high versus low ADHD symptoms: Among control parents, high parental impulsivity was associated with increasing criticism over time whereas all treated parents evidenced reduced criticism regardless of symptom levels. Follow-up analyses indicated that the parents experiencing poor treatment response are likely those with clinical levels of ADHD symptoms.

Conclusions

Results underscore the need to consider parental ADHD in parent training treatments for children with ADHD.

Keywords: ADHD, parent training, social functioning, parental psychopathology, parent-child relationship

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

The aim of this study was to describe the present and past experiences of 14 siblings from five families in terms of having a brother or sister with autism and mental retardation. Personal interviews were conducted with the siblings before their brothers or sisters were moved to a newly opened group home. Qualitative content analysis was used for the analysis of the transcribed texts. The analysis resulted in seven content categories: precocious responsibility, feeling sorry, exposed to frightening behavior, empathetic feelings, hoping that a group home will be a relief, physical violence made siblings feel unsafe and anxious, and relations with friends were affected negatively. The conclusion is that these siblings' experiences revealed stressful life conditions. Counseling for the family and for siblings is recommended to help them deal with their feelings and problems. For the siblings in these five families, a group home was a relevant alternative as a temporary or permanent placement for the child with autism and mental retardation.

The challenge to define and refine evidence-based practice in the education of students with profound and multiple disabilities has emerged as an important focus of research and discussion over the past decade. In this paper, a model of educational ecologies serving members of this group is introduced as a means of linking individual abilities, human contexts and the wider research and practice agenda in this field. Two particular themes that are addressed are the important contribution of behavior state assessment and recognition of the interdependence of social and communicative factors in educational settings. Implications of this model are evaluated in terms of future priorities in staff development, inclusive practices in curriculum and instructional practices as well as broader quality of life considerations. © Springer Science+Business Media, LLC 2007.

Syftet med denna bok är att ge vuxna en bättre förståelse av barns sorgereaktioner i olika utvecklingsstadier. Boken tar upp barns tankar och reaktioner när döden drabbar föräldrar, syskon, vänner, far- och morföräldrar. Boken ger många praktiska råd och principer för hur man på ett bra sätt tar hand om barnen när den närmaste familjen drabbas av ett dödsfall. Ska barnen få se den döde? Ska de få vara med på begravningen? Hur ska man göra för att barnen ska få utlopp för tankar och känslor? Hur gör man i klassen eller på förskolan? Denna reviderade och utvidgade upplaga ersätter författarens tidigare utgivna bok Barn i sorg (1990). Boken är lämplig för föräldrar, släktingar, lärare och andra vuxna som möter sörjande barn.

Background: Communication difficulties due to aphasia following stroke are particularly stressful to caregivers.
Objective: To examine the impact of a psychoeducation programme on caregivers' burden and stress and communication between the caregiver and aphasic stroke patient.
Design: Randomized wait-list controlled trial with immediate or three-month delayed treatment.
Setting: Three public hospital rehabilitation services in Sydney, Australia.
Subjects: Thirty-nine caregivers of aphasic stroke patients, up to 12 months post stroke: 19 given immediate treatment and 20 in a delayed treatment control group.
Interventions: Four-session weekly caregiver programme that included elements of education, support and communication skills conducted by a speech pathologist, social worker and clinical psychologist.
Main measures: The General Health Questionnaire (GHQ) was used to measure caregiver stress, the Relatives' Stress Scale was used to measure caregiver burden and a communication questionnaire was designed specifically for this project.
Results: Thirty-one caregivers completed the study. Caregivers in the immediate treatment group had significant reductions in GHQ measured stress (GHQ mean (SD) at baseline= 6.26 (5.67), GHQ post treatment 3.21 (SD 4.20), P = 0.006). There was no improvement in wait-listed caregivers. Improvement was not maintained at three-month follow-up. There were no significant effects of the programme on communication skills or on caregiver burden.
Conclusions: Stroke caregiver support, education and training programmes have short-term effects on caregiver stress levels but are likely to require ongoing involvement to maintain their effect.

The overall aim of the doctoral thesis was to elucidate the meaning of living with traumatic
brain injury (TBI) for people with TBI and for their close relatives. The data were collected by
means of qualitative research interviews with people with moderate or severe TBI (I, III, IV)
and their close relatives (II, III), and were then analyzed using a phenomenological
hermeneutic interpretation (I, II, IV) and thematic content analysis (III).
This study shows that living with moderate or severe TBI means living with a perpetually
altered body that changed the whole life and caused deep suffering, where feelings of shame
and dignity competed with each other. People with TBI lost their way and struggled to
achieve a new normalcy. Losing one's way included experiences of waking up to unknown,
missing relationships and experiencing the body as an enemy. Struggles to attain a new
normalcy included searching for an explanation, recovering the self, wishing to be treated with
respect, and finding a new way of living. Feeling well, for people with moderate or severe
TBI, means that the unfamiliar life with TBI has become familiar. This included finding
strength, regaining power over everyday life, being close to someone and being good enough.
People with TBI felt well when they reconciled themselves with the circumstances of their
life, that is, they formed a new entity in that life where they had lost their complete health.
Living with a person with moderate or severe TBI means that close relatives fight not to lose
their foothold when it becomes essential for them to take increased responsibility. They
struggled with their own suffering and compassion for the person with TBI. Close relatives'
willingness to fight for the ill person derived from their feeling of natural love and the ethical
demand to care and be responsible for the other. Natural love between the person with TBI
and close relatives and other family members gives them the strength to fight.
People with TBI and their close relatives had experiences of being avoided, being ruled by the
authorities, being met with distrustfulness and being misjudged. They also searched for answers
and longed for the right kind of help. People who listened to them, believed them and tried to
understand and help them were appreciated.
This thesis shows that people with TBI and their close relatives experienced deep suffering
where they struggled between evil and good, suffering and desire. They had moments of
hopelessness but they strived to become familiar with a life with TBI. Their suffering was
alleviated when they were able to understand their experiences, experienced love and had
someone to share their suffering with, and felt satisfaction and happiness. People with TBI and
their close relatives have experiences of suffering of care. It is crucial that they meet
professionals who have knowledge about TBI and really understand the suffering it causes for
them as individuals and as a family

Syftet var att utveckla en grund för utrednings- och bedömningsinstrument som LSS-handläggare kan använda i utredningsarbetet.

Vi sökte svar på följande frågor: vad var LSS–lagstiftarens intentioner med personkrets 3 och insatsen personlig assistans för barn, hur långt föräldraansvaret sträcker sig, samt hur handläggarna i Kraftfält norr i dagsläget utreder och bedömer inom de båda områdena. Instrumenten kan förhoppningsvis bidra till att handläggarna upplever ökad trygghet och därmed öka rättssäkerheten.

Fem LSS-handläggare i Kraftverk Norr fick under en period testa två utarbetade grundförslag till instrument därefter genomfördes individuella intervjuer med handläggarna.

Resultatet visade att inga specifika utarbetade instrument fanns att tillgå och handläggarna uppgav att de har behov av utrednings- och bedömningsinstrument. Handläggarna uttryckte att det fanns svårigheter vid utredningarna: för personkrets 3 framförallt att bedöma när kriterierna är "stora, betydande och omfattande behov", för personlig assistans till barn påtalade handläggarna svårigheter att bedöma föräldraansvar och vilka behov utöver som kan berättiga till insatsen. Det framkom även att det fanns behov av ytterligare kunskap om barns utveckling. Instrumenten ska ses som en grund för handläggare att använda vid utredningsarbete.

Fortsättningsvis krävs att handläggarna söker vägledning i domar och rättspraxis samt får juridisk handledning inom området. Vår förhoppning är att instrumenten ses som ett första steg till ett fortsatt utvecklingsarbete inom Kraftfält norr.

Av Christina Nilsson, Mona Holmström, Marianne Forsgärde handledare

PURPOSE. Effective delivery of dysphagia exercises requires intensive repetition, yet many brain injury survivors demonstrate difficulty adhering to home programmes. The Television Assisted Prompting (TAP) system provides a novel method to deliver intensive in-home therapy prompts. Specific research questions compared the effectiveness of the TAP system to typical practice on programme adherence, satisfaction and caregiver burden. METHOD. A within-participant alternating treatment design with random assignment of treatment condition compared exercise programme adherence across TAP and typical practice delivery conditions, replicated across three participants. Data included quantitative programme completion rates, satisfaction survey reports and caregiver burden questionnaire results, as well as qualitative interview findings. RESULTS. A large treatment effect was demonstrated for two participants; exercise programme completion rates increased by 6-17 times typical practice levels with the TAP system. TAP supported sustained practice over the course of the experiment for the third participant despite minimal differences between conditions. Participants reported high satisfaction and endorsed the TAP system. There was no significant change in caregiver burden. CONCLUSION. The TAP system provided a novel assistive tool to support home programme completion of intensive exercise regimens for clients with cognitive impairment and care providers with significant burden. Future research must ensure continued development of a reliable and intuitive system.

OBJECTIVE: The Teaching, Raising, And Communicating with Kids (TRACK) program was a longitudinal pilot-trial intervention designed to assist mothers living with HIV (MLHs) to disclose their serostatus to their young children (age 6-12 years). METHOD: MLH and child dyads (N = 80 dyads) were recruited and randomized to intervention or control; the intervention group had 3 individual sessions and 1 follow-up phone call. The sessions focused on preparing MLHs for disclosure through behavioral exercises using Derlega's model (V. J. Derlega, B. A. Winstead, K. Greene, J. Serovich, & W. N. Elwood, 2004) of HIV disclosure. Both MLHs and their child were assessed across multiple time points (baseline, 3, 6, and 9 months) regarding disclosure of HIV status, and specific outcome variables (i.e., relationship context, mother's health, child's mental health, and family outcomes). RESULTS: MLHs in the intervention group were 6 times more likely to disclose their HIV status than those in the control group (OR = 6.33, 95% CI [1.64, 24.45]), with 33% disclosing in the intervention group compared with 7.3% in the control group. MLHs in the intervention group showed increases in disclosure self-efficacy across time, increased communication with their child, and improvement in emotional functioning. Children of MLHs in the intervention group exhibited reductions in depression and anxiety, and increases in happiness. CONCLUSIONS: TRACK was found to be successful in helping MLHs disclose their HIV status to their children, with positive outcomes noted for both MLHs and their children.

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

OBJECTIVES: We examined the associations between social support and mental and behavioral outcomes among adolescents whose parents were infected with or died of HIV/AIDS. METHODS: Families (parents who were HIV infected and their adolescent children) were randomly assigned to a coping skills intervention or a standard care group. After completing the intervention, the parents and adolescents were assessed for 2 years. RESULTS: Adolescents who had more social support providers reported significantly lower levels of depression and fewer conduct problems; adolescents who had more negative influence from role models reported more behavior problems. Reductions in depression, multiple problem behaviors, and conduct problems were significantly associated with better social support. CONCLUSIONS: Our findings underscore the complex relations between social support and mental and behavioral outcomes among adolescents affected by HIV/AIDS. Future prevention programs must focus on increasing social support to reduce negative outcomes among adolescents affected by HIV/AIDS as well as the need to reduce influence from negative role models.

Abstract
OBJECTIVES:
We examined the associations between social support and mental and behavioral outcomes among adolescents whose parents were infected with or died of HIV/AIDS.
METHODS:
Families (parents who were HIV infected and their adolescent children) were randomly assigned to a coping skills intervention or a standard care group. After completing the intervention, the parents and adolescents were assessed for 2 years.
RESULTS:
Adolescents who had more social support providers reported significantly lower levels of depression and fewer conduct problems; adolescents who had more negative influence from role models reported more behavior problems. Reductions in depression, multiple problem behaviors, and conduct problems were significantly associated with better social support.
CONCLUSIONS:
Our findings underscore the complex relations between social support and mental and behavioral outcomes among adolescents affected by HIV/AIDS. Future prevention programs must focus on increasing social support to reduce negative outcomes among adolescents affected by HIV/AIDS as well as the need to reduce influence from negative role models.

AIM:
To explore first-time primary caregivers' experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.
BACKGROUND:
Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians. Design.  Qualitative interpretative phenomenological analysis.
METHOD:
A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data.
RESULTS:
Two competing themes were identified in the data, highlighting caregivers' contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs' concerns and young people's requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff.
CONCLUSION:
First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers' commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally.
RELEVANCE TO CLINICAL PRACTICE:
Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for clinical staff in family interventions and to familiarise them with legislation and mental health policies relating to carers.

OBJECTIVE: Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions. METHOD: Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis. RESULTS: Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security. SIGNIFICANCE OF RESULTS: The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

Several studies of frail older people have focused on the relationship between formal and informal care, while others have examined the character of inter-generational relationships. Yet knowledge of the significance of the informal-support networks of older people who receive formal care is still scarce. The aim of this paper was to explore how older Swedes who receive formal elder-care experienced their informal support networks. The findings presented emanate from a qualitative case study. The structural, interaction and functional dimensions of the support networks were the main analytical tools. In the study population, the size of the formal support network varied from one to 12 people (or categories of people), and the size of the informal support network varied from one to six people (or categories of people). The main results demonstrate the importance of informal support with reciprocal relationships, and the value of confidants and emotional support, both of which contribute to feelings of belonging, security and wellbeing. A well-functioning formal and informal support network allows individuals to maintain autonomy in old age, even when they have to depend on help from others

Dependency Drug Courts (DDCs) are a growing method of addressing the functional status and reunification success of families involved in child welfare and affected by substance use disorders. Despite widespread interest in DDCs, few evaluations have appeared in the literature to help inform the discussion about their effectiveness. This article provides a description of various types of DDCs and reports 24-month reunification rates from the Sacramento DDC. Results indicated that DDC participants had higher rates of treatment participation than did comparison participants. In addition, at 24 months, 42% of the DDC children had reunified versus 27.2% of the comparison children. There were no differences in treatment completion or child reunification rates by parent's primary drug problem. Rates of recidivism were extremely low for both the DDC and comparison groups and did not differ significantly. The results of the present study are encouraging and suggest that rigorous, controlled studies are merited to further evaluate the effectiveness of DDCs.

OBJECTIVE:
The worldwide prevalence estimates of attention deficit hyperactivity disorder (ADHD)/hyperkinetic disorder (HD) are highly heterogeneous. Presently, the reasons for this discrepancy remain poorly understood. The purpose of this study was to determine the possible causes of the varied worldwide estimates of the disorder and to compute its worldwide-pooled prevalence.

METHOD:
The authors searched MEDLINE and PsycINFO databases from January 1978 to December 2005 and reviewed textbooks and reference lists of the studies selected. Authors of relevant articles from North America, South America, Europe, Africa, Asia, Oceania, and the Middle East and ADHD/HD experts were contacted. Surveys were included if they reported point prevalence of ADHD/HD for subjects 18 years of age or younger from the general population or schools according to DSM or ICD criteria.

RESULTS:
The literature search generated 9,105 records, and 303 full-text articles were reviewed. One hundred and two studies comprising 171,756 subjects from all world regions were included. The ADHD/HD worldwide-pooled prevalence was 5.29%. This estimate was associated with significant variability. In the multivariate metaregression model, diagnostic criteria, source of information, requirement of impairment for diagnosis, and geographic origin of the studies were significantly associated with ADHD/HD prevalence rates. Geographic location was associated with significant variability only between estimates from North America and both Africa and the Middle East. No significant differences were found between Europe and North America.

CONCLUSIONS:
Our findings suggest that geographic location plays a limited role in the reasons for the large variability of ADHD/HD prevalence estimates worldwide. Instead, this variability seems to be explained primarily by the methodological characteristics of studies.

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.

Kunskapen om våld mot personer med funktionshinder i Sverige är i dag otillräcklig. Området är relativt outforskat och det saknas en samlad bild av våldet. Brå fick därför regeringens uppdrag att undersöka problemet.

Artikelnr 2007-112-1

Abstract
OBJECTIVE:
To evaluate the effects of a brief group cognitive-behavioral (CB) depression prevention program for high-risk adolescents with elevated depressive symptoms at 1- and 2-year follow-up.
METHOD:
In this indicated prevention trial, 341 at-risk youths were randomized to a group CB intervention, group supportive expressive intervention, CB bibliotherapy, or educational brochure control condition.
RESULTS:
Significantly greater reductions in depressive symptoms were shown by group CB participants relative to brochure control participants by 1-year follow-up and bibliotherapy participants by 1- and 2-year follow-up but not relative to supportive expressive participants. Supportive expressive participants showed greater symptom reduction than CB bibliotherapy participants did at 2-year follow-up. Risk for onset of major or minor depression over the 2-year follow-up was significantly lower for group CB participants (14%; odds ratio = 2.2) and CB bibliotherapy participants (3%; odds ratio = 8.1) than for brochure controls (23%).
CONCLUSIONS:
Results indicate that this group CB intervention reduces initial symptoms and risk for future depressive episodes, although both supportive expressive therapy and CB bibliotherapy also produce intervention effects that persist long term. Indeed, CB bibliotherapy emerged as the least expensive method of reducing risk for future episodes of depression.

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.

The aim is to document the effectiveness of a preventive family intervention (Family Talk Intervention, FTI) and a brief psychoeducational discussion with parents (Let's Talk about the Children, LT) on children's psychosocial symptoms and prosocial behaviour in families with parental mood disorder, when the interventions are practiced in psychiatric services for adults in the finnish national health service. Patients with mood disorder were invited to participate with their families. Consenting families were randomized to the two intervention groups. The initial sample comprised 119 families and their children aged 8-16. Of these, 109 completed the interventions and the baseline evaluation. Mothers and fathers filled out questionnaires including standardized rating scales for children's symptoms and prosocial behaviour at baseline and at 4, 10 and 18 months post-intervention. The final sample consisted of parental reports on 149 children with 83 complete data sets. Both interventions were effective in decreasing children's emotional symptoms, anxiety, and marginally hyperactivity and in improving children's prosocial behaviour. The FTI was more effective than the LT on emotional symptoms particularly immediately after the intervention, while the effect of the LT emerged after a longer interval. The study supports the effectiveness of both interventions in families with depressed parents. The FTI is applicable in cultural settings other than the USA. Our findings provide support for including preventive child mental health measures as part of psychiatric services for mentally ill parents.

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

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

Akademisk Avhandling

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

Aim and objective.  To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke.

Background.  Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families.

Design.  A randomised experimental design was used.

Method.  Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach.

Results.  During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (β = 0·45; p = 0·03) than the control group. Between the sixth–twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (χ2 = 5·11; p = 0·03).

Conclusion.  Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation.

Relevance to clinical practice.  Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.

Background.  Comparisons of different stakeholders' ratings of the quality of older people care can help to drive quality improvement.

Aim.  The aim was to compare staff, older care recipients' and their relatives' quality of care ratings.

Design.  Cross-sectional questionnaire surveys in 2003 and 2004, using a repeated measures design on an organizational level.

Methods.  Nursing staff, care recipients and relatives in two older people care organizations were included. The ratings of an overall quality grade, information, activities, general care and staff skills were compared between the respondent groups.

Results.  Care recipients in both organizations rated the overall quality grade significantly higher than nursing staff and relatives. Staff ratings of the information given to care recipients were significantly more positive than care recipients' and relatives' ratings. All three groups gave lowest ratings to the quality of activities offered to care recipients, with lowest ratings from nursing staff.

Conclusions.  Concurrent measurements of staff, care recipients and relatives' care quality perceptions can provide a broad evaluation of an organization's strength and limitations.

Relevance to clinical practice.  Staff, care recipients' and relatives' perceptions can be useful for older people care organizations and decision makers in developing care processes and outcomes of care.

Abstract

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.

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

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

The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies and 1 on uncontrolled studies. The 2 meta-analyses were based on a total of 27 treatment studies published before June 2006. Hedges's g and Cohen's d were used as measures of effect size and a random-effects model was applied. Results yielded small to moderate effect sizes. Interventions for symptomatic or impaired participants tended to show larger effect sizes than interventions for bereaved children and adolescents without symptoms. Promising treatment models were music therapy and trauma/grief-focused school based brief psychotherapy.

illustrationer: Cecilia Ingard

Barn/ungdom

Här får vi läsa om Sannas delade känslor om allt bus som hennes storebror alltid hittar på.

We used data from Swedish national registers for ten entire birth year cohorts (1972–1981) to examine psychosocial outcomes in young adulthood for youth that left long term foster care after age 17, comparing them with majority population peers, national adoptees and peers who had received in-home interventions before age 13. The population was followed in the registers from age 16 to 2005. Data were analyzed in Cox regression models.

Youth who left long term foster care had six-to eleven fold sex and birth year adjusted excess risks for suicide attempts, substance abuse and serious criminality from age 20, and for public welfare dependency at age 25. Overrisks were considerably lower for the in-home intervention group and the national adoptees. Adjusting results for poor school performance in the final year in primary school (ages 15–16) reduced overrisks by 38–52% for care leavers from long term foster care.

Irrespective of issues of causality, poor school performance seems to be a major risk factor for future psychosocial problems among youth who age out of long term foster care. The results suggest that promoting foster children's school performance should be given high priority by agencies.

The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.

Abstract
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative analyses were used to detect the differences between users and nonusers of caregiver support services. Six measures included were caregiving appraisal scale, caregiving burden, caregiving mastery, caregiving satisfaction, hour of care, and service satisfaction. Using consulting and education services is associated with lessening of subjective burden; using financial support services is associated with more beneficial caregiver appraisal, such as better caregiver mastery. The findings are practical and helpful for future caregiver service and program development and evaluation and policy making for supporting caregivers. In addition, the evaluation method demonstrated in the study provided a simple and moderately effective method for service agencies which would like to evaluate their family caregiver support services.

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

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

Det finns stora problem med samordningen av stödet till barn och unga med funktionsnedsättning. Det konstaterar socialutskottet efter att ha tagit del av Riksrevisionens granskning. Trots många satsningar har de olika instanser i samhället som ger stöd till barn och unga med funktionsnedsättning fortfarande problem med att samverka. Följden blir att ansvaret för samordningen ligger hos föräldrarna.

Regeringen planerar att göra en djupare analys av hur stödet och regelverket fungerar, där även åtgärder inom samverkan och samordning ska ingå. Utskottet välkomnar detta. Utskottet har fått veta att regeringen planerar att starta en försöksverksamhet med samordnare. Utskottet förutsätter att försöksverksamheten ges hög prioritet och påbörjas under 2012, samt att regeringen återkommer till riksdagen med en redovisning när försöksverksamheten har utvärderats. Riksdagen avslutade ärendet med detta.

Riksdagen har den 1 december 2010 godkänt den strategi för att stärka barnets rättigheter i Sverige som regeringen har föreslagit i propositionen Strategi för att stärka barnets rättigheter (prop. 2009/10:232). Denna broschyr innehåller den av riksdagen godkända strategin.

The brain is the key organ of stress processes. It determines what individuals will experience as stressful, it orchestrates how individuals will cope with stressful experiences, and it changes both functionally and structurally as a result of stressful experiences. Within the brain, a distributed, dynamic, and plastic neural circuitry coordinates, monitors, and calibrates behavioral and physiological stress response systems to meet the demands imposed by particular stressors. These allodynamic processes can be adaptive in the short term (allostasis) and maladaptive in the long term (allostatic load). Critically, these processes involve bidirectional signaling between the brain and body. Consequently, allostasis and allostatic load can jointly affect vulnerability to brain-dependent and stress-related mental and physical health conditions. This review focuses on the role of brain plasticity in adaptation to, and pathophysiology resulting from, stressful experiences. It also considers interventions to prevent and treat chronic and prevalent health conditions via allodynamic brain mechanisms.

AIM:
To explore what it means to be a close relative of a person dependent on home enteral tube feeding (HETF) and how they can manage this situation.
BACKGROUND:
Previous studies have shown that the situation of close relatives in home care in general can be burdensome and difficult. Research is scarce about experiences of close relatives when patients are treated with HETF.
DESIGN:
A qualitative design was used, in accordance with grounded theory (GT).
METHODS:
Twelve close relatives were interviewed twice, using open-ended questions. Five were relatives of patients supported by home care services or advanced home care teams. Using the GT method, sampling, data collection and data analysis were carried out simultaneously.
RESULTS:
One core category, 'Struggling in an inescapable life situation' and eight categories were found. The situation led to involuntary changes in the lives of the close relatives, something they could do little about. Their lives had become completely upturned and restricted by the HETF. Togetherness and pleasure was lost and they felt lonely. The relatives faced a new role of being informal caregivers and they had to adjust their daily life accordingly. They felt forced to take on a heavy responsibility for which they lacked support. The close relatives struggled to manage and to make the best of their new situation.
CONCLUSIONS:
This study highlighted the demands and vulnerability which is embedded in the role of being a close relative of a patient with HETF. It also pointed out their need for comprehensive support from the health care system.
RELEVANCE TO CLINICAL PRACTICE:
Support to facilitate the situation of close relatives should be given from the health care. One way to organise the care could be through a nurse-led clinic, which provides continuous support, information and counseling.

AIM:
To explore what it means to be a close relative of a person dependent on home enteral tube feeding (HETF) and how they can manage this situation.
BACKGROUND:
Previous studies have shown that the situation of close relatives in home care in general can be burdensome and difficult. Research is scarce about experiences of close relatives when patients are treated with HETF.
DESIGN:
A qualitative design was used, in accordance with grounded theory (GT).
METHODS:
Twelve close relatives were interviewed twice, using open-ended questions. Five were relatives of patients supported by home care services or advanced home care teams. Using the GT method, sampling, data collection and data analysis were carried out simultaneously.
RESULTS:
One core category, 'Struggling in an inescapable life situation' and eight categories were found. The situation led to involuntary changes in the lives of the close relatives, something they could do little about. Their lives had become completely upturned and restricted by the HETF. Togetherness and pleasure was lost and they felt lonely. The relatives faced a new role of being informal caregivers and they had to adjust their daily life accordingly. They felt forced to take on a heavy responsibility for which they lacked support. The close relatives struggled to manage and to make the best of their new situation.
CONCLUSIONS:
This study highlighted the demands and vulnerability which is embedded in the role of being a close relative of a patient with HETF. It also pointed out their need for comprehensive support from the health care system.
RELEVANCE TO CLINICAL PRACTICE:
Support to facilitate the situation of close relatives should be given from the health care. One way to organise the care could be through a nurse-led clinic, which provides continuous support, information and counseling.

Den 1 juli 2009 infördes en ny bestämmelse i 5 kap. 10 § socialtjänstlagen. Syftet
med lagändringen är att tydliggöra att socialnämnden ska erbjuda stöd för att
underlätta för de personer som vårdar och stödjer närstående. Vidare framhålls
att det ur ett förebyggande perspektiv är angeläget att kommunerna erbjuder olika
stödinsatser. Med stöd menas olika insatser som primärt syftar till att fysiskt,
psykiskt och socialt underlätta för person som vårdar eller stödjer närstående.
Kommunernas anhörigstöd har tidigare främst riktats till anhöriga till äldre
personer. Denna rapport belyser det befintliga stödet och utvecklingsbehoven för
anhöriga till närstående under 65 år i Nacka kommun. Kartläggningen grundar sig
på ett 40-tal intervjuer enskilt eller i grupp med handläggare och strategiska
personer inom kommunen samt hälso- och sjukvårdens verksamheter. Andra
som har intervjuats är anhöriga, gode män, personer vid överförmyndarenheten,
frivilligorganisationer, patient & anhörigorganisationer, kyrkans verksamheter
m.fl. Resultatet visar utifrån det befintliga stödet som erbjuds idag

Barn som bevittnar våld mot en förälder som de är beroende av för sitt välbefinnande
utsätts för en form av våld. Barn behöver – i synnerhet under den tidiga barndomen –
föräldrar som prioriterar barnets behov framför sina egna. När barnets ena förälder –
eller någon annan som bor med familjen – slår eller förgriper sig på den andra föräldern
blir barnet känslomässigt övergivet och skyddslöst.
Barn kan bevittna våld mot en primär omsorgsgivare under kortare eller längre
perioder i sitt liv, men ofta innebär det ett liv begränsat av olika typer av makt,
övergrepp och förtryck. Sådana upplevelser medför en ökad risk för att barnet utvecklar
problem såsom posttraumatisk stress, depression, beteendeproblem och problem med
sociala relationer – både inom familjen och med kamrater.
Sedan 2007 är socialtjänstens ansvar, för att barn som bevittnat våld får det stöd och
den hjälp de behöver, förtydligat i Socialtjänstlagen.
Det viktigaste stödet för barn som bevittnat våld mot sin mamma är skydd från fortsatt
utsatthet. Internationellt sett är den vanligaste formen av stöd till barn, utöver sådant
skydd, samtal i grupp. Det finns dock stora skillnader mellan vilka mål programmen är
tänkta att uppnå, vilket medför att utvärderingsstudier använder varierande mått för att
bedöma vad som är ett "lyckat utfall". Detta försvårar i sin tur jämförelser av
utvärderingar av dessa program. I Sverige är den vanligaste typen av insats fortfarande
individuella samtal, även om gruppverksamheter för barn har blivit vanligare de senaste
10 åren. Kunskapen om effekterna av de metoder som utvecklats inom och utom
socialtjänsten för att stödja barn som bevittnat våld mot mamma är fortfarande
begränsad internationellt och i Sverige är den i stort sett obefintlig.
Göteborgs universitet fick 2008 i uppdrag av Socialstyrelsen att utvärdera effekten av
insatser riktade till barn som bevittnat våld mot sin mamma. Syftet med utvärderingen
var att studera förändringar i barns hälsa och välbefinnande efter stödinsatser, med
utgångspunkt i mammors och barns beskrivningar. Detta syfte preciseras i följande
frågeställningar:
1. Hur såg barnens familjesituation ut med avseende på vårdnad, boende och
umgänge och utsatthet för våld, samt barnens hälsa och välbefinnande när
insatsen påbörjades?
2. Förändrades barnens hälsa och välbefinnande från när insatsen påbörjades till
ett år senare som en konsekvens av insatsen, och skiljde sig förändringen åt
mellan olika typer av insatser?
3. Skiljde sig förändringarna åt gällande: barnens ålder och kön, våldsutsatthet eller
problembelastning, mammans socioekonomiska status, omfattningen av insatsen,
eller tiden för insatsen i barnens liv?
4. Hur stor andel av barnen hade problem på klinisk nivå gällande allmän psykisk
ohälsa och trauma före och efter de olika insatserna?
5. Hur nöjda var mammorna och barnen med de insatser de hade fått? Skiljde sig
deras nöjdhet mellan olika insatser?

Den 1 juli 2009 infördes en ny bestämmelse i 5 kap. 10 § socialtjänstlagen
(2001:453), SoL. Den anger att "socialnämnden ska erbjuda stöd för att underlätta
för de personer som vårdar en närstående som är långvarigt sjuk
eller äldre eller som stödjer en närstående som har funktionshinder". Bestämmelsen
har varit i kraft i två och ett halvt år. Den här rapporten sammanfattar
utvecklingen under 2010 och 2011. Med anhörig avses fortsättningsvis
den som ger vård och stöd och med närstående menas den som
mottar hjälpen.
Socialstyrelsen vägledningsarbete
I enlighet med regeringens förordning har Socialstyrelsen för år 2010 utbetalat
300 miljoner kronor till kommunerna för att underlätta tillämpningen
av den aktuella bestämmelsen.
Socialstyrelsens har under året haft en bred dialog med företrädare för socialtjänsten
för vägledning i arbetet med att utveckla stödet till anhöriga.
Socialstyrelsen har också anordnat seminarier med handläggare för att diskutera
deras roll i tillämpningen av 5 kap. 10 § SoL. Arbetet kommer att
dokumenteras i en vägledningsskrift, som syftar till att underlätta kommunens
arbete med att utveckla strategier och styrdokument för hela socialtjänsten,
som tydliggör vad som förväntas av personal och verksamheter,
när det gäller bemötande och stöd till anhöriga.
Likaså har Socialstyrelsen startat en dialog med patient-, anhörig-, handikapp-,
frivilligorganisationer för att få en bättre bild av deras roll när det
gäller tillämpningen av bestämmelsen. Arbetet har resulterat i en omarbetad
informationsbroschyr som ska gå ut till vård- och omsorgspersonal, organisationer
och allmänheten.
Kännedom om bestämmelsen
Inom socialtjänsten känner allt fler till bestämmelsen, vilket är en positiv
utveckling. Det är mycket svårare att veta i vad mån den är känd bland
kommuninvånarna och i vilken utsträckning informationen når fram till
"personer som vårdar eller stödjer närstående". Socialtjänstens handläggare
har en nyckelroll i att informera om 5 kap. 10 § SoL och dess innebörd.
Det är viktigt att organisationer som företräder anhöriga känner till och
informerar om bestämmelsen bland sina medlemmar. Det är dock inte givet
att anhörig-, patient-, handikapp- eller frivilligorganisationerna känner till
bestämmelsen. Organisationerna efterlyser här en dialog med kommunen.
Inom hälso- och sjukvården känner personalen inte till 5 kap. 10 § SoL i
tillräcklig utsträckning. Hälso- och sjukvårdspersonalens kunskap, eller brist
på kunskap, om bestämmelsen i socialtjänstlagen kan påverka sjukvårdens
intresse för att samverka med socialtjänsten i anhörigfrågor.
8
Tillämpningen av bestämmelsen
Inom äldreomsorgen har arbetet med bestämmelsen gått in i en konsolideringsfas;
man säkrar och förstärker det som uppnåtts i det tidigare arbetet.
Det är en positiv utveckling. Däremot vet Socialstyrelsen inte i vilken utsträckning
biståndshandläggarna inom äldreomsorgen har också beakta anhörigas
behov när de handlägger ärenden som rör den närstående.
Funktionshindersverksamheten har kommit igång med arbetet att utveckla
stödet till anhöriga. Många kommuner har genomfört kartläggningar av
verksamheten, för att få ett underlag för hur stödet till anhöriga ska utvecklas
vidare. På motsvarande sätt är det oklart i vad mån handläggarna har ett
anhörigstödjande förhållningssätt. Dessutom kan funktionshinderverksamhetens
starka brukarperspektiv göra det svårare att samtidigt ta till sig ett
anhörigperspektiv.
Individ- och familjeomsorgen befinner sig i startfasen när det gäller att
forma sitt anhörigstöd. Det betyder inte att man saknar insatser som de kan
erbjuda anhöriga. Individ- och familjeomsorgen ser ofta samarbetet med
anhöriga som en integrerad del i arbetet med brukarna. Utifrån detta måste
man utveckla sitt stöd till anhöriga.
För socialtjänsten som helhet är det fortfarande svårt att få till stånd ett
brett samarbete med hälso- och sjukvården när det gäller stöd till anhöriga.
Konsekvenserna av bestämmelsen
Förutom kommunernas redovisning av hur man arbetat med att tillämpa
socialtjänstlagens bestämmelse, har Socialstyrelsen små möjligheter att beskriva
konsekvenserna av bestämmelsen för enskilda anhöriga och om de
erbjudits och tagit emot stöd från socialtjänsten eller ej. Det skapar stora
svårigheter att få en bild av tillämpningen av bestämmelsen, liksom utvecklingen
av stödet till anhöriga som vårdar och stödjer närstående överhuvudtaget.
Socialstyrelsen saknar underlag för att redovisa hur vanligt det är att
enskilda får behovsprövade insatser, eller serviceinsatser till stöd.
Socialstyrelsens slutsatser och förslag
• Kommunerna behöver ta fram mål för stödet till anhöriga enligt 5 kap.
10 § SoL och tydliggöra vad som förväntas av socialtjänstens personal
beträffande bemötande och stöd till anhöriga. Det underlättar även samarbetet
med hälso- och sjukvården, med patient-, anhörig-, handikapp-,
frivilligorganisationer och med kommuninvånarna.
• Det finns behov av ett utvecklingsarbete inom socialtjänstens samtliga
verksamheter så att personalen kan omsätta ett anhörigperspektiv i sitt
arbete. Särskilt viktigt är att diskutera vilken delaktighet och därmed
vilket inflytande man erbjuder anhöriga.
• Socialtjänsten har ofta kontakt med anhöriga i samband med handläggningen
av den enskildes ansökan om hjälp. Här är det viktigt att man
samtidigt uppmärksammar också anhörigas behov av stöd.
9
• Många anhöriga har långvarig kontakt med landstingets hälso- och sjukvård.
Det är därför angeläget att utveckla samarbetet mellan landstinget
och kommunen beträffande stöd till anhöriga. Särskilt samverkan mellan
socialtjänsten och primärvården behöver utvecklas.
• Kommunerna har mycket att vinna på att förbättra dialogen med patient-
, anhörig-, handikapp- och frivilligorganisationerna, informera om den
aktuella bestämmelsen och om dess innebörd för organisationernas medlemmar.

• För att kunna vidareutveckla stödet till anhöriga inom socialtjänstens
olika verksamheter, är det viktigt att kunna följa resultatet av arbetet.
Kommunernas dokumentation och system för verksamhetsuppföljning
måste därför också innefatta 5 kap. 10 § SoL.
• Socialstyrelsen kommer att i sitt vägledningsarbete ha fokus på att stödja
utvecklingen inom funktionshindersverksamheten och individ- och familjeomsorgen.
Vägledningsarbetet kommer också att vidgas till att omfatta
hälso- och sjukvården i stödet till anhöriga. Socialstyrelsen kommer
samla in mängduppgifter av serviceinsatser till stöd för anhöriga, i
en kommunenkät 2012.

Objective: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. Design: Data from a cross-sectional study. Subjects: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. Methods: Carers were interviewed using a structured questionnaire. Results: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. Conclusion: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers' perceptions in order to individualize support/service, and thus make it more available and efficient.

OBJECTIVE:
To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important.
DESIGN:
Data from a cross-sectional study.
SUBJECTS:
A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project.
METHODS:
Carers were interviewed using a structured questionnaire.
RESULTS:
There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers.
CONCLUSION:
The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers' perceptions in order to individualize support/service, and thus make it more available and efficient.

Boken ger dig tips och råd när du ska välja äldreomsorg - åt dig själv eller åt en närstående. Den är lätt att slå i och kan läsas från början till slut eller i valda delar beroende på dina behov eller önskemål. Vad finns det för olika slags hjälp att få? Vad har du för rättigheter och vad är rimligt att begära? Vad är viktigt att tänka på när du ska välja mellan olika utförare? Vad gör du som anhörig om du inte är nöjd med den vård som din närstående får? Dessa frågor och många fler besvaras i boken. Precis som vi behöver information inför till exempel föräldraskap och skolstart behöver vi också vägledning inför ålderdomen. Det kan vara mycket att sätta sig in i, men med boken Så väljer du rätt äldreomsorg får du en bra översikt och en god förberedelse inför dina vägval.

Studien omfattar huvudsakligen rapporter från Skolverket och Myndigheten för skolutveckling och svenska avhandlingar. Studien knyter an till Skolverkets skrift Allmänna råd för arbete med åtgärdsprogram genom att studien tar upp en stor del av den forskning och utvärdering som ligger till grund för de Allmänna råden. Skriften vänder sig både till skolansvariga i kommunen och till skolledare och lärare i skolan

Objectives: Dementia increasingly diminishes the ability to communicate. We aimed to develop and evaluate a psychosocial intervention program that focuses on communication in dementia care. This was intended to enhance the quality of life (QoL) of people with dementia and to reduce the burden on their informal caregivers. Method: A training program for informal caregivers of people with dementia was developed. The training combines the expertise of geriatric psychiatry, geriatric care, and educational psychology. Caregivers acquire and deepen competencies required to improve communication in dementia care. The training was evaluated with a pre-post-control group design and time-series analyses. Twenty-four informal caregivers participated in the study. Results: The results of the study provide evidence that TANDEM training increases caregivers' use of strategies that are relevant for communication in dementia care and the care receivers' QoL. Conclusion: The results of research in this program show the relevance of including caregivers in interventions and the importance of communication for the QoL of people with dementia.

Recent years have brought a dramatic rise in the number of efforts to measure and monitor the status of children. Yet, despite numerous efforts and reports with 'Child indicators' in the title, the field of social child indication is fragmented and lacking a unifying taxonomy. The more ambitious the analysis and the more elaborate the statistics, the stronger the need for a common language used by all. This article tries to suggest such a taxonomy.

Twenty-nine special education teachers (n=21) and speech-language pathologists (n=8) were interviewed about a tangible symbols intervention conducted with 51 children (321 years) with multiple disabilities and visual impairment. The intervention, which took place over a 7-month period, addressed the use of tangible symbols in the context of a structured protocol for implementing the daily schedule. These educators reported that students learned the meaning of symbols, exhibited improved behavior, and learned part or all of the daily routine, among other benefits. Supports and barriers to student learning (later coded as student characteristics or intervention characteristics) were discussed. Interviewees suggested improvements to the intervention and for generalization to the home setting, including labeling in the family's first language. © 2011 International Society for Augmentative and Alternative Communication.

We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate both microswitches. Five participants showed a higher overall level of responding when both switches activating preferred stimuli were available concurrently. After completion of microswitch training, a choice assessment was conducted in which participants had access to 2 microswitches concurrently, with 1 connected to the most highly preferred stimulus and the other to a least preferred stimulus. Choice making behavior was shown in 3 participants and provided support for the preference assessment results. The results of the 3 remaining participants showed that both the most highly preferred and the least preferred stimuli may serve as reinforcers for microswitch activation responses. © 2011 Elsevier Ltd.

'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.

This study evaluated parents' use and experiences of the ComAlong communication boards, which were provided to them during a parental course on communication development, responsive strategies, and augmentative and alternative communication (AAC). Quantitative and qualitative data was collected through a survey of 65 parents and an in-depth case study of four of the parents. Questionnaires, interviews, logbooks, and video recordings showed that parents used the ComAlong boards and experienced an increased understanding of augmentative and alternative communication. Most parents reported that their children showed an interest in the boards and that in some cases started to use the boards functionally in communication. Parents' views, in terms of gains and difficulties of using graphic communication at home, are discussed.

This study evaluated parents' use and experiences of the ComAlong communication boards, which were provided to them during a parental course on communication development, responsive strategies, and augmentative and alternative communication (AAC). Quantitative and qualitative data was collected through a survey of 65 parents and an in-depth case study of four of the parents. Questionnaires, interviews, logbooks, and video recordings showed that parents used the ComAlong boards and experienced an increased understanding of augmentative and alternative communication. Most parents reported that their children showed an interest in the boards and that in some cases started to use the boards functionally in communication. Parents' views, in terms of gains and difficulties of using graphic communication at home, are discussed.

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.

The purpose of this paper is to explore the meanings of outdoor physical activity in the natural environment for parentally-bereaved young people. It draws on data generated from a two-year ethnographic study that focused on the experiences of those involved with the Rocky Centre, a childhood bereavement service in the UK. Data was collected via extended periods of participant observation and semi-structured interviews with both staff and service users. One of the key themes to emerge from the analysis was that of physical activity in different environments. The meanings that the parentally-bereaved young people attributed to outdoor physical activity clustered around four sub-themes. These were: sense of freedom; distraction/escapism; retaining memories; and family cohesion. Each of these are considered in detail and their implications for future practice and research are discussed.

Aim: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background: Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image. Design: Qualitative descriptive study. Methods; Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6–12 months after the death of the family member. The interviews were analysed with interpretive description. Result: Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space. Conclusions: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. Relevance to clinical practice: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

Purpose. To describe a measure and its performance specific to the relationship of personal factors and subjective well-being (SWB) to the use of assistive technology devices (ATDs). The primary hypothesis is that responses to a 33-item personal factors scale and a 12-item SWB scale are good indicators of an individual's predisposition for using, and subsequent match with, a given ATD.
Methods. Data analyses from a number of studies using the 33-item personal factors and the 12-item SWB scales of the Assistive Technology Device Predisposition Assessment with persons of various ages and types of disabilities.
Results. Regardless of type of disability or age of respondent, the ATD PA personal factors and the SWB scales identified important differences in predispositions to use an ATD as well as the subsequent quality of the match of person and device.
Conclusions. A quantifiable relationship exists between the ATD PA's measure of personal factors and the SWB such that it is possible to characterise an individual's predisposition to use a particular ATD. Results also show that the scales are predictive of the quality of the ATD and user match at follow-up. Rehabilitation practitioners who use the ATD PA may achieve enhanced assistive technology service delivery outcomes by using this evidence-based measure.

Although multisensory environments (MSE) are popular in schools educating students with severe disabilities, little is known about how teachers are using them. This paper reports on interviews with five teachers from two special schools who agreed to be videorecorded while using the room with their classes and who were interviewed about their perspectives on MSEs and about the activities observed in their classes. Most teachers seemed to believe that use of the MSE or the equipment in it would have automatic and remarkably wide ranging benefits for their students. There was more limited evidence of focused programing, teaching and monitoring practices that would result in functional outcomes for students. Given lack of empirical support for educational outcomes from MSE use, the authors call for more research on use of MSEs and for education authorities, schools, and teachers to more actively monitor and evaluate the effects of their use.

The causes and effects of marketization of public services have been analysed extensively in the literature, but there is relatively little research on how those policies impact on the development of new forms of governance, and the role of users in these new arrangements. This study reviews examples of competition, freedom of choice and personalized care in health and social services in England and Sweden, in order to examine the type of relationships emerging between the user/consumer vis-à-vis market driven providers and various agencies of the state under the marketized welfare. The article focuses on the possible roles users might assume in new hybrid arrangements between markets, collaborations and steering. A user typology: namely, that of a consumer, citizen, co-producer and responsibilized agent in various governance arrangements, is then suggested. The article concludes by arguing that pro-market policies instead of meeting the alleged needs of post-modern users for individualized public services are likely to promote a new type of highly volatile and fragile partnerships, and create a new subordinated user who has no choice but to 'choose' services they have little control over.

OBJECTIVE:
To review evidence of trauma and exile-related mental health in young refugees from the Middle East.

METHOD:
A review of four empirical studies: i) a qualitative study of 11 children from torture surviving families, ii) a cohort study of 311 3-15-year-old asylum-seeking children, iii) a qualitative study of 14 members of torture surviving families and iv) a follow-up study of 131 11-23-year-old refugees.

RESULTS:
The reactions of the children were not necessarily post-traumatic stress disorder specific. Seventy-seven per cent suffered from anxiety, sleep disturbance and/or depressed mood at arrival. Sleep disturbance (prevalence 34%) was primarily predicted by a family history of violence. At follow-up, 25.9% suffered from clinically relevant psychological symptoms. Traumatic experiences before arrival and stressful events in exile predicted internalizing behaviour, witnessing violence and frequent school changes in exile predicted externalizing behaviour. School participation, Danish friends, language proficiency and mother's education predicted less long-term psychological problems.

CONCLUSION:
Psychological problems are frequent in refugee children, but the extents are reduced over time in exile. Traumatic experience before arrival is most important for the short-term reaction of the children while aspects of life in exile are important for the children's ability to recover from early traumatization.

Although different types of childhood trauma have many common characteristics and mental health outcomes, traumatic loss in children and adolescents has a number of distinctive features. Most importantly, youth who experience a traumatic loss may develop childhood traumatic grief (CTG), which is the encroachment of trauma symptoms on the grieving process and prevents the child from negotiating the typical steps associated with normal bereavement. This article discusses the distinctive features of CTG, how it is different from normal bereavement, how this condition is assessed, and promising treatments for children who experience a traumatic loss.

This effectiveness study presents the results of a 1-year follow-up of a randomized controlled trial of Parent Management Training. Families of 112 Norwegian girls and boys with clinic-level conduct problems participated, and 75 (67%) families were retained at follow-up. Children ranged in age from 4 to 12 at intake (M　=　8.44). Families randomized to the control group received an active treatment alternative as would be normally offered by participating agencies. Multi-informant, multisetting outcome measures were collected and results from both intention-to-treat and treatment-on-the-treated analyses are presented. In two separate indirect effects models, assignment to Parent Management Training-the Oregon model predicted greater effective discipline and family cohesion at postassessment, which in turn predicted improvements in several child domains at follow-up.

OBJECTIVE:
To explore how content analysis can be used together with linking rules to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for children and youth (ICF-CY).
METHODS:
Individual habilitation plans containing texts on assessment and intervention for children with disabilities and their families were linked to the ICF-CY using content ana-lysis. Texts were first divided into meaning units in order to extract meaningful concepts. Meaningful concepts that were difficult to link to ICF-CY codes were grouped, and coding schemes with critical attributes were developed. Meaningful concepts that could not be linked to the ICF-CY were assigned to the categories "not-definable" and "not-covered", using coding schemes with mutually exclusive categories.
RESULTS:
The size of the meaning units selected resulted in different numbers and contents of meaningful concepts. Coding schemes with critical attributes of ICF-CY codes facilitated the linking of meaningful concepts to the most appropriate ICF-CY codes. Coding schemes with mutually exclusive categories facilitated the classification of meaningful concepts that could or could not be linked to the ICF-CY.
CONCLUSION:
Content analysis techniques can be applied together with linking rules in order to link texts on assessment and intervention to the ICF-CY.

This study investigated the effects of scripted task analytic lessons with systematic prompting on engagement and comprehension of students with a multiple, severe disability using a multiple probe single case design. Three teachers followed the scripts to include a target student in a story based lesson to increase comprehension and engagement. All three students had both a severe intellectual disability and either a severe physical or sensory impairment and relied primarily on nonsymblic communication prior to the study. Each student used a different response mode to participate in the story based lesson (i. e., eye gaze response for a student with inconsistent hand use, point response for a student who grabbed, and object response for a student with visual impairments). Results indicated increases in both comprehension and engagement for all three students. Limitations and implications for research and practice are discussed. © Division on Autism and Developmental Disabilities.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Adult co-construction with children who use augmentative and alternative communication (AAC) has been found to facilitate child communicative competence in general, but few studies have examined adult co-construction during the telling of personal narratives. This study explored the use of adult co-constructive strategies during personal storytelling with a child who used AAC. Case study discourse analysis methodology was utilized to analyze the types of co-construction strategies employed and the effectiveness of these co-construction strategies during an intervention session with a speech-language pathologist and a child who used AAC. The study concluded that use of child-centered co-construction strategies, including elicitation, question asking, prompts, positive praise, repetitions, and modeling of vocabulary and grammar, might be a facilitative factor in supporting the personal narratives of children who use AAC. Clinical implications for using child-centered co-construction during dyadic exchanges with children who use AAC are discussed.

Adult co-construction with children who use augmentative and alternative communication (AAC) has been found to facilitate child communicative competence in general, but few studies have examined adult co-construction during the telling of personal narratives. This study explored the use of adult co-constructive strategies during personal storytelling with a child who used AAC. Case study discourse analysis methodology was utilized to analyze the types of co-construction strategies employed and the effectiveness of these co-construction strategies during an intervention session with a speech-language pathologist and a child who used AAC. The study concluded that use of child-centered co-construction strategies, including elicitation, question asking, prompts, positive praise, repetitions, and modeling of vocabulary and grammar, might be a facilitative factor in supporting the personal narratives of children who use AAC. Clinical implications for using child-centered co-construction during dyadic exchanges with children who use AAC are discussed.

CONTEXT:
Attention-deficit/hyperactivity disorder (ADHD) in adulthood is a prevalent, distressing, and impairing condition that is not fully treated by pharmacotherapy alone and lacks evidence-based psychosocial treatments.

OBJECTIVE:
To test cognitive behavioral therapy for ADHD in adults treated with medication but who still have clinically significant symptoms.

DESIGN, SETTING, AND PATIENTS:
Randomized controlled trial assessing the efficacy of cognitive behavioral therapy for 86 symptomatic adults with ADHD who were already being treated with medication. The study was conducted at a US hospital between November 2004 and June 2008 (follow-up was conducted through July 2009). Of the 86 patients randomized, 79 completed treatment and 70 completed the follow-up assessments.

INTERVENTIONS:
Patients were randomized to 12 individual sessions of either cognitive behavioral therapy or relaxation with educational support (which is an attention-matched comparison).

MAIN OUTCOME MEASURES:
The primary measures were ADHD symptoms rated by an assessor (ADHD rating scale and Clinical Global Impression scale) at baseline, posttreatment, and at 6- and 12-month follow-up. The assessor was blinded to treatment condition assignment. The secondary outcome measure was self-report of ADHD symptoms.

RESULTS:
Cognitive behavioral therapy achieved lower posttreatment scores on both the Clinical Global Impression scale (magnitude -0.0531; 95% confidence interval [CI], -1.01 to -0.05; P = .03) and the ADHD rating scale (magnitude -4.631; 95% CI, -8.30 to -0.963; P = .02) compared with relaxation with educational support. Throughout treatment, self-reported symptoms were also significantly more improved for cognitive behavioral therapy (beta = -0.41; 95% CI, -0.64 to -0.17; P <001), and there were more treatment responders in cognitive behavioral therapy for both the Clinical Global Impression scale (53% vs 23%; odds ratio [OR], 3.80; 95% CI, 1.50 to 9.59; P = .01) and the ADHD rating scale (67% vs 33%; OR, 4.29; 95% CI, 1.74 to 10.58; P = .002). Responders and partial responders in the cognitive behavioral therapy condition maintained their gains over 6 and 12 months.

CONCLUSION:
Among adults with persistent ADHD symptoms treated with medication, the use of cognitive behavioral therapy compared with relaxation with educational support resulted in improved ADHD symptoms, which were maintained at 12 months.

CONTEXT:
Attention-deficit/hyperactivity disorder (ADHD) in adulthood is a prevalent, distressing, and impairing condition that is not fully treated by pharmacotherapy alone and lacks evidence-based psychosocial treatments.

OBJECTIVE:
To test cognitive behavioral therapy for ADHD in adults treated with medication but who still have clinically significant symptoms.

DESIGN, SETTING, AND PATIENTS:
Randomized controlled trial assessing the efficacy of cognitive behavioral therapy for 86 symptomatic adults with ADHD who were already being treated with medication. The study was conducted at a US hospital between November 2004 and June 2008 (follow-up was conducted through July 2009). Of the 86 patients randomized, 79 completed treatment and 70 completed the follow-up assessments.

INTERVENTIONS:
Patients were randomized to 12 individual sessions of either cognitive behavioral therapy or relaxation with educational support (which is an attention-matched comparison).

MAIN OUTCOME MEASURES:
The primary measures were ADHD symptoms rated by an assessor (ADHD rating scale and Clinical Global Impression scale) at baseline, posttreatment, and at 6- and 12-month follow-up. The assessor was blinded to treatment condition assignment. The secondary outcome measure was self-report of ADHD symptoms.

RESULTS:
Cognitive behavioral therapy achieved lower posttreatment scores on both the Clinical Global Impression scale (magnitude -0.0531; 95% confidence interval [CI], -1.01 to -0.05; P = .03) and the ADHD rating scale (magnitude -4.631; 95% CI, -8.30 to -0.963; P = .02) compared with relaxation with educational support. Throughout treatment, self-reported symptoms were also significantly more improved for cognitive behavioral therapy (beta = -0.41; 95% CI, -0.64 to -0.17; P <001), and there were more treatment responders in cognitive behavioral therapy for both the Clinical Global Impression scale (53% vs 23%; odds ratio [OR], 3.80; 95% CI, 1.50 to 9.59; P = .01) and the ADHD rating scale (67% vs 33%; OR, 4.29; 95% CI, 1.74 to 10.58; P = .002). Responders and partial responders in the cognitive behavioral therapy condition maintained their gains over 6 and 12 months.

CONCLUSION:
Among adults with persistent ADHD symptoms treated with medication, the use of cognitive behavioral therapy compared with relaxation with educational support resulted in improved ADHD symptoms, which were maintained at 12 months.

En orolig själ : en berättelse om att vara manodepressiv
Kay Jamison, professor i psykiatri och en internationell auktoritet på manodepressiv sjukdom, ger här ett märkligt och högst personligt vittnesbörd: En skildring av hur hon själv sedan unga år brottats med manodepressivitet och hur den kampen format hennes liv. Det mörka ämnet till trots, genomsyras boken av en stor portion humor.
Författaren tar oss med in i den lika fascinerande som skrämmande värld som den här typen av vansinne utgör – en värld där den ena polen är det lockande tillstånd där tankar och känslor inte vet några gränser, och den andra en öken av livlös förstening där döden ofta framstår som den enda utvägen.
Kay Jamison drabbades av sin sjukdom när hon var sjutton år, och den följde henne genom skolår och universitetsstudier, genom passionerad kärlek och gränslös sorg, genom maniska skov och ett självmordsförsök som sånär kostat henne livet. Hon beskriver också det plågsamma dilemma som sjukdomen ställde henne inför: att ta litium, en medicinering som innebar att hon gick miste om topparnas hänförelse. Hon hade dessutom lärt sig att en bra flicka reder sig själv, dvs utan medicin. Men – med hjälp av kunskap, livsvilja, adekvat medicinering och, mer än något annat, kraften från ett kärleksfullt förhållande finner hon vägen till ett meningsfullt liv.

Purpose: To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care, and interaction are associated with such agreement. Design and Methods: This cross-sectional study examined agreement in 336 family-staff pairs of postdeath telephone interviews conducted as part of the Collaborative Studies of Long-Term Care. Eligible deaths occurred in or within 3 days of leaving one of a stratified random sample of 113 long-term care facilities in four states and after the resident had lived in the facility 15 days of the last month of life. McNemar p values and kappas were determined for each concordance variable, and mixed logistic models were run. Results: Chance-adjusted family-staff agreement was poor for expectation of death within weeks (66.9% agreement, k = .33), course of illness (62.9%, 0.18), symptom burden (59.6%, 0.18), and familiarity with resident's physician (59.2%, 0.05). Staff were more likely than family to expect death (70.2% vs 51.5%, p /BFM1XC8|END .001) and less likely to report low symptom burden (39.6% vs 46.6%, p = .07). Staff involvement in care related to concordance and perspectives of adult children were more similar to those of staff than were other types of family members. Implications: Family and staff perspectives about end-of-life experiences may differ substantially; efforts can be made to improve family-staff communication and interaction for joint decision making.

Semistructured interviews were conducted with 26 mothers who had one or more children(N = 36) aged 8 to 12 years when they were diagnosed with early stage breast cancer. Formal methods were used to analyze the content of the data inductively. Mothers identified times during their diagnosis and treatment that were most difficult for their children, behaviors they observed indicating that the child was having a difficult time, and factors that prevented them from helping the child during those difficult times. The data provide a partial basis for developing materials, programs, and services designed to minimize the children's distress and to enhance the effectiveness of' parenting when a mother has early stage breast cancer.

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

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

OBJECTIVES: To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression.

DESIGN: Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone.

SETTING: Primary care and university late-life mental health research clinic.

PARTICIPANTS: Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N=244 dyads).

MEASUREMENTS: Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression.

RESULTS: Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β=−0.22, P=.001) and a trend toward lower general burden (β=−0.08, P=.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76)=4.27, P=.04).

CONCLUSION: Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects.

Abstract
OBJECTIVES:
This study evaluated the effectiveness of Cognitive Behavioral Writing Therapy (CBWT) in 23 children (age 8-18 years) in the Netherlands, who experienced a range of single and recurrent traumatic experiences. CBWT uses exposure, cognitive restructuring and social sharing.
METHODS:
At pre-test, post-test and follow-up, post-traumatic stress disorder (PTSD) symptoms, depressive symptoms, trauma-related cognitions and general behavioural problems were assessed.
RESULTS:
At post-test there was a significant reduction of all symptoms, and this effect was maintained at 6 months follow-up. The mean amount of treatment sessions needed was 5.5.
CONCLUSIONS:
This study shows that short-term CBWT is a potentially effective intervention for clinically referred traumatized children. There is now a clear need of establishing the effectiveness of CBWT in a randomized, controlled trial.
PRACTICE IMPLICATION:
This first study indicates CBWT is a promising treatment, which can easily be used in clinical practice.

Akademisk avhandling.

Det övergripande syftet med avhandlingen är att beskriva långvarigt sjuka barns upplevelser av tröst samt vilka och vad som tröstar barn, föräldrar och en sjuksköterska. Avhandlingen omfattar fyra delstudier. Långvarigt sjuka barn, föräldrar och en sjuksköterska har intervjuats och barnen har ritat teckningar.I delstudie I var syftet att undersöka vad barn med långvariga sjukdomar berättar muntligt och i teckningar om sina upplevelser av att bli tröstade. Sju barn i åldern 4-10 år, med olika långvariga sjukdomar, beskrev under intervju sina upplevelser av tröst och ritade teckningar. Intervjuerna analyserades med innehållsanalys, vilket utmynnade i fyra teman: att vara fysiskt nära sin familj, att känna sig trygg och säker, att sjuksköterskor finns till hands för barnen och att barnen finns till hands för sina föräldrar och syskon. Resultatet visar att barnen litade på sjuksköterskors kunskap och yrkeskunnande, vilket var en förutsättning för att kunna känna sig trygg och hemma på sjukhus. Att vara nära sin familj upplevdes än mer betydelsefullt för att uppleva tröst.

I delstudie II var syftet att beskriva föräldrars upplevelser av vad som tröstar dem när deras barn insjuknat i cancersjukdom. Nio föräldrar till barn i åldern 3-9 år, som var inlagda på vårdavdelning och hade genomgått sin första behandling, intervjuades. Innehållsanalys utmynnade i fem teman: att uppleva tröst genom att vara nära sitt barn, att uppleva tröst genom barnets styrka, att uppleva tröst genom att känna sig hemma på vårdavdelningen, att uppleva tröst genom att vara en familj och genom att vara hemma samt att uppleva tröst genom stöd från sociala nätverk. I kommunion, en djup känsla av gemenskap med barnet och personer i sociala nätverk, upplevde föräldrarna en ny vardag som kännetecknades av att känna sig trygg i livet trots alla svårigheter och de upplevde stunder av hopp.

I delstudie III var syftet att beskriva upplevelser av vad som tröstar ett allvarligt sjukt och senare döende barn, berättat av barnet, hans mamma och hans sjuksköterska. Barnet ritade teckningar. Fältanteckningar, teckningar och intervjuer analyserades med innehållsanalys, vilket utmynnade i fyra teman: att uttrycka känslor och bli redo för tröst, att vara i kommunion, att skifta perspektiv och att finna tröst genom att vara hemma. Resultatet visar att tröst för det svårt sjuka, senare döende barnet, innebar att barnet kunde uttrycka sina känslor som barnet ville, att familjen fanns nära och var involverade i omvårdnaden av barnet, att barnet kunde vårdas hemma och att barnet upplevde en förtroendefull relation med sin sjuksköterska.

I delstudie IV var syftet att beskriva vem och vad som tröstar föräldrar, syskon, sjuksköterska och andra personer som tröstade ett svårt sjukt och senare döende barn, beskrivet av mamman och barnets sjuksköterska. Intervjuer från delstudie II analyserades med innehållsanalys och utmynnade i tio teman. Resultatet visar en bild av samverkande nätverk som kan finnas runt ett svårt sjukt barn. Den svåra situationen innebar att barnets familj bar en tung börda, men omgivna av ett tröstande nätverk som de kunde luta sig mot och dela lidande och ansvar med, kunde de finna tröst och trösta varandra.

Resultatet i avhandlingen visar att de långvarigt sjuka barnen och föräldrarna fann tröst i att kunna dela lidande med varandra. Föräldrar och sjuksköterska fann tröst i att kunna dela lidandet och ansvaret med personer i sina sociala nätverk. Modellen om tröst (Norberg m fl, 2001) kunde användas för att ge struktur till diskussionen.

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.

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.

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

Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged

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

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

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

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

Boken samlar de kåserier och krönikor som RBU Stockholm publicerat i medlemstidningen Utsikt. Föräldrar till barn med funktionsnedsättningar kommer att känna igen sig i bokens kåserier och krönikor. Man påminns om sina egna upplevelser, skrattar med åt absurda situationer och känner ilskan mot tjänstemän och en oförstående omgivning. Svar på tal levereras!

ALS is a neurodegenerative disease without curative treatment. The knowledge of the relationship between patients and their next of kin with respect to quality of life (QoL) is deficient. The overall aim of this thesis is to describe different perspectives of QoL of patients with ALS and their next of kin, and to describe strengths and hindrances in the manageability of their daily lives. The participants were recruited from Sahlgrenska University Hospital in Gothenburg, Sweden. In the quantitative studies I–III, 35 couples participated. Fourteen patients and thirteen next of kin participated in the qualitative study (IV). Few changes were found over time in studies I and III, but in patients, there was a decreased rating in some of the physical subscales and in general health in the health-related QoL (HRQoL). The ratings in those subscales were worse in patients than in next of kin, even though next of kin also gave a decreased rating in some of the physical and mental subscales. Next of kin estimated individual QoL to be worse than patients did. No changes were found over time in anxiety, depression, or individual QoL. The ratings in discrete pairs were often similar, indicating that if one person felt bad, the other one did also. Even though the pairs gave relatively good ratings of QoL, study II showed that QoL was worse than in a subset of the general population. Study IV found a constant fluctuation between factors that facilitated and hindered the manageability for each individual person, as well as similarities and differences between patients and their next of kin. QoL was worse in our participants compared with the general population and did not change much over time. The similarities and differences between the patients and next of kin show the need to offer them physical, psychosocial, and existential support, both together and individually, to ensure the best possible QoL. The knowledge that the manageability can change from one moment to another makes it necessary to meet the individuals with a wide perspective and to support them in the situation in which they are currently living.

Bipolar disorder has considerable consequences for the daily life and functioning of the person affected and their family. The aim of this study was to describe the experience of living with bipolar disorder from the view of the person affected and their family. A further aim was to analyze the outcomes of educational interventions for persons with the illness and their family members in outpatient mental health care. In Papers I and II, qualitative interviews were conducted with persons diagnosed with bipolar disorder (n=18) and family members (n=17) focusing on their experiences of life with the illness. In Papers III and IV the outcomes of educational interventions for those affected (n=32) and the families (n=34) were followed-up and analyzed. Paper III included a comparative group (n=15) of persons with the illness only receiving standard treatment. Data were collected using a semistructured interview (III) and self-assessment instruments (III-IV) on five occasions, starting before the intervention and ending at the two-year follow-up. Content analysis was applied to the qualitative studies, whereas descriptive and non-parametric statistical methods were used for the quantitative studies. The educational intervention was an existing health care intervention in a unit in outpatient mental health care services consisting of ten group-sessions with different topics related to living with bipolar disorder which the group discussed and reflected on. It is based on the assumption that communication, collaboration and discussion in these groups create interaction that facilitate development of knowledge about and capacity to manage living with the illness. The results of this thesis showed that the whole lives of the family and the member affected were influenced. The process of integrating the illness challenged their pre-understanding, requiring reconsideration of self among the persons affected and confirmation of the correctness of the families' experiences. Uncertainty among persons with the illness concerning their own capacity and the limited life associated with the illness influenced their view of the future. The younger adults avoided planning or hoping for the future, and without hope of improvement it sometimes felt hard to continue. The families were strongly committed to the care for the member with the illness, but felt engaged in a lonely and burdensome struggle that diminished their chances of a normal life of their own. Hope for the future, sufficient social functioning and feeling part of society was prerequisites for a manageable life for these people. The educational interventions gave them opportunity to interact and learn together with mental healthcare professional and other people within a constructive environment. The outcomes of the interventions showed that both persons with bipolar disorder and the family members increased their self-management ability as a result of their developed knowledge and their ability to meet the daily social concerns and stresses related to living with bipolar disorder improved. This thesis contributes increased knowledge concerning what it means to live with bipolar disorder in the long-term and emphasis the importance of educational interventions with a person-centred view for person affected and family members developing their capacity to manage life. The overall support from mental health care has to be further developed and designed to meet all the specific and different needs of those persons and their families. To supplement the promising outcomes of the educational interventions more research is needed concerning increased self-management under different stages of the illness and life.

Abstract
OBJECTIVES:
This article reports on results from a randomized experimental trial of the effects of the Family Bereavement Program (FBP) on multiple measures of grief experienced by parentally bereaved children and adolescents over a 6-year period.
METHOD:
Participants were 244 youths (ages 8-16, mean age = 11.4 years) from 156 families that had experienced the death of a parent. The sample consisted of 53% boys and 47% girls; ethnicity was 67% non-Hispanic White and 33% ethnic minority. Families were randomly assigned to the FBP (N = 135) or a literature control condition (N = 109). Two grief measures, the Texas Revised Inventory of Grief and the Intrusive Grief Thoughts Scale (IGTS) were administered at 4 times over 6 years: pretest, posttest, and 11-month and 6-year follow-ups. A 3rd measure, an adaptation of the Inventory of Traumatic Grief (ITG) was administered only at the 6-year follow-up.
RESULTS:
Compared with the control group, the FBP group showed a greater reduction in their level of problematic grief (IGTS) at posttest and 6-year follow-up and in the percentage at clinical levels of problematic grief at the posttest. The FBP also reduced scores on a dimension of the ITG, Social Detachment/Insecurity, at 6-year follow-up for 3 subgroups: those who experienced lower levels of grief at program entry, older youths, and boys.
CONCLUSION:
These are the first findings from a randomized trial with long-term follow-up of the effects of a program to reduce problematic levels of grief of parentally bereaved youths.
(c) 2010 APA, all rights reserved

Abstract
Objectives: The primary aim of this study was to explore the impact of falling for frail community-dwelling older persons with and without cognitive impairments who have experienced a recent fall and their primary family caregivers. The secondary aim was to define components for a future fall prevention programme.

Methods: Grounded theory interview study, with 10 patients (three cognitively unimpaired, four with mild cognitive impairment and three with dementia) and 10 caregivers.

Results: All patients described a fear of falling and social withdrawal. Caregivers reported a fear of their care recipient (CR) falling. Most patients were unable to name a cause for the falls. Patients rejected the ideas that falling is preventable and that the fear of falling can be reduced. Some caregivers rated the consequences of their CRs' cognitive problems as more burdensome than their falls and believed that a prevention programme would not be useful because of the CRs' cognitive impairment, physical problems, age and personalities.

Conclusion: Falling has major physical and emotional consequences for patients and caregivers. A fall prevention programme should focus on reducing the consequences of falling and on promoting self-efficacy and activity. The causes of falls should be discussed. The programme should include dyads of patients and caregivers because caregivers are highly involved and also suffer from anxiety. Before beginning such a programme, providers should transform negative expectations about the programme into positive ones. Finally, caregivers must learn how to deal with the consequences of their CRs' falling as well as their cognitive impairment.

Three models of the relations of coping efficacy, coping, and psychological problems of children of divorce were investigated. A structural equation model using cross-sectional data of 356 nine- to twelve-year-old children of divorce yielded results that supported coping efficacy as a mediator of the relations between both active coping and avoiding coping and psychological problems. In a prospective longitudinal model with a subsample of 162 of these children, support was found for Time 2 coping efficacy as a mediator of the relations between Time 1 active coping and Time 2 internalizing of problems. Individual growth curve models over four waves also found support for coping efficacy as a mediator of the relations between active coping and psychological problems. No support was found for alternative models of coping as a mediator of the relations between efficacy and symptoms or for coping efficacy as a moderator of the relations between coping and symptoms.

Background. Few population studies have investigated the functional disabilities that accompany specific psychiatric diagnoses. This study assesses the nature and strength of current and residual impairments in various functional domains of life.
Methods. Data were derived from the Netherlands Mental Health Survey and Incidence Study (NEMESIS), a prospective study in the Dutch general population aged 18 to 64 (N = 7147). Psychiatric diagnoses were based on the Composite International Diagnostic Interview; functional disability was assessed on the basis of the Short-Form-36 and the number of disability days.
Results. Psychopathology was associated with increased disability in social, emotional and physical domains of life. Disability levels varied by psychiatric diagnosis, with mood disorders showing the poorest levels of functioning, especially for vitality and social functioning; alcohol-related disorders were associated with few disabilities. Co-morbidity strongly aggravated the disability. The effect of contextual factors on disability was limited, although somatic ill health, unemployment and adverse youth history increased the likelihood of functional disability. The findings indicate that psychopathology can also have residual debilitating effects.
Conclusions. Mental health care providers should be aware that the extent and the type of disability may vary with the different types of disorders and among different groups within the population. Since recovery from functional limitations may not be complete or may take more time than the remission of the psychiatric symptomatology, non-psychiatric follow-up care is needed. The high number of lost work days is relevant from an economic perspective. There is a need for illness-specific disability assessment instruments.

Depression - en vanlig sjukdom är en grundlig, saklig och lättillgänglig bok den sjukdom som drabbar alltfler människor under något skede i livet. Boken är indelad i tre huvudavsnitt: symtom, orsaker och behandling.

Författaren tar upp hur sjukdomen depression skiljer sig från den helt naturliga nedstämdhet som kan drabba alla då och då. Vidare behandlas ett antal specialteman - t ex årstidsbundna depressioner, förhållandet mellan kön och depressionsbenägenhet, äldre och depression, depression vid missbruk, ätstörningar och sömnproblem.

I avsnittet om orsaker redogörs för olika teorier, både biologiska, sociala och psykologiska förklaringsmodeller, som söker förklara depressionens uppkomst. Boken avslutas med ett omfattande avsnitt om olika aktuella behandlingsvägar. Författaren tar också upp hur man kan hjälpa sig själv vid nedstämdhet samt ger råd till anhöriga. Ett varsamt skrivet sista kapitel behandlar självmord och självmordsförsök i samband med depression.

När Depression - en vanlig sjukdom utkom första gången 1998 blev den mycket uppskattad för det direkta och lättillgängliga tilltalet och den stora respekt för de drabbade som genomsyrar texten. Flera anmälare betonade att boken vänder sig till både yrkesfolk inom vården och till "vanliga" människor - den beskrevs som en verklig bok för alla.

Akad. Avh.

Family caregivers of people with bipolar disorder experience a range of difficulties in understanding and coping with the impact of the disorder. The Family Support Team at the Princess Alexandra Hospital in Brisbane, Queensland, developed an educational supportive program for families of people with bipolar disorder that sought to improve caregiver knowledge of the illness, reduce caregiver distress, and enhance caregiver coping. The program also sought to moderate caregiver attributions of patient behavior in order to build an illness perspective of behavior. The bipolar program was developed, trialed, and evaluated. Analysis of results shows encouraging improvements for some families in knowledge, distress, attributions, and ways of coping. Practice and research implications include identifying differences with the schizophrenia program, the importance of a problem-solving focus, maintaining a balance between information giving and support, and timing of the intervention.

Efforts to understand the etiology of adult mental disorders by studying children has produced unanticipated changes in our understanding of pathology, individual development, and the role of social context. Among these are the blurring of the division between mental illness and mental health, the need to attend to patterns of adaptation rather than personality traits, and the powerful influences of the social world on individual development. Current developmental views place deviancy in the dynamic relation between individuals and their contexts. At another level, when we view the history of developmental psychopathology, dialectical developmental processes are evident as we trace how patterns of adaptation of researchers, expressed in theoretical models and empirical paradigms. increasingly have come to match the complexities of human mental health and illness.

Preparing for the Drug-Free Years (PDFY) is a curriculum designed to help parents learn skills to consistently communicate clear norms against adolescent substance use, effectively and proactively manage their families, reduce family conflict, and help their children learn skills to resist antisocial peer influences. This study examined the effects of PDFY on the trajectories of these factors, as well as on the trajectory of alcohol use from early to mid adolescence. The sample consisted of 424 rural families of sixth graders from schools randomly assigned to an intervention or a control condition. Data were collected from both parents and students at pretest, posttest, and 1-, 2- and 3 1/2-year follow-ups. Latent growth models were examined. PDFY significantly reduced the growth of alcohol use and improved parent norms regarding adolescent alcohol use over time. Implications for prevention and evaluation are discussed.

Denna bok belyser några centrala frågor i den handikappolitiska utvecklingen under de senaste åren. Vad var det som dolde sig bakom de goda intentionerna och strävan efter välfärd för personer med funktionshinder? Klienter och patienter är inte längre nöjda med enbart anonym planläggning utan vill själva bestämma över sina liv. Ett genomgående tema i boken är därför att lyfta fram och belysa handikappolitikens konsekvenser ur de funktionshindrade personernas eget perspektiv.
Boken vill ge några bilder av funktionshindrade personers levnadsförhållanden och hur deras möte med den offentliga vården och omsorgen ser ut. Den visar på gränser och möjligheter i dagens handikappolitik och hur den i praktiken verkställs. Svensk handikappomsorg är bra men det finns också samtidigt en praktisk vardag som inte alltid stämmer med lagarnas bild av möjligheter och rättigheter. Bakgrunden till boken är främst handikappreformen från 1994, men även psykiatrireformen ett år senare.
Boken är i första hand tänkt för undervisning inom högskolans sociala utbildningar och vårdutbildningar. Boken vänder sig också till verksamhetspersonal, handläggare och beslutsfattare, liksom till anhöriga och funktionshindrade personer.
Mer information om våra bokserier och övriga böcker inom ämnesområdet finns på webbplatsen Handikapp och funktionshinder.

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

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.

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.

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.

PURPOSE/OBJECTIVES: To describe mothers' reported methods of interacting with the mothers' school-age children about their breast cancer. DESIGN: Qualitative. SETTING/SAMPLE: 19 mothers newly diagnosed with breast cancer. Mothers received treatment for their illness in the Pacific Northwest. Mothers had at least one child between 7 and 12 years old at the time of diagnosis. METHODS: Case-intensive, in-home, semistructured interviews were audiotaped, transcribed, and inductively coded into four conceptual domains and 16 categories of behavioral strategies used by the mothers to interact with their children about the breast cancer. MAIN RESEARCH VARIABLES: Behavioral strategies used by mothers when interacting with the children about the breast cancer and when providing children with support. FINDINGS: Mothers used a number of methods to bring children into the mothers' breast cancer experience. The conceptual domains included talking about the breast cancer, explaining treatment and care, providing experiences, and doing things to help children cope. CONCLUSIONS: The dominant pattern in the interview data was for mothers to assume a teacher/educator role with the children about the cancer, not an interactive, emotive-expressive parenting role. Most mothers used technical biomedical language; did not give evidence of systematically checking on the children's understanding of what they were told; did not elicit the children's concerns; and exposed the children to emotionally laden or potentially frightening images, words, or experiences. IMPLICATIONS FOR NURSING PRACTICE: Programs and materials need to be developed that help mothers work from a model of parenting that includes developmentally appropriate language, facilitates the children's expression of questions and feelings, links the mothers with the children's understanding of the illness, and assists the children to better manage what is happening related to the breast cancer.

Den 20 november 1989 antog Förenta nationernas generalförsamling konventionen om barnets rättigheter. Det innebar ett viktigt tillskott till skyddet för de mänskliga rättigheterna. För första gången samlades de rättigheter som tillkommer alla barn och ungdomar upp till 18 år i ett folkrättsligt bindande dokument. Denna skrift innehåller bl.a. konventionens budskap, förteckning över konventionens artiklar och konventionstexten.

OBS! När FN antog och Sverige ratificerade konventionen om barnets rättigheter låg ansvaret inom UD. Därför tog UD fram en skrift om konventionen, samt en lättläst version. Ansvaret finns nu sedan flera år i Socialdepartementet, med Barnombudsmannen som ansvarig myndighet för att sprida information om Barnkonventionen. Därför hänvisar UD till Barnombudsmannen för information och beställning av trycksaker om Barnkonventionen. UD:s skrifter som tidigare distribuerades i tryckt form, finns fortfarande att ladda ner i pdf-format.

http://www.barnombudsmannen.se/publikationer/

Vilka specifika faktorer har betydelse i omvårdnad av barn? Vilka utvecklingspsykologiska faktorer behöver sjuksköterskan ha kunskap om? Hur reagerar barn vid inläggning på sjukhus? Hur ska sjuksköterskan samarbeta med det sjuka barnets föräldrar och syskon? God omvårdnad av barn kräver speciell kompetens.

Residential treatment programs specifically designed for alcohol/drug-addicted women and their children have become a popular treatment modality across the United States. Outcome evaluation of these programs are beginning to show promising results. In this article, outcome data from a study of a residential substance abuse treatment program for women and young children in rural South Carolina will be presented. Data from 35 women and 23 children in the area of addiction severity, parenting and child emotional and behavioral development at 6 and 12 months following discharge from a substance abuse residential treatment program is examined. Results showed that women who completed treatment had better scores on addiction severity and parental stress, and their children had improved behavioral and emotional functioning at 6 and 12 months after discharge from the program. These results suggest that residential treatment has benefits for mothers and their children. This data adds to the growing body of evidence supporting intensive and inclusive care for certain groups of individuals with substance use disorders during critical periods.

This study evaluated the effectiveness of a brief, 2 min pre-session stimulus preference assessment in predicting the levels of responding of four students with profound multiple disabilities during a 5-minute experimental session immediately following the assessment. During the pre-session assessment, students were presented with four stimuli selected from a pool of stimuli identified as either preferred (2 stimuli) or neutral (2 stimuli) from a previous preference assessment. The duration of the student's target behavior (smiling or laughing) was recorded. The stimulus with the longest duration was considered "preferred" and the stimulus with the shortest duration was considered "neutral." An alternating treatments design (ATD) was then used to evaluated the prediction of student responding based on the pre-session assessment immediately prior to an experimental session. Either the preferred, neutral, or both stimuli were presented within the context of a social interaction and the duration of the student's target behavior (smiling or laughing) was recorded. Teacher behavior, time of day, position of the child, materials, and activities, were controlled. Results indicate that the 2 min pre-session assessment had predictive value, that is, there were higher levels of student responding during the condition when the preferred stimulus was used than when the neutral stimulus was used across all four students. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Denna bok är resultatet av 40 års psykiatriska erfarenheter – erfarenheter som lett till övertygelsen om att det är nödvändigt att samtidigt hålla både ett humanistiskt och ett naturvetenskapligt perspektiv levande när man ska förstå och arbeta med de olika psykostillstånden. Man kan aldrig bortse från biologiska faktorer, men man får heller aldrig glömma att den psykotiske är en tänkande och kännande människa med unika förutsättningar och erfarenheter. Cullberg menar att gränsen mellan "normalt" och "psykotiskt" är godtycklig och flytande. Vi behöver bara gå till våra egna nattliga drömmar och fantasier för att inse att vi alla inom oss bär på möjligheter till psykotiskt tänkande. Skillnaden är bara att vi normalt kan korrigera oss i vår förmåga att bedöma verkligheten

A previous group comparison had shown that in families experiencing the UCLA Family Development Project intervention as opposed to a group that did not, mothers became more responsive to the needs of their infants, and the infants were more secure in their attachment to their mothers. The present study asks whether variations in these outcomes following participation in a relationally based intervention are anticipated by maternal involvement in the intervention, partner support, personality dimensions, and mother–infant interactions that were assessed early in the intervention process. The sample consists of 46 mothers at risk for inadequate parenting who also were poor and generally lacked support. It was found that variations at 12 months of age in the child's secure response to separation, his or her expectation of being cared for (felt security), and the mother's responsiveness to need are anticipated by variations in the mother's 6- to 12-month involvement in the home-visiting intervention, the quality of her partner's support as measured at six months, and her own trust, ability to form stable relationships, and lack of self doubt. Parents who, at one month, were responsive to the needs of their more soothable babies were more likely to have secure children at 12 months, but these associations were not as robust as those summarized above. © 2000 Michigan Association for Infant Mental Health.

Reviews the literature on the concept of resilience in children. The topic of individual resilience is one of considerable importance with respect to public policies focused on the prevention of either mental disorders or developmental impairment in young people. In planning preventive policies, it is important ot ask whether it is more useful to focus on the risks that render children vulnerable to psychopathology or on the protective factors that provide for resilience in the face of adversity. Topics covered include methodological considerations in the study of resilience, studies directly focusing on resilience, processes associated with resilience, and associated policy implications. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.

Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.

This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.

This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

Hur är det att vara anhörigtill en person med demenssjukdom? Vilket stöd ges från sam-hällets sida och överensstämmer det med de verkliga behoven? Hur upplever vårdpersonaloch biståndshandläggare det är att stödja anhöriga? Var finns problemen, och hur ska vigöra för att lösa dem? Det är några av de frågor vi har ställt och försöker ge svar på i dennafokusrapport. Demens beskrivs ofta som de anhörigas sjukdomeftersom de förändringar som följer medsjukdomsutvecklingen starkt påverkar livskvaliteten även för de anhöriga. De anhöriga, somofta själva är äldre, har en avgörande roll när det gäller vården av personer med demens-sjukdom.1Invanda mönster och maktförhållanden förändras i en familj när någon insjuknari demenssjukdom.2Att vårda en närstående är vanligt i åldrarna 75 till 84 år, ungefär likamånga män som kvinnor.3Att vara anhörig till en person med demenssjukdom påverkar hälsa, social situation, eko-nomi, livskvalitet och levnadsvillkor i hög grad.Ett flertal studier visar att anhöriga somvårdar en person med Alzheimersjukdom löper en ökad risk för depression4. Data från stu-dier visade att inflyttningen på särskilt boende kan framflyttas med sex månader om anhö-riga erbjuds stöd och hjälp när den demenssjuka fortfarande bor hemma. Välinformeradeoch kunniga anhöriga är en tillgång för både landsting och kommun. Från den 1 juli 2009 är kommunens skyldighet att ge stöd till anhöriga förtydligad genomen ändring i socialtjänstlagen. Kommunal hälso- och sjukvård och socialtjänst ska er-bjuda ett individuellt anpassat stöd till anhöriga, men också arbeta för att se, respektera ochsamarbeta med anhöriga.6Landstinget har ingen uttalad skyldighet att stödja anhöriga men har i uppdrag att svara förförebyggande hälso- och sjukvård enligt 2 c § Hälso- och sjukvårdslagen. Det innebärbland annat att identifiera personer eller grupper som riskerar att drabbas av ohälsa. Hälso-och sjukvården har en otydlig roll i dagens anhörigstöd. Sedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närbehov finns ska en gemensam individuell plan upprättas för personer med psykiska funk-tionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga.De behov som anhöriga till personer med demenssjukdom har, liknar i stor utsträckning be-hoven som andra anhöriga har, det vill säga där det handlar om andra svåra kroniska sjuk-domar eller psykiska funktionshinder. Nästan oavsett vilka sjukdomstillstånd det handlar om innebär vardagen som anhörig ett stort antal utmaningar där samhället måste erbjudastöd och hjälp. I Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010"belyses hela vårdkedjan - över huvudmannaskapsgränserna. I riktlinjerna framgår hur deolika aktörerna bör strukturera sitt arbete för att kunna säkra god och jämförbar vård förpersoner med demens. I de nationella riktlinjerna lyfts begreppet personcentrerad omvårdnadfram, det vill sägaatt omhändertagandet av personer med demenssjukdom i möjligaste mån ska individanpas-sas. Flertalet anhöriga anser att personal inom vård och omsorg inte tar tillvara anhörigaskunskap om deras närstående. För att lyckas med det krävs att företrädare från kommuneroch landsting betraktar anhöriga som samarbetspartners. På så sätt ökas självkänslanhos anhöriga och främjar deras självständighet. Det bidrar också till att man inom kommunoch landsting får en korrekt bild av vad som behövs i ett fungerande anhörigstöd.Olika typer av tekniska hjälpmedel kan även vara till stor hjälp för den anhöriga och bevaraden demenssjuke personens oberoende så länge som möjligt. Idag förskrivs sällan hjälpme-del för patientgruppen med demenssjukdom.I denna fokusrapport redovisas en sammanställning av material insamlat från Socialstyrelsen,Länsstyrelsen i Stockholm, "Stiftelsen Äldrecentrum" och "Nationellt kompetenscentrumAnhöriga" samt en ny kartläggning bestående av fokusgruppsintervjuermed anhöriga,distriktssköterskor, biståndshandläggare och personal på minnesmottagningar i länet. Enkartläggning som visar att: -Anhöriga är i behov av mer stöd och avlastning än de i dagsläget erbjuds.- Många anhöriga tycker att det är svårt att veta vem de ska vända sig till för att få hjälp eftersom det finns flera huvudmän. - Det finns brist i kompetens hos personal som vårdar personer med demens.- Företrädare inom såväl kommun som landsting anser att det behövs en tydligare be-skrivning av vem som ansvarar för vad ifråga om personer med demens, samt en önskan om fler och bättre samverkansformer för att förhindra att personer med demens"faller mellan stolarna". - Vårdpersonal och biståndshandläggare uttrycker önskemålet om att det borde finnas en funktion/roll som är huvudansvarig för varje person med demenssjukdom, och somkan följa denna/denne genom hela vårdkedjan. Resultaten som presenteras i denna rapport är en sammanvägning av allt material somnämns ovan, dvs en analys av kartläggningens olika delmoment: litteraturgenomgång ochfokusgruppsintervjuer. FörbättringsområdenInformation och utbildning till anhörigaUtbildningsprogram till anhöriga kan minska stress och risk för såväl fysisk som psykiskohälsa, och öka deras förmåga att hantera beteendemässiga problem. Utbildning kan ges iform av kontinuerlig och strukturerad information om demenssjukdomar, bemötande ochvilket stöd samhället erbjuder till anhöriga. Utbildningen kan ges individuellt eller i grupp.Primärvården och distriktssjuksköterskan har en viktig roll i fråga om anhörigstöd som be-höver förtydligas särskilt med tanke på att strukturerad anhörigutbildning med psykosocialtstöd ännu inte är rutinförfarande.Såväl kommuner som landsting behöver ge tydligare information om hur ansvarsfördel-ningen ser ut på sina respektive webbplatser. Broschyrmaterial behöver också arbetas framför att finnas tillängligt på de platser där anhöriga och närstående vistas. Det finns flera pa-tient- och frivilligorganisationer som gör viktiga insatser för människor med demenssjuk-dom. Ett utvecklat samarbete med patientorganisationer är angeläget eftersom de har storkunskap inom området och arrangerar utbildningar och konferenser.Utveckling av stödformerStöd till anhöriga finns i olika former: avlösning i hemmet, dagverksamhet, tillfälligt bo-ende, nätverk, tekniska hjälpmedel, utbildning, psykosocialt stöd och hemtjänst. Det är vik-tigt att man fortsätter att utveckla stödformer av alla slag – men framförallt att de erbjudstill alla som har behov. När det gäller yngre personer med demenssjukdom behövs det flerplatser inom dagverksamhet.Tydligare ansvarsfördelningFör att demenssjuka och deras anhöriga ska ha en fungerande vardag behövs klarare lokalariktlinjer och tydligare rollfördelning mellan landsting och kommuner. Att det finns flerahuvudmän som ansvarar för patientgruppen är ett stort problem. Vård och omsorgsgivareinom Stockholms läns landsting och kommunerna behöver tillsammans arbeta fram en an-svarsfördelning förtydligad i lokala vårdprogram. Exempelvis bör stödet till anhöriga fin-nas med i uppdraget både för minnesmottagningarna och husläkarverksamheten så attverksamheterna stödjer varandra och vårdkedjan hänger ihop. Samordnande kontaktpersonSamtliga parter i vård- och omsorgsarbetet kring personer med demens och även anhöriga,efterlyser en samordnande kontaktperson som kan fungera som "spindeln i nätet", somskulle kunna sköta kontakterna mellan primärvård/landsting och omsorg/kommun. En mo-dell finns i Kalmar där distriktssjuksköterskan är processansvarig för utredningen. Ävenanhörigstöd ligger under distriktssköterskans ansvar, vilket innebär att hon anordnar utbild-ningsträffar för anhöriga. Innehållet i stödet omfattas av medicinsk information, bemötandeoch andra råd och tips. Vid utbildningsträffarna deltar även kommunens handläggare somger information om hjälpinsatserna och olika boendeformer. Gemensam vård och omsorgsplanering samt årlig uppföljningSedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närdet finns behov ska en gemensam individuell plan upprättas för personer med psykiskafunktionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga för attbehoven av både hälso- och sjukvård och socialtjänst ska tillgodoses. Dokumentet skaockså beskriva de olika insatser och vårdgivarnas ansvar.Hälso- och sjukvården och socialtjänsten bör minst en gång per år följa upp sjukdomensförlopp och anpassa läkemedel, vård och omsorg. Då är det viktigt att föra ett enskilt sam-tal med den anhörige, dels för att följa upp om de beviljade stödformerna är tillräckliga,dels för att kontrollera om den anhöriga fortfarande har möjlighet och ork att vårda sin de-menssjuka närstående. Huruvida gemensamma individuella planer tas fram och årliga upp-följningar görs enligt ovan är okänt men mycket talar för att det inte sker i tillräckligomfattning.Förbättrad kompetensTrygghet är en viktig faktor i omhändertagandet av personer med demens och deras anhö-riga. Anhöriga önskar mer information, och att vård och omsorg utförs av yrkeskunnig per-sonal i sjukdomens alla skeden – från diagnos till palliativ vård, en period som ofta löperöver 5–7 år.Fortbildning för läkare, distriktssköterskor, arbetsterapeuter, biståndshandläggare, vård-och hemtjänstpersonal och andra är också nödvändigt för att öka förståelsen och kunskapenom det komplexa sjukdomstillstånd som demens är, och hur det drabbar de anhöriga. Ökad kompetens för alla yrkesgrupper som kommer i kontakt med demenssjuka, inomsåväl kommun som landsting, innebär att man kan identifiera risker på ett tidigt stadium.En effekt av detta blir att förhindrar kostsamma åtgärder senare i sjukdomsförloppet samtatt livskvaliteten hos patienterna och deras anhöriga förbättras. Fungerande hemvårdFör många äldre är stödet från en anhörig en förutsättning för att kunna bo kvar i det ordi-nära boendet.8För att anhöriga ska klara av detta krävande och mångfacetterande uppdragmåste det finnas ett utvecklat stöd från såväl landsting som kommun, vilket förutsätter ettfungerande samarbete mellan geriatrik, primärvård och äldreomsorg.9Hemvården bör ut-formas i samarbete med de anhöriga som är "experterna" i fråga om vilka behov närstå-ende i fråga har. För att erbjuda personer med demens och deras anhöriga bättre stöd skulleen utökad satsning på uppsökande verksamhet vara önskvärd, där de olika huvudmännentar ett gemensamt ansvar. Önskvärt är också att det skulle finnas ett fungerande multipro-fessionellt team för att möta behoven. Ett team som är mobilt och kan uppsöka den som ärsjuk, och inte tvärtom. Adekvat stöd och ersättningStödinsatser till anhöriga har en positiv effekt på deras hälsa vilket minskar landstingetskostnader på sikt.10Anhöriga som uttrycker önskan om att vårda närstående med demens-sjukdom behöver genom samhällets försorg få förutsättningar för detta, såväl i fråga omeko- nomi som hjälp med vård- och omsorgsinsatser till den sjuke. Inte minst med tanke påatt lejonparten av anhörigvårdarna själva tillhör gruppen äldre. Olika typer av tekniskahjälpmedel kan vara till stor hjälp för den anhöriga och bevara den demenssjuke personensoberoende så länge som möjligt. Idag förskrivs sällan sådana hjälpmedel för den här grup-pen. KvalitetsindikatorerAntalet nationella indikatorer för vård och omsorg för personer med demenssjukdom är 14stycken. Merparten är så kallade utvecklingsindikatorer - det vill säga indikatorer som inteär möjliga att kontinuerligt följa med de uppföljningssystem som finns i dagsläget.11Ingenindikator tar upp stödet till anhöriga. Det är önskvärt att man i framtiden skapar indikatoreräven för anhörigstöd. Registrering i och användningen av kvalitetsregistret SveDem bordegöras i större sträckning av vårdgivarna än som sker idag. Ekonomiska konsekvenserDe anhöriga svarar för den helt dominerande delen av närståendes omsorg och omvårdnadi eget boende. Att sjukvården ser anhöriga som en samarbetspartner och ger adekvat stöd ärpå sikt kostnadseffektivt för landstingets del. Konsekvenserna av otillräckligt stöd kan ledatill ökade kostnader och vårdkonsumtion för såväl patienter som anhöriga.

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Våren 2006 kartlades verksamheter i Sverige som arbetar för att få män som
utövar våld att upphöra med sin våldsutövning mot kvinnor och barn, samt
verksamheter som riktar sig till flickor och pojkar som i sin familj upplever
mäns våld mot kvinnor. Med anledning av en nationell utvärdering av
stödinsatser till barn, vilken pågår 2008 till 2011, genomfördes en förnyad
kartläggning sommaren 2010, av verksamheter riktade till barn som upplever
våld. För denna ansvarade docent Maria Eriksson, Sociologiska institutionen,
Uppsala universitet. Forskningsassistent Marta Wycichowska deltog
också i arbetet. Den här rapporten redovisar resultatet av den förnyade kartläggningen
och beskriver förändringar på fältet under perioden 2006 till
2010.
2010 års kartläggning har begränsats till de typer av organisationer som
utifrån 2006 års rapport kan antas vara de mest relevanta när det handlar om
stöd till barn som upplevt våld: kommunala verksamheter, kvinnojourer samt
barn- och ungdomspsykiatriska mottagningar. Kvinnojourerna respektive
barn- och ungdomspsykiatriska mottagningar fick en enkät som motsvarar
den som skickades ut 2006. Verksamheter i kommunal regi kartlades genom
en genomgång av kommunernas hemsidor. När det gäller vissa nytillkomna
verksamheter har informationen från hemsidan kompletterats med telefonintervjuer.
För att lokalisera verksamheter har viss information också inhämtats
via Länsstyrelserna, forsknings- och projektfinansiärer (som Allmänna
Arvsfonden) samt genom generella sökningar på internet och personliga
kontakter på fältet.
Kartläggningen visar att stöd till barn som upplevt våld är ett fält som
fortfarande expanderar. Antalet identifierade verksamheter har ökat och i
den länsvisa förteckning över verksamheter som finns i rapportens bilaga 1
återfinns totalt 132 verksamheter (jämfört med 87 år 2006). Det är framförallt
bland kommunerna ökningen kan ses och kartläggningen tyder på att det
idag är minst 147 av landets kommuner som själva erbjuder stöd till barn
som upplevt våld. Kartläggningen visar också att det här är ett fält som konsoliderats,
på så sätt att flera små aktörer (i första hand kommuner) slagit sig
samman och etablerat gemensamma verksamheter. Vidare är det fler verksamheter
erbjuder både individuella insatser och grupper för barn, 46 jämfört
med 26 år 2006. Det går att urskilja några nyheter på fältet, i form av nya
modeller för barngrupper, och för terapi för barn och deras omsorgspersoner.
Nyheterna till trots är dock de övergripande tendenserna i stöd och hjälp till
10
barn som upplevt våld densamma 2010 som de var 2006: den vanligaste
formen av insats riktad direkt till barnen tycks fortfarande vara individuella
samtal, oftast benämnda krissamtal, och det är fortfarande oklart i vilken
grad det finns specialisthjälp för de barn som behöver annan hjälp än individuella
krissamtal eller en pedagogisk barngrupp.
Det har varit möjligt att hitta uppgifter om individuella samtal för barn
från minst 112 verksamheter (jämfört med 67 år 2006). Även denna gång är
det så att det i de flesta fall finns uppgifter om att det här arbetet följer eller
inspirerats av Rädda Barnens arbetsmodell Trappan. Det gäller både kommuner
och frivilligorganisationer. När det gäller grupper för barn har de
också blivit vanligare, jämfört med läget 2006. Uppgifter om grupper för
barn finns från 61 verksamheter (jämfört med 41 år 2006). Fortfarande dominerar
modeller för pedagogiska och jag-stödjande grupper vilka ursprungligen
utarbetats för grupper för barn till föräldrar som missbrukar alkohol.
Det går dock att se en del nyheter på fältet. Internationellt har särskilda program
för barn som upplever mäns våld mot kvinnor har funnits sedan åtminstone
15 år tillbaka. Den stora skillnaden mellan dessa program och de
modeller som ligger till grund för de pedagogiska och jag-stödjande grupperna
i Sverige är att de internationella mycket tydligare sätter fokus på våld
och skydd. Ett av dessa våldsfokuserade program finns nu också översatt till
svenska: ett kanadensiskt grupprogram riktat till förskolebarn respektive
skolbarn. Till programmet hör också en insats till barnens mammor. Ytterligare
en ny våldsfokuserad modell för arbetet i barngrupper är en modell för
terapigrupper för barn hämtad från Alternativ til Vold i Oslo (ATV). Den är
utformad för barn i skolåldern eller äldre och även här är rekommendationen
att arbetet med barnen åtföljs med en parallell insats riktad till mammorna
och om möjligt även till papporna. Vid Alla Kvinnors Hus i Stockholm har
ytterligare en ny typ av grupp utvecklats, som ett komplement till befintliga
gruppinsatser. I ett projekt med medel från Allmänna Arvsfonden har boende
barn erbjudits dramagrupp. Den här typen av grupp har fokus på konsekvenserna
av våldet, snarare än känslomässig bearbetning och våldet "i sig".
Kartläggningen från 2006 visade att skyddade boenden för våldsutsatta
kvinnor och deras barn erbjuder ytterligare interventioner för barn som går
utöver individuella samtal och grupp. Det är både ett miljöterapeutiskt inriktat
arbete och stöd i vardagen så att barnen får en rimlig tillvaro under tiden
på det skyddade boendet. Redan 2006 stod det klart att de frivilliga kvinnojourerna
uppmärksammar barn i allt högre utsträckning. Enligt enkätsvaren
2010 kommer den ökande uppmärksamheten också till uttryck i att kvinnojourerna
satsar mer resurser på barn. Av enkäten framgår att 74 av de 97
svarande jourerna har anställd personal (jämfört med 57 av 70 svarande jourer
2006) och att av dessa har 31 (42 procent) personal med särskilt ansvar
för att arbeta med barn/unga som upplevt våld (jämfört med 6 jourer, 11
procent 2006).
11
När det gäller specialisthjälp till barn som upplevt våld visade 2006 års
enkät till barn- och ungdomspsykiatriska mottagningar att det varierade avsevärt
från mottagning till mottagning hur man inom barn- och ungdomspsykiatrin
ser på frågan om barn som lever med våld i sin familj. Därigenom
blir barns möjligheter att få kvalificerad hjälp från barn- och ungdomspsykiatrin
väldigt olika beroende på var i landet de bor. Man kunde också notera
att när det gäller barn- och ungdomspsykiatrins särskilda insatser för barn
som upplever mäns våld mot kvinnor framkom att de flesta använde sig av
Rädda Barnens material Trappan. Det är samma material och modell som
används av socialtjänsten och frivilligorganisationerna. Med tanke på att
barn som söker hjälp hos BUP många gånger är barn med behov som socialtjänsten
och frivilligorganisationerna inte anser sig ha kompetens att tillgodose,
var dessa svar något som i sin tur väckte frågan i vilken grad barn- och
ungdomspsykiatrin i landets olika delar reellt möter behoven av en specialkompetens
som går utöver den som finns hos socialtjänst och frivilligorganisationer.
Den bild som förmedlas i 2010 års enkätsvar ligger på många sätt
nära den tidigare enkätens resultat. Sammantaget kan även svaren från 2010
års enkät tolkas som att BUP endast i undantagsfall erbjuder en insats inriktad
på barn som upplever mäns våld mot kvinnor. Det finns dock några nyheter
i enkäten. En av dessa är behandlingsmodellen Traumafokuserad kognitiv
beteendeterapi (TF-CBT), och just när det gäller TF-CBT pågår också
ett utvecklingsarbete på området.
När det gäller de perspektiv som interventionsmodellerna bygger på dominerar
fortfarande ett utvecklingsperspektiv på barn, där barn blir objekt för
vuxnas ansvar, snarare än aktörer med rätt till delaktighet och medbestämmande,
liksom könsblinda perspektiv där individuell avvikelse står i fokus.
Nyheterna på området skulle på sikt kunna bidra till en breddning av perspektiven.
Det är dock ännu för tidigt att dra några säkra slutsatser om en
sådan utveckling.

A 3-yr study on the use of tangible symbols (i.e., objects and pictures used as symbols) by 41 children (aged 3–18 yrs) with a variety of handicapping conditions was conducted to follow up on an earlier study by the authors (see record 1990-15438-001) that revealed their utility for children who are deafblind. The vast majority of participants learned to use tangible symbols, allowing them to overcome the restrictions imposed by gestural communication. A number of the participants progressed beyond tangible symbols and learned to use abstract symbol systems, including speech. A few of the participants did not learn to use tangible symbols during the time span available for intervention. Data describing the progress of participants are presented. Participants are grouped according to outcome, and the characteristics of each group are discussed in terms of the communication skills of participants as they began intervention. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

This article describes a nursing intervention called Teen Club that was designed to reduce risk-taking behavior and improve well-being in female African American adolescents. Participants were referred to Teen Club by their nurse practitioners, physicians, and a community health nurse who were working at an urban neighborhood health center's teen clinic. Referrals were based on factors such as parental substance abuse, lack of social and family support, and other characteristics thought to increase vulnerability to risk-taking behavior. The 2-year intervention included weekly group meetings co-led by a European American female community health nurse and a Latino American male community worker, supplemented by case management and home visits by both these persons. Findings from a retrospective group interview conducted with 11 of the 12 original participants are presented. This is the first step in a series of pilot studies designed to refine the Teen Club intervention in anticipation of a future prospective, randomized investigation of this health promotion and disease prevention model of nursing care.

This article describes a nursing intervention called Teen Club that was designed to reduce risk-taking behavior and improve well-being in female African American adolescents. Participants were referred to Teen Club by their nurse practitioners, physicians, and a community health nurse who were working at an urban neighborhood health center's teen clinic. Referrals were based on factors such as parental substance abuse, lack of social and family support, and other characteristics thought to increase vulnerability to risk-taking behavior. The 2-year intervention included weekly group meetings co-led by a European American female community health nurse and a Latino American male community worker, supplemented by case management and home visits by both these persons. Findings from a retrospective group interview conducted with 11 of the 12 original participants are presented. This is the first step in a series of pilot studies designed to refine the Teen Club intervention in anticipation of a future prospective, randomized investigation of this health promotion and disease prevention model of nursing care.

Families, applied researchers, and teachers and support providers continue to be interested in effective strategies for teaching generalized repertoires of communicative skills to learners with severe disabilities. The present study assessed the effects of a general case training procedure in establishing manding or requesting responses by three students, aged 5–10 yrs old, with severe disabilities across a range of settings and situations. The data indicated that the general case approach was successful in establishing generalized manding for all three students. The limitations of the study and the implications of these results for future research and application are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Sammanfattning

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

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

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

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

BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.

This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure
environments for a group of school-aged children with severe disabilities, including complex disorders and a combination
of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development
of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all
reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version
(ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and
participation in school or work were of highest importance, but few reported ELS involved directly interacting with other
children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore,
interventions would be focused on the overall goal that children with severe disabilities take initiatives to become
independent and to form relationships with others.

Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.

The Boston Psychiatric Rehabilitation (BPR) approach is individualized and
characterized by being based entirely on the individual's unique needs and
preferences in the areas of working, learning, social contacts, and living
environment. Relatives of clients in mental health services influence the
client's possibilities for recovery by their everyday relationship. Relatives
have, however, traditionally had a subordinated role in the care of their
mentally ill family member. The perspective of relatives is an important aspect
in the development of new approaches to psychiatric rehabilitation. The purpose
of this study was thus to describe and explore relatives' experiences of the BPR
approach. Ten relatives of clients in mental health services taking part in the
BPR were interviewed. The interviews were transcribed and analyzed with a
qualitative content analysis method to explore relatives' experiences of the BPR
intervention in a county in Sweden. The findings from the interviews could be
summarized in the theme "To meet the clients' needs" consisting of three
categories: "Dependence on staffs' competence," "Responsibility for user
involvement," and "The necessity for coordination between authorities and
caregivers." The findings suggest that relatives may contribute with important
information about clients' needs related to outcome of care. Relatives'
perspectives may be of importance in future development of BPR. Further research
about the relatives' role in psychiatric rehabilitation is needed as well as
studies that compare different kinds of psychiatric rehabilitation from the
perspective of relatives.

Stiftelsen Stockholms läns Äldrecentrum har undersökt situationen för yngre personer med demenssjukdom (yngre än 65 år) och deras anhöriga. Fokus har lagts på att beskriva de specifika problem och behov som finns och en kartläggning har gjorts av vilka befintliga resurser som erbjuds för att möta upp behoven.

Objective: Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design. Method: Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization. Results: As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers. Conclusion: Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

OBJECTIVE:
Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design.
METHOD:
Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization.
RESULTS:
As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers.
CONCLUSION:
Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed.

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

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

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

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

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

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

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

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

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

Anhörigomsorg är del av en komplex väv med olika nivåer, individuella, familjemässiga
och övergripande samhälleliga, där åtminstone de senare har begränsade
resurser. Denna rapport presenterar och diskuterar kunskapsläget inom
svensk och internationell forskning om anhöriga till äldre. Vi sätter den svenska
anhörigomsorgen i ett större sammanhang genom resonemang om demografiska
förutsättningar, historiska tillbakablickar och internationella utblickar. Nutid
belyses med aktuella undersökningar och vi tror att framtiden kan klaras tack
vare den allt större överlappning vi redan ser mellan många olika former av
hjälp, service, omsorg och vård. Vi ställer frågan om dessa mönster kanske förbises
i de ofta dystra, rent demografisk-ekonomiska framskrivningarna.
Rapporten redovisar många svenska undersökningar av anhörigomsorg, både
i befolkningen i stort och bland äldre. Det förefaller klart att det skett en faktisk
ökning av anhörigomsorgens omfattning från 1990-talet och början av 2000-
talet, något som flera studier visar. Resultat från en europeisk undersökning med
gemensamma frågor och svarsalternativ tyder på att anhörigomsorg är vanligare
i Nordeuropa än i Sydeuropa vilket nog strider mot gängse föreställningar.
Kanske är det i Norden vanligare att vara hjälpgivare men inte med lika omfattande
engagemang eller lika länge och man bor sällan tillsammans. Då fördelas
nog omsorgen på fler händer. I Sverige angav mindre än 1 procent att de gav
omsorg på heltid, i Spanien 5 procent. Sammantaget har, i Sverige liksom i
övriga Europa, mer än 4 av 10 i befolkningen en aktuell eller tidigare personlig
erfarenhet av att ge omsorg, och på befolkningsnivå är anhörigomsorgen klart
större än den offentliga. De flesta svenska studier visar att det är ungefär lika
vanligt bland kvinnor och män att vara givare av anhörigomsorg. Kvinnor ger
dock oftare personlig omvårdnad och de ger fler timmar omsorg än männen.
De flesta omsorgsgivare ger ganska få hjälptimmar, men timinsatserna ökar
med stigande ålder och är högst bland de äldsta. I genomsnitt ger omkring 30
procent av omsorgsgivarna daglig hjälp, men den andelen stiger till nästan 40
procent för anhörigvårdare i 65–80 årsåldern och till 80 procent för dem som är
ännu äldre. Äldre utgör således 30 procent av alla som ger omsorg, oftast till
andra äldre, men utför ungefär 4 av 10 omsorgstimmar. Äldre personer är inte
bara mottagare av omsorg utan minst lika ofta också givare.
De flesta givare av anhörigomsorg ger "lättare" former av insatser (skjutsning,
passning, tillsyn etc.), insatser som många gånger säkerligen är viktiga och kan
vara avgörande för mottagaren. Det är viktigt att se det stora spektret av anhörigomsorg
och att det också finns grupper av anhöriga (ofta äldre personer) som
gör omfattande insatser som kan påverka såväl egen hälsa som arbetsliv. Vid
små hjälpbehov – fallet för de flesta – får man lite hjälp främst av anhöriga, vid
större behov mer hjälp och då av både anhöriga och av kommunen. Delat ansvar
7
är vanligt och även vad omsorgsgivare och mottagare önskar. Få önskar bära
ansvaret ensamma och få önskar att ansvaret helt ligger på det offentliga.
Historiskt utgör barn och andra anhöriga en viss trygghet på ålderdomen,
något som inte tillhör det förflutna, utan snarare kommer att få större betydelse
framöver. Anledningen är demografisk: allt fler har nära anhöriga i form av en
egen familj. Familjens relativa betydelse har ökat, inte minskat som man ibland
föreställer sig. Detta accentueras av att den offentliga omsorgen visserligen är väl
utbyggd i Sverige, men tycks ha nått gränsen för vad den kan uträtta, praktiskt
och finansiellt. Anhörigomsorgen har även socialpolitiska aspekter. Den som är
eller varit anhörigvårdare vill helst inte själv vara mottagare av omfattande anhörigvård,
utan hellre få huvuddelen av omsorgen från det offentliga. Man kan
nog förutse ännu strängare ransonering av offentliga tjänster i framtiden, där
anhöriga och marknadsbaserade tjänster är alternativen, möjligen tillsammans
med växande insatser från ideella organisationer.

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

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

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

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

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

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

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

The authors conducted a meta-analysis of studies on the correlation between parents' PTSD symptom severity and children's psychological status. An extensive search of the literature yielded 550 studies that were screened for inclusion criteria (i.e., parent assessed for PTSD, child assessed for distress or behavioral problems, associations between parent PTSD and child status examined). Sixty-two studies were further reviewed, resulting in a final sample of 42 studies. Results yielded a moderate overall effect size r = .35. The authors compared effect sizes for studies where only the parent was exposed to a potentially traumatic event to studies where both parents and children were exposed. A series of moderators related to sample characteristics (sex of parent, type of traumatic event) and study methods (self-report vs. diagnostic interview, type of child assessment administered) were also evaluated. The only significant moderator was type of trauma; the effect size was larger for studies with parent-child dyads who were both exposed to interpersonal trauma (r = .46) than for combat veterans and their children (r = .27) and civilian parent-child dyads who were both exposed to war (r = .25). Results support the importance of considering the family context of trauma survivors and highlight areas for future research.

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.