Bibliotek

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.

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

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

Abstract

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

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

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

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

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.

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.

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

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

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

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

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

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

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

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

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

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

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.

In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.

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

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

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

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

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

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

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

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

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

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

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

Methods

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Abstract: This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Poddprofilen Nemo Hedén har skrivit den viktiga boken Beroende om sin väg ut ur missbruket. Kan du ha problem? Är en anhörig drabbad? Detta är en bok som kommer att göra skillnad. Beroendesjukdomen är en av våra stora dödliga folksjukdomar. Men trots att var tionde svensk är drabbad pratar vi nästan inte om den. Poddprofilen Nemo Hedén har gjort till sin livsuppgift att ändra på den saken.

Beroende är en djupt personlig fackbok med syftet att försöka hjälpa och inspirera människor. Nemo vill avliva alla tabun, missförstånd och fördomar som finns kring sjukdomen. En problematik som faktiskt dödar människor dagligen - helt i onödan. "Jag har skrivit en bok som jag hade behövt att läsa när jag var i missbrukets mörka klor. När jag kände mig ensammast och räddast i hela världen. När det kändes som att livet var slut och som att det inte fanns någon väg ut. Men boken är lika mycket för alla anhöriga. De får lida så otroligt mycket, trots att de är helt oskyldiga", skriver Nemo i förordet.

Boken är tematiskt upplagd och författaren berättar lyhört och kunnigt om alla aspekter av beroendesjukdomen. När är man i riskzonen? Vilken hjälp finns att få? Hur farligt är ett återfall? Vad innebär tolvstegsrörelsen? Hur återskapar man sanna och varaktiga relationer? Och kanske viktigast, hur förlåter man sig själv efteråt?

Som förälder till ett barn med neuropsykiatrisk diagnos känner du dig ofta ensam, missförstådd och som en krigare för ditt barn. Den här boken, skriven av två föräldrar till barn med diagnoser, erbjuder såväl igenkänning som enkla råd så att du själv kan må bättre och orka med npf-familjelivets utmaningar.Hur du tar svåra samtal med skolan, enkla tekniker för återhämtning, hur ni klarar parrelationen eller parerar välmenta råd från personer i omgivningen. När det känns som att nerverna sitter utanpå behövs konkreta verktyg!Författarna bjuder på personliga berättelser ur vardagen, både gripande och igenkännande, blandat med tips från experter på områden som stress och utmattning, svåra samtal samt familjestöd. Här finns hjälp för att orka med att vara en bra förälder, kunna släppa skam- och skuldkänslor och ha kraft över till dig själv. Boken är också till dig som är vän, anhörig och till dig som möter npf-föräldrar i din yrkesvardag, så att du kan stötta och hjälpa på bästa sätt.

'Jag tror fortfarande inte att jag riktigt vilat färdigt från barndomen. Jag undrar om jag någonsin kommer att göra det. Vila färdigt." Så skriver Jenny Jejlid när hon berättar historien om hur det är att växa upp med ett autistiskt och utvecklingsstört syskon. Idag är hon vuxen och arbetar inom omsorgsvärlden, och ser tillbaka på sin uppväxt som lillasyster till en äldre bror som inte var som andra. Hon berättar om när det onormala blir normalt, och när känslor av kärlek och hat blandas med skam och skuld. Men hon berättar också om vägen framåt, och om känslor av hopp.

Jag ställde frågor till mitt gossebarn när vi var ensamma:
- Vilka hemligheter bär du på min son? Vilket ursprung har din gåtfullhet? Vad känner du? Vilket liv finns inom dig? Är det mörk ångest? Känner du glädje? Ser du samma verklighet som jag, eller blir allt kaos inom dig? Vad tycker du om?'

Några månader efter att Fred föddes börjar misstankar växa hos hans mamma Maud. Den lilla bebisen följer inte riktigt samma utveckling som andra barn i hans ålder, och han är svår att få kontakt med. Han är utvecklingsstörd, hon är säker på det. Både sjukvårdspersonal och familj försöker muntra upp henne, det är säkert inget fel på pojken, alla barn utvecklas olika.

Ju äldre Fred blir desto tydligare blir det dock att han är annorlunda från andra barn. I 'Freds bok' berättar Maud om sin egen upplevelse av att ha ett barn med en utvecklingsstörning och autism, men hon berättar också om samhällets och omvärldens reaktioner på hennes älskade son. Detta är en sann berättelse om förtvivlan, sorg och rädsla, men också om lycka och hopp. Men framför allt annat är det en berättelse om kärleken mellan mor och son.

Abstract [en]

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Abstract [en]

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Abstract

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

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.

Purpose: A single-subject alternating treatment design was used to (a) evaluate the influence of translucency (i.e., the guessability of the symbol when the referent is known) and complexity (i.e., the number of lines or strokes that compose the symbol) on Blissymbol acquisition and (b) compare the effectiveness of computer-based instruction (CBI) and traditional teacher-based instruction (TBI) on students' accuracy in identifying Blissymbols.

Method: Three students with communication disorders were taught to identify 40 Blissymbols using the two instructional formats.

Results: Findings revealed that high translucency Blissymbols were learned significantly faster than low translucency Blissymbols for all participants. High complexity assisted learning when translucency was high, but hindered learning when translucency was low. These results were evident in both interventions.

Although the importance of iconicity in the learning of symbols has been widely acknowledged, there have been few systematic investigations into the influence of culture on the ratings of symbol iconicity. The purposes of this study were two-fold: to determine (a) the translucency ratings of specific Blissymbols as rated by 6- to 7-year-old Setswana-speaking children (one of South Africa's 11 official languages); and (b) whether the ratings changed after second and third exposures in order to determine the learnability of these symbols. This study is partially based on the study by Quist et al. (1998), which utilized Dutch and American participants. Thirty-four Setswana children were exposed to 93 selected Blissymbols. A 3-point semantic differential scale consisting of three faces accompanied each Blissymbol, without the written gloss. This procedure was repeated over a period of 3 days. The results indicated that the majority of Blissymbols were rated as having high translucency ratings. The research further demonstrated significant differences in translucency between first and second exposures, suggesting that learning of the symbols had occurred. The comparison between the results of the current study and the results reported in the Quist et al. study reveal that the translucency ratings of the majority of the selected Blissymbols ranged from moderate to high for all three studies, but that the distribution of symbols across the ratings appears to be different.

Much has been written about how children of Holocaust survivors tend to absorb the psychological burdens of their parents. But questions remain regarding such parental transmission of Holocaust trauma. What was in fact passed on from parent to child? How does the transmission occur? Do parents invariably transmit and are children equally susceptible? The purpose of this article is to discuss these issues and present a model in which the process of trauma transmission can be understood more consistently. After a brief description of that which was transmitted, four prevalent theories of trauma transmission are described, including the psychodynamic, sociocultural, family system, and biological points of view. Thereafter, some of the mitigating and aggravating factors are presented that are assumed to decrease or increase the risk of children to absorb the trauma of their parents and to develop specific second-generation psychopathology as a result. In conclusion, an integrative view is suggested that attempts to define the possible influence of biological predisposition, individual developmental history, family system and social situation on transgenerational influence of Holocaust trauma.

Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2)

Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4)

Conclusions: Support to spouse carers of PwD should address the carer-care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.

Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.

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

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

Psykisk ohälsa är ett allvarligt hälsoproblem bland barn och ungdomar och därmed ett angeläget område för samhällsinsatser. Det mesta av de resurser som samhället satsar på barn och ungdomar ges i form av generella insatser. Mödra- och barnhälsovård, förskoleverksamhet, skola, skolhälsovård, skolbarnsomsorg och ungdomsmottagningar är exempel på vanliga verksamheter. Andra samhällsinsatser (t.ex. insatser inom socialtjänsten och barn- och ungdomspsykiatrin) riktas enbart till barn och ungdomar som på olika sätt far illa eller behöver särskilt stöd. Sådana insatser kallas selektiva.

Även om barns och ungdomars psykiska hälsa och goda uppväxtvillkor är högt prioriterade områden är samhällets resurser begränsade. Det är därför viktigt att tillgängliga resurser används så väl som möjligt, dvs. att man lägger pengarna på insatser som har så bra effekter som möjligt i förhållande till vad de kostar. Syftet med denna rapport är att beskriva vikten av att ha ett sektorsövergripande och långsiktigt perspektiv när man på olika nivåer inom kommuner, landsting och stat ska prioritera mellan insatser som påverkar barns och ungdomars psykiska hälsa.

Barns och ungdomars psykiska hälsa påverkas av såväl individuella egenskaper som av faktorer i uppväxtmiljön. Generella insatser av hög kvalitet kan sannolikt förebygga och minska psykisk ohälsa hos barn och ungdomar. Eftersom de generella insatsernas innehåll, organisation och resurser har betydelse för hur barnen mår påverkar de troligen även omfattningen av de selektiva insatser som en del barn och ungdomar kan komma att behöva under sin uppväxt och längre fram i livet. Det är troligt att det fanns ett samband mellan nedskärningarna inom förskoleverksamheten, skolbarnsomsorgen och skolan under 1990-talet och den samtidiga ökningen av antalet besök inom barn- och ungdomspsykiatrin. Samtidigt kan detta vara ett tecken på att samverkan mellan t.ex. skolan och barn- och ungdomspsykiatrin inte har fungerat tillfredsställande när det gäller att ge förebyggande stöd till barn efter deras behov utifrån olika kompetenser.

Den internationella litteraturgenomgång som gjorts till rapporten visar att det finns ett visst forskningsstöd för att exempelvis föräldrastöd, personal- och lärartäthet i förskolan och skolan, särskilda pedagogiska insatser samt lärarnas kompetens har betydelse för barns och ungdomars skolprestationer och psykiska hälsa. Det bör understrykas att detta inte innebär att man säkert vet att övriga insatser saknar effekt.

Det saknas i stor utsträckning svensk forskning om effekter av generella insatser för barn och ungdomar. Bristen på relevanta studier medför svårigheter när man ska utvärdera olika insatsers samhällsekonomiska konsekvenser. Mot bakgrund av hur stor betydelse de generella verksamheterna har för barns och ungdomars uppväxtmiljö är det viktigt att kunskapen om deras effekter på barns psykiska hälsa ökar. För att detta ska vara möjligt måste man, förutom att intensifiera forskningen, lokalt satsa på att dokumentera och följa upp de insatser som ges till barn och ungdomar. Detta är ett viktigt metodutvecklingsverktyg och en grund för att utveckla beprövad erfarenhet som kan spridas, diskuteras och jämföras med andra resultat.

I rapporten presenteras en samhällsekonomisk modell där kostnaderna för generella insatser ställs mot insatsernas effekter på barns och ungdomars psykiska hälsa och de samhällsekonomiska vinster som dessa i sin tur ger upphov till. Modellen bygger på ett tänkesätt för prioriteringar som inte bara tar hänsyn till den berörda huvudmannens kostnader för en viss insats, utan också till hur kostnaderna påverkas i andra samhällssektorer och på längre sikt.

För att göra en samhällsekonomisk analys inom detta område behöver man veta vad olika tänkbara insatser kostar och vilka effekter de har på barns och ungdomars psykiska hälsa. Man behöver också veta hur detta påverkar samhällets kostnader för andra insatser på kort och lång sikt. I rapporten ges exempel på vad olika generella insatser för barn och ungdomar kostar. Dessa kostnader jämförs sedan dels med kostnader för olika selektiva insatser för barn och ungdomar, dels med exempel på samhällets kostnader för psykisk ohälsa hos vuxna personer. De beräkningar som presenteras ska ses som exempel på en analysmetod och de är inte i första hand avsedda att användas som underlag för jämförelser och val mellan olika tänkbara insatser.

Samhällets kostnader kan bli relativt höga redan på förhållandevis kort sikt om psykiska problem inte förebyggs och motverkas i ett tidigt skede. Kostnaderna för en familjehemsplacering under två år uppgår till knappt 800 000 kronor och för en HVBplacering under totalt ett år till ca 1,1 miljoner kronor. Om dessa insatser inte visar sig tillräckliga blir kostnaderna ännu högre. I rapporten ges även exempel på vad kostnaderna för psykisk ohälsa kan uppgå till om den kvarstår under vuxenlivet. Om en person utvecklar psykosociala arbetshinder kan samhällskostnaderna uppgå till omkring 2 miljoner kronor under en trettioårsperiod. Även kostnaderna för psykiska sjukdomstillstånd kan vara höga, ca 7–9 miljoner kronor enligt det exempel som valts. För en enda missbrukare kan samhällets kostnader uppgå till omkring 12–15 miljoner kronor under en trettioårsperiod beroende på hur mycket kostnaderna diskonteras.

En rimlig hypotes är att det finns en samhällsekonomisk potential i att satsa på förebyggande arbete inom de generella verksamheterna för barn och ungdomar, inte minst mot bakgrund av att de framtida selektiva insatser som kan komma att behövas är så kostsamma. Kunskapen är dock inte tillräcklig för att man med säkerhet ska kunna säga att en viss insats innebär en framtida ekonomisk vinst. För att ändå få en uppfattning kan man räkna ut hur många barn som kan få en viss insats för den kostnad som sparas in om ett enda fall av psykosociala arbetshinder, psykisk sjukdom eller missbruk förebyggs. Om man t.ex. förebygger en enda persons missbruk under vuxenlivet, kan man för samma kostnad ge stödjande utbildning som syftar till att utveckla föräldrarnas kompetens och sätt att bemöta sina barn till ca 3 400 eller 6 900 barns föräldrar beroende på hur kostnaderna diskonteras. Den här typen av utbildningar har visat sig effektiv när det gäller att förebygga utåtriktade psykiska problem hos barn och ungdomar. Det förefaller inte orimligt att man genom en så omfattande utbildningsinsats kan förhindra att minst ett av barnen kommer att leva som missbrukare. Det är vad som krävs för att insatsen ska vara samhällsekonomiskt lönsam på lång sikt.

Samhällsekonomiska analyser behöver kompletteras med en beskrivning av de fördelningseffekter som insatsen leder till. Dessa kan vara av två slag. En del handlar om att beskriva vilka barn som gynnas av insatsen. Är det de barn som är mest angelägna att nå? Den andra delen handlar om att det är viktigt att beskriva var i samhället som olika kostnader och besparingar uppstår. Vissa samhällssektorer och huvudmän kan få högre respektive lägre kostnader som en följd av insatsen, vilket det är viktigt att vara medveten om eftersom det kan påverka aktörernas incitament för att genomföra olika insatser.

I rapporten illustreras detta med ett räkneexempel som tar fasta på att samhällskostnaderna för en person med psykosociala arbetshinder under 30 år är ungefär lika höga som kostnaderna för att minska klasstorleken i grundskolan för 80 barn under ett år. Om man antar att den förebyggande insatsen kan leda till att ett fall av psykosociala arbetshinder förebyggs går samhället som helhet varken med vinst eller förlust på lång sikt. För de enskilda aktörerna ser dock bilden olika ut. Kommunen har kostnader för genomförandet av insatsen som uppgår till drygt en miljon kronor. Dessa kostnader uppvägs i viss mån av att kommunens kostnader för psykosociala arbetshinder minskar i framtiden. Kommunen har dock ändå en nettokostnad på ca 650 000 kronor. För de övriga aktörerna som påverkas av psykosociala arbetshinder, t.ex. försäkringskassan, innebär däremot insatsen en ren intäkt. Ur ett strikt ekonomiskt perspektiv framstår alltså minskad klasstorl

AIMS AND OBJECTIVES: To explore how spouses of patients with severe chronic
obstructive pulmonary disease experience their role as informal caregiver.
BACKGROUND: Informal caregiver spouses are of pivotal importance in the way that
patients with chronic obstructive pulmonary disease cope with their daily life,
including their opportunity to stay at home and avoid hospitalisations in the
last stages of the disease. However, caregiving is associated with increased
morbidity and mortality among caregivers. Further understanding of the role as an
informal caregiver spouse of patients with severe chronic obstructive pulmonary
disease is needed to develop supportive interventions aimed at reducing the
caregiver burden.
DESIGN: The study had a qualitative exploratory design. The data collection and
analysis were based on framework method. Framework method is a thematic
methodology and consists of five key stages: familiarisation, identifying a
thematic framework, indexing, charting and mapping & interpretation.
METHODS: Three focus groups were conducted in November 2013 with 22 spouses of
patients with severe chronic obstructive pulmonary disease.
RESULTS: Undefined and unpredictable responsibility was found to be the
overarching theme describing the informal caregiver role. Underlying themes were:
being constantly in a state of alertness, social life modified, maintaining
normality, ambivalence in the relationship and a willingness to be involved.
CONCLUSIONS: The informal caregiver spouses experienced ambiguity about
expectations from their private and the health professionals' surroundings. The
informal caregiver spouses wanted to provide meaningful care for their partners,
but sought knowledge and support from the health professionals.
RELEVANCE TO CLINICAL PRACTICE: We recommend that nurses take on the
responsibility for including the informal caregiver spouses in those aspects of
decision-making that involve the common life of the patients and their spouses.

How are the burdens and difficulties of caregiving balanced by the satisfactions experienced? * How do the demands of caregiving change over time and what are the policy and practice implications of such changes? * How is a balance achieved between the needs of the caregiver and the cared-for person? The importance of family (informal) care both in making a reality of community care policies and in helping to sustain the quality of life of people who require support to remain within their homes is beyond doubt. However, whilst a considerable research and practice literature has developed in this area over the last ten years there remains much to learn about caring at both conceptual and practice levels. There is in particular a need to develop more dynamic models which account for the changing nature of care over time and integrates the perspectives of carer, cared-for person and the formal service network. Based on several years research conducted by the authors, Understanding Family Care integrates a number of theories and perspectives in order to provide a more holistic understanding of the needs of carers. Emphasis is placed on providing a balanced picture which recognizes both the burdens and satisfactions of caring, in addition to the coping efforts that carers employ. A new longitudinal model of caring is described and the various stages and processes are explored. Although the focus is primarily on the carer the perspectives of the cared-for person are not ignored and a model is presented which aids the integration of disparate viewpoints. In addition to theoretical and methodological debates, implications for policy and practice are fully explored. Understanding Family Care is recommended reading for practitioners and managers in the health and social services, as well as students of social science, nursing, gerontology and social work.

This article is about emergent self-determination for young children with disabilities in their home environments. The purpose of this study was to better understand family and home characteristics and how they influence the ways in which families can support the development of self-determination for their children with disabilities. Thirty families of young children with disabilities were interviewed, and their homes were systematically observed. Using a grounded theory design, an emergent model was developed that examined family and home context and the influence of context on the strategies that families used to support self-determination. Future research and practice implications of this research for supporting families are discussed.

Melle duckar för en sko som kommer flygande. Det kokar i Moas huvud och då kastar hon saker. Trots att Melle är van vid Moas utbrott så tycker hon att det är jobbigt. Speciellt i skolan ...

Det är tur att Moa är rolig också, annars skulle Melle inte vilja vara Moas storasyster.

Hur är det egentligen att ha ett syskon med adhd? Det vet Melle. Det är som en bergodalbana. Ibland är det lite läskigt och man kan få ont i magen, men ofta är det väldigt roligt med mycket skratt. Vad händer en helt vanlig dag hemma hos Melle? Hur tänker och känner hon när hennes lillasyster blir arg eller hittar på hyss?

• "En ljus beskrivning av en mors resa genom glömskans mörker" Göteborgs-Posten"Många böcker har jag läst om anhörigskapet vid demenssjukdom, än fler berättelser har jag lyssnat till i samtal. Den här boken kommer jag att bära med mig mer än någon annan. Den berör så djupt och Brun berättar så mänskligt." UNT"Och visst är det en paradox att smärtpunkterna, ja rentav känslan av Guds frånvaro kan frammana något så vackert och hoppfullt som denna roman. Men så är det ju också med författarskap som djupnar, där orden laddas av allt större erfarenhet, närvaro och mänsklig blick." Svenska DagbladetDet börjar vid slutet. En mamma är död. Det slutar vid början. Innan rädslan när Jonas och hans pappa märker det hon själv redan anar. Kortspelet hon förlorar gång på gång. Lunchen som lagas direkt efter frukost. Kassar som fylls med fel saker, örhängen, julkort och skoluppsatser. Försommarens syrener som inte längre väcker någon reaktion, eftersom hon inte längre minns att de doftar. En gång, innan hon började glömma, arbetade hon själv med minnet. Nu är hon yngst på demensboendet.En person som glömt vem hon är, finns hon kvar? Är det samma människa fastän personligheten bleknar bort? Och vad är störst? Minnet eller kärleken? Jonas Brun skriver om kampen med vården, om hjärnans vindlingar, om förtvivlan och tröst i vardagen med Alzheimers sjukdom."Hon minns inte" är en skildring av minnesförlust och en memoar, en månggrenad berättelse om en mor som skrivs tillbaka till livet. 

Fönstervy består av en samling tankekorn och dikter som har tillkommit under 25 års tid under en svår livsresa. Här och där har det glimtat ljust med dels galghumor och dels ren glädje. Livet, ja. Hemskt och härligt, inget att ta på för stort allvar men ändå enormt värdefullt - kontrasternas resa. 

Fönstervy är en samling av de kuriositeter man kan få syn på under en resa vidare någonstans. 

Analys av unga
och jämställdhet
På uppdrag av regeringen har Ungdomsstyrelsen
under 2013 genomfört en tematisk analys
av unga och jämställdhet. Utgångspunkten för
analysen är de mål som finns inom ungdomspolitiken
och jämställdhetspolitiken.
Den nationella ungdomspolitiken har två
övergripande mål:
1. alla ungdomar ska ha verklig
tillgång till välfärd
2. alla ungdomar ska ha verklig
tillgång till inflytande.
Jämställdhetspolitikens övergripande mål är att:
• kvinnor och män ska ha samma makt att forma
samhället och sina egna liv.
Detta följs av fyra delmål:
1. jämn fördelning av makt och inflytande
2. ekonomisk jämställdhet
3. jämn fördelning av det obetalda hemoch
omsorgsarbetet
4. mäns våld mot kvinnor ska upphöra.
Av dessa är det högst prioriterade målet att
mäns våld mot kvinnor ska upphöra.
Jämställdhet har till stor del kommit att handla
om kvinnors tillträde till det offentliga rummet
och andra sfärer som historiskt sett varit förbehållna
män. Framförallt har villkor på arbetsmarknaden,
representation inom politiken och
utbyggd barnomsorg och föräldraförsäkring utvecklats.
Men flera rapporter har även genom
åren beskrivit och utrett mäns relation till jämställdhet,
och det pågår en stor utredning om
Sammanfattning
män och jämställdhet som presenteras i början
av 2014.
Den huvudsakliga strategin som används för
att nå de jämställdhetspolitiska målen är jämställdhetsintegrering,
vilket innebär att samtliga
beslut inom alla politikområden ska präglas av
ett jämställdhetsperspektiv.
Sedan mitten av 2000-talet följer regeringen
upp ungdomspolitiken genom indikatorer och
tematiska studier. Inom jämställdhetspolitiken
har redovisningen varierat genom åren men ett
nytt uppföljningssystem är under uppbyggnad.
Sedan 2012 presenterar Statistiska centralbyrån
indikatorer inom området.
Fokus 13 är indelad i kapitel som följer de fem
huvudområdena för ungdomspolitiken:
1. utbildning och lärande
2. arbete och försörjning
3. hälsa och utsatthet
4. inflytande och representation
5. kultur och fritid.
Inom dessa områden analyserar vi situationen
utifrån de jämställdhetspolitiska mål som är relevanta.
Vi beskriver också större förändringsarbeten
inom det aktuella området. Rapporten
avslutas med en diskussion och förslag på områden
som Ungdomsstyrelsen menar behöver
utvecklas.
Att belysa jämställdhet bland unga berör en
rad politikområden, vilket omöjliggör en uttömmande
beskrivning. I huvudsak utgår vi från
myndighetens egen kunskap i form av Ungdomsstyrelsens
återkommande ungdomsenkät
som riktar sig till ett slumpmässigt urval persofoto:
Colourbox.com
Inlaga.indd 7 2013-12-18 15:58:28
8
ner i åldern 16–25 år. Vi använder även Ungdomsstyrelsens
attityd- och värderingsstudie
som riktar sig till ett slumpmässigt urval unga i
åldern 16–29 år och vuxna från 35 år.
Utöver Ungdomsstyrelsens enkäter har vi använt
indikatorerna för ungdoms- och jämställdhetspolitiken
och kompletterat med statistik
och fördjupad kunskap från andra myndigheter.
Vi har också initierat fördjupningsstudier om
ungas oavlönade hem- och omsorgsarbete, om
grupprocesser, maskulinitet och våld samt om
Ungdomsstyrelsens egen bidragsgivning kopplad
till unga och jämställdhet.
En annan viktig kunskapskälla är de fokusgruppsintervjuer
som vi har gjort med unga i
högstadieskolor på fyra orter runtom i landet.
Syftet har varit att fånga vilka erfarenheter unga
har kring jämställdhet i sin vardag och hur de resonerar
i dessa frågor. I denna sammanfattning
lyfter vi fram några viktiga tendenser.
Ungas syn på jämställdhet
Vi beskriver ungas syn på jämställdhet utifrån
våra enkätstudier och den intervjustudie vi genomfört.
Våra enkäter visar att unga i högre grad
än äldre ser jämställdhet som en viktig samhällsfråga.
Samtidigt är det vanligare bland unga att
svara att jämställdheten har gått för långt. I alla
åldrar är det vanligare att tjejer och kvinnor har
en positiv inställning till jämställdhet.
• Jämställdhet lyfts fram som en av de tre viktigaste
samhällsfrågorna just nu av 19 procent
av tjejerna och 11 procent av killarna i åldern
16–29 år (2013). I gruppen 35–74 år är andelarna
endast 7 procent av kvinnorna och 5 procent
av männen.
• Det är få unga i åldern 16–25 år som inte tycker
att jämställdhet är viktigt, men det är vanligare
bland killar (8 procent jämfört med 2 procent
bland tjejer 2012).
• Det är något vanligare att unga tycker att jämställdheten
har gått för långt jämfört med äldre
2013. Det är också vanligare att killar och män
instämmer i detta jämfört med tjejer och kvinnor.
• Killar instämmer i större utsträckning än tjejer
i könsstereotypa påståenden. Bland killarna
i åldern 16–25 år instämmer 21 procent i påstå-
endet att män är bättre chefer än kvinnor jämfört
med 7 procent av tjejerna (2012). Det är även
17 procent av killarna som instämmer i att kvinnor
bör ta ett större ansvar än män för sysslor i
hemmet och 14 procent instämmer i att kvinnan
bör ta det största ansvaret för barnen i en familj
(jämfört med 6 respektive 7 procent av tjejerna).
Inom ramen för uppdraget har vi genomfört en
intervjustudie. Genom denna ges en översiktlig
bild av områden som unga själva lyfter fram
som viktiga.
• Många återkommer till att tjejer, av olika anledningar
och på olika sätt, inte tar lika mycket
plats som killar. Oron för att bli ifrågasatt, hånad
eller ansedd som dum bromsar många av tjejernas
vilja att ta det offentliga utrymmet i anspråk.
I killgrupperna beskrivs upplevelser av att inte
bli tagen på allvar eller att bli sedd som stökig
för att man är kille.
• De flesta av tjejerna betonar vikten av att klara
arbetet i skolan, medan resonemangen varierar
bland killarna.
Inlaga.indd 8 2013-12-18 15:58:28
9
• Tjejers och killars förhållningssätt till idrott
skiljer sig åt mellan olika skolor och intervjugrupper.
En del tjejer är fysiskt aktiva i olika
idrottsformer och på olika nivåer. En del tjejer
uppger dock att de slutat med idrott för att hinna
med skolan, något som inte förekommer bland
killarna. Många killar säger att de är fysiskt aktiva
i olika sporter, vissa uttrycker ambitioner att
bli professionella idrottare.
• Utseende är något som på olika sätt kommer
upp i tjejgrupperna. Oftast finns en komplexitet
där tjejerna både reflekterar och ifrågasätter feminina
utseendeideal samtidigt som de strävar
efter att leva upp till dessa. I de intervjuer vi
gjort med killar talar de inte själva om utseendet
på samma sätt.
• Killars beteenden i grupp diskuterades i några
av intervjuerna. Killars sätt att uttrycka sig genom
att vara del av en grupp som hörs och syns
framträder.
Det är tydligt att unga upplever att det finns
olika förväntningar på tjejer och killar i skolans
miljö. Skolan är en arena där ojämställdhet
skapas men där det även finns möjligheter att
genomföra förändringar för att uppnå ökad jämställdhet
bland unga.
Utbildning och lärande
Det ungdomspolitiska området utbildning och
lärande omfattar både formell och icke formell
utbildning samt informellt lärande. Att kvinnor
och män ska ha samma möjligheter och villkor
i fråga om utbildning ingår även i regeringens
jämställdhetspolitiska delmål om ekonomisk
jämställdhet. Inom området ser vi en rad skillnader
mellan tjejer och killar. Många skillnader
har varit stabila över en längre tid. Särskilt
utmärkande är de könsbundna studievalen, att
killar generellt har sämre resultat än tjejer inom
skolsystemets alla delar och en ökande stress
bland unga tjejer.
Vi ser att tjejer och killar trivs olika bra i skolan.
Det är vanligare att tjejer är stressade jämfört
med killar. Omvänt så upplever killar i nå-
got mindre utsträckning att tjejer och killar blir
rättvist behandlade av lärarna. Det är också en
lägre andel bland dem som är nöjda med sin utbildning.
• Det är vanligare bland tjejer i årskurs 7–9 att
tycka att det är roligt att gå till skolan, 67 procent
jämfört med 49 procent bland killarna (2012).
• Redan i årskurs 7–9 finns tendenser att tjejer
är mer stressade än killar. På gymnasienivå är
könsskillnaderna när man mäter stress markanta.
Bland unga som känner sig stressade varje
dag eller minst en gång i veckan är könsskillnaderna
störst för egna krav och förväntningar på
skolarbetet (55 procent av tjejerna, 33 procent
av killarna), läxor/hemuppgifter (63 procent
av tjejerna, 43 procent av killarna) och betyg
(46 procent av tjejerna, 27 procent av killarna)
(2012).
Inlaga.indd 9 2013-12-18 15:58:28
10
• Av killarna i årskurs 7–9 uppger 24 procent
att hälften eller mindre än hälften av lärarna behandlar
tjejer och killar rättvist, jämfört med 10
procent av tjejerna (2012).
• Bland unga i åldern 20–25 år uppger 66 procent
av tjejerna och 55 procent av killarna att de
är ganska eller mycket nöjda med sin utbildning
(2012).
Tjejer och kvinnor presterar i genomsnitt bättre
än killar och män på alla utbildningsnivåer –
från grundskolan, via gymnasieskolan och upp
till högskolan.
• I årskurs 9 fick tjejerna bättre betyg än killarna
i alla ämnen utom idrott och hälsa läsåret
2011/12. Tjejerna nådde målen i större utsträckning
och deras slutbetyg från gymnasieskolan
är också bättre än killarnas på samtliga 17 nationella
program i gymnasieskolan. Dock visar
uppföljningen av resultaten från våren 2013 på
den största förbättringen i killars resultat sedan
meritvärdessystemet infördes 1998.
• Med den nya gymnasieskolan (Gy2011)
skärptes behörighetskraven till gymnasieskolan,
främst till de högskoleförberedande programmen.
Detta ledde till ökade könskillnader.
Könsskillnaden är störst för naturvetenskapsoch
teknikprogrammet, 2013 var 85 procent av
tjejerna och 81 procent av killarna behöriga.
• Tjejer fullföljer sina studier i större utsträckning
än killar. Bland unga som började i gymnasieskolan
hösten 2009 hade 72 procent av tjejerna
och 66 procent av killarna slutfört studierna
inom tre läsår. Även inom högskolan har kvinnor
generellt sett en högre examensfrekvens än
män.
I gymnasieskolan och på högskolan studerar
tjejer och killar ofta skilda ämnen och utbildningar.
Könsfördelningen ligger vanligen utanför
intervallet 40–60 procent.
• Bland dem som slutförde gymnasiestudier
läsåret 2011/12 var det endast på det naturvetenskapliga
programmet som andelen tjejer och
killar fördelade sig jämnt.
• Några gymnasieutbildningar hade en särskilt
sned könsfördelning. På fordons-, bygg- samt
el- och energiprogrammen utgjorde killar mer
än 90 procent av dem som slutförde utbildningen
läsåret 2011/12. På hantverksprogrammet
utgjorde tjejer mer än 90 procent. Könsfördelningen
varierar också mellan olika inriktningar
inom programmen.
• Forskarutbildningen har gått från en stark manlig
dominans till en jämn könsfördelning. Andelen
kvinnor var endast 8 procent bland dem som
tog doktorsexamen 1969/70. Läsåret 2000/01
passerade dock andelen kvinnor 40 procent.
Inlaga.indd 10 2013-12-18 15:58:28
11
Arbete och försörjning
I kapitlet om arbete och försörjning beskriver
vi flera områden som är kopplade till ungas
etablering. De övergripande ungdomspolitiska
målen att alla unga ska ha verklig tillgång till
välfärd och inflytande har en stark koppling till
arbete och försörjning. Området är också centralt
i jämställdhetspolitiken och berörs särskilt
av delmålen om jämn fördelning av makt och
inflytande, ekonomisk jämställdhet och en jämn
fördelning av det obetalda hem- och omsorgsarbetet.
Tjejer etablerar sig senare i arbetslivet, arbetar
i högre grad deltid och uppger att familjebildning
påverkar yrkeslivet i större utsträckning än
killar. Det är något vanligare att killar är arbetslösa
och långtidsarbetslösa jämfört med tjejer.
Vi ser också skillnader i lön mellan könen.
• Etableringsåldern, det vill säga den ålder när
tre fjärdedelar av en årskull har arbete, låg 2012
på 28 år för tjejer och 26 år för killar.
• Bland sysselsatta i gruppen 20–24 år arbetade
över 50 procent av tjejerna deltid 2012, medan
motsvarande andel bland killarna i samma åldersgrupp
var 26 procent. Andelen som arbetar
deltid är lägre bland både kvinnor och män i äldre
åldersgrupper, men skillnaden mellan könen
är ännu större bland dem.
• I kvalitativa studier lyfter tjejer oftare än killar
fram att familjebildning kommer att påverka deras
framtida yrkesliv. Studier visar dock att tjejer
och killar lägger ungefär lika mycket tid på
det obetalda hem- och omsorgsarbetet, men att
de delvis ägnar sig åt olika sysslor. När unga blir
föräldrar uppstår däremot betydande skillnader
mellan könen.
• I grupperna 20–24 år och 25–29 år uppger 15
procent av killarna att de någon gång har varit
ofrivilligt arbetslösa i mer än sex månader, jämfört
med 10 procent av tjejerna (2013). Bland
de i åldern 18–24 år som har varit inskrivna hos
arbetsförmedlingen i mer än 6 månader var 56
procent killar och 44 procent tjejer 2012. Andelarna
var desamma 2011.
• Löneskillnaden mellan könen är större bland
äldre än bland yngre, men även bland unga 18–
24 år har killar en högre lön än tjejer om vi ser
till medellön (lönerna har räknats upp till heltid).
Löneskillnader kan, förutom kön, bero på
ett flertal aspekter som skillnader i arbetslivserfarenhet,
utbildning, diskriminering, yrke och
inom vilken sektor som arbetet utförs.
Det finns en tydlig könssegregation bland unga
på arbetsmarknaden, vilket återspeglar den uppdelning
vi ser inom utbildningsväsendet.
• Av de 30 vanligaste yrkeskategorierna bland
unga i åldern 16–24 år har endast tre en jämn
könsfördelning 2011 (inom spannet 40–60 procent).
Detsamma gäller för gruppen 25–29 år.
Tidigare analyser kring de trettio vanligaste yrkena
i gruppen 20–64 år visar att det är få yrkeskategorier
som har en jämn könsfördelning
(2010).
Det finns olika sätt att mäta ekonomisk utsatthet.
Vi ser att det är vanligare att tjejer har svårt
att betala löpande utgifter och att de i större
utsträckning tar emot pengar från närstående.
Omvänt är det vanligare att killar har så allvarliga
svårigheter med sin ekonomi att de riskerar
vräkning och att deras skulder blir föremål för
Kronofogden.
Inlaga.indd 11 2013-12-18 15:58:28
12
• Det var 18 procent av tjejerna i åldern 16–25 år
som vid flera tillfällen haft svårighet att betala
löpande utgifter under det senaste året, jämfört
med 14 procent av killarna 2012.
• I gruppen 16–19 år var det vanligare bland tjejer
än bland killar att under det senaste året ofta
ha fått ekonomisk hjälp av föräldrar eller annan
anhörig, 47 procent av tjejerna och 39 procent
av killarna (2012).
• Det var 5,3 procent av killarna i åldern 16–25
år som hade så allvarliga skulder att de var föremål
för indrivning hos Kronofogdemyndigheten
jämfört med 2,7 procent av tjejerna 2012.
En annan del av ungas etablering handlar om
boende där vi också ser vissa skillnader. Det är
vanligare bland killar i åldern 20–25 år att bo
kvar hemma hos sina föräldrar (44 procent jämfört
med 29 procent bland tjejerna). Bland tjejerna
är det 49 procent som bor i en egen hyresrätt
i första hand jämfört med 33 procent bland
killarna (2011).
Oavlönat hem- och
omsorgsarbete
På uppdrag av Ungdomsstyrelsen har Marie
Evertsson och Katarina Boye, vid Stockholms
universitet, genomfört en fördjupningsstudie
om ungas oavlönade hem- och omsorgsarbete.
De har studerat den tid som läggs på obetalt
arbete och inställningen till jämställdhet bland
tjejer och killar i åldern 19–30 år (2010). I studien
görs en jämförelse med motsvarande åldersgrupp
2000.
Resultaten visar att könsskillnaderna i gruppen
19–30 år i rutinartat hushållsarbete var små redan
2000 och minskade ytterligare till 2010. I
familjer med barn tycks könsskillnaderna däremot
ha ökat. Om det beror på sammansättningen
i urvalsgruppen eller om det tyder på mer stabila
förändringar i mammors och pappors ansvarsfördelning
är en fråga för framtida forskning.
• Inställningen till jämställdhet har varit relativ
stabil mellan 2000 och 2010. Runt 55 procent av
killarna och drygt 65 procent av tjejerna tycker
att det är mycket viktigt att satsa på ett samhälle
där kvinnor och män delar lika på ansvar för
hem och barn.
• Fördelningen av hushållsarbetet bland unga
har blivit mer jämn mellan 2000 och 2010. Detta
beror framför allt på att tjejerna minskat tiden
för rutinartat hushållsarbete. I genomsnitt ägnade
tjejerna 10,5 timmar och killarna 9,0 timmar
per vecka åt hushållsarbete (2010).
• Killar ägnar mindre tid än tjejer åt rutinartat
hushållsarbete men det är vanligare att killar
hjälper anhöriga och släktingar utanför hemmet
med hushållsarbete (inklusive reparationer och
underhåll).
• Kvinnors hushållsarbetstid ökar betydligt när
de blir föräldrar och är som störst när barnet
är under två år. Hushållsarbetstiden ökar ytterligare
för kvinnan om familjen får fler barn.
Mäns tid ökar i lägre grad när de får sitt första
barn, sjunker lite med barnets ålder och ökar
inte heller med ytterligare barn. Resultaten visar
att tjejer med barn hushållsarbetar i högre grad
än killar, även om de arbetar lika många timmar
på arbetsmarknaden och har lika hög lön som
killarna. Detta tyder på att den ojämna arbetsdelningen
inte främst är ekonomiskt motiverad.
Inlaga.indd 12 2013-12-18 15:58:28
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Hälsa och utsatthet
För att beskriva ungas hälsa analyserar vi självskattad
hälsa, psykiskt välmående, psykosomatiska
symptom och trygghet. En stor del av kapitlet fokuserar
på våld och utsatthet eftersom delmålet om
att stoppa mäns våld mot kvinnor samt rätten till
kroppslig integritet är det som är högst prioriterat
inom jämställdhetspolitiken.
En majoritet av de unga mår bra, men det finns
samtidigt betydande andelar som inte gör det. Killar
uppger ett bättre allmänt hälsotillstånd än tjejer
och är i större utsträckning nöjda med sin hälsosituation.
Det är vanligare att tjejer oroar sig för sitt
utseende, sin vikt och att inte duga.
• Det egna allmänna hälsotillståndet bedöms som
bra eller mycket bra av 75 procent av tjejerna och
81 procent av killarna i åldern 16–25 år. Omvänt bedömer
7 procent av tjejerna och 4 procent av killarna
sin hälsa som ganska eller mycket dålig. Könsskillnaderna
är störst i gruppen 16–19 år (2012).
• Bland tjejer i åldern 16–29 år oroar sig 23 procent
ofta för sitt utseende och 28 procent oroar sig ofta
för sin vikt (6 respektive 8 procent bland killar). I
samma åldersgrupp oroar sig 25 procent av tjejerna
för att inte duga jämfört med 11 procent av killarna.
Mellan 16 och 29 år tycks dock killars oro tillta nå-
got med ökad ålder, medan tjejers oro istället minskar
något (2013).
Könsskillnaderna är påtagliga när vi tittar på psykisk
ohälsa och stressrelaterade symptom. Framfö-
rallt tjejer har haft en negativ hälsoutveckling sedan
slutet på 1980-talet, även om trenden är tydlig
också för killar fast från ett lägre utgångsläge. Vi
ser tendenser till att tjejer och killar hanterar psykisk
ohälsa på olika sätt och att ohälsan har olika
konsekvenser.
• Andelen som uppger att de är stressade flera
gånger i veckan är 50 procent bland tjejerna
och 24 procent bland killarna i åldern 16–25 år.
Bland tjejerna är 17 procent stressade varje dag
jämfört med 5 procent bland killarna (2012).
• Under 2012 uppgav 25 procent av tjejerna i
åldern 16–24 år att de lider av ängslan, oro eller
ångest, jämfört med 14 procent av killarna.
Jämfört med 1988/89 så har dessa andelar nästan
tredubblats för tjejer och mer än tredubblats
för killar. Konsekvenserna av psykiska besvär
tycks även vara större för tjejer.
• En jämförelse bland 16–29-åringar visar att
det mellan 2002 och 2013 har skett en viss ökning
av andelen unga som uppger att de ofta har
svårt att somna, lider av huvudvärk eller har ont
i magen.
• Tjejer och killar som mår dåligt hanterar i viss
mån sin situation på olika sätt. Killar uppger i
mindre utsträckning än tjejer att de pratar med
personer i sin omgivning när de mår dåligt. De
söker även stöd hos vuxna utanför familjen i
mindre utsträckning än tjejer. Intervjustudier
tyder också på att killar är mindre verbala än
tjejer när de söker stöd. Det finns också starka
samband mellan ekonomiska svårigheter och
psykisk ohälsa, i synnerhet bland tjejer. Bland
både tjejer och killar är oro för och brist på inflytande
kring den egna ekonomin förenat med
högre grad av psykisk ohälsa.
• Användningen av antidepressiva läkemedel
har ökat bland både tjejer och killar mellan 2007
och 2012. Under 2012 tog 4,4 procent av tjejerna
och 2,3 procent av killarna i gruppen 15–19
år antidepressiva läkemedel.
Inlaga.indd 13 2013-12-18 15:58:28
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• Trots att tjejer i större utsträckning än killar
lider av psykiska besvär och vårdas för självmordsförsök
är 70 procent av de som faktiskt
avlider till följd av självmord i åldern 15–24
år killar. Killar är även överrepresenterande i
samband med alkohol- och narkotikarelaterade
dödsfall samt i fordonsolyckor med dödlig utgång.

Ungas våldsutsatthet och våldsutövande är
betydligt högre än för andra åldersgrupper. Tjejers
och killars våldsutsatthet ser många gånger
olika ut, gemensamt är dock att förövarna i stor
utsträckning är killar och män. Trots detta förbises
ofta både ålder och kön i analyser och diskussioner
om våld.
• Av killar i åldern 16–24 år uppger 9 procent
att de utsatts för misshandel under det senaste
halvåret 2012 jämfört med 4 procent av tjejerna.
I gruppen 19–24 år var risken nästan fem gånger
så hög bland killar som bland tjejer att hamna
på sjukhus till följd av våldsskador under 2011.
• Enkätstudier visar att 89 procent av alla misshandelsförövare
i gruppen 16–24 år var killar
och 11 procent var tjejer under perioden 2009–
2011. Bland offren för misshandel i åldersgruppen
var 71 procent killar och 29 procent tjejer.
• Det finns betydande variationer inom ungdomsgruppen
när det gäller utsatthet för våld.
Ungdomsstyrelsen har i tidigare utredningar visat
att unga hbtq-personer och tjejer och killar
med funktionsnedsättning är extra utsatta. De
upplever sämre hälsa och har i större utsträckning
än andra utsatts för hot och våld.
Killar drabbas framförallt av fysiskt våld från
en okänd förövare på allmän plats, medan tjejer
i större utsträckning är utsatta för våld i bostaden,
på arbetet eller i skolan.
• Tjejer är i högre grad utsatta för våld i nära
relationer än killar. Unga ensamstående mammor
är i högre grad drabbade än andra studerade
grupper. Av de tjejer som utsattes för misshandel
under 2011 uppger 22 procent att våldet skett i
bostaden och 28 procent uppger att förövaren
var en närstående (jämfört med 6 respektive 3
procent av de utsatta killarna). Det är även en
högre andel av de tjejer som utsatts för hot och
trakasserier som har utsatts av en närstående
jämfört med andelen killar.
• Unga tjejer är överrepresenterade som offer för
sexualbrott och förövaren är många gånger en
jämnårig eller något äldre kille. Bland tjejer i åldern
16–24 år uppger 3,4 procent att de har varit
utsatta för sexualbrott jämfört med 0,5 procent
bland killar (2011).
• Den upplevda otryggheten och rädslan för att
vistas i det offentliga rummet kvällstid är betydligt
vanligare hos tjejer än hos killar. En större
andel tjejer än killar upplever även att otryggheten
påverkar deras livskvalitet. Så många som
29 procent av tjejerna i åldern 16–24 år uppger
att de under det senaste året ofta valt att ta en
annan väg eller ett annat färdsätt på grund av
oro att utsättas för brott jämfört med 5 procent
av killarna (2012).
• Bland unga i åldern 16–25 år uppger 33 procent
av killarna och 16 procent av tjejerna att de
tycker det är okej att andra har sex mot ersättning
(2012). I ungdomsenkäten 2012 uppger 2,1
procent av killarna och 0,8 procent av tjejerna
Inlaga.indd 14 2013-12-18 15:58:28
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att de själva har erfarenhet av att ta emot ersättning
för sex. En betydande andel av dem som
köper sex av unga är själva unga och den största
andelen är män.
• Av de våldtäkter mot personer över 18 år som
anmäldes under 2012 var offren i 96 procent av
fallen kvinnor och 98 procent av de misstänkta
förövarna var män. Mer än hälften (53 procent)
av förövarna var killar mellan 15 och 29 år.
• Det är fyra gånger så vanligt att tjejer får ovälkomna
sexuella förslag på nätet jämfört med
killar. Under 2012 hade 44 procent av tjejerna i
åldern 16–25 år någon gång varit med om att en
person på nätet försökt förmå dem att prata om
sex, skicka bilder eller agera framför en webbkamera
mot deras vilja jämfört med 12 procent
av killarna.
Grupper, maskuliniteter och våld
På uppdrag av Ungdomsstyrelsen har Tove Pettersson,
vid kriminologiska institutionen på
Stockholms universitet, gått igenom forskning
som belyser gruppens betydelse för ungas våldsutövande
och skapandet av maskulinitet. Hon
belyser likheter mellan vardagliga situationer i
exempelvis skolan och mer allvarliga våldsbrott
som begås av killar och män i grupp.
Analysen visar hur användandet av våld mot
någon inför en grupp kan vara betydelsefullt
för att uppnå status. Grupperna i studien präglas
av en stark manlig, homosocial gemenskap,
där lojalitet värderas högt. Homofobi och den
symboliska betydelse som "bögen" tillskrivs är
centralt i studierna. Sexistiska och nedvärderande
attityder och beteenden mot kvinnor är också
framträdande.
Hotet om att själv bli utsatt genom att inte leva
upp till de krav på maskulinitet som gruppen
ställer har en stark disciplinerande effekt. Forskare
inom skilda fält påtalar hur normer kring
dominans, överordning, styrka eller att inte vara
feg ofta präglar maskulinitetskonstruktioner.
Flera av de normer som förknippas med brottslighet
är värderingar som även återfinns bland
killar i andra sammanhang.
Sammantaget visar genomgången att killars
och mäns tillvaro många gånger är begränsad.
Små avvikelser från de maskulina normerna,
exempelvis genom att göra något som uppfattas
som feminint, kan lätt leda till trakasserier
och begränsade möjligheter att få delta i kamratgruppen
på lika villkor. Detta får betydelse
även i andra i sammanhang och både tjejer och
andra killar utsätts för killgruppernas maskulinitetskonstruktioner
genom såväl sexism som
våldsbrott.
Det här innebär att gruppen är viktig i
våldsförebyggande arbete, framför allt i ungdomsgruppen
och då speciellt för killar. Dels
för att gruppen är särskilt betydelsefull under
ungdomsåren, dels för att killar i grupp tycks
konstruera maskulinitet som är starkare förknippad
med dominans, överordning och våld än det
som sker individuellt.
Därför är det angeläget att utveckla våldspreventivt
arbete med särskilt fokus på grupper.
Flera våldspreventiva program från andra länder
har också ett inslag av ett åskådarperspektiv, där
fokus ligger på agerandet hos närvarande som
inte själva deltar i våldshändelsen.
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Inflytande och
representation
Inflytande och representation är nära kopplat till
huvudmålen inom både jämställdhetspolitiken
och ungdomspolitiken. Det ungdomspolitiska
målet anger att unga ska ha verklig tillgång till
inflytande och välfärd och det jämställdhetspolitiska
målet att kvinnor och män ska ha makt
att forma samhället och sina egna liv. Vår studie
visar att tjejer och killar i lika stor utsträckning
uppger intresse för samhällsfrågor och vad som
händer i andra länder (2012). Vi ser dock att tjejers
och killars erfarenheter i andra avseenden
skiljer sig åt:
• En högre andel killar än tjejer uppger att de är
intresserade av politik, 45 procent jämfört med
31 procent (2012). Skillnaden har ökat de senaste
åren. När vi undersöker faktiska politiska
aktiviteter framstår det istället som att tjejer i
något högre grad är aktiva.
• En högre andel tjejer än killar i åldern 20–25
år uppger att de vill vara med och påverka lokalt
2012 (43 respektive 38 procent). Av de som inte
vill vara med och påverka är det en större andel
tjejer än killar i åldern 16–25 år som uppger att
det är för att de kan för lite om hur de ska bete
sig (27 procent respektive 16 procent).
• Killar i åldern 16–25 år var i högre grad än
tjejer benägna att chatta, debattera och kommentera
politik på internet 2012 (22 respektive
11 procent). Tjejer väljer i större utsträckning
än killar att köpa vissa produkter av politiska,
etiska eller miljömässiga skäl (35 respektive 27
procent).
• En något högre andel tjejer än killar röstar i
nationella val. Samtidigt var det fler killar än
tjejer, 18–25 år, som nominerades och valdes
in i riksdag och landstingsfullmäktige 2010. I
kommunfullmäktigevalen var könsfördelningen
nästan jämn. Det är vanligare att tjejer hoppar av
sina politiska uppdrag än att killar gör det.
• Samtliga politiska ungdomsförbund, utom
Grön ungdom och Ung vänster, hade fler killar
än tjejer som medlemmar 2011. Könsfördelningen
håller sig dock inom spannet 40–60
procent för alla ungdomsförbund utom Ung pirat
och Sverigedemokratisk ungdom (SDU) som
har en fördelning på 80–85 procent killar och
15–20 procent tjejer, samt Grön ungdom med en
fördelning på 61 procent tjejer och 39 procent
killar.
Ungdomsstyrelsens
bidragsgivning till unga
och jämställdhet
En av Ungdomsstyrelsens centrala uppgifter är
att ge bidrag till ideella organisationer. Vi har
i denna studie analyserat ansökningar och slutrapporter
för projekt som under de senaste fem
åren haft ett jämställdhetssyfte och som riktat
sig till unga.
Kartläggningen visar att flest projekt som beviljats
bidrag har arbetat för det jämställdhetspolitiska
delmålet om lika makt och inflytande.
Det näst vanligaste är att arbeta för att mäns våld
mot kvinnor ska upphöra, där de flesta projekt
drivits av tjej- och kvinnojourer eller syftat till
att motverka hedersrelaterat våld. Få projekt
syftar till ekonomisk jämställdhet och det finns
inga projekt som arbetar för en jämnare fördelning
av det obetalda hemarbetet bland unga.
De flesta projekt i kartläggningen har tagit
fram metodmaterial, genomfört utbildningar för
unga och yrkesverksamma samt kompetensutvecklat
personer i den egna verksamheten. Det
Inlaga.indd 16 2013-12-18 15:58:28
17
har blivit vanligare att arbeta med jämställdhet
utifrån ett normkritiskt perspektiv mellan 2008
och 2012 och flera projekt syftar till att utjämna
maktstrukturer i den egna organisationen.
Många projekt riktar sig till "alla" unga eller
syftar till att stärka tjejer, men få projekt har
främst killar som målgrupp. Det finns en risk
att jämställdhetsarbete blir en fråga för endast
kvinnor eller tjejer. Villkoren för de olika bidrag
som fördelas påverkar i sig utfallet av de projekt
som drivs av organisationer i det civila samhället.
Inom många bidragsformer finns det särskilt
avsatta medel för exempelvis kvinnor.
Kultur och fritid
Den fria tiden är en viktig arena för ungas lärande
och självförverkligande. I regeringens strategi
för ungdomspolitiken framhålls tillgången till
kultur som grundläggande i en demokrati samt
som ett kraftfullt redskap för ett aktivt deltagande
i samhället. Idrotten är också en viktig del av
många ungas fritid. Det jämställdhetspolitiska
delmål som ligger närmast detta område handlar
om jämn fördelning av makt och inflytande.
Det är vanligare bland tjejer att uppleva att de
har för lite fritid och tjejer är även i mindre utsträckning
aktiva i föreningar. Killar tycks värdera
fritidsaktiviteter högre.
• Det är vanligare att tjejer upplever att de har
för lite fritid och nivåerna har varit relativt stabila
mellan 2004 och 2012. Bland tjejer i åldern
16–25 år uppgav 42 procent att de hade för lite
fritid, jämfört med 28 procent bland killarna
(2012).
• Tjejer och killar är ungefär lika nöjda med sin
fritid, men det är vanligare att tjejer i åldern 16–
25 år har avstått från att besöka en fritidsaktivitet
på grund av rädsla för att bli dåligt bemött,
17 procent av tjejerna och 12 procent av killarna
(2012).
• Fritiden är det som värderas högst på frågan
om vad som är viktigast just nu bland unga i
åldern 16–24 år, före andra områden som parförhållande,
fast arbete och bilda familj. På frå-
gan om vad som ger livet mest mening var familjen
det vanligaste svarsalternativet för såväl
tjejer som killar i åldern 16–29 år. Bland killar
var fritiden det näst vanligaste svarsalternativet
(21 procent) medan det bland tjejer istället var
vänner (16 procent) följt av fritid (7 procent)
(2013).
Många tjejer och killar idrottar och motionerar,
men det sker delvis i olika sammanhang och
i olika utsträckning. Killar är överrepresenterade
inom föreningsidrotten samtidigt som det är
något vanligare bland tjejer att motionera. Tjejer
lämnar föreningsidrotten i större utsträckning än
killar när de kommer upp i tonåren.
• Andelen tjejer som motionerar minst en gång i
veckan har legat runt 80 procent de senaste åren
(2008–2012) medan andelen killar har varit nå-
got lägre, runt 70 procent.
• Killar är överrepresenterade inom föreningsidrotten.
Bland det totala antalet deltagartillfällen
2011 var könsfördelningen 61 procent killar
och 39 procent tjejer. Andelen aktiva tjejer
minskar med ökad ålder.
• I många fall är män överrepresenterade på ledande
positioner inom idrotten.
• Vissa idrotter är tydligt könskodade. De tre
specialförbund som har flest deltagartillfällen är
fotboll, innebandy och ishockey. Det är också
Inlaga.indd 17 2013-12-18 15:58:28
18
de specialförbund som har lägst andel tjejer och
högst andel killar som deltagare. Ridsport och
gymnastik är de specialförbund där främst tjejer
deltar, men dessa har betydligt färre deltagartillfällen.

• Tjejer med utländsk bakgrund är den grupp
som i minst utsträckning är representerad inom
föreningsidrotten. Unga hbtq-personer har betydligt
lägre deltagande än övriga inom motion
och idrott. Killar som identifierar sig som heterosexuella
deltar i föreningsidrotten i större
utsträckning än killar med annan sexuell tillhö-
righet.
Tjejer är i högre grad aktiva kulturutövare och
utövar i ungdomsåren fler kulturformer samtidigt
jämfört med killar. I åldern 13–25 år är killar
dock överrepresenterade i de verksamheter
som får offentligt stöd.
• Inom breda kulturområden som att sjunga,
spela musik, dansa och utöva teater är tjejer i
åldern 16–25 år mer aktiva än killar minst en
gång i veckan, 38 procent jämfört med 29 procent
(2012).
• Tjejer deltar i större utsträckning i dans, skrivande
och teater på sin fritid, medan killar i
större utsträckning deltar i musikaktiviteter
(2010). Bland tjejerna i åldern 16–25 år var det
även 21 procent som var aktiva i minst tre av
kulturaktiviteterna musik, dans, bild, skrivande
eller teater någon gång det senaste året jämfört
med 8 procent bland killarna. Andelen som inte
hade utövat någon av de nämnda aktiviteterna
på sin fritid var 39 procent bland killarna och 24
procent bland tjejerna (2010).
• Sett till antal deltagare är tjejer överrepresenterade
inom musik- och kulturskolans verksamhet
2012 (69 procent jämfört med 31 procent killar). I
verksamheten deltar främst barn under 13 år. I studieförbundens
studiecirkelsverksamhet med kulturinriktning
för unga i åldern 13–24 år är förhållandet
istället det motsatta, 40 procent tjejer jämfört med
60 procent killar (2012).
• Läsförståelsen hos unga har minskat generellt.
Ungefär en fjärdedel av de 15-åriga killarna i Sverige
saknade funktionell läsförmåga 2010. Bland
unga med de lägsta resultaten i Sverige är andelen
killar betydligt högre än andelen tjejer (24 respektive
10 procent).
I fördelningen av statliga offentliga medel till
ungas organisering, idrott och kultur i åldersgruppen
13–25 år får killar den största andelen.
• Det offentliga stödet till idrotten går huvudsakligen
till föreningsidrott, där en högre andel killar
än tjejer är aktiva. Den senaste mätningen visar att
killar står för drygt 60 procent av deltagartillfällena
och tjejer för knappt 40 procent 2011.
• En stor del av statens stöd till ungas kulturutövande
går genom studieförbundens studiecirklar. I studiecirklarna
med kulturinriktning finns en liknande
övervikt av killar, 60 procent killar och 40 procent
tjejer i åldern 13–24 år deltog i sådana cirklar 2012.
• Ungdomsstyrelsen kan se att antalet tjejer och
killar ökar bland det totala antalet medlemmar
som finns i de ungdomsorganisationer vi fördelar
statsbidrag till. Dock verkar fördelningen här bli
alltmer skev, 2010 var 47 procent av organisationernas
medlemmar tjejer och 53 procent killar. Två
år senare var 41 procent tjejer och 59 procent killar
(2012).
Inlaga.indd 18 2013-12-18 15:58:28
19
Förändringsarbete inom
de fem huvudområdena
I varje kapitel ger vi en sammanfattande bild av
jämställdhetssatsningar som har riktats till unga
i åldern 13–25 år, med fokus på de senaste fem
åren.
Utbildning och lärande är ett område där jämställdhetsarbetet
har belysts grundligt relativt
nyligen både inom grund- och gymnasieskolan
och inom högskolan. Flera initiativ har tagits
på utbildningssystemets olika nivåer, både i
form av särskilda satsningar och i form av att
integrera jämställdhetsperspektivet i ordinarie
verksamhet och utbildningar. Det finns dock
tendenser att de särskilda satsningar som görs
blir kortsiktiga och inte lyckas skapa långsiktig
förändring. Vi ser också att unga själva sällan
involveras mer direkt i det jämställdhetsarbete
som bedrivs i skolans värld.
Inom området arbete och försörjning är initiativ
för ökad jämställdhet bland unga inom arbetslivet
ett underutvecklat område. Det finns
få studier som belyser dessa frågor på djupet,
och vi ser få initiativ för ökad jämställdhet bland
unga inom detta fält. Detta märks både i en genomgång
av arbetet inom ramen för Program
för hållbar jämställdhet (HÅJ) som Sveriges
Kommuner och Landsting driver 2008–2013 för
att stödja arbetet med jämställdhetsintegrering
på lokal och regional nivå, och i de många ungdomsprojekt
som delfinansierats av Europeiska
socialfonden under 2007–2013.
Vi har i rapportens kapitel om hälsa och utsatthet
särskilt fokuserat på ungas psykiska ohälsa
och arbete kopplat till att förhindra mäns våld
mot kvinnor samt rätt till kroppslig integritet.
Det finns betydande satsningar för att synkronisera
samhällets insatser kopplade till barns och
ungas psykiska ohälsa och för att stärka elevhälsans
arbete. Unga är också särskilt prioriterade
i psykiatrisatsningen 2012–2016. För att stärka
arbetet att bekämpa mäns våld mot kvinnor har
regeringen arbetat utifrån tre handlingsplaner
och under 2011–2014 arbetar de med fokusområden
som bland annat handlar om stärkt samordning,
åtgärder mot sexuellt våld, prostitution
och människohandel samt stärkt förebyggande
arbete.
Det finns flera initiativ och satsningar som
handlar om ungas inflytande och representation,
dock finns det få satsningar som är riktade
specifikt mot unga som också är kopplat
till jämställdhet. En viktig lärdom är att även
om olika aktörer och myndigheter arbetar med
både jämställdhet och inflytande bland unga, så
är dessa områden sällan sammanlänkade. Istället
finns flera exempel på hur aktörer inom det
civila samhället bedrivit arbetet där båda dimensionerna
finns med samtidigt. Vi ser det bland
annat genom att Ungdomsstyrelsens stöd till
projekt på temat unga och jämställdhet i mycket
hög grad varit inriktade mot ungas inflytande
och representation.
När det gäller ungas kulturaktiviteter och fritid,
så har vissa initiativ tagits för att öka jämställdheten
bland unga. Det finns både lokala
exempel och nationella initiativ för att öka jämställdheten
inom idrotten och kulturlivet. Vår
undersökning visar dock att arbetet inom båda
dessa områden har en lång bit kvar innan vi
uppnår en jämställd fritid för tjejer och killar.
Förändringsarbetet inom idrotten kan inte sägas
ha kommit särskilt långt (samtidigt som tjejer är
överrepresenterade bland styrelseledamöter under
30 år i centrala styrelser) och de satsningar
som har gjorts inom kulturområdet berör endast
delvis unga 13–25 år och inte alltid med ett jämställdhetsperspektiv
som en del av arbetet. Den
samlade kunskapen om ungas fritid på nätet är
också bitvis låg och kan utvecklas framåt.
Inlaga.indd 19 2013-12-18 15:58:29
20
En viktig fråga är också hur vi skapar goda
förutsättningar för att ta tillvara erfarenheter
och kunskaper från de satsningar som görs på
jämställdhet. Här finns det positiva initiativ som
portalen www.jamstall.nu där man hittar exempel
inom området. Samtidigt ser vi att arbetet
med att ta tillvara kunskaper och erfarenheter
har kommit olika långt. Exempelvis finns många
utredningar och utvärderingar om jämställhetsarbetet
inom skolan, men desto färre som belyser
situationen för unga inom både arbetslivet
och på fritiden.
Diskussion och förslag
Det är inte möjligt att enkelt konstatera hur det
ser ut när det gäller jämställdhet bland unga i
Sverige. Jämställdhet är mångfacetterat och
orsakssamband ofta komplexa. Det genomförs
också en rad olika typer av analyser inom området.
Det finns flera olika index för att mäta
och jämföra jämställdhetssituationen på internationell
nivå. Genom åren har det tagits fram ett
tiotal sådana mått. Sverige och flera andra nordiska
länder brukar placera sig högt i sådana mätningar.
I vår rapport ser vi både positiva och negativa
trender när det gäller jämställdhet bland
unga. Vissa skillnader mellan könen är istället
relativt konstanta över tid. Inom flera områden
framträder dock en mer komplex bild som gör
det svårt att entydigt tala om förbättringar eller
försämringar.
När det gäller ungas inställning till jämställdhet
har denna varit stabil under 2000–talet.
Unga generellt värderar jämställdhet som en
viktigare fråga än äldre. Stödet för jämställdhet
är mer utbrett bland tjejer och kvinnor än bland
killar och män.
Bland positiva trender finns en alltmer jämn
könsfördelning bland unga doktorander vid universitet
och högskolor. Segregationen mellan
könen i vilka program de läser på gymnasiet är
stor, men har minskat något de senaste tio åren.
Bland negativa trender finns särskilt tjejers hälsoutveckling
sedan 1980-talet. Nya behörighetsregler
i gymnasiet verkar också förstärka
skillnaderna mellan könen i vilka program de
läser, vilket är en utveckling som behöver följas
framöver.
Vi ser genom rapporten att ojämställdhet begränsar
både tjejer och killar, och att de har olika
handlingsutrymme i många sammanhang. Tjejer
och killar möter skilda förväntningar i skolan,
både från personal och från andra elever, vilket
riskerar att förstärka skillnaderna mellan könen.
Här verkar det också finnas betydande variationer
mellan skolor när det gäller lokala normer
för tjejer och killar. Det är viktigt att skolan är en
plats där alla kan mötas av likvärdiga förväntningar.
Att det finns en betydande segregering i
val av utbildning, av yrke såväl som av fritidsaktiviteter
är en indikation på de begränsningar
som kan finnas.
Inom flera områden har tjejer sämre levnadsvillkor.
Psykisk ohälsa och stress är särskilt utbrett.
Det gäller även utsatthet för sexuellt våld
och våld i nära relationer. Familjebildning tenderar
också att få större konsekvenser för tjejer
i relation till både arbetslivet och till det oavlö-
nade hem- och omsorgsarbetet. Bland killar är
det vanligare med allvarligare ekonomiska problem,
och de är överrepresenterade när det gäller
våldsutövande och även utsatthet för många
former av våld. Vi ser hur maskulinitetsnormer
påverkar våld och även hur killar verbaliserar,
eller inte verbaliserar sitt mående.
Inlaga.indd 20 2013-12-18 15:58:29
21
Jämställdhetspolitiken tar sin utgångspunkt
i relationen mellan könen och den ojämna fördelningen
av makt och inflytande. Det är viktigt
att också uppmärksamma att det finns personer
som varken identifierar sig som tjejer eller killar,
och att analyser ofta har en heterosexuell
utgångspunkt och kärnfamiljen som modell.
De statistiska undersökningar som finns är väldigt
begränsade när det gäller att fördjupa vår
kunskap om levnadsvillkoren för flera delar av
ungdomsgruppen som vi vet lever i en särskilt
utsatt situation. Här behövs fortsatta kvalitativa
studier för att spegla villkoren och kunna formulera
relevanta politiska frågor.
Förändringsarbetet har kommit olika långt
om vi ser till huvudområdena i ungdomspolitiken.
Inom utbildning och lärande har många
satsningar och utredningar gjorts och det finns
mycket samlad erfarenhet och kunskap för ett
fortsatt arbete. För arbete och försörjning ser vi
att det har varit ovanligt med initiativ för ökad
jämställdhet för unga. Inom hälsa och utsatthet
kan vi konstatera att det finns betydande satsningar
för att utveckla de insatser som ges, och
att barn och unga är särskilt prioriterade i satsningen
kring psykisk ohälsa 2012–2016, dock
saknas ett tydligt jämställdhetsperspektiv. Flera
initiativ har tagits för att stärka kunskapen och
insatserna inom området unga och våld. Ungdomsstyrelsen
har sedan tidigare lagt flera förslag
hur detta arbete kan förstärkas ytterligare.
Inom inflytande och representation finns det
få offentliga initiativ som kombinerar frågorna
om ungas inflytande och jämställdhet. Detta är
istället vanligare bland aktörer inom det civila
samhället, som också får stöd från det offentliga
bland annat genom Ungdomsstyrelsen och
Allmänna arvsfonden. Inom området kultur och
fritid finns lokala exempel och nationella initiativ
för att öka jämställdheten inom idrotten och
kulturlivet. Vi ser att arbetet inom idrotten kan
utvecklas och att satsningar inom kulturen endast
delvis når unga.
För ett långsiktigt arbete behöver projekt och
särskilda initiativ pågå samtidigt som jämställdhetsintegreringsarbetet.
Kunskaper och erfarenheter
från förändringsarbete skulle kunna samlas
på ett mer systematiskt sätt än idag. Vi ser
också behov av att killar och mäns engagemang
behöver höjas inom jämställdhetspolitiken för
att nå långsiktig förändring.
Ungdomsstyrelsen lägger sex förslag som kan
komplettera och vidareutveckla arbetet och kunskapsutvecklingen
för ökad jämställdhet mellan
tjejer och killar:
• Synliggör barn och unga i uppföljningen av
jämställdhetspolitiken
• Förtydliga jämställdhetsperspektivet i satsningen
kring psykisk ohälsa 2012–2016
• Granska arbetsmarknadsåtgärder utifrån ett
jämställdhetsperspektiv
• Förstärk arbetet mot sexuella trakasserier i
skolan
• Fokus på grupper och maskulinitet i forskning
och i ett avgränsat försök med våldspreventivt
program i Sverige
• Utveckla indikatorerna för uppföljning av ungas
kultur och fritid, och därmed möjligheterna
att följa upp jämställdheten på området.

Denna avhandling innehåller en huvudstudie och en delstudie. Syftet med huvudstudien var att följa upp en grupp ungdomar som hade blivit diagnostiserade med uppförandestörning (n=351) i det unga vuxenlivet. Delstudiens syfte var att ifrågasätta och klargöra frågeformuläret KASAM-29 och dess förhållande till den salutogena teorin. I avhandlingen användes olika utfallsvariabler och utfallsmått, vilka även diskuterades. Två perspektiv på utfall användes, ett salutogent och ett ekologiskt.

Det salutogena perspektivet kunde användas först efter att delstudien var klar. Delstudien visade att KASAM-29 är ett reliabelt och validt mätinstrument. Dessutom visade delstudien att huvudbegreppet i den salutogena teorin Känslan av sammanhang bör betraktas som ett holistiskt begrepp.

Huvudstudien följde upp 290 ungdomar i deras unga vuxenliv (medelålder 21 år). Utifrån det salutogena perspektivet, KASAM-29, hade ungefär hälften männen (43 %) och kvinnorna (56 %) ett negativt utfall. Det ekologiska perspektivet bestod av sju enskilda variabler: låg utbildningsnivå, transfereringsinkomst, hög symtombelastning, missbruk, kriminalitet och dygnsvård för vuxna. Genom att kombinera dessa enskilda variabler, hade ungefär två tredjedelar av männen (68-70 %) och ungefär hälften av kvinnorna ett negativt utfall i vuxenlivet. Dessa utfallsmått kunde inte substantiellt prediceras av variabler från deras medicinska patient journal.

Huvudstudien är en av få nationella och internationella långtidsuppföljningar bestående av ett kliniskt urval av ungdomar diagnostiserade med uppförandestörning. Studien visar att det är möjligt att genomföra denna typ av studier med ett litet bortfall. Individer diagnostiserade med uppförandestörning har en förhöjd risk för ett problematiskt vuxenliv. Vuxenlivet kan beskrivas på många olika sätt. Men slutsatsen är att utfallet i vuxenlivet beror på valet av utfallsmått. För att besvara frågan hur stor del av ungdomarna som hade ett negativt utfall i vuxenlivet måste utfallsmåttet först specificeras. Specificeringen måste klargöra utfallsmåttets uppbyggnad och definition. Först därefter kan frågan verkligen besvaras.

Juveniles who are rowdy, who commit crime, abuse drugs, have difficulty functioning in school or in the home are the subject of constant attention: from indignant voices in newspaper reports, to demands in parliament for action, all the way to the informal conversations at the lunch table and in the home in front of the television. This dissertation is about society's attempts to normalize them, in a time when institutional care has gained a bad reputation. All over the western world there are attempts to replace institutions with qualified non-institutional measures. In Sweden a rather broad range of activities has emerged under designations such as home-based solutions, intermediary care or simply alternatives to institutional care. Among these we can find both all-embracing and innovative endeavours and more limited expansions of established patterns of thought. Although there are numerous studies of individual ventures, often in the form of project evaluations, there are no approaches with an overall perspective on the field. This dissertation seeks to remedy this by studying ideas articulated when activities are planned and how daily life between juveniles and employees is formed in a typical home-based solution. These studies are conceptualized through a description of the development of juvenile care during the 20th century. The study is based on the methods of discourse analysis and focuses on how communication is shaped and given a specific function in an institutional order. The first study shows how the social worker as a rescuing subject is linked with the juvenile as an object needing rescue through the technology involved in the home-based solution. Four main forms of home-based care are identified in accordance with the way they relate to the mother organization (integrated – free-standing), and the way they handle problems that arise (ad hoc – a priori). The study of the special school "Pilen" analyses in detail how everyday life is shaped and maintained. Therapeutic work is perceived in the dissertation as actions accompanied by power with the intention of achieving dominance within a social space. In the special school it becomes evident how the employees' claims for power encounter the juveniles' counter-power, and how this is expressed in a reciprocal positioning game. The juveniles often have great potential to neutralize the employees' direct interventions. At the same time, they have little opportunity to change the social and cultural framework which dictates why they are there – and hence also little opportunity to avoid being captured in the category of "problem children". In this way the special school was simultaneously a sanctuary from the excessive pressures of ordinary school and a place of banishment from it, and from what is perceived as the reference of normality.

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.

Objective: Siblings of individuals suffering from schizophrenia are an underrepresented group in research focussing on the needs of carets and relatives of psychiatric patients. The present study aims to investigate differences between siblings and parents as well as spouses, as regards help seeking, utilisation of an open group for relatives, their subjective burden and quality of life. Methods: 147 relatives of in-patients and patients attending a day hospital where assessed using the General Health Questionnaire (GHQ), the Family Problem Questionnaire (FPQ), the WHO Quality of Life-BREF (WHOQOL-BREF) and a questionnaire inquiring about the relatives' utilisation of various sources of information and help throughout the course of the illness. Results: Siblings reported less contact to the patients compared to the two other groups. However, their subjective burden was comparable to that Of Spouses, who were the group with the highest amount of contact. Siblings' quality of life showed by far less impairment than that of spouses and parents. They reported significantly less utilisation of any source of information and help and were far less likely to be invited to the group for relatives. Conclusions: Siblings of patients with schizophrenia are a particularly neglected group regarding support aimed at relatives. They are heavily distressed, yet there is little offer of professional support for them. It seems indicated to draw increased attention to this specific group of relatives.

Adult patients with significant childhood and current symptoms of attention-deficit hyperactivity disorder (ADHD), but whose ADHD had not been previously recognized, were evaluated by three clinical consultants working with diverse referral populations. These 60 adults shared common characteristics of physical and mental restlessness, impulsivity, disabling distractibility, low self-esteem, self-loathing, and a gnawing sense of underachievement. Specific learning or behavior problems were often present. These patients were chronically disaffected. The diagnosis of ADHD appeared to be missed because these individuals presented with atypical symptoms or had found ways to compensate for their deficits. Descriptive generalizations are offered concerning their coping strategies. These adults had sought previous psychiatric care for non-ADHD symptoms but had numerous unsuccessful treatment attempts. Most patients had been treated for mood or anxiety disorders. Traditional defense analysis had little beneficial effect and aggravated problems of self-esteem; modifications of the psychotherapeutic process are recommended. In open clinical trials without formal measures, the majority of such patients appeared to respond to low doses of antidepressants (i.e., desipramine 10-30 mg daily) and seemed to lose the therapeutic effect at higher antidepressant doses.

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

Examensarbete Kandidatnivå

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

Boken vänder sig huvudsakligen till personal inom gruppbostäder för vuxna med intellektuell funktionsnedsättning och autism; till enhetschefer, stöd- och omsorgspedagoger, LSS-handläggare och politiker, men jag tror att flera av delarna i boken också kan läsas med stor behållning av anhöriga. 

AIM:
The aim of this study was to obtain evidenced-based knowledge about older persons in home care; we conducted a population-based study at 11 sites in Europe (2001/2002). This article focuses on urinary incontinence and need for help in home care.
METHODS:
A sample of 4010 respondents 65 years or older were assessed by the Resident Assessment Instrument for Home Care. Urinary incontinence was defined as leakage once a week or more including use of catheters.
RESULTS:
A total of 1478 individuals had urinary incontinence, 45% men and 47% women. The use of pads ran from 29% to 52% between the sites. The associates of urinary incontinence were: moderate or severe cognitive impairment, dependency in toileting and other activities of daily living compared with less impaired; urinary infections, obesity and faecal incontinence. Caregivers to persons with urinary incontinence reported burden or stress more often then carers to nonurinary incontinence individuals (OR = 2.2, 95% CI 1.8-2.7).
CONCLUSIONS:
To enable older people with incontinence to stay at home with a better quality of life, they need caring assistance during toileting on a regular basis.

Abstract [en]

Using ethnographic data, this article aims to analyse the provision of informal care by asylum-seekers in Sweden and how this intersects with the(ir) asylum process. The article argues that asylum-seekers are framed by the Swedish welfare system and immigration authorities as ungrievable and deportable, which not only impedes their access to formal care systems and values, but also creates a strong need for informal care. Further, it is suggested that the informal care provided by asylum-seekers should be included in current debate on informal care and its impact on people’s lives. 

Abstract [en]

In Sweden, a country with one of the highest public spending on long term care, there is also extensive informal care, i.e. unpaid care by family, friends, or neighbours. In this article, we explore the spectrum of informal caring using data from a nationally representative survey of caregivers in the Swedish population. We describe three different caregiver profiles and analyse them in relation to their panorama of care, i.e. the extent to which caring is shared with other formal- and informal co-carers. The first profile, the co-habitant family carer, consists of caregivers providing help for someone in the same household with special care needs, and were mostly alone in intensive caregiving. The second profile, persons in the care network, consists of caregivers providing help to someone with care needs in another household. They have a network of both informal and formal co-carers. Finally, the helpful fellowman consists of caregivers providing help for someone without special needs in another household. In developing relevant carer support, it is important to acknowledge that caregivers are not a homogenous group. Thus, to fulfil national ambitions to support carers across the board, policy and practice need to have a diverse group of carers in mind.

Resultat från en webbaserad enkät i Jönköpings län och Stockholms län.

Den här rapporten är en resa genom anhörigkonsulenters och biståndshandläggares erfarenheter, uppfattningar och förutsättningar för att bedriva anhörigstöd och vilka former av stöd som erbjuds anhöriga.

Studien baseras på en webbenkät utskickad till anhörigkonsulenter och biståndshandläggare i Jönköpings län och Stockholms län och vill bidra till en fördjupad kunskap och förståelse för den komplexitet som yrkesrollerna hanterar i sitt dagliga arbete med anhörigstöd.

Få studier har hittills gjorts ur det här perspektivet. Att sätta fokus på anhörigkonsulenterna är givet, men biståndshandläggarna möter också många anhöriga i sin yrkesutövning. Tillsammans ger de oss en bredare bild av de förutsättningar man har för att bedriva arbetet med anhörigstöd, vilka stödformer man erbjuder och vilka arbetsformer man använt under covid-19-pandemin. Vi får också en bild av i vilken utsträckning man når de anhöriga och i vilken omfattning man samarbetar med andra aktörer kring anhörigstöd. I studien har vi också ställt frågorom synen på vad socialtjänstens anhörigstöd kan och bör leda till.

Resultaten i studien är många och ur dem har vi identifierat fem utvecklingsområden som synliggör möjliga riktningar för kommunerna i arbetet med att utveckla anhörigstödet. På så sätt önskar vi bidra till att stärka det viktiga arbete som anhörigkonsulenter och biståndshandläggare gör dagligen för att underlätta vardagen för alla anhöriga de möter.

Abstract [en]

The overarching aim of this thesis is to gain a deeper understanding of informal carer involvement in health and social care research, from the perspective of informal carers themselves as well as from a researcher perspective.The thesis is comprised of three qualitative studies and one quantitative study. Three studies are from the perspective of informal carers, and one is from the perspective of researchers. The three qualitative studies used qualitative content analysis and discourse psychology, while the quantitative study used descriptive statistics, logistic regression and two different types of factor analysis. The data collection methods varied; in the first and the fourth studies, the data were derived from individual interviews, in the second study participants completed a questionnaire, and in the third study the data were collected from group meetings with carers.The findings showed that carer involvement in research is complex, comprising both benefits and challenges, and demands a high level of engagement from all involved, throughout the research process. The researcher must acknowledge that carers’ motivations for involvement in research vary, and the researcher should adapt their recruitment methods accordingly. It is easy to believe that becoming involved in research is an individual choice, but the findings revealed that only some carer groups choose to become involved in research. The findings also showed that the knowledge brought by carers to the research stretches far beyond their practical experiences of caring. When researchers choose to involve carers in research, their research would benefit greatly if they acknowledged the possibility that they themselves might become relationally and emotionally involved.Successful carer involvement in research therefore encompasses both a meaningful process and a meaningful result. As carers are a heterogeneous group, this places demands on a researcher’s flexibility and creativity to manage the recruitment process and involve a broad cross section of carers. If they fail in this, the research carried out and any interventions developed risk being valid for particular groups of carers and invalid in relation to other carer groups.

Abstract [en]

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15–17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

Omarbetad version av Medicinsk omvårdnad vid svåra funktionshinder

Syftet med handboken Kvalificerad omvårdnad i vardagen är att sprida kunskap om och förståelse för personer med flerfunktionsnedsättning, som under hela livet har mycket stora vård- och omvårdnadsbehov. Boken vill visa att mycket går att göra för att ge barn, ungdomar och vuxna med flerfunktionsnedsättning möjlighet att leva ett så bra liv som möjligt. Rätten till god vård och omvårdnad gäller i allra högsta grad de som har de allra största behoven.

En sammanfattning av Socialstyrelsens underlag till en nationell strategi

När jag var liten fanns inte personlig assistans. Jag behövde mycket hjälp hela tiden. Mina föräldrar orkade inte med allt, trots att dom älskade mig. Därför var jag tvungen att bo på vårdhem. Det var det värsta jag varit med om. Jag ville inte äta. Jag slutade skratta och gråta. Doktorn sa till mamma och pappa att jag var så svårt skadad att jag aldrig skulle bli vuxen, och att de inte skulle orka ta hand om mig hemma. 1972, när jag var sju år, bestämde mamma sig för att ta hem mig. Året efter fick jag personlig assistans 40 timmar i veckan av kommunen. Tack vare det kunde jag få bra hjälp och vågade börja visa mina känslor igen. När jag var 26 år fick jag personlig assistans hela dygnet och flyttade till en egen lägenhet. Idag är jag 52 år, har ett bra liv och är mycket sällan sjuk, tack vare bra personlig assistans.

Den här boken kan hämtas och läsas i iBooks på din Mac eller iOS-enhet

Den systematiska översikten visar att utbildningsprogram för anhöriga till personer med demenssjukdom minskar den upplevda bördan för anhöriga (måttlig effekt) och även anhörigas depression (liten effekt). Det vetenskapliga stödet är dock otillräckligt för att man ska kunna uttala sig om effekter på anhörigas livskvalitet och de sjukas flytt till särskilt boende. Utbildningsinsatsen är jämförd med ingen utbildning eller insatser som vanligtvis erbjuds, till exempel informationsmaterial till anhöriga.

Minskningen av den upplevda bördan bedöms vara värdefull för anhöriga och därför ha en praktisk betydelse. En svensk ekonomisk analys [3] visar att kostnaderna för att genomföra en utbildnings- och stödinsats för anhöriga är tämligen låga och påverkade livskvaliteten hos de anhöriga positivt. Detta kan innebära att liknande utbildnings- och stödinsatser är ett rimligt sätt att använda kommuners resurser.

Abstract
Background: Dementia is a public health priority with a dramatic social and economic impact on people with dementia (PwD), their caregivers and societies. The aim of this study was to contribute to the knowledge on how utilization of formal and informal care varies between Sweden and Italy. Methods: Data were retrieved from two trials: TECH@HOME (Sweden) and UP-TECH (Italy). The sample consisted of 89 Swedish and 317 Italian dyads (PwD and caregivers). Using bivariate analysis, we compared demographic characteristics and informal resource utilization. Multiple linear regression was performed to analyze factors associated with time spent on care by the informal caregivers. Results: Swedish participants utilized more frequently health care and social services. Informal caregivers in Italy spent more time in caregiving than the Swedish ones (6.3 and 3.7 h per day, respectively). Factors associated with an increased time were country of origin, PwD level of dependency, living situation, use of formal care services and occupation. Conclusions: Care and service utilization significantly varies between Sweden and Italy. The level of formal care support received by the caregivers has a significant impact on time spent on informal care. Knowledge on the factors triggering formal care resources utilization by PwD and their caregivers might further support care services planning and delivery across different countries.

Boken handlar om de barn som placerades på barnhem i en
storstad någon gång under en tvåårsperiod på 1980-talet och var
0–4 år vid tiden för inskrivningen och stannade där mer än en
månad. De första två uppföljningsstudierna gjordes tre och nio
månader efter det att barnen lämnat barnhemmet. Därefter har
barnen följts upp ytterligare fem gånger, 5, 10, 15, 20 och 25 år
efter den tidiga barnhemsvistelsen. Det är 26 barn och det finns
knappast något bortfall från tidig barndom till vuxen ålder.
Resultatredovisningen är uppdelad i tre kapitel. Det första
ger glimtar från socialtjänstens dokumentation och mödrarnas
berättelser om tiden före placeringen och orsakerna till barnens
placering på barnhemmet. Där framgår också barnens reaktioner
på separation och deras anknytnings- och anpassningsprocess
under tiden på barnhemmet och den närmast efteråt, hemma
eller i familjehem. Det andra resultatkapitlet handlar om barnens
placeringshistoria under hela barndomen. De flesta barnen i undersökningsgruppen
kom nämligen förr eller senare till familjehem
och några har även erfarenhet av ungdomsinstitutioner. Instabilitet
till följd av sammanbrott i placeringar eller återplaceringar
ses som ett allvarligt bekymmer för barn i samhällsvård. I de nu
vuxna barnens tillbakablick varierar erfarenheterna. Det tredje
resultatkapitlet handlar om social anpassning i vuxen ålder i
termer av utbildning, arbete och laglydighet. Liksom i annan
forskning framgår det här att färre har gymnasieutbildning än
jämnåriga i befolkningen i stort. Det framgår också att skälen
varierar, men de som klarat gymnasiet utan större problem har
också i större utsträckning en stabil arbetssituation. Kapitlet
bygger i stor utsträckning på de unga männens och kvinnornas
egna berättelser och är rikt på citat. Det är inget stort kvantitativt
material, men det går att räkna procent. Andelen som i vuxen
ålder kan räknas till de laglydiga är 70 procent och 50 procent
har en stabil arbetssituation.

För att palliativ vård i hemmet ska fungera bra är de närståendes medverkan i vården oftast en
nödvändig förutsättning. Närståendes roll i palliativ hemsjukvård är unik i och med att de inte
bara har en stödjande roll för den sjuke utan också själva är i stort behov av stöd.
Den avancerade hemsjukvården i Uppsala sköts av Sjukvårdsteamet som erbjuder en
avancerad medicinsk vård i det egna hemmet för patienter med en komplicerad sjukdomsbild.
Sjukvårdsteamet har i tidigare vårdutvecklingsprojekt utvecklat stödgrupper som erbjuds till
närstående under patientens vårdtid samt ett strukturerat efterlevandestöd. Det som fattats i
närståendestödet är ett enskilt samtal (där patienten inte är med) med närstående i samband
med patientens anslutning till vården. Utvecklingen och införande av strukturerade samtal
med närstående till patienter inskrivna i Sjukvårdsteamet genomfördes under tiden 1.1.2009–
31.1.2010 genom ett vårdutvecklingsprojekt med stöd av Cancerfonden.
Resultat
Under projekttiden hölls 61 samtal. Det var svårt att bryta ut det strukturerade samtalet från
Sjukvårdsteamets verksamhet i stort, eftersom närstående ansåg att samtalet var en del i en
pågående process. Många poängterade det värdefulla med att få ha ett eget samtal där
patienten inte var närvarande och som fokuserade på den närståendes situation. För vissa var
det viktigt att samtalet hölls i Sjukvårdsteamets lokaler. Det positiva med detta var
möjligheten till större avskildhet, att få se Sjukvårdsteamets lokaler samt möjligheten till
rundvandring på de palliativa avdelningarna. Den största svårigheten i projektet var att
genomföra samtalet snabbt efter anslutningen till Sjukvårdsteamet. Detta berodde framför allt
på tidsbrist hos personalen men även närstående kunde ha svårt att hitta luckor i sina
scheman, framför allt för närstående som arbetade.
Slutsats
Att rutinmässigt ha ett enskilt (där patienten inte är med) strukturerat samtal med närstående
för att kartlägga deras situation, deras sociala nätverk, samtala om hur de ser på att vårda i
hemmet, samt att besvara frågor är ett sätt att tidigt ge och få information. Ett enskilt
närståendesamtal innebär en möjlighet att stödja både patienten och de närstående vid vård i
hemmet och därmed förebygga att problem uppstår. Att samtalen hade en gemensam struktur
gjorde att bedömningen av den närståendes situation underlättades. Den gemensamma
strukturen hindrade dock inte individualisering av samtalen utifrån den enskildes behov.
Slutsatsen av utvärderingen är att alla närstående bör få ett erbjudande om ett samtal eftersom
det fyller en viktig funktion även om samtalet kommer betydligt senare än den stipulerade
första till andra veckan efter anslutning.

I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. Staten har bidragit med cirka en miljard kronor i stimulansmedel
och den 1 juli 2009 infördes en förändring i Socialtjänstlagen som innebär att kommunerna är
skyldiga att erbjuda anhöriga stöd.
För att dra lärdom av det utvecklingsarbete som genomförts och fortfarande pågår 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. I denna delrapport presenteras resultatet av den första
kartläggningen i Strängnäs kommun.
Kommunen ligger i norra delen av Södermanlands län och 1971 bildas nuvarande Strängnäs
kommun. Kommunen består av åtta kommundelar och tätorten heter Strängnäs. Antalet
innevånare var 32 419 personer år 2010. När det gäller stöd och omsorg är det politiskt
styrande organet Socialnämnden. Den verksamhet som bedriver det faktiska stödet är
socialkontoret där socialchefen är ytterst ansvarig och socialkontoret är indelat i tre olika
områden som var och en leds av en verksamhetschef.
Strängnäs kommun har en gemensam värdegrund som allt arbete skall utgå ifrån, så också
arbetet med anhörigstöd. Värdegrunden beskriver kommunens förhållningssätt och den
yttersta målsättningen är nöjda kommuninnevånare. År 2009 när den nya lagstiftningen kom
gjordes en kommunrevision angående anhörigstödet. Svaret på revisionen fastställer att varje
anställd inom kommunens socialtjänst har ett ansvar "att informera om vilka stödformer som
finns samt förmedla kontakt mellan stödbehövande och verksamheter som kan utgöra ett stöd
för varje anhörigas unika situation".
I Strängnäs kommun anställdes en anhörigkonsulent på 75 % i projektform den 1 mars 2007
och i september samma år invigdes Anhörigcentrum. Anhörigcentrum är en mötesplats för
människor som ger omsorg och stöd till någon anhörig eller vän. Här kan anhöriga träffa
andra i samma situation och delta i olika stödgrupper eller utbildningar och det finns också
möjlighet till enskilda samtal. Den anhörig som deltar i någon av Anhörigcentrums aktiviteter
kan få avgiftsfri avlösning till den närstående som är hemma
8
På Anhörigcentrum finns också en caféverksamhet och personalen på Anhörigcentrum
informerar om olika insatser som kommunen erbjuder. Därutöver finns en IT-portal på nätet
(Gapet) som är tillgängligt dygnet runt. Portalen riktar sig till alla åldrar och målgrupper och
ger den anhörige möjligheten att få kontakt med andra runt om i landet.
På anhörigcentrum finns även Resursteamet och den Uppsökande verksamheten.
Resursteamet arbetar med frågor som är kopplade till demenssjukdom eller annan kognitiv
svikt. Den uppsökande verksamhet vänder sig till personer som är 80 år och äldre och inte har
något bistånd från kommunen. På Strängnäs kommuns hemsida informerar man om det
anhörigstöd som finns i kommunen och det som lyfts fram som centralt är Anhörigcentrum.
Studien startar med en kartläggning av stödet till anhöriga i de utvalda kommunerna inom
områdena; äldreomsorg, verksamheter för personer med funktionsnedsättning samt individ
och familjeomsorg. Ytterligare en kartläggning genomförs år tre. Årligen genomförs
fokusgruppsintervjuer, en inom varje område. Första och sista året genomförs även en
enkätstudie och telefonintervjuer genomförs med ett slumpmässigt antal utvalda anhöriga i
kommunerna baserat på den enkät de fyllt i.
Inom de tre områdena i Strängnäs kommun samlades aktuell dokumentation in,
verksamhetscheferna intervjuades och en enkät skickades ut till enhetscheferna. Efter
kartläggningen utfördes fokusgruppsintervjuer där politiker, chefer, medarbetare, ideella
organisationer och anhöriga deltog. Namn på anhöriga samlades in och NkA har utifrån dessa
utfört en enkätundersökning med efterföljande telefonintervjuer.
Resultatet visar att Anhörigcentrum och dess personal gör ett gott arbete utifrån de resurser
som finns tillgängliga, men att verksamheterna måste ta ett mycket större ansvar och bidra till
att anhöriga får det stöd som de behöver och har rätt till. Den gemensamma värdegrunden i
Strängnäs kommun bör lyftas upp och diskuteras ytterligare och samverkan inom den egna
kommunen behöver utökas. Det behövs också mer information till anhöriga om vilket
anhörigstöd som finns. En strategi för hur anhörigstödet skall bedrivas, uttalade mål samt
handlingsplaner och stödplaner bör också utarbetas och anhörigstödet till de anhöriga som har
vuxna barn med funktionsnedsättning är i mycket stort behov av utveckling.

Hösten 2013 ändrades bestämmelserna i skollagen om utvecklingssamtalet och den skriftliga individuella utvecklingsplanen. Ändringarna i skollagen innebär sammanfattningsvis att utvecklingssamtalet har fått en utvidgad roll och att kravet på skriftliga individuella utvecklingsplaner avskaffas i de årskurser betyg sätts. Skriftliga individuella utvecklingsplaner ska upprättas en gång per läsår för elever i årskurs 1-5 i grundskolan, grundsärskolan och sameskolan samt i årskurs 1-6 i specialskolan. De ska även upprättas en gång per läsår för elever i årskurs 6-9 i grundsärskolan i de fall betyg inte sätts. Motsvarande gäller för elever i årskurs 7-10 i specialskolan som läser enligt grundsärskolans kursplaner.

Under de senaste trettio åren har valfrihet och självbestämmande varit ledord för den svenska välfärdspolitiken. Att individen själv ska ha rätt att bestämma över sin vardag har inneburit att man inom funktionshinderpolitiken alltmer har kommit att betona den enskildes möjlighet att påverka villkoren för stöd och hjälpinsatser.

Människor med utvecklingsstörning är i dag mer integrerade i samhället. Men vad händer när funktionshindrade inte vill se sig som klienter utan framhåller andra värden och livsprojekt?

Författarna har mångårig erfarenhet av verksamhetsnära arbete. Deras forskning är inriktad på de upplevelser och erfarenheter som personer med utvecklingsstörning har. I den här boken sätts dessa erfarenheter in i en större samhällelig och välfärdspolitisk kontext.

Denna andra upplaga har reviderats utifrån nyare lagstiftning och innehåller även två nyskrivna kapitel: "Internet och sociala medier" samt "Utvecklingsstörning och hälsa". Boken vänder sig till universitets- och högskolestudenter vid socionom- och lärarprogrammen, samhällsvetenskapliga, beteendevetenskapliga och vårdvetenskapliga utbildningar samt till yrkesverksamma inom välfärdssektorn och andra som är intresserade av frågor om funktionshinder.

Martin Molin, docent och fil. dr i handikappvetenskap, Institutionen för pedagogik och specialpedagogik, Göteborgs universitet.

Lennart Sauer, fil. dr i socialt arbete, Institutionen för socialt arbete, Umeå universitet.

Jens Ineland, fil. dr i socialt arbete, Pedagogiska institutionen, Umeå universitet.

Ramböll Management Consulting har på uppdrag av Länsstyrelsen i Skåne län
utvärderat anhörigstödet i Skåne utifrån ett anhörigperspektiv. Tio stycken
representativt utvalda kommuner i Skåne län har ingått i utvärderingen. Följande
frågor har analyserats;
 Hur har anhörigstödet vidareutvecklats?
 Hur har kvaliteten på anhörigstödet som erbjuds förbättrats?
 Hur har tillgängligheten till anhörigstödet förbättrats?
 Hur har stöd som efterfrågas av anhörigvårdare utvecklats?
 Hur har anhörigvårdarnas livskvalitet förbättrats?
 Hur har samverkan med andra frivilliga/ideella krafter påverkat
anhörigstödets utveckling?
Datainsamlingen har genomförts med hjälp av; intervjuer, fokusgrupper och
dokumentstudier. Flera av utvärderingens frågeställningar har kunnat belysas med
hjälp av två eller flera datainsamlingsmetoder samtidigt. Härigenom åstadkommer
vi en stabil grund för analysen och våra slutsatser.
Rambölls bedömning är att anhörigstödet har vidareutvecklats som följd av de
statliga stimulansmedlen. Fler kommuner erbjuder idag träffpunkter jämfört med
tidigare och fler må-bra-aktiviteter erbjuds. Anhörigsamordnare har inrättats i
samtliga kommuner som ingått i vårt urval och det förekommer allt fler nätverk
och erfarenhetsutbyten mellan kommunerna.
Kvaliteten i anhörigstödet har förbättrats under de åren som staten betalat ut
stimulansmedel. Fokus i flera kommuner har varit att bygga en verksamhet av god
kvalitet som är hållbar. Med anledning av detta har utvecklingen och utformandet
av verksamheten varit relativt likartad mellan kommunerna. I samtliga kommuner
som varit föremål för utvärderingen finns anhörigsamordnare samt ett brett utbud
av aktiviteter för anhörigvårdare.
Vad gäller tillgängligheten så bedömer Ramböll att den delvis har förbättrats.
Samtliga kommuner erbjuder en träffpunkt och har en anhörigsamordnare.
Information om stödet finns tillgängligt via broschyrer på exempelvis apotek och
vårdcentraler. Flera av anhörigsamordnarna, liksom biståndshandläggarna,
informerar även om stödet. Däremot upplever både kommunala tjänstemän och
anhörigvårdare att stödet inte når ut till alla som kan tänkas ha behov av det. Till
exempel är uppslutningen på träffpunkterna inte så stor som man önskat och man
vet att det finns fler i kommunen som är i behov av stödet. Vad detta beror på
finns det olika teorier om. En återkommande förklaring är att de i målgruppen inte
5
själva identifierar sig som vårdare av en anhörig utan i första hand som
make/maka där det är en plikt att man tar hand om sin sjuka närstående. Flera
anhörigvårdare beskriver hur svårt det är att ta klivet till att se bortom sin
närståendes situation och även börja tänka på och ta hand om sig själv.
Anhörigvårdare får det stöd de efterfrågar, inom ramen för vad som är rimligt. Det
är vanligt att anhörigsamordnare ordnar träffar och fokusgrupper där
anhörigvårdare lämnar förslag på hur de vill att exempelvis aktiviteterna och
träffpunkterna ska utformas och vad de ska innehålla. Som exempel efterfrågar
vissa anhörigvårdare utbildningar och information om exempelvis lyftteknik eller
demenssjukdomens olika stadier som kan ske i samband med träffpunkterna. Det
är också vanligt att andra föreningar och kommunala verksamheter bjuds in för att
prata om vilket stöd de kan bidra med.
Vad gäller livskvaliteten menar anhörigvårdare som deltar i verksamheten att den
definitivt har ökat. Man upplever trygghet och gemenskap. Avlastningen gör att
man känner sig spontan och fri. Dessutom upplever man mindre stress och oro då
man vet att man har någonstans att vända sig när det känns jobbigt. De anhöriga är
överens om att kommunens åtgärder leder till ökad livskvalitet för dem.
Samverkan med andra organisationer och föreningar varierar från kommun till
kommun och har delvis ökat. Svenska kyrkan och Röda Korset är de vanligaste
samverkanspartnerna. Andra man samverkar med är exempelvis pensionärs-,
demens- och invandrarföreningar. Att samverkan inte har ökat i högre
utsträckning kan bero på att det finns en viss konkurrens mellan föreningarna då
varje förening bevakar sitt medlemsantal. Rambölls bedömning är alltså att en
bristande samverkan inte beror på att anhörigsamordnaren underlåtit att försöka
etablera en samverkan.
Avslutningsvis har det förts resonemang dels om framgångsfaktorerna sett ur ett
organisatoriskt och verksamhetsperspektiv, dels om kommunen hade genomfört
åtgärderna utan statligt stöd.
Sett ur ett organisatoriskt perspektiv har speciellt viktiga framgångsfaktorer varit
inrättandet av anhörigsamordnare vars uppdrag varit att initiera verksamheten för
de anhöriga. Rambölls bedömning är att anhörigvårdarna själva inte hade orkat
starta en liknande verksamhet. Förutom att anhörigsamordnare har bidragit till att
skapa ett socialt nätverk för anhörigvårdare har de även arbetat aktivt med att
förankra anhörigperspektivet i alla delar av organisationen för att anhörigstödet
ska vara hållbart.
Sett ur ett verksamhetsperspektiv har en viktig framgångsfaktor för anhörigstödet
varit att de anhöriga själva har kunnat påverka utformningen av stödet. Dock har
den önskade effekten av information och kartläggningar, att nå hela målgruppen,
uteblivit.
6
Rambölls bedömer även att flera av aktiviteterna inte hade kunnat genomföras
utan statligt stöd. Anhörigstödet har delvis finansierats av kommunala medel men
med hjälp av statliga stimulansmedel har stödet kunnat prioriteras och fokuseras.

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

Denna antologi innehåller en rad intressanta texter om äldreomsorg, kvinnosyn och socialpolitik. Boken diskuterar synen på åldrandet och var ansvaret ligger för omsorgen om de gamla -- något som skiftat över tid och från samhälle till samhälle. Den behandlar både frndringar på mycket lång sikt och de högst aktuella och mycket snabba förändringar i svensk och europeisk socialpolitik och omsorgspraktik som vi nu upplever. Utöver redaktörerna Rosmari Eliasson-Lappalainen och Marta Szebehely medverkar Birgitta Odén, Svein Olav Daatland, Annelie Anttonen och Clare Ungerson.

De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig. Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap. Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin. På Natur och Kultur har han tidigare utgivit Återhämtning från svåra psykiska störningar

Socialstyrelsen följer upp och utvärderar 1997:1

Sammanfattning
Fallskador hos äldre är ett ökande problem i Sverige som orsakar stort lidande, liksom stora kostnader för samhället. Socialstyrelsen har det övergripande ansvaret för att sprida information om fallrisker och fallprevention till äldre. Nationellt kompetenscenter anhöriga (Nka) har sökt och beviljats medel från Socialdepartementet för utvecklings av en verktygslåda gällande äldres fallprevention. Verktygslådan ska riktas till anhöriga som vårdar eller stöttar äldre i hemmet.
Som ett första steg har en så kallad scopingstudie (hädanefter kallad kunskapsöversikt) genomförts i syfte att få en överblick över tillgänglig forskning och annan litteratur på området anhöriga och äldres fall/fallrisk/fallprevention. Studien har utgått från den modell som utarbetades av Arksey och O'Malley (1) och som består av sex steg med en avslutande konsultation med målgruppen, i detta fall anhöriga.
Resultatet av kunskapsöversikten visar att det finns mycket lite forskning gällande anhöriga och deras syn på och upplevelse av närståendes fall, inte minst ur ett svenskt perspektiv. Totalt identifierades 49 relevanta källor, varav 42 vetenskapliga artiklar, en avhandling, ett dokument med tips och råd samt fem rapporter. Endast en svensk vetenskaplig artikel identifierades. Analys av källorna visade att dessa främst berörde fyra huvudteman; Konsekvenser för anhöriga av närståendes fall, Anhörigas förhållningssätt och strategier, Information, utbildning och stöd till anhöriga gällande fallprevention samt 4) Involvering av anhöriga i äldres fallprevention. De fyra huvudtemana kategoriserades i 15 underkategorier vilka beskrivs i kapitel 3. Ett tydligt resultat av kunskapsöversikten är att behovet av stöd och information till anhöriga, liksom behovet av att involvera dem betonas men att det finns få exempel på att så faktiskt har skett.
För att verifiera resultatet i en svensk kontext genomfördes steg 6 i Arkseys och O'Malleys modell (1) i form av fokusgrupper och intervjuer med totalt 30 anhöriga. De intervjuade bestod av makar och barn till äldre. Resultatet av konsultationen visade att det råder stor överensstämmelse med de internationella studierna. Dock tyder intervjuerna på vissa kulturella skillnader som vore intressant att studera vidare, exempelvis användandet av tvång och begränsningar som förefaller mindre vanligt bland de anhöriga som intervjuats. Istället betonas självständighet och den äldres möjlighet till delaktighet och livskvalitet. Anhöriga ger också några exempel på hur de har fått stöd från kommunen vilket i dessa fall har bidragit till deras egen kunskap och trygghet. Under fokusgrupper och intervjuer behandlades också behovet av information/stöd och den verktygslåda som Nka ska ta fram i samarbete med anhöriga. Exempel på kunskap/behov som anhöriga lyfter är:
- Information om fallrisker i hemmet och utomhus samt tips på vilka åtgärder anhöriga kan göra för att minimera riskerna.
- Information om vad anhöriga bör tänka på och vart de kan vända sig för att få
råd och stöd, exempelvis Apoteket, sjukgymnast, äldresjuksköterska, anhörigkonsulent etc.
- Nationellt nummer för fallpreventiva frågor, gärna kopplat till 1177.

Hur informationen ska förmedlas skiljer sig åt mellan intervjuade makar och barn till äldre, där de äldre anhöriga föredrar muntlig information i hemmet medan yngre är mer benägna att själva söka information på internet. Anhöriga lyfter också behovet av en utbildning om fallprevention för professionella samt material riktat till föreningarna att sprida till sina medlemmar.

I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
 Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
 Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
 regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.

I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
 Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
 Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
 regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.

Statens offentliga utredningar

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

Den svenska Utredningen om vanvård i den sociala barnavården (i fortsättningen kallad Vanvårdsutredningen) initierades, i likhet med flera andra länder, först efter att människor berättat i media om sina erfarenheter av övergrepp och misshandel från sin tid i barnhem eller fosterhem.

Delrapport och Upprättelseutredning

I januari 2010 presenterade utredningen sin delrapport, "Vanvård i social barnavård under 1900-talet". En direkt följd blev att regeringen tillsatte Upprättelseutredningen som fick i uppdrag att föreslå hur upprättelse för dessa människor skulle kunna utformas.

Upprättelseutredningen överlämnade sitt betänkande till regeringen i februari 2011. Förslagen handlade om en process i tre delar; ett erkännande av det som hänt och en ursäkt, kompensation till dem som utsatts samt åtgärder för att förhindra upprepning.

Slutrapportens syfte

Syftet med slutrapporten är att presentera en fördjupad resultatredovisning där enskilda människor och deras berättelser, får en mer framskjuten placering än i delrapporten. Dessutom har ambitionen varit att diskutera hur det var möjligt att intervjupersonerna kunde råka så illa ut som barn och hur liknande missförhållanden för samhällsvårdade barn ska kunna undvikas i framtiden.

Slutrapportens struktur

Utredningens material omfattar redogörelser i olika former; intervjureferat, inspelade intervjuer, nedtecknade levnadsberättelser, arkivhandlingar, domar och tidningsartiklar. Detta varierande material ger inblick i sammanhang i vilken vanvården skedde och kunskap om den utsatthet som barn och ungdomar inom den sociala barnavården befann sig i.

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.

Maternal traumatization has been proposed as a risk factor for child development, but the mechanisms involved are poorly understood. This study analyzed the interrelations among maternal posttraumatic stress symptoms, parent–child interaction (emotional availability), and infants' psychosocial functioning and development among 49 asylum-seeker and refugee mothers and their children (18–42 months). Measures included assessment of mothers' trauma and comorbid symptoms (Harvard Trauma Questionnaire: R.F. Mollica et al., 1992; Hopkins Symptom Checklist: L. Derogatis, R. Lipman, K. Rickels, E. Uhlenhuth, & L. Covi, 1974), emotional availability within parent–child interaction (Emotional Availability Scales: Z. Biringen, 2008), and infants' psychosocial functioning (Child Behavior Checklist: T.M. Achenbach & L.A. Rescorla, 2000) and development (Bayley Scales of Infant Development: B.F. van der Meulen, S.A.J. Ruiter, H.C. Spelberg, & M. Smrkovsky, 2000). The results show that higher levels of maternal posttraumatic stress symptoms are associated with a higher level of psychosocial problems of infants, but not with delays in their mental or psychomotor development. The results also show that higher levels of maternal posttraumatic stress symptoms are associated with higher levels of insensitive, unstructuring, or hostile, but not intrusive, parent–child interactions. Infants show lower levels of responsiveness and involvement to their traumatized mothers. Parent–child interaction did not function as a mediator between maternal trauma symptoms and infants' psychosocial functioning. Results are discussed in relation to the dyad's regulation of emotions. Results implicate a need to reestablish attunement between traumatized mothers and their nontraumatized children.

Maternal traumatization has been proposed as a risk factor for child development, but the mechanisms involved are poorly understood. This study analyzed the interrelations among maternal posttraumatic stress symptoms, parent–child interaction (emotional availability), and infants' psychosocial functioning and development among 49 asylum-seeker and refugee mothers and their children (18–42 months). Measures included assessment of mothers' trauma and comorbid symptoms (Harvard Trauma Questionnaire: R.F. Mollica et al., 1992; Hopkins Symptom Checklist: L. Derogatis, R. Lipman, K. Rickels, E. Uhlenhuth, & L. Covi, 1974), emotional availability within parent–child interaction (Emotional Availability Scales: Z. Biringen, 2008), and infants' psychosocial functioning (Child Behavior Checklist: T.M. Achenbach & L.A. Rescorla, 2000) and development (Bayley Scales of Infant Development: B.F. van der Meulen, S.A.J. Ruiter, H.C. Spelberg, & M. Smrkovsky, 2000). The results show that higher levels of maternal posttraumatic stress symptoms are associated with a higher level of psychosocial problems of infants, but not with delays in their mental or psychomotor development. The results also show that higher levels of maternal posttraumatic stress symptoms are associated with higher levels of insensitive, unstructuring, or hostile, but not intrusive, parent–child interactions. Infants show lower levels of responsiveness and involvement to their traumatized mothers. Parent–child interaction did not function as a mediator between maternal trauma symptoms and infants' psychosocial functioning. Results are discussed in relation to the dyad's regulation of emotions. Results implicate a need to reestablish attunement between traumatized mothers and their nontraumatized children.

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

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

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

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

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

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

This report is based on three studies within the Family Support Project (FAS-project). The first study focused on respite care service from three perspectives. The second study focused on families with children with brittle bones (osteogenesis imperfecta) and the third study focused on families with children with muscular diseases. Study two and three surveyed the families' opportunities to exert influence on and participate in the decision process. The aim of this dissertation is to highlight how families with children with disabilities experience daily life, what is working well and what is not working as well as desired. The aim is also to find out what areas the families experience as problematic and within what areas they need a better support and to demonstrate what can be done in the municipalities in order to facilitate for the families. For many years I have been working with projects concerning family support. The different projects have applied to families with children with disabilities and among other things to families with children with brittle bones and muscular di-seases. These diagnoses are mentioned as small and less known disability groups. The results from the studies show that many families have difficulties in receiving the support they need and demand, that they have difficulties to communicate with authorities and administrators and that the knowledge about different kinds of disabilities are lacking. This is one reason why these families have not received the understanding and support for their daily lifes as they should.

This report is based on three studies within the Family Support Project (FAS-project). The first study focused on respite care service from three perspectives. The second study focused on families with children with brittle bones (osteogenesis imperfecta) and the third study focused on families with children with muscular diseases. Study two and three surveyed the families' opportunities to exert influence on and participate in the decision process. The aim of this dissertation is to highlight how families with children with disabilities experience daily life, what is working well and what is not working as well as desired. The aim is also to find out what areas the families experience as problematic and within what areas they need a better support and to demonstrate what can be done in the municipalities in order to facilitate for the families. For many years I have been working with projects concerning family support. The different projects have applied to families with children with disabilities and among other things to families with children with brittle bones and muscular di-seases. These diagnoses are mentioned as small and less known disability groups. The results from the studies show that many families have difficulties in receiving the support they need and demand, that they have difficulties to communicate with authorities and administrators and that the knowledge about different kinds of disabilities are lacking. This is one reason why these families have not received the understanding and support for their daily lifes as they should.

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

Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
OBJECTIVE:
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
DESIGN:
Qualitative with a phenomenographic approach.
SETTING:
Three Swedish hospitals.
PARTICIPANTS:
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
METHODS:
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
RESULTS:
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
CONCLUSIONS:
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.

Att få ett autistiskt barn är något av det mest omvälvande man kan uppleva. Livet som Autist skiljer sig så mycket från ett vanligt, vilket även kom att innebära dramatiska förändringar för oss som föräldrar. Det som var så självklart blev nu bergsliknande hinder som skulle ta all vår kraft och energi för att lösa och hitta vägar som fungerar. ?Boken beskriver hur det var att få ett autistisk barn till de utmaningar som ungdomsåren och vuxenlivet förde med sig. Det vi trodde var en manual i uppväxt visade sig vara något helt annat i autismens inneslutna värld. ?Vår son är idag vuxen och vi kan se tillbaka på ett liv full av överraskningar utmaningar och många misslyckanden. Men samtidigt många segrar. Vårt liv fick inte bli isolerad från all det vi ville uppnå tillsammans med våra barn. Autismen fick inte segra, det skulle vara vår tydliga mål, ja livsuppgift. Autism skulle inte vara vår son utan bara en del av honom. Bakom ögonen fann vi en riktig go, glad, kärleksfull och alldeles underbar kille, vi hittade vår son.??Berättelsen börjar en vårdag 1993. En vanlig dag kan det verka som, men denna lördag skulle våra liv förändras för alltid. Det liv vi hade hoppats på skulle nu för alltid vara borta. Vi visste det bara inte då.

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

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

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

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

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

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

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

Amyotrophic Lateral Sclerosis (ALS) presents significant challenges for affected families. The aim for this study was to assess the feasibility of using the Strengths and Difficulties Questionnaire (SDQ) with adolescents and parents with and without ALS. The method involved repeatedly distributing the questionnaire to evaluate its content and structure within this group. The SDQ Prosocial Behaviour subscale and total difficulties score was calculated, along with median values and standard deviations. Parent-adolescent agreement was assessed using intraclass correlations. Data were collected from 11 Swedish families, including 14 adolescents (aged 8–25), 9 parents with ALS, and 8 co-parents. The findings revealed differences between parent and adolescent SDQ scores, emphasizing the need for adolescents’ self-assessments. Their SDQ scores did not indicate significant difficulties, suggesting that most were coping well with everyday life. However, there is significant heterogeneity in the experiences and needs of adolescents. A larger study is needed to confirm its usability

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.

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

This paper uses qualitative data from a cross-national study of 'cash for care' schemes in five European countries (Austria, France, Italy, The Netherlands and the United Kingdom) to consider the concepts of empowerment and independence in relation to both care-users and care-givers. The paper locates the schemes along two axes, one of regulation/non-regulation, the other whether relatives can be paid or not. Each of the schemes has a different impact both on the care relationship and on the labour market for care. In The Netherlands where relatives can be paid, for example, a fully commodified form of informal care emerges; but in Austria and Italy with low regulation, a mix of informal and formal care-givers/workers has emerged with many international migrant workers. In the UK, direct payments allow care-users to employ local care-workers who deliver care for various lengths of time; while in France a credentialised system means that care-work is delivered by qualified workers but for very short intervals. The main conclusion is that none of these schemes have a simple outcome or advantage, and that the contexts in which they occur and the nature of their regulation has to be understood before drawing conclusions about their impact on empowerment and independence on both sides of the care relationship.

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

Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

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

Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents.

Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems.

Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL).

Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention.

Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence.

Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

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

ABSTRACTSocial service provision in Europe has increasingly incorporated informalcarers. Consequently, these carers are now included within the scope ofall social workers, including care managers. Most support for carers isindirect support, where opportunities for respite are channelledthrough the care receiver’s needs assessment. This approach highlightsthe unique role of care managers providing carer support as theybalance their public task directed towards clients with the concurrentpolicy-driven expectation to support carers. The aim of this article is toexplore how care managers, as street-level bureaucrats, ‘make’ carersupport policy on the ground. Using systematic text condensation of 10qualitative interviews with care managers in Sweden, we present threethemes to understand care managers’ experiences. Care managers work‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outsideone’s scope of work, and there are possibilities and practices towards acarer perspective. Following Lipsky’s dictum that street-level bureaucrats’actions effectively ‘become’ the public policy they carry out, our resultshighlight care managers’ possibilities and challenges in shaping whatdirect and indirect carer support looks like on the ground.

Background: Having an infant requiring care in a Neonatal Intensive Care Unit (NICU) is challenging for parents, often the beginning of a journey of stress and worry for parents. Such situations could cause difficulties in problem solving and communication within the family and result in decreased family functioning.
Aim: The overall aim of the thesis was to investigate parents' experiences when their children have needed NICU in the newborn period, and to investigate parents' experiences and effects of a family-centred intervention.
Method: Data was collected through interviews with parents of infants requiring NICU care (I) and six months after the intervention with Family Health Conversations (IV), analysed using thematic analysis (I) and qualitative content analysis (IV). Questionnaire data was collected in conjunction with inclusion (n=147) (II, III), and five (n=113) and eight (n=92) months after inclusion (III). The questionnaire included measures to assess mental health symptoms, bonding, family wellbeing, and family functioning. Quantitative data was analysed with descriptive and inferential statistics (II, III).
Results: The results of study I were presented as two themes: interactions within the family, and interactions between parents and staff. Interpersonal interactions could both facilitate and hinder in the sense of becoming a parent and a family. In study II nearly 40% of the parents reported anxiety symptoms. Mothers reported more mental health issues than non-birthing parents. Depression was associated with bonding difficulties and family wellbeing. In the longitudinally study (III) the intervention trended toward positive effects on mental health, family well-being, and family functioning. However, the estimated effects were not statistically significant. Regardless of the intervention, mental health symptoms decreased over time, whereas family well-being and functioning remained stable. Parents experienced the Family Health Conversations (IV) as an opportunity to co-create a comprehensive picture of what had happened after their child was born.

Föräldrar med intellektuell funktionsnedsättning (IF) kan behöva stöd i sitt föräldraskap för att barnet ska få en bra uppväxt. Socialtjänsten behöver kunskap för att kunna göra välgrundade överväganden och för att kunna ge barn och föräldrar adekvata stödinsatser. Barn riskerar att fara illa om de inte uppmärksammas eller om deras föräldrar får för lite stöd för att kunna utveckla sin föräldraförmåga. Barriskerar också att fara illa om de blir placerade och tappar kontakt med sitt ursprung och nätverk. FN:s konvention om barnets rättigheter anger att samhället behöver ge lämpligt stöd till föräldrar som ansvarar för barnets uppfostran och omvårdnad för att garantera och främja de rättigheter som barnet har. Barnet kan inte ses isolerat från sin familj. Ofta är det dock olika delar av kommunen som utreder och ansvarar för stöd i vardagen till vuxna som har en funktionsnedsättning respektive stöd och skydd för barn. Runt dessa familjer behöver kommunens olika förvaltningar arbeta tillsammans för att en helhetssyn ska vara möjlig. Det gäller både i utredningsförfarandet och vid utformning och utförande av stöd.
Syftet med kunskapsstödet är att öka socialtjänstens kunskap och kompetens för att kunna möta familjerna och tillsammans med dem utforma ett stöd.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care

Informal carers are an integral part of care provision in Sweden, with approximately one in five people providing regular help to a family member or friend. Indeed, carers provide most of the care for people with health and/or care needs living at home. However, they are also relatively neglected in policy terms, with large variation in the type and extent of support offered across the country. This chapter outlines the carer leave policies available, highlighting that the current policy landscape does not sufficiently address the needs and preferences of working carers. Nevertheless, there is a growing political will to recognise the situation of carers in Sweden, marked by the launch of the first national carers strategy by the previous government in April 2022.

Background/Objectives: This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15–17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. Methods: We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. Results: The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. Conclusions: The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

Objectives. This study investigates the role of gender, caregiving, and marital quality in the correlation between widowhood and depression among older people within a European context by applying the theory of Social Production Functions as a theoretical framework.Method. Fixed-effects linear regression models are estimated using the first 2 waves (2004, 2006) of "The Survey of Health, Ageing and Retirement in Europe" (SHARE). A subsample of 7,844 respondents aged 50 and older in 11 countries, who were married at baseline and are either continuously married or widowed at follow-up, is analyzed.Results. Respondents who experienced widowhood between the 2 waves report significantly more depressive symptoms than those continuously married, with respondents living in Denmark and Sweden reporting a lower increase in depressive symptoms than those living in Greece, Spain, or Italy. There is no statistically significant interaction between gender and widowhood. Widowed persons who report higher marital quality at baseline show a larger increase in the number of symptoms of depression than those with low marital quality; widowed persons who report being a caregiver for their partner at baseline report smaller increase in the symptoms of depression compared with widowed noncaregivers.Discussion. The results support the results of previous studies using longitudinal data. Furthermore, the effect of widowhood varies among the 11 countries in the subsample although only a small amount of the variation in the increase of depressive symptoms after becoming widowed can be explained by such contextual factors.

This study evaluated and compared the effects of Orff-based music therapy, social work, and wait-list control groups on behavioral problems and grief symptoms of bereaved school-aged children. Social work and music therapy sessions were provided weekly for one hour over an eight-week period. Participants (N = 26) attended three different public elementary schools, and each school was randomly assigned to one of the conditions. Pre and posttest measures consisted of the Behavior Rating Index for Children (BRIC) and the Bereavement Group Questionnaire for Parents and Guardians (BP). The BRIC measured behavioral distress and the BP measured grief symptoms prior to and following participation in the assigned conditions. Statistical analyses indicated that participants in the music therapy group significantly improved in the behaviors and grief symptoms, and those in the social work group experienced a significant reduction in their behavioral problems but not their grief symptoms. Participants in the wait-list control group made no significant improvements in either their grief symptoms or behavioral problems. A reduction in behavioral distress as measured by the BRIC and a reduction in grief symptoms as measured by the BP is the most desired outcome. This study supports the use of Orff-based music therapy interventions for bereaved children in a school-based grief program. Recommendations for future research are included.

In the Holocaust literature, considerable attention has been given to the psychological impact of Holocaust survivors' trauma on their offspring. There is some evidence to show that parenting styles and parent-child communication regarding the Holocaust are important mechanisms through which survivors' trauma affects the psychological adjustment of their offspring. The present study extends this work to a Cambodian context in focusing on intergenerational effects of trauma stemming from the Khmer Rouge regime. Specifically, the effects of parental unresolved trauma, in terms of the mother's PTSD symptoms, on second generation Cambodian adolescents were examined. Extrapolating from the findings in the Holocaust literature on second generation effects of trauma, it was hypothesized that the severity of the mother's trauma symptoms stemming from the Khmer Rouge regime would be predictive of her child's level of psychological distress, and that this relationship would be mediated by parenting style and parent-child communication. It was also predicted that the child's level of bicultural integration would serve as a protective factor in moderating the impact of the mother's trauma such that a child with a higher level of bicultural integration would be less negatively psychologically affected.

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

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

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

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

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

Background

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

Methods

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

Results

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

Conclusions

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

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

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

The 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.

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

Objectives: As in nearly all European countries, demographic developments in Germany have led to both a relative and an absolute increase in the country's elderly population. The care and support needed by these people is primarily provided by relatives or friends and close acquaintances within the home environment. The major challenges for society are to sustain, promote and support these informal resources. In order to achieve this, it is crucial that family caregivers are provided with situation-specific services that support them and relieve their burden of care. The major challenges for society are therefore to sustain, promote and support informal resources and to provide the opportunity for the use of services aimed at assisting and relieving the burden of family caregivers. Methods: In the context of the EUROFAMCARE study, 1,003 family caregivers from Germany were interviewed at home about their experiences using a standardized questionnaire. Included in the study were primary caregivers providing at least four hours of personal care or support per week to a relative aged 65 years or older. Subjects solely providing financial support were excluded. In this paper, a linear regression analysis has been conducted to analyze impact of sociodemographic factors on the utilization of support services. Results: The family caregivers were 54 years on average (SD=13.4), 76% of them were female. The dependent elderly were 80 years on average (SD=8.3), and 69% of them were women. 60% of them were receiving long-term care insurance benefits. Use of support services aimed directly at family caregivers is very low. After including certain services aimed primarily at those in need of care but also often serving as a source of relief for family caregivers, the percentage of caregivers using support services increased slightly. Among sociodemographic characteristics, caregivers' gender and education level have the greatest influence on services use. Other influential factors are caregivers' perception of their caregiving burden and their assessment of the dependent family member's need for assistance and support.

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

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

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

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

Avhandlingens övergripande syfte är att fördjupa kunskapen om att vara förälder till vuxet barn med långvarig psykisk sjukdom. Delstudiernas speciella syften är:

Att beskriva hur mammor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag.
Att beskriva hur pappor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag
Att beskriva hur förälder till vuxet barn med psykisk sjukdom uppfattar den psykiatriska vården.
Att undersöka en grupp mammor och pappor till vuxet barn med långvarig psykisk sjukdom i Sverige och deras hälsorelaterade lisvkvalitet i förhållande till en normalpopulation, deras självskattade symptom på ångest, depression och belastning samt erfarenheter av möten med den psykiatriska vården.

Bokens författare och huvudperson, Dr Magnus Edner, berättar här utifrån patientens egenupplevda perspektiv om sin komplicerade rehabilitering och långa väg tillbaka efter en stroke med komplicerad symtombild. Läsningen är både nedslående och upplyftande på samma gång.

Nedslående på grund av att vårdens brister och tillkorta-kommanden så tydligt blottläggs, särskilt i relation till oförmågan (oviljan?) att ta ett helhetsansvar kring en rehabiliteringsprocess av ett svårbehandlat tillstånd.

Upplyftande genom att huvudpersonen genom envishet, kunskap och stort stöd från sin familj visar att det går att gradvis förbättras om rätt förutsättningar ges, även lång tid efter en hjärnskadas uppkomst.

[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.

Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.

Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.

Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.

Nyckelord: Specialpedagogik, pedagogisk kompetens, barn- och ungdomshabilitering, kunskapsområden, verksamhetsfält, yrkesspråk, talgenrer, fokusgrupper, metaforer, tidig intervention, anpassat vardagligt språk, fronesis.

Doktorsavhandling i pedagogik

Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.

Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.

Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.

- See more at: http://www.skolporten.se/forskning/avhandling/ogonblickets-pedagogik-yrkesgrupper-i-samtal-om-specialpedagogisk-kompetens-vid-barn-och-ungdomshabiliteringen/#sthash.JQdaHFR7.dpuf

För fjärde gången presenterar Socialstyrelsen och Sveriges Kommuner och Landsting öppna jämförelser av vården och omsorgen om äldre. I rapporten ges en bred bild av vården och omsorgen om äldre och den belyser områden som kan påverkas av både kommunernas och landstingens insatser.

"Det här är en ovanlig bok skriven av en ovanlig man. Boken är ovanlig eftersom den vänder upp och ner på mycket av det vi vanligtvis tänker. Vi är så vana att tänka att problemen kommer inifrån och att förändringarna måste ske inne i den person som har problem. I den här boken sägs att framgångar och misslyckanden kommer utifrån och att förändringar sker först och främst genom det som omger oss - nämligen nätverket, språket, samtalen"

En översyn har gjorts av anhörigstödet i Nacka. Syftet är att ge ett förslag till inriktningsbeslut och att utreda tillhörigheten för anhörigkonsulentfunktionen. Översynen har främst genomförts med hjälp av intervjuer och samråd med berörda tjänstemän och intresseorganisationer. Av översynen framgår att det har skett en positiv utveckling av anhörigstödet, men den pekar också på behov av fortsatt utveckling inom några områden. Bland annat framhåller intresseorganisationerna att det finns behov av större förståelse för anhörigas situation, mer vägledning och personligt stöd till anhöriga, mer individuellt anpassad avlösning och mer uppsökande verksamhet. Behov finns av en organisation som möjliggör utveckling av såväl det strategiska arbetet med anhörigstöd, som direkta stödinsatser och anhörigperspektiv i handläggningen. Slutsatsen blir att föreslå att anhörigstödet samordnas med det förebyggande arbetet. Det innebär att det strategiska arbetet med anhörigstöd samordnas av Sociala kvalitetsenheten och att Verksamheten Sociala Stödresurser föreslås få ett samlat uppdrag att arbeta med enskilda kontakter, gruppverksamhet, föreläsningar och informationsinsatser

Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme

Background This study examined the association between early parental death and children’s subsequent mental health, years of schooling, and labour-market outcomes (ie, employment and earnings) in adulthood. Methods We used nationwide register-based data for Finnish citizens born between 1971 and 1986 (n=962 350). Logistic and linear regression models were used to examine the association of early parental death before the age of 21 years with subsequent mental health and labour-market outcomes in adulthood at ages 26–30. The estimated models accounted for an extensive set of demographic and parental characteristics based on longitudinal register data. Results Early-life parental death was found to be consistently associated with a higher risk of hospitalisation due to mental health disorders, higher use of mental health-related medications, and absence from work due to illness in adulthood. The associations were negative regardless of the gender of the child or parent, but the estimated odds ratios were usually quantitatively larger for males than females. When examining the type of outcome, we observed the largest quantitative effects were observed using substance-use disorders and intentional self-harm as outcomes. Moreover, we documented considerable reductions in years of schooling, employment, and earnings in adulthood. Conclusions Parental death before the age of 21 was significantly associated with an increased risk of being diagnosed with a mental disorder and lower level of economic well-being measured by labour-market success in adulthood.

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.

In this study, chronicity in mental illness has been investigated as it is lived rather than how it might be conceptualized. Published first-hand accounts have provided the mechanism for direct access in coming to know the life of persons, their circumstances, and the meanings they associate with a life of persistent and enduring mental illness. These are unique and particular human experiences, and there are no empirical generalizations or law-like statements that can give such an understanding. Therefore the disclosure of meaning was sought through a hermeneutic-phenomenologic process. Four lifeworld existentials provide the framework for a combined description and interpretation of what it means to "live" chronic mental illness. The article concludes with a brief discussion of some implications for nursing practice, and commentary is made on the relevance of such insights to health care providers in both acute and community care settings.

Abstract

ObjectivesThis umbrella review aimed to evaluate whether certain interventions can mitigate the negative health consequences of caregiving, which interventions are more effective than others depending on the circumstances, and how these interventions are experienced by caregivers themselves.DesignAn umbrella review of systematic reviews was conducted.Data sourcesQuantitative (with or without meta-analyses), qualitative and mixed-methods systematic reviews were included.Eligibility criteriaReviews were considered eligible if they met the following criteria: included primary studies targeting informal (ie, unpaid) caregivers of older people or persons presenting with ageing-related diseases; focused on support interventions and assessed their effectiveness (quantitative reviews) or their implementation and/or lived experience of the target population (qualitative reviews); included physical or mental health-related outcomes of informal caregivers.Data extraction and synthesisA total of 47 reviews were included, covering 619 distinct primary studies. Each potentially eligible review underwent critical appraisal and citation overlap assessment. Data were extracted independently by two reviewers and cross-checked. Quantitative review results were synthesised narratively and presented in tabular format, while qualitative findings were compiled using the mega-aggregation framework synthesis method.ResultsThe evidence regarding the effectiveness of interventions on physical and mental health outcomes was inconclusive. Quantitative reviews were highly discordant, whereas qualitative reviews only reported practical, emotional and relational benefits. Multicomponent and person-centred interventions seemed to yield highest effectiveness and acceptability. Heterogeneity among caregivers, care receivers and care contexts was often overlooked. Important issues related to the low quality of evidence and futile overproduction of similar reviews were identified.ConclusionsLack of robust evidence calls for better intervention research and evaluation practices. It may be warranted to avoid one-size-fits-all approaches to intervention design. Primary care and other existing resources should be leveraged to support interventions, possibly with increasing contributions from the non-profit sector

Abstract [en]

Working carers (WKCs) combine paid work with informal care. Little is known about this important group of carers, which is expected to increase in number due topopulation ageing and economic trends. WKCs are beneficial for society but thecombination of work and care roles has consequences for their social and financialcircumstances as well as their health. This thesis explores the caregiving situation ofWKCs.

Study I was a scoping review of research on the challenges of and solutions for thecombination of paid work and care and the role of technologies in supportingWKCs. Results included a conceptual framework which identified high and/orcompeting demands as a key challenge solved by formal support. Web-based andcommunication technologies were seen to be a potential beneficial solution tosupport WKCs. Nevertheless, barriers existed in some instances, preventing theiroptimal use.

Studies II and III were based on data from a 2018 survey of a stratified randomsample of the Swedish population. Study II described informal care provision andreceived support among Swedish female and male WKCs. Female compared tomale WKCs cared more often alone, with more intensity, experienced care as moredemanding while their ability to work was reduced to a greater extent. Study III determined the caregiving-related factors associated with WKCs’ reducedability to work and experience of caregiving as demanding. A key finding was thatpsychological stress and financial problems due to caregiving increased the odds ofboth experiencing caregiving as demanding and a reduced ability to work, whilefinding caregiving satisfying decreased the odds of both.

Study IV was an interview study of WKCs’ experiences during the COVID-19pandemic. WKCs’ positive experiences included the delivery of support by distancevia digital technologies and more time with the care-recipient. Negative experiencesincluded the fear of becoming sick, new challenges at work, and the cancellation ofhome and community-based services for the care recipient.

This thesis contributes new knowledge on the situation of WKCs in Sweden. Itsfindings have implications for how policy can more appropriately and effectivelyaddress WKCs’ needs and preferences for support and their combination of workand care roles.

Abstract [en]

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

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.

We present a brief measure of caregiver burden, the Mood Disorder Burden Index (MDBI), for use with family members and close friends of adults with major depressive disorder (MDD) or bipolar disorder (BD). The MDBI assesses burden in three core domains (patients' mood symptoms, caregivers' worry about the future, and caregivers' interpersonal difficulties with the patient) and includes an optional module that assesses caregiver burden associated with patients' pharmacotherapy or psychotherapy. The MDBI was administered to caregivers of older individuals (i.e., 58 years and older) with MDD (n=123) or BD (n=38) who were receiving treatment through a research study. Analyses indicated evidence of convergent and discriminant validity of the new measure well as internal consistency within both caregiver groups. It will be important for future research to administer the MDBI to caregivers of middle-aged and older patients as well as those receiving treatment through inpatient settings or community outpatient clinics.

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour. (PsycINFO Database Record (c) 2012 APA, all rights reserved) (journal abstract)

Background: Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. Method: During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals' views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers' perspectives were gained for 125 people with dementia, and people with dementia's views on their own needs were obtained for 125 persons with dementia. Results: People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Conclusions: Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.

Background: The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling. Method: As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in‐depth, phenomenology‐based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory. Results: Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well‐being, exchanging experiences, social support and dealing with the outside world. Conclusions: This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

OBJECTIVE:
To examine the co-occurrence of witnessing partner violence with child maltreatment and other forms of victimization.
METHOD:
Data are from the National Survey of Children's Exposure to Violence (NatSCEV), a nationally representative telephone survey of the victimization experiences of 4,549 youth aged 0-17.
RESULTS:
Witnessing partner violence (WPV) is very closely associated with several forms of maltreatment and exposure to other forms of family violence in this sample, with adjusted OR ranging from 3.88 to 9.15. WPV is also significantly associated with a wide variety of other forms of victimization, with OR ranging from 1.43 to 7.32. More than 1/3 (33.9%) of youth who witnessed partner violence had also been maltreated in the past year, compared with 8.6% of non-witnesses. For lifetime data, more than half (56.8%) of WPV youth had also been maltreated. Neglect and custodial interference were most closely associated with WPV.
CONCLUSIONS:
These data support the poly-victimization model, indicating that many youth experience multiple forms of victimization. They also indicate that the various forms of family violence are especially closely linked.
PRACTICE IMPLICATIONS:
These results provide new urgency to calls to better integrate services to adult and child victims of family violence. For example, screening to identify the needs of child witnesses could be done in domestic violence shelters, and screening to identify the needs of adult victims could be done in child protective service settings.

OBJECTIVES:
The American Academy of Pediatrics recommends a medical home for children with special health care needs (CSHCN). In the Pediatric Alliance for Coordinated Care (PACC), 6 pediatric practices introduced interventions to operationalize the medical home for CSHCN. The intervention consisted of a designated pediatric nurse practitioner acting as case manager, a local parent consultant for each practice, the development of an individualized health plan for each patient, and continuing medical education for health care professionals. The objectives of this study were 1) to characterize CSHCN in the PACC, 2) to assess parental satisfaction with the PACC intervention, 3) to assess the impact on hospitalizations and emergency department episodes, and 4) to assess the impact on parental workdays lost and children's school days lost for CSHCN before and during the PACC intervention.
METHODS:
A total of 150 CSHCN in 6 pediatric practices in the Boston, Massachusetts, area were studied. Participants were recruited by their pediatricians on the basis of medical/developmental complexity. Physicians completed enrollment information about each child's diagnosis and severity of condition. Families completed surveys at baseline and follow-up (at 2 years), assessing their experience with health care for their children.
RESULTS:
A total of 60% of the children had >5 conditions, 41% were dependent on medical technology, and 47% were rated by their physician as having a "severe" condition. A total of 117 (78%) families provided data after the intervention. The PACC made care delivery easier, including having the same nurse to talk to (68%), getting letters of medical necessity (67%), getting resources (60%), getting telephone calls returned (61%), getting early medical care when the child is sick (61%), communicating with the child's doctor (61%), getting referrals to specialists (61%), getting prescriptions filled (56%), getting appointments (61%), setting goals for the child (52%), understanding the child's medical condition (56%), and relationship with the child's doctor (58%). Families of children who were rated "severe" were most likely to find these aspects of care "much easier" with the help of the pediatric nurse practitioner. Satisfaction with primary care delivery was high at baseline and remained high throughout the study. There was a statistically significant decrease in parents missing >20 days of work (26% at baseline; 14.1% after PACC) and in hospitalizations (58% at baseline; 43.2% after PACC). The approximate cost per child per year of the intervention was 400 dollars.
CONCLUSIONS:
The PACC medical home intervention increases parent satisfaction with pediatric primary care. Those whose needs are most severe seem to benefit most from the intervention. There are some indications of improved health as well as decreased burden of disease with the intervention in place. The PACC model allows a practice to meet many of the goals of serving as a medical home with a relatively small financial investment.

The purpose of the study was to understand the impact of chronic disability on the functional ability of older adults. Thirty older adult participants and their caregivers were asked to identify which instrumental activities of daily living (IADL) are most meaningful and how their disability affected performance. Data collected through individual analysis indicated that the most important IADL tasks were driving and managing medication. Both older adult participants and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs. However, there was a difference in the perception of the prior level of functioning for managing medication (z = 2.45, p = .024) and phone use (z = 2.26, p = .014). Results arrived at, and to be discussed, were in agreement with previous research findings indicating that complex tasks of daily living, particularly driving, are significant to the older adult's quality of life.

A variety of strategies have been used to help children with autism acquire functional communication skills. The Picture Exchange Communication System (PECS) is a unique communication training program that was developed as a means of circumventing some shortcomings associatd with these strategies. A description of the steps within PECS is provided. Long-term group data have indicated that a large proportion of children started on PECS as preschoolers acquire speech. Individual and group data supporting the use of PECS are provided.

A variety of strategies have been used to help children with autism acquire functional communication skills. The Picture Exchange Communication System (PECS) is a unique communication training program that was developed as a means of circumventing some shortcomings associatd with these strategies. A description of the steps within PECS is provided. Long-term group data have indicated that a large proportion of children started on PECS as preschoolers acquire speech. Individual and group data supporting the use of PECS are provided.

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.

Abstract
OBJECTIVES:
To measure the prevalence of maltreatment and other types of victimization among children, young people, and young adults in the UK; to explore the risks of other types of victimization among maltreated children and young people at different ages; using standardized scores from self-report measures, to assess the emotional wellbeing of maltreated children, young people, and young adults taking into account other types of childhood victimization, different perpetrators, non-victimization adversities and variables known to influence mental health.
METHODS:
A random UK representative sample of 2,160 parents and caregivers, 2,275 children and young people, and 1,761 young adults completed computer-assisted self-interviews. Interviews included assessment of a wide range of childhood victimization experiences and measures of impact on mental health.
RESULTS:
2.5% of children aged under 11 years and 6% of young people aged 11-17 years had 1 or more experiences of physical, sexual, or emotional abuse, or neglect by a parent or caregiver in the past year, and 8.9% of children under 11 years, 21.9% of young people aged 11-17 years, and 24.5% of young adults had experienced this at least once during childhood. High rates of sexual victimization were also found; 7.2% of females aged 11-17 and 18.6% of females aged 18-24 reported childhood experiences of sexual victimization by any adult or peer that involved physical contact (from sexual touching to rape). Victimization experiences accumulated with age and overlapped. Children who experienced maltreatment from a parent or caregiver were more likely than those not maltreated to be exposed to other forms of victimization, to experience non-victimization adversity, a high level of polyvictimization, and to have higher levels of trauma symptoms.
CONCLUSIONS:
The past year maltreatment rates for children under age 18 were 7-17 times greater than official rates of substantiated child maltreatment in the UK. Professionals working with children and young people in all settings should be alert to the overlapping and age-related differences in experiences of childhood victimization to better identify child maltreatment and prevent the accumulative impact of different victimizations upon children's mental health.

BACKGROUND:
It is unclear what the impact of parental ADHD is on the day-to-day life of the rest of the family and how it contributes to the intergenerational transmission of this disorder.

METHOD:
The psychosocial functioning of 23 spouses and 63 children of 33 families with an ADHD parent and 20 spouses and 40 children of 26 comparison families was examined. Both adults and their spouses were assessed for lifetime and current Axis I and Axis II diagnoses, present general psychiatric symptoms and their marital relationships. Children were screened for ADHD and other problems, using the C-DISC, CBLC, TRF and the Social Adjustment Inventory.

RESULTS:
Children with an ADHD parent had higher rates of psychopathology than those from comparison families. Children with ADHD had more co-morbidities than non-ADHD children. Family and marital functions were impaired in ADHD families regardless of the gender of the affected parent. Children without ADHD from families with one psychiatrically healthy parent did well while the behaviour of children with ADHD was always poor and not associated with parental mental health.

CONCLUSION:
The results underscore the strong genetic contribution to ADHD and the need to carefully assess the non-ADHD parent as they seem to influence the well-being of non-ADHD children in families with an ADHD parent.

IMS AND OBJECTIVES:
This study had two aims. The first aim was to compare attachment styles and traumatic childhood experiences of women with psychiatric disorders and their children to a control group. The second aim was to determine the relationship between attachment styles and traumatic childhood experiences both in mothers and their children.

BACKGROUND:
According to attachment theories, trauma in an early relationship initiates a developmental cascade in which insecure attachments may occur.

DESIGN:
A cross-sectional, descriptive study which, employed a case-control design, was performed between May 2013-March 2014.

METHODS:
This study was conducted in 63 women with psychiatric disorders and their children. The control group consisted of 63 women without any psychiatric disorders and their children. Data were collected using questionnaire forms, including the Adult Attachment Style Scale and the Childhood Trauma Questionnaire for both mothers and children. Descriptive statistics, a Pearson correlation and comparative statistics were used to analyse data.

RESULTS:
The childhood trauma scores of both the women with psychiatric disorders and their children were higher than the control group scores. Compared to the control group, the mothers with psychiatric disorders and their children were found to have less secure attachment styles. It was determined that the mothers and children with insecure attachment were more likely to have been abused.

CONCLUSION:
These results point to a relationship between trauma in childhood and attachment style. They also suggest that this relationship may undergo intergenerational transfer.

RELEVANCE TO CLINICAL PRACTICE:
This study contributes to the existing literature on the relationship between childhood traumas and attachment. Psychiatric nurses should focus not only on psychiatric disorders but also on the difficulties a patient faces regarding being a parent.

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

This article examines the relationship between job and elder caregiving involvement, bi-directional work-caregiving conflict (work interfering with caregiving [WIC] and caregiving interfering with work [CIW]), and work costs (job interruptions and job changes). Specifically, we consider the effects of both behavioral and psychological involvement and external and internal work caregiving conflict in a sample of 583 women between the ages of 50 and 64 who work full-time and have significant elder caregiving responsibilities. A telephone survey was administered using random-digit-dial procedures. Structural equation model analyses confirmed that behavioral job involvement was associated with external CIW, psychological job involvement was associated with internal WIC and internal CIW, behavioral caregiving involvement was associated with external CIW and work costs, and psychological caregiving involvement was associated with internal CIW. Internal WIC, external CIW, and internal CIW were associated with job costs. Some mediation, particularly through external and internal CIW, occurred.

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.

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.

This paper reviews one aspect, impact, of the forthcoming assessment of research in UK universities, the Research Excellence Framework (REF), and examines its meaning and potential for enhanced partnerships between social work practice and academia in the context of the current economic crisis. Examples of case studies being developed to show how research has societal impact are described and some of the complexities of what, on the surface appears to echo social work's desire to make a positive difference to the Lives of people in society, are drawn out. The importance of the REF for the integration of social work practice and academia has been rehearsed many times. This paper argues that making an impact is everybody's concern and practitioners and those who use social work services and their carers have a role to play in its creation and identification.

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

Longitudinal studies of children of alcoholics in a community context are rare, but are of special interest because they provide the opportunity to study families with alcoholic parents who do not reach clinical settings and with offspring who do not receive professional help. The current study reports on the 65 offspring of alcoholics who participated in the Kauai Longitudinal Study. The extensive data on these analyses included questionnaires and interviews of both children and adults that were collected over a 30-year period. The data showed that individuals who coped effectively with the trauma of growing up in an alcoholic family and who became competent adults relied on a significantly larger number of sources of support in their childhood and youth than did the offspring of alcoholics with coping problems by age 32.

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

The role of ethnicity in care of elderly Finnish immigrants Most Western countries are becoming increasingly multicultural because of immigration. Many of these immigrants grow old in a second homeland and will need health and elderly care in the future. In Sweden, the largest immigrant group comes from its neighbouring country, Finland. Little is known about how this group experiences present health care or their expectations of future elderly care. The overall aim of the thesis was to describe and to deepen the understanding of elderly Finnish immigrants experiences of health care and elderly care and the role that ethnicity played in these experiences. The specific aims were to: elucidate the elderly Sweden-Finns experiences and beliefs about health care in Sweden, in order to gain an understanding of how ethnic background affects the elderly immigrated persons experiences and beliefs in the host country (I); illuminate the role that culturally appropriate care plays in relation to the elderly Finnish immigrants wishes and expectations of institutional elderly care (II); describe and compare the elderly Finnish immigrants perceptions of health care, both among those who have continued to live in Sweden and those who have re-migrated to Finland (III); describe the cultural adjustments that had been made at a specific elderly care setting, the Finnish Home, and illustrate the impact of cultural adjustments on care, as conditions that promoted the well-being of the residents (IV). All the participants were born in Finland and Finnish was their native language and they lived (I-II and IV) or had lived in Sweden. In I-II, the 39 participants were 75 years or older and in III-IV, 65 years or older. In III, 217 persons participated in Finland, and 643 persons participated in Sweden. All residents, staff and visitors of Finnish Home participated in IV. Qualitative interviews were conducted in the participants homes (I-II), a mailed questionnaire was used in Study III, and an ethnographic study design was used in Study IV. Several different analysis methods were used: Hermeneutical ad hoc analysis (I), latent content analysis (II), statistical analysis (III), and an ethnographic method (IV). The results show that the Swedish health care system is congruent with the elderly Finnish immigrants expectations (I), and their experiences of care were good (III). Their experiences of the Finnish health care system were also good (III). However, sharing the same ethnic background as the care providers was believed to lead to better care (I). When thinking about future elderly care, the elderly Finnish immigrants wished to feel familiarity, continuity in life, security, and companionship. This could be achieved either in the well-known physical environment of their current homes, in an elderly care setting in their part of town, or in a well-known socio-cultural environment at an elderly care setting where Finnish was spoken and the care providers and fellow-residents were Finns (II). When being cared for in a culturally adjusted elderly care setting, the care became culturally congruent as the care providers, and the residents played the same language and ethnicity game (IV). The conclusions from the thesis show that ethnicity and ethnic identity, a shared mother language, and the place, play an important role in the care of elderly Finnish immigrants. In addition to this, the elderly Finns experienced a feeling of at-homeness when being cared for by members of their own ethnic group, in a familiar place, with people who spoke the same native language.

BACKGROUND:
Research suggests that children exposed to parental drinking problems are at risk for maladjustment. However, the potential impact of drinking problems in a community sample and the processes involved in the relationship between parental drinking and child outcomes have rarely been examined.
METHOD:
A community sample of 235 mothers and fathers of kindergarten children completed measures of problem drinking symptoms, family functioning and child adjustment.
RESULTS:
Model tests indicate that problem drinking was associated with greater marital conflict, and that marital conflict was related to ineffective parenting which was in turn related to poorer child adjustment.
CONCLUSIONS:
Even in a community sample, parental problem drinking behaviors are associated with reduced family functioning that relates to child outcomes.

Background:  Research suggests that children exposed to parental drinking problems are at risk for maladjustment. However, the potential impact of drinking problems in a community sample and the processes involved in the relationship between parental drinking and child outcomes have rarely been examined.

Method:  A community sample of 235 mothers and fathers of kindergarten children completed measures of problem drinking symptoms, family functioning and child adjustment.

Results:  Model tests indicate that problem drinking was associated with greater marital conflict, and that marital conflict was related to ineffective parenting which was in turn related to poorer child adjustment.

Conclusions:  Even in a community sample, parental problem drinking behaviors are associated with reduced family functioning that relates to child outcomes.

This study investigated the extent to which parental Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms impact child and parent outcomes following a multimodal family-school intervention, the Family School Success (FSS) program, when compared to an active-control condition (CARE). Participants were 139 children with ADHD (67% male; 91% non-Hispanic; 77% Caucasian; Grades 2-6) and their primary caretaker (91% female; ages 26-59) who participated in a randomized clinical trial evaluating the efficacy of FSS. Associations were examined between parent-reported ADHD symptoms at baseline and intervention outcomes reported by parents and teachers after treatment and at a 3-month follow-up, including child homework and classroom impairments, child ADHD and oppositional defiant disorder symptoms, parenting behaviors, and parent-teacher relationship quality. Across both treatment conditions, parental ADHD was not associated with parent or child outcomes at postassessment. However, differences emerged between the two treatment groups at follow-up for parents with ADHD, particularly when an empirically supported symptom cutoff was used to identify parents at risk for having ADHD. In FSS, but not in CARE, parental ADHD was associated with declines in treatment gains in the quality of the parent-teacher relationship and the child's homework performance. Parents at risk for ADHD had difficulty maintaining treatment effects for themselves and their child in the FSS intervention but not in CARE. The supportive and educational components central to the CARE intervention may be helpful in promoting the sustainability of psychosocial interventions for children with ADHD who have parents with elevated ADHD symptoms.

This article reviews current knowledge concerning the relationship between peer support and adjustment outcomes and experiences for parentally bereaved children. A brief overview of the effects of parental bereavement and factors influencing immediate and long-term adjustment is provided, followed by an overview of peer-provided social support and its relationship to adjustment. Current findings on the predictive value of peer support for adjustment are then discussed, with emphasis on the reciprocal positive and negative influences that peer support and adjustment (or lack thereof) exert. Areas of weakness and neglect within this domain are noted, with a focus on methodological issues, peer-relevant consequences of bereavement in need of further research, and the need for study of particular vulnerable subgroups.

Objective: This study investigated the role that social support plays in well-being and in coping after a stressful event in a group of non-clinical adolescents. Furthermore, this study aimed at replicating the finding that adolescents who reported sexual abuse reported more symptoms and less adequate coping strategies than adolescents who reported another type of stressful event or no stressful episode.

Method: Eight hundred and twenty adolescents between 12 and 18 years of age filled out questionnaires assessing social support (Social Support Questionnaire, Sarason, Shearin, Pierce, & Sarason, 1987), trauma-related symptoms (Trauma Symptom Checklist for Children, Briere, 1996), behavior problems (Youth Self-Report, Achenbach, 1991), and coping (How I Cope Under Pressure Scale, Ayers, Sandler, West, & Roosa, 1996).

Results: 42% of the adolescents reported a stressful experience, and 4.4% reported sexual abuse. Sexually abused adolescents reported more stress-related symptoms and used more avoidance and fewer support-seeking coping strategies than the other adolescents. The main-effect hypothesis of social support was sustained, but social support did not moderate the relation between a stressful event and coping. Yet, a trend was found suggesting that high support from the family was associated with less avoidance coping and more support-seeking in adolescents who reported a non-sexually abusive, stressful event.

Conclusions: Our findings show that a highly perceived availability of social support is directly associated with fewer trauma-related symptoms, especially in adolescents who are non-sexually abused. For adolescents who reported a sexual or another type of stressful event, social support did not play a different role in coping.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

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

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.

This study describes the Swedish debate on the role of family and state in care of elderly persons. It provides empirical evidence on the shifting balance of family, state, and market in the total panorama of elderly care. Secondary analysis of older (1954) and more recent data sources (1994 and 2000) is used to assess living arrangements and care patterns for persons 75 years or older living in the community. Results revealed that total spending on aged adults has stagnated, and institutional care is shrinking in absolute and relative terms, but public Home Help for elders in the community is decreasing even more. Family members increasingly shoulder the bulk of care, but privately purchased care also seems to expand. This study calculates how public and informal care changed between 1994 and 2000: Informal care is estimated to have provided 60% of all care to elders in the community in 1994 and 70% in 2000. The results parallel a crisis of legitimacy of public elderly care in Sweden. They also call into question various metaphors used to describe patterns of care. (PsycINFO Database Record (c) 2007 APA )

Abstract

PURPOSE:
This study describes the Swedish debate on the role of family and state in care of elderly persons. It provides empirical evidence on the shifting balance of family, state, and market in the total panorama of elderly care.
DESIGN AND METHODS:
Secondary analysis of older (1954) and more recent data sources (1994 and 2000) is used to assess living arrangements and care patterns for persons 75 years or older living in the community.
RESULTS:
Total spending on aged adults has stagnated, and institutional care is shrinking in absolute and relative terms, but public Home Help for elders in the community is decreasing even more. Family members increasingly shoulder the bulk of care, but privately purchased care also seems to expand. This study calculates how public and informal care changed between 1994 and 2000: Informal care is estimated to have provided 60% of all care to elders in the community in 1994 and 70% in 2000.

This meta-analytic review examines the association between attachment and internalizing symptomatology during childhood, and compares the strength of this association with that for externalizing symptomatology. Based on 42 independent samples (N = 4,614), the association between insecurity and internalizing symptoms was small, yet significant (d = 0.15, CI 0.06~0.25) and not moderated by assessment age of internalizing problems. Avoidance, but not resistance (d = 0.03, CI -0.11~0.17) or disorganization (d = 0.08, CI -0.06~0.22), was significantly associated with internalizing symptoms (d = 0.17, CI 0.03~0.31). Insecurity and disorganization were more strongly associated with externalizing than internalizing symptoms. Discussion focuses on the significance of attachment for the development of internalizing versus externalizing symptomatology.

This study addresses the extent to which insecure and disorganized attachments increase risk for externalizing problems using meta-analysis. From 69 samples (N = 5,947), the association between insecurity and externalizing problems was significant, d = 0.31 (95% CI: 0.23, 0.40). Larger effects were found for boys (d = 0.35), clinical samples (d = 0.49), and from observation-based outcome assessments (d = 0.58). Larger effects were found for attachment assessments other than the Strange Situation. Overall, disorganized children appeared at elevated risk (d = 0.34, 95% CI: 0.18, 0.50), with weaker effects for avoidance (d = 0.12, 95% CI: 0.03, 0.21) and resistance (d = 0.11, 95% CI: -0.04, 0.26). The results are discussed in terms of the potential significance of attachment for mental health.

How can the 'social capital' inherent in social networks provide contacts through which older people access practical and emotional support? What is the relative importance of kin and non-kin, and of participation in organisations and informal ties such as contacts with neighbours? Following a brief contextualisation that draws on previous literature, this paper addresses these questions through analysis of British Household Panel Survey (BHPS) data. It examines the extent to which people feel they can count on emotional and practical support from friends and relatives. A dependent variable was created that measures the outcome of the 'social capital' residing in a respondent's social network. Relatively poor support was found amongst elders who were childless or had been continuously without a partner; relatively rich support was found amongst those who had frequent contact with other people, who interacted frequently with neighbours, and who regarded their neighbourhood as a positive social environment. Being active in organisations had less effect on social support than informal social contacts. Amongst many different forms of organisational activity, the only ones that had a positive association with social support were being in contact with others through religious activities, and engaging in sports clubs. The social support of working-class elders, even those 'well networked' in formal or informal ways, was strengthened less by their social capital than was that of the professional and managerial occupational groups.

For decades, scholars have wrestled with the notion that old age is characterized by social isolation. However, there has been no systematic, nationally representative evaluation of this possibility in terms of social network connectedness. In this paper, the authors develop a profile of older adults' social integration with respect to nine dimensions of connectedness to interpersonal networks and voluntary associations. The authors use new data from the National Social Life, Health, and Aging Project (NSHAP), a population-based study of non-institutionalized older Americans aged 57-85 conducted in 2005-2006. Findings suggest that among older adults, age is negatively related to network size, closeness to network members, and number of non-primary-group ties. On the other hand, age is positively related to frequency of socializing with neighbors, religious participation, and volunteering. In addition, it has a U-shaped relationship with volume of contact with network members. These findings are inconsistent with the notion that old age has a universal negative influence on social connectedness. Instead, life course factors have divergent consequences for different forms of social connectedness. Some later life transitions, like retirement and bereavement, may prompt greater connectedness. The authors close by urging increased dialogue between social gerontological and social network research

PURPOSE:
There is a lack of comprehensive cost-of-illness studies in bipolar disorder, in particular studies based on patient-level data. The purpose of this study was to estimate the societal cost of bipolar disorder and to relate costs to disease severity, depressive episodes, hospitalisation and patient functioning.
METHODS:
Retrospective resource use data in inpatient and outpatient care during 2006-2008, as well as ICD-10 diagnoses and Global Assessment of Functioning (GAF) scores, were obtained from the Northern Stockholm psychiatric clinic with a catchment area including 47% of the adult inhabitants in Stockholm. This dataset was combined with national register data on prescription pharmaceuticals and sick leave to estimate the societal cost of bipolar disorder. The study was conducted from a societal perspective, with indirect costs valued according to the human capital method.
RESULTS:
The average annual cost per patient was 28,011 in 2008 (n = 1,846). Indirect costs due to sick leave and early retirement represented 75%, inpatient costs 13%, outpatient costs 8%, pharmaceuticals 2% and community care another 2% of the total cost. Total costs were considerably higher during mood episodes (six times higher than in remission), for hospitalised patients (55,500 vs. 22,200) and for patients with low GAF scores.
CONCLUSIONS:
The high cost of bipolar disorder is driven primarily by indirect costs. Costs were strongly associated with mood episodes, hospitalisations and low GAF scores. This suggests that treatment that reduces the risk for relapses and hospitalizations and improve functioning may decrease both the societal cost of bipolar disorder and patient suffering.

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

This paper presents some of the key findings and recommendations of the report The Tasmanian Children's Project (TCP): The Needs of Children with a Parent/Carer with a Mental Illness, October, 1999. The TCP, a collaborative venture between the University of Tasmania's School of Nursing and the Mental Health Services - South, Tasmania (Department of Health and Human Services), is the first study in Tasmania to formally examine the needs of children where the parent/carer has a mental illness. The study is a modified replication and extension of the 1993/94 Victorian Children's Project. Extension aspects of the TCP included interviews with children (in addition to parents and service providers), the inclusion of data on both maternal and paternal mental illness and a broad definition of mental illness (beyond psychotic illness and major affective disorder). The report highlights the need to provide a range of programs that encourage the development of personal competency among children, parents, and other family members and those that emphasize interagency collaboration. Implications of this research for mental health nursing education and practice are also addressed.

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

Each level provides development possibilities within itself, and even if a level is reached that can't be expanded upon for an individual, the concepts used will allow for a fun and enriching learning experience, using Eye Control, at any level.

Until now, eye control and gaze interaction within assistive technology have been reserved for those who have a proven understanding of cause and effect and who are demonstrating that they are ready for an Alternative and Augmentative Communication (AAC) device that they will be able to use with their eyes and eye control, usually together with one or another type and level of AAC vocabulary.

Reaching the level of success with eye control and the level of cognitive ability needed to achieve a successful assessment – and thus, in many cases, the professional recommendation needed to purchase, fund and use an eye controlled device – can be difficult, if not sometimes impossible.

But at Tobii Dynavox, we believe that eye control, gaze interaction and their different methods for use are skills like any other. We believe that they should be taught in constructive and structured ways in order to assist individuals in learning the practical and cognitive skills needed to reach the level of ability required to communicate with AAC vocabularies using eye controlled devices, and even to open individuals up into the world of literate, long distance communication.

The Tobii Dynavox Eye Gaze Learning Curve is a step stone, leveled, component based, teaching-and-learning pathway for eye control and gaze interaction. It incorporates teaching and learning techniques, software and suggestions for care givers, teachers and professionals assisting users from their earliest experiences and engagements with a screen to those who are fully literate and need eye controlled computer access and long distance communication.

This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.

This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.

This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.

This is a study about fairly ordinary situations in elder care: how staff deal with older people's influence, how staff talk about older people's complaints, how family members talk about elder mistreatment, and how older people act in order to exert influence in a nursing home. However ordinary, these are situations where relational power is accentuated, accomplished and able to be empirically explored. The aim here is to analyze power and influence as social phenomena in elder care. More specifically, the aims are 1) to analyze the political and bureaucratic frame in which older people have formal "voice" options; 2) to analyze staff members' "folk logic" as they respond to residents' complaints in Swedish nursing homes; 3) to analyze how family members of care recipients define and sustain claims of elder mistreatment; and 4) to ethnographically depict how older people's attempts at influence unfold in everyday interactions in a nursing home and how these attempts can be understood in the context of a "local routine culture."

Several kinds of empirical material have been used: 100 structured telephone interviews with local municipal officials, 13 qualitative interviews with nursing home staff, 21 interviews with family members of care recipients, and ethnographic data comprised of field notes and field-based interviews from five months of observation in a nursing home.

The findings demonstrate the difficulties of turning policies about older people's influence into practice. Yet, the main finding is not the "policy–practice gap" per se, but rather an understanding of how this gap is situationally shaped and maintained. The dissertation shows how the subtleties of actions and talk have powerful implications, and can constitute barriers to older people's influence. Two examples are the "rhetoric of trivialization" and a "local routine culture"; both can easily and quite inconspicuously restrict older people's autonomy and influence. A routine culture is a locally and situationally generated action repertoire and as such provides an understanding of how routines shape power relations in a nursing home. The findings also show how a rhetoric of trivialization can function as a power resource, through which older people's and family members' views are "made trivial" by the ways they are described and rhetorically treated by staff and local officials. Through the use of trivializing accounts, staff members legitimized their neglect of complaints and restrictions of older people's influence. The study argues that by recognizing how older people's influence is "made trivial," we gain an understanding of how to accomplish just the opposite. Local routines and accountability practices have a strong inertia, but the findings indicate that if actors reframe influence and complaints, they may substantially affect power relations in elder care.

This is a study about fairly ordinary situations in elder care: how staff deal with older people's influence, how staff talk about older people's complaints, how family members talk about elder mistreatment, and how older people act in order to exert influence in a nursing home. However ordinary, these are situations where relational power is accentuated, accomplished and able to be empirically explored. The aim here is to analyze power and influence as social phenomena in elder care. More specifically, the aims are 1) to analyze the political and bureaucratic frame in which older people have formal "voice" options; 2) to analyze staff members' "folk logic" as they respond to residents' complaints in Swedish nursing homes; 3) to analyze how family members of care recipients define and sustain claims of elder mistreatment; and 4) to ethnographically depict how older people's attempts at influence unfold in everyday interactions in a nursing home and how these attempts can be understood in the context of a "local routine culture."

Several kinds of empirical material have been used: 100 structured telephone interviews with local municipal officials, 13 qualitative interviews with nursing home staff, 21 interviews with family members of care recipients, and ethnographic data comprised of field notes and field-based interviews from five months of observation in a nursing home.

The findings demonstrate the difficulties of turning policies about older people's influence into practice. Yet, the main finding is not the "policy–practice gap" per se, but rather an understanding of how this gap is situationally shaped and maintained. The dissertation shows how the subtleties of actions and talk have powerful implications, and can constitute barriers to older people's influence. Two examples are the "rhetoric of trivialization" and a "local routine culture"; both can easily and quite inconspicuously restrict older people's autonomy and influence. A routine culture is a locally and situationally generated action repertoire and as such provides an understanding of how routines shape power relations in a nursing home. The findings also show how a rhetoric of trivialization can function as a power resource, through which older people's and family members' views are "made trivial" by the ways they are described and rhetorically treated by staff and local officials. Through the use of trivializing accounts, staff members legitimized their neglect of complaints and restrictions of older people's influence. The study argues that by recognizing how older people's influence is "made trivial," we gain an understanding of how to accomplish just the opposite. Local routines and accountability practices have a strong inertia, but the findings indicate that if actors reframe influence and complaints, they may substantially affect power relations in elder care.

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

The population's wish to receive care in the own home instead of at a hospital fits well with the Health Services' development in the direction of increasing home healthcare even when severe illness is involved. However, when care is moved from the hospital to the home the demands for high quality care still remain. Information and telecommunication technologies used in applications which are tailored to support caregivers and patients in home healthcare, can be part of the facilitation of this development towards an increasing home healthcare service. Remote monitoring of the patient in the home can support assuring this quality of care but such monitoring involves considering several requirement areas.This thesis describes problem areas in both basic and advanced home healthcare where information technology can be a part of the solution. Further, the thesis describes requirement areas to be considered when monitoring patients in the home, both in regard to subjective and objective variables. The requirement areas, which are described in the thesis, include security, mobility, and responsibility. Network solutions for home healthcare are discussed and two information technology applications in home healthcare are described. The first application concerns diabetes care and the second application concerns the use of digital pen technology for symptom assessments in advanced palliative home healthcare.

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.

Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia.

Policy guidelines insist that people with dementia should be involved in decisions about key life choices and transitions. However, as dementia affects both cognitive and communication difficulties, it becomes increasingly difficult to do this, and innovative and effective ways to support people with dementia and their carers to interact with each other are needed. This project, funded by Joseph Rowntree Foundation, examined if Talking Mats, a low-tech communication framework, could support family carers and people with dementia to discuss issues around daily living with each other. The fieldwork phase took place from September 2008 to May 2009. Eighteen couples (person with dementia and their family carer) from Scotland and the North of England were involved. The couples were visited in their own homes and asked to discuss together four topics (Personal Care; Getting Around; Housework; Activities) under two different conditions: (i) using the Talking Mats framework and (ii) using their usual communication methods (UCMs). After the interviews, each participant was asked separately to complete a short questionnaire (Involvement Measure), which included five questions to evaluate how involved s/he felt in each type of discussion and a final question to measure satisfaction with the overall discussion. The findings show that both people with dementia and their carers feel more involved in discussions about how they are managing their daily living when using the Talking Mats framework, compared with their UCM. They also feel more satisfied with the outcome of those discussions. The use of Talking Mats could result in increased well-being and positive adjustment to accepting increasing levels of care for people with dementia. In addition, it could improve the relationship between the person with dementia and family carers, if all involved feel that the views of the person with dementia and the family carer have truly been acknowledged. Adapted from the source document.

We assess whether informal care receipt affects the probability of transitioning to a nursing home. Available evidence derives from the US, where nursing home stays are often temporary. Exploiting linked survey and administrative data from the Netherlands, we use the gender mix of children to retrieve exogenous variation in informal care receipt. We find that informal care increases the chance of an admission within a three-year period for individuals with severe functional limitations, and increases the costs incurred on formal home care. For individuals with mild limitations, informal care substantially decreases total care costs, whereas its effect on nursing home admission is unclear. Further, informal care results in lower post-acute care use and hospital care costs, and does not increase mortality. Promoting informal care cannot be expected to systematically result in lower institutionalization rate and care costs, but it may nonetheless induce health benefits for its recipients

Aim: Our aim was to gain insight into how the relatives of family members with dementia have experienced their family members' transition from home to permanent nursing home placement.

Design: Our research was a qualitative case study.

Methods: Inspired by Kvale and Brinkmann's phenomenological-hermeneutic approach, we performed the thematic analysis of semi-structured interviews describing how the relatives of family members with dementia have experienced the dementia trajectory.

Results: Twelve relatives of family members with dementia living in nursing homes agreed to participate. The descriptions of relatives' experiences indicated four primary themes: mismatches between healthcare services and the family members' needs, witnessing the family members' cognitive decline, the effects of the experiences on the relatives' health and well-being and what matters to the relatives during their family members' transition to nursing home. Mismatches between available resources in the municipalities and the family members' healthcare needs were the most distressing experiences, along with the family members' gradual cognitive decline. In response, the relatives stressed individualized support, continuity in follow-up care and regular information-sharing between them and staff members caring for their family members. They also highlighted the importance of facilitating seamless transitions from home to nursing homes.

Syftet med översikten är att samla och systematisera aktuell och relevant forskning kring barn
medfrihetsberövade föräldrar för att därigenom bidra till ökad kunskap om och förståelse av deras
situation, reaktioner och behov.

Tre frågor har formulerats:
• Vad innebär det konkret för ett barn att ha en frihetsberövad förälder?
• Vilka konsekvenser och potentiella risker innebär det för ett barn att ha en frihetsberövad
förälder?
• Vilka behov har barnet och vilka hinder och möjligheter finns för barnet att hantera sin situation
på ett konstruktivt sätt utifrån omständigheterna?

I den här rapporten får du en inblick i hur situationen kan se ut för barn och unga som har en förälder eller annan familjemedlem som är eller har varit frihetsberövad. Du får ta del av barn och ungas röster avseende deras rätt till information, stöd och kontakt med frihetsberövad familjemedlem samt deras önskningar och framtidstankar. Utifrån barnens röster, samlad forskning och vår egen kunskap och erfarenhet redogör vi avslutningsvis för rekommendationer för att stärka dessa barns rättigheter.

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

Rapporterna går att beställa eller ladda ner
på Junis hemsida

The present study aims to examine the extent to which adolescents of immigrant background experience acculturative stress (i.e., cultural clashes with parents and ethnic victimization in school) in multiple contexts, and the reasons why such stress takes a toll on their psychological functioning and views of themselves. The analytic sample includes adolescents of immigrant background residing in Sweden (N = 423, M_age = 13.19, SD = 0.51). Cluster analysis revealed five distinct groups of adolescents, based on their reports of cultural clashes with parents and ethnic victimization in school: (1) low on both acculturative stressors, (2) average on both acculturative stressors, (3) high on cultural clashes only, (4) high on ethnic victimization only, and (5) high on both acculturative stressors. Mediation analysis showed that adolescents who experienced cultural clashes at home and who were also victimized by their peers in school reported higher levels of feeling in between cultures than adolescents in all the other clusters (except those high on cultural clashes only), and in turn reported higher levels of depressive symptoms and lower levels of self-esteem. The present study highlights the importance of understanding immigrant youth's experiences across multiple contexts simultaneously in order to develop a holistic perspective on their adjustment and integration processes.

Parental psychiatric morbidity related to experiences of war and trauma has been associated with adverse psychological outcomes for children. The aim of this study was to investigate parental post-traumatic stress in relation to psychiatric care utilization among children of refugees with particular attention on the child's own refugee status, sex of both child and parents, and specific psychiatric diagnoses. This was a register study in a population of 16 143 adolescents from refugee families in Stockholm County born 1995-2000 and followed between 2011 and 2017 (11-18 years old). Parental post-traumatic stress, identified in three levels of care, was analysed in relation to child and adolescent psychiatric care use. Cox regression analysis was used to estimate hazard ratios (HR) and 95% confidence intervals (CI), adjusted for duration of residence and demographic and socioeconomic variables. Having a mother with post-traumatic stress was associated with higher psychiatric care utilization, with adjusted HR 2.44 (95% CI 1.90-3.14) among foreign-born refugee children and HR 1.77 (1.33-2.36) among Swedish-born children with refugee parents, with particularly high risks for children with less than five years of residence (HR 4.03; 2.29-7.10) and for diagnoses of anxiety and depression (HR 2.71; 2.11-3.48). Having a father with post-traumatic stress was not associated with increased HRs of psychiatric care utilization. Similar results were seen for boys and girls. Treatment for post-traumatic stress should be made available in refugee reception programmes. These programmes should use a family approach that targets both parents and children.

Introduktion för vikarier och underlag för kvalitetsutveckling i äldreomsorgen.

Boken tar ett samlat grepp om äldreboendet och fungerar utmärkt som en introduktion för vikarier och som underlag för kvalitetsutveckling för chef, legitimerad personal och övriga medarbetare.

Författaren Erland Olsson, specialistsjuksköterska i psykiatri och egen företagare, beskriver på ett enkelt sätt flertalet av de processer som behöver ingå för att den praktiska vården och omsorgen ska fungera. Han lyfter också frågor som värdegrund, bemötande och förhållningssätt i olika situationer.

Med reflektionsfrågor i varje kapitel får du som läser möjlighet att fundera över hur verksamheten fungerar på det egna äldreboendet. Reflektionsfrågorna lämpar sig också väl som underlag för diskussion i en studiecirkel eller i samband med era personalmöten på äldreboendet.

De flesta av oss kommer någon gång i livet i kontakt med äldreomsorgen, antingen utifrån våra egna behov eller som närstående. Ett äldreboende är en komplex verksamhet. Men när engagerade och kunniga medarbetare arbetar i team runt den boende på äldreboendet kan det göra underverk för den boende. Delaktiga boende och närstående kan också bidra till kvaliteten i omsorgen.

Erland Olsson är specialistsjuksköterska i psykiatri och egen företagare som tillhandahåller tjänsten som Medicinskt Ansvarig Sjuksköterska samt kvalitetsutveckling i vården, till kommuner och privata vårdgivare såväl genom stöd och handledning som via digitala produkter.

"Till skillnad från en vara där kvalitet finns i produkten, är kvaliteten i äldreomsorgen en färskvara. Den skapas i nuet, i mötet med den boende och närstående.”

Children living with a parent with a mental illness can face difficulties. Parentalmental illness may influence the parents’ ability to cope with family life, where theparents’ awareness of their illness plays an important role. Family interventionsprovided by psychiatric and children’s social care services can be a way to supportthese children, making them feel less burdened, and improving the relationshipswithin the family. The aim of this thesis was to illuminate how children infamilies with a parent with a mental illness are supported in psychiatric and socialservices, especially by means of family interventions, and how families experiencethe support. Study I explored how professionals in adult psychiatric outpatient servicesdeal with children and families when a parent has a mental illness. The findingsshowed that professionals balanced between establishing, and maintaining,a relationship with the patient and fulfilling the legal obligations towards thepatient’s children. Asking the patient about their children could be experiencedas intrusive, and involving the patient’s family in the treatment could be seen asa dilemma, in relation to the patient. Efforts were made to enhance the familyperspective, and when the patient’s family and children joined the treatment thisrequired flexibility from the professional. Study II examined how professionals in children’s social care services experienceworking with children and families when a parent has a mental illness. The socialworkers’ objective was to identify the needs of the children. No specific attentionwas paid to families with parental mental illness; they were supported in thesame way as other families. When the parental mental illness became difficult tohandle both for the parent and the social worker, the latter had to set the child’sneeds aside in order to support the parent. Interagency collaboration seemed likea successful way to support these families, but difficult to achieve. Study III investigated if patients in psychiatric services that are also parentsof underage children, are provided with child-focused interventions or involvedin interagency collaboration between psychiatric and social services and childand adolescent psychiatry. The findings showed that only 12.9% of the patientsregistered as parents in Psykiatri Skåne had registered children under the ageof 18 years. One fourth of these patients had been provided with child-focusedinterventions in psychiatric service, and 13% of them were involved in interagencycollaboration. If a patient received child-focused interventions from the psychiatricservices, the likelihood of being involved in interagency collaboration was fivetimes greater as compared to patients receiving no child-focused intervention.Study IV explored how parents and their underage children who were supportedwith family interventions experienced these interventions. The results showedthat parents experiencing mental illness were eager to find support in explainingto and talking with their children about their mental illness, although the supportfrom the psychiatric service varied. Both children and other family membersappreciated being invited to family interventions. After such an intervention, theyexperienced the atmosphere in the family as less strained and found it easier tocommunicate with each other about difficulties. Unfortunately, the participatingpartners felt that they were left without support specifically targeted at them. The thesis showed that there is a gap between how professionals deal withquestions concerning these families and their support, and the parents’ and thefamilies’ needs to receive support in handling the parental mental illness in thefamily. The psychiatric and social services need to expand their approach andwork with the whole family, in order to meet the needs of the child and otherfamily members involved.

När äldre inte klarar av att bo hemma längre flyttar de ofta till ett vård-och omsorgs-boende, lever den sista tiden där och är i behov av palliativ vård. Palliativ vård är ett förhållningssätt som kännetecknas av en helhetssyn på människan utifrån individens behov. De som arbetar nära den äldre och den närstående är vård- och omsorgsperso-nalen och det är distriktssköterskan som har det övergripande ansvaret för omvårdna-den. Stöd till den närstående är av största vikt inom den palliativa vården. Syftet med studien var att beskriva vård- och omsorgspersonalens erfarenheter av att uppmärk-samma och stödja närstående till den äldre på vård- och omsorgsboende utifrån ett palliativt förhållningssätt. Datainsamlingarna gjordes i två omgångar, en fokusgrupp-sintervju 2017 och genomförda diskussionsgrupper 2010, analyserades med hjälp av kvalitativ innehållsanalys och tolkades med hjälp av Dosseys "Theory of integral nur-sing". I resultatet framkom kategorierna att skapa trygghet för den närstående, önskan att göra den närstående delaktig och att få kunskap om palliativ vård. Kategorierna utmynnade i temat: I ett palliativt förhållningssätt stöds närstående genom att de får känna trygghet och delaktighet. Slutsatsen är att vård- och omsorgspersonalens in-tention är att stödja de närstående men behöver arbeta mer i ett partnerskap med de närstående för att de ska känna en helhet och därmed trygghet och delaktighet.

Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antaläldre personer kan innebära att fler närstående blir involverade i den äldre personenslivssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närståendeär en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närståendekunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närståendestöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närståendeär betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighetoch välbefinnande. Syftet med studien var att undersöka närståendes upplevelserav att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativstudiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördesmed sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende.Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötandeoch en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sigvälkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då desjälva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet.Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktigheti vården på ett vård- och omsorgsboende.

Den svenska offentliga äldreomsorgen växte starkt från 1950-talet, och nådde sin högsta nivå på 1980-talet, för att därefter minska under 2000-talet. Med hjälp av riksrepresentativa befolkningsundersökningar från 1954 och fram till 2009 studerar vi mönster i äldres hjälpbehov och insatser från familj och offentlig omsorg. Ansvarsförhållandet mellan stat och familj har skiftat över tid, men omsorg från anhöriga och det offentliga överlappar allt mer. De offentliga insatserna minskar samtidigt som allt fler på sikt får hjälp, men mindre och senare i livet. Allt fler äldre har anhöriga, som ger mer omsorg.

Background: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated.

Aims: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease.

Design: A qualitative approach with focus group interviews.

Methods: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis.

Results: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'.

Conclusion: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.

Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis.

Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin.

Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped.

Purpose: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

Results: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

Conclusion: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Background: Next of kin participation in care is a cornerstone of palliative care and is thus important in nursing homes, and outcomes following interventions need to be evaluated using robust methods.

Objective: To use within-group and within-individual analytical approaches to evaluate the participation of next of kin in care following an intervention and to compare the outcome between the intervention and control groups.

Methods: A pre-post intervention/control group study design was used. The educational intervention, directed towards staff members, focused on palliative care. The Next of Kin Participation in Care scale comprises the Communication and Trust subscale and the Collaboration in Care subscale, with nine items each. In total, 203 persons (intervention group: n = 95; control group: n = 108) were included. Three different analytical approaches were used: 1) traditional within-group comparison of raw ordinal scores and linearly transformed interval scores; 2) modern within-individual (person-level) interval score comparisons; 3) comparisons between the intervention group and control group based on individual person-level outcomes.

Results: Within-group comparisons of change revealed no change in any of the groups, whether based on raw or transformed scores. Despite this, significant improvements at the individual level were found in 32.9% of the intervention group and 11.6% of the control group for the total scale (p = 0.0024), in 25% of the intervention group and 10.5% of the control group for the Communication and Trust subscale (p = 0.0018), and in 31.2% of the intervention group and 10.5% of the control group for the Collaboration in Care subscale (p = 0.0016). However, a significant worsening at the individual level in Collaboration in Care was found in 35.1% of the intervention group but only among 8.4% of the control group (p < 0.0005).

Conclusion: The intervention seems to have a positive impact on next of kin participation in care in nursing homes, especially for communication and trust. However, some next of kin reported decreased participation in care after the intervention. Modern individual person-level approaches for the analysis of intervention outcomes revealed individual significant changes beyond traditional group-level comparisons that would otherwise be hidden. The findings are relevant for future outcome studies and may also necessitate a re-evaluation of previous studies that have not used individual person-level comparisons.

Antologi

Stora anhörigboken samlar insikter från en bredd av ledande experter inom området anhörigomsorg. Den belyser anhörigas betydelsefulla roll och den belastning de upplever i sina strävanden att tillhanda hålla omsorg, kontinuitet och kärlek när samhällets resurser inte räcker till. Boken lyfter fram riskerna för anhörigas egen hälsa, deras ekonomiska utsatthet och sociala stigmatisering samt den betydande överrepresentationen av kvinnor som vårdare. Genom att belysa vikten av ett mer organiserat samhällsstöd för anhöriga och erkänna deras plats som samhällsbärande grupp, erbjuder boken en djup gående diskussion om en oundviklig aspekt av livet - att vara anhörig.

Stora anhörigboken vänder sig till alla som i sitt nuvarande eller framtida yrke möter personer som är just anhöriga oavsett orsak till anhörigskapet.

Abstract

Abstract

Background: Next of kin to older adults over 65 years in municipal home care are concerned whether their older adults' needs are being met. In municipal home care, the registered nurses' leadership is important and complex, entailing multi-artist skills involving the older adults and their next of kin. Yet, little is known about next of kin's experiences of registered nurses' leadership. Thus, the aim of this study was to explore next of kin's experiences of registered nurses' leadership close to older adults in municipal home care. Methods: Individual telephone interviews were conducted with next of kin (n = 11) of older adults from April to September 2020 in two municipalities in western Sweden. Data were analysed using qualitative content analysis. Results: The results are presented with the theme, registered nurses do what they can, including two categories, interaction and competence, and the subcategories, relationship, communication, availability, responsibility, team leadership and cooperation. Registered nurses' leadership was experienced as a balancing act between their commitments and what they were able to achieve. Conclusions: Next of kin's experiences of registered nurses' leadership can contribute knowledge that will strengthen and prepare registered nurses for their leadership roles. This knowledge can support the development of policies for organisational preconditions that ensure quality and safe care to older adults in municipal home care.

We investigate the importance of adult children and/or cohabitation with a partner for older hip fracture patients' probability of independent living, public home care use and hospital readmission. Data from 35,066 Swedish hip fracture patients between 2012 and 2017, aged 65 years, and living at home at the time of the fracture in the Swedish Registry for Hip Fracture Patients and Treatment were linked with national registers. We applied adjusted logistic regression models and Cox proportional hazard models. In total, 959 (4.0%) women and 817 (7.3%) men had no adult children, 13,384 (56.0%) women and 3,623 (32.5%) men had no cohabiting partner and 2,780 (11.6%) women and 1,389 (12.5%) men neither had a cohabiting partner nor adult children. In comparison with women and men who had both a cohabiting partner and adult children, those without a cohabiting partner (i.e. only adult children) and those who neither had a cohabiting partner nor adult children had significantly lower probabilities of returning home (at discharge and after 4 months). They also had a greater probability of both receiving home care and having an increase in the amount of home care they receive. Having a close next of kin and hospital readmission were not associated. In conclusion, absence of a close next of kin, specifically a cohabiting partner, reduces the chance of return to independent living and increases the use of home care after a hip fracture hospitalisation. The findings highlight the importance of family support for older adults living situation after a hip fracture.

PURPOSE: There is a need to put family caregivers on the cancer survivorship research agenda. Therefore, the aim of this is study is to explore the experiences of being a family caregiver to a patient treated for oesophageal cancer. METHOD: This qualitative study was based on the ongoing nationwide and prospective Oesophageal Surgery on Cancer patients - Adaptation and Recovery study (OSCAR) including patients surgically treated for oesophageal cancer in Sweden and their closest family caregiver. One year after the patient's surgery, each family caregiver received a self-report questionnaire kit to fill in. For the purpose of this study, the responses to the open-ended question "Is there anything else you would like to share?" were used and analysed by conducting thematic analysis.

RESULTS: In total, 112 responses to the open-ended question were transcribed and analysed. The text rendered three themes: Discontinued support from healthcare-mostly a positive experience before surgery and in the acute survivorship phase. However, after discharge from the hospital, the family caregiver felt as though they were left alone, fully responsible for the patient's care. A changed life-unprepared for life-changing situation after the patient received the cancer diagnosis. A feeling that nothing will ever be the same and like your sense of self is lost. Psychological distress-was described as a feeling of being alone. Family caregivers felt invisible and no longer important to family and friends. The patient was the one that mattered.

CONCLUSION: This study indicates that patients and family caregivers would benefit from a more family-centred healthcare, where the patients' as well as the caregivers' perspectives would be acknowledged.

OBJECTIVES: Digital support services may provide informal caregivers with remote access to information and training about care issues. However, there is limited specific data on how factors such as demographics, socioeconomic resources and the caregiving context may influence caregivers' use of digital support services. The aim of this study is to identify associations between informal caregiver's characteristics and the use of the internet to access digital support services in two countries: Italy and Sweden.

SETTING AND PARTICIPANTS: A sample of 663 respondents who have access to the internet participated in a cross-sectional survey by completing the online questionnaire. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre.

PRIMARY AND SECONDARY OUTCOME MEASURES: Logistic regression analyses were performed to assess predictors of caregivers' frequent use of the internet to access digital support services.

RESULTS: Educational attainment (OR 3.649, 95% CI 1.424 to 9.350, p=0.007), hours per week spent caring (OR 2.928, 95% CI 1.481 to 5.791, p=0.002), total household income (OR 0.378, 95% CI 0.149 to 0.957, p=0.040), care recipient relationship to the caregiver (OR 2.895, 95% CI 1.037 to 8.083, p=0.042) and gender of care recipient (OR 0.575, 95% CI 0.356 to 0.928, p=0.023) were significant predictors in the multivariate analysis for the Italian caregivers group. Hours per week spent caring (OR 2.401, 95% CI 1.105 to 5.218, p=0.027) and age of caregiver (OR 2.237, 95% CI 1.150 to 4.352, p=0.018) were significant predictors in the multivariate analysis for the Swedish caregivers group.

CONCLUSIONS: Digital support services could be important tools to empower informal caregivers. When it comes to policy and practice in relation to caregivers, similarly to other broad vulnerable groups, there is no 'one-size-fits-all' approach, and it is therefore important to consider the specific characteristics and needs of both caregivers and care recipients.

BACKGROUND: Informal caregivers to intensive care unit (ICU) survivors may develop post-intensive care syndrome family (PICS-F), including depression, anxiety and post-traumatic stress (PTS). Our primary aim was to investigate associations between caregiver burden in informal caregivers cohabiting with ICU survivors and patients' physical and psychological outcomes.

METHODS: A prospective, multicentre cohort study in four ICUs in Sweden. Adults cohabiting with ICU patients included in a previous study were eligible for inclusion. Three months post-ICU, informal caregivers received questionnaires assessing caregiver burden, health-related quality of life (HRQL) and symptoms of depression, anxiety and PTS. In parallel, patients reported their three-month physical and psychological status via validated questionnaires. The primary outcome of this study was to compare caregiver burden in informal caregivers to patients with and without adverse physical and psychological outcomes 3 months post-ICU. Secondary outcomes were correlations between caregiver burden and informal caregivers' mental HRQL.

RESULTS: Among 62 included informal caregivers, 55 (89%) responded to the follow-up questionnaires. Caregiver burden was higher among informal caregivers to patients with an adverse outcome, compared to informal caregivers to patients without an adverse outcome, caregiver burden scale score mean (±standard deviation) 52 (11) and 41 (13) respectively (p = 0.003). There was strong negative correlation between caregiver burden and informal caregivers' mental HRQL (rs -0.74, p < 0.001).

CONCLUSION: Informal caregivers to ICU survivors with adverse physical or psychological outcome experience a higher caregiver burden. A higher caregiver burden correlates with worse caregiver mental HRQL. ICU follow-up programs should consider screening and follow-up of informal caregivers for mental health problems

BACKGROUND: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults.

AIM: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not.

METHOD: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed-method design to analyse the survey data, including free-text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale.

RESULTS: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities.  CONCLUSION: This paper is unique in exploring the informal peer-caregiver's perceptions of isolation. Data were collected during the COVID-19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis

BACKGROUND: Will being a caregiver further impact the health of a group already at risk of adverse health due to old age? This study aimed to answer the questions whether short- and long-term healthcare consumption and mortality differ between informal caregivers and non-caregivers and between high-burden and low-burden informal caregivers.

METHOD: The study population consisted of 423 caregivers and 3444 controls from the Swedish national general population study 'Good Aging in Skåne'. Caregivers were divided into those reporting high and low caregiver burden and information on caregiver status was collected from questionnaires. Data for mortality and healthcare consumption (inpatient and outpatient visits) were obtained from The National Board of Health and Welfare. Mortality was tested with Cox regression models and healthcare consumption with logistic regression models, adjusted for sociodemographic covariates, Activities of daily living (ADL) and number of chronic diseases.

RESULTS: Caregivers were younger than non-caregivers, had higher educational background, more independent in ADL and more often men. Of 423 caregivers, 73 (17.3%) reported experiencing high caregiver burden. High-burden caregivers were older, more dependent in personal ADL and gave more hours of care than those reporting low burden. In adjusted regression models, we found no differences in either consumption of healthcare nor mortality between caregivers and non-caregivers and high-burden v. low-burden caregivers looking at short-term (1 and 3 years) and long-term (10 and 15 years) follow-up periods.

CONCLUSIONS: Our findings suggest that the characteristic of being a family caregiver does not have an impact on mortality or physical health measured asinpatient admissions or instances of primary care.

Abstract

It is unclear whether caregiving has an impact on the physical, mental and functional health of older caregivers. This study aimed to describe physical, mental and functional health in relation to family caregiving in old age (60+) over a six-year period. The study comprised 2,294 randomly selected individuals (60–96 years) from the Swedish National Study on Aging and Care, who answered the question on whether they were caregivers and who were followed up six years later. The prevalence of family caregivers was 13.1% and the incidence was 12.4%. Four tracks (T) were identified; T1) Family caregiver both at baseline and follow-up (n = 74), T2) Family caregiver at baseline but not at follow-up (n = 226), T3) non-caregiver at baseline but family caregiver at follow-up (n = 218), T4) non-caregiver both at baseline and follow-up (1,776). Only non-caregivers (T4) reported a decline in mental health, p < .036. Worries about health increased significantly in T2 and T4. The prevalence of caregivers was 13.1% with a high turnover. There are differences between family caregivers and non-caregivers in deterioration in physical and mental health as well as physical function over a six-year period.

Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family. 

Abstract Objectives Mental health problems are a major concern in the older population in Sweden, as is the growing number of older adults aging alone in their homes and in need of informal care. Using a linked lives perspective, this study explored if older parents’ mental health is related to their children’s dual burden of informal caregiving and job strain. Methods Data from a nationally representative Swedish survey, SWEOLD, were used. Mental health problems in older age (mean age 88) were measured with self-reported ‘mild’ or ‘severe’ anxiety and depressive symptoms. A primary caregiving adult child was linked to each older parent, and this child’s occupation was matched with a job exposure matrix to assess job strain. Logistic regression analyses were conducted with an analytic sample of 334. Results After adjusting for covariates, caregiving children’s lower job control and greater job strain were each associated with mental health problems in their older parents (OR 2.52, p = 0.008 and OR 2.56, p = 0.044, respectively). No association was found between caregiving children’s job demands and their older parents’ mental health (OR 1.08, p = 0.799). Conclusion In line with the linked lives perspective, results highlight that the work–life balance of informal caregiving adult children may play a role in their older parent’s mental health

Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child’s cancer diagnosis. The aim of the study was to explore mothers’ and fathers’ experiences of balancing the dual roles of work and parenthood following a child’s cancer diagnosis. Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents’ ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child’s illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance.

Background: Children are affected when parents are ill and health care professionals are bound by law to consider children's need for information on their parent's illness. Effective interventions are available in settings other than primary health care, and possibilities seen by GPs and families have been described previously. Most patients in Sweden are treated in primary health care. It is suspected that parental health problems treated in primary care create a challenge and risk for the children. It is unknown how children and parents negotiate this situation and what strategies they use.AimThe overall aim was to conceptualize the situation of ill parents and their children in primary health care, as a contribution towards the long-term goal of developing suitable and sustainable interventions for children as next of kin in primary care.MethodsAnalysis of interviews with 32 parents and 23 of their children in three primary health care clinics using grounded theory method resulted in a conceptualization of (i) how these children view their situation (Study I) and (ii) a theory on the processes and typologies of upholding family relationships from the perspective of their parents (Study III). A systematic review exploring interventions for children of ill parents in all health care settings globally resulted in a full overview of the literature and, via content analysis, a resulting summary of what children and parents find helpful in interventions (Study II). All three studies were analytically integrated in this thesis.ResultsAnalysis of the interviews revealed that children feel burdened and lonely when their parents are ill (paper 1) and wish their parent to reveal (paper 3). Parents are aware that their children know they are ill and wish their parents to reveal, but often feel incapable to do so. A Grounded Theory conceptualizing what it takes to uphold family relationships in a context of increasing awareness of parental illness (paper 3) was developed. Six different awareness contexts are posed (closed, concealed, suspicious, conflicted, mutual pretense and open) and how parents manage, or often fail to manage them, are conceptualized. The theory hypothesizes that to reveal the parent needs to manage their common awareness context about the illness. And to manage their common awareness context the parent must comprehend the illness and the child needs. Parents and children wish primary health care to support the often-needed learning processes. (Study 1 and 3).Thirty-two studies conducted in mental health (n=22), cancer care (n=6) and HIV care (n=4) were analysed in a systematic literature review. The quantitative studies showed a small-to-moderate effect on the health of the child. Systematic content analysis of qualitative results from mental health and cancer care generated new data concerning what both children and parents found useful in interventions (increased knowledge, improved communication, improved coping strategies and better capacity to handle negative feelings) and additional benefits perceived by the parents (observed changes in their children's behaviour, increased understanding of their own child and enjoyment of the child's respite).

Abstract

Abstract [en]

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Denna rapport bygger på avhandlingen Upholding family relationships in a context of increasing awareness of parental illness. Rapporten beskriver en teori som utvecklats baserat på intervjuer med föräldrar och barn. Rapporten innehåller också förslag på vilken roll primärvården kan ta i arbetet med barn som anhöriga, samt handfasta råd till hälso- och sjukvårdspersonal för att stärka kommunikationen mellan sjuka föräldrar och deras barn.

Abstract

Background

With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research.

Methods

We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers.

Results

Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – the time and compromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust.

Conclusions

In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs.Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0.Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression.Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

The EDE is a semistructured interview which has been developed as a measure of the specific psychopathology of anorexia nervosa and bulimia nervosa. To establish its discriminant validity it was administered to 100 patients with anorexia nervosa or bulimia nervosa and to 42 controls. The two groups differed significantly on all items. Five subscales were derived on rational grounds and evaluated on the two populations. The alpha coefficients for each subscale indicated a satisfactory degree of internal consistency. The EDE provides clinicians and research workers with a detailed and comprehensive profile of the psychopathological features of patients with eating disorders.

Purpose: The purpose of this article is to describe the international classification system proposed by the World Health Organisation for describing individuals with disability. Initially the 'International classification of impairment, disability and handicap' (ICIDH) was used. This has been replaced by the 'International classification of functioning, disability and health' (ICF). Both of these systems will be described and followed by a discussion of the advantages and disadvantages of using the WHOs classification framework. An application to the field of severe disability will be made throughout.
Method: Providing a theoretical framework for classification of disability in accordance with the system proposed by the WHO.
Results: The ICF is a useful tool that contributes to uniformity of international terminology and standardization in the disability field. It is not a minority model, and focuses on strengths and skills.
Conclusions: An international classification system such as the ICF offers a conceptual framework for information that is relevant to the long-term consequences of disability. Although any type of classification system has certain limitations, the advantages present within the ICF outweigh the limitations.

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.

Abstract
PROBLEM:
There is a lack of information about the bereavement experiences of adolescents living in poverty in the inner city.
SUBJECTS:
Eight bereaved adolescents (mean age = 13.5 girls, 3 boys), from poverty-level families, attending an inner city junior high school.
METHODS:
A descriptive design, using participant-observation in a semi-structured group setting, data were gathered using audiotape recordings of the eight group discussions.
FINDINGS:
Chaos and stress were major themes pervading each discussion session. Lack of family and social support, fear for their future, and avoidance as the major coping strategy were also themes of the study.
CONCLUSIONS:
Inner city adolescents need to be assessed for loss of significant others. Provision of mental health services in schools could provide intervention services to current and future problems.

In recent years there has been a rapid growth of interest in the sociological study of childhood. This new book draws together the major developments in the field. In particular, the book discusses contemporary sociological and anthropological research in order to develop key links between the study of childhood and social theory, exposing its historical, political and cultural dimensions.

The absence of parents from schools is seen as an important factor related to the significant number of adolescents at risk of school failure. Effective parenting is known to be a key protective factor for adolescents at risk for school failure and other maladaptive developmental outcomes. While evidence-based parent management training models exist, their use has been limited by problems regarding recruitment and retention when services are offered through traditional means. We review the literature on parent involvement in schools, the effectiveness of parent education programs, and mutual aid activities. Logistical barriers to parent participation in parent management training programs and other school-related activities are examined, and a strategy using twenty-first-century technology will be described as a means to increase parent involvement in schools. (Contains 1 table.)

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

While previous literature on brain injury reports high levels of stress and burden in primary caregivers, the impact on children has been overlooked. This paper reports on an in-depth, qualitative research project exploring the experiences of four children living with fathers with an acquired brain injury (ABI). The findings indicate that these children were negatively impacted and at risk of emotional and behavioural difficulties. The children reported a complexity of feelings associated with the trauma and multiple losses, including profound grief, social isolation and fear of family disintegration and violence. Despite the difficulties they faced, the children also demonstrated resilience and reported positive outcomes such as having greater independence. Although only a small pilot study, the current findings highlight the need for both clinicians and researchers to be more proactive in questioning their clients and families about the level of violence following ABI and that disclosure may be more likely to occur with on-going involvement and support. The study concludes that early intervention and systemic support is required to minimize the trauma for these children. Further research is recommended, not only to replicate these findings in a larger sample, but also to explore in-depth children's experience of living with a parent with a brain injury.

I rapporten redovisas kunskap om metoder och modeller för barnhälsovårdens arbete med att förebygga och ge tidiga insatser mot psykisk ohälsa hos barn 0–5 år. Rapporten är baserad på systematiska kunskapsöversikter som är publicerade i internationella vetenskapliga tidskrifter.

Denna rapport presenterar evidens för insatser till barn i förskoleåldern på tidig kommunikativ nivå med syfte att ge rekommendationer till svensk habiliteringsverksamhet. Utifrån en formulerad fiktiv frågeställning utförde gruppen sökningar i vetenskapliga databaser. Några svenska rapporter och magisterarbeten har också inkluderats i granskningen.

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.

Rapport från Allmänna Arvsfonden och FUB: för barn, unga och vuxna med utvecklingsstörning

Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.

Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.

Socialstyrelsen har haft regeringens uppdrag att kartl‰gga p vilket s‰ttlandstingens barn- och ungdomshabilitering ‰r tillg‰nglig fˆr barn och ung-domar i olika Âldrar med olika funktionshinder. Fˆr att skapa underlag fˆrarbetet har enk‰ter riktats till landstingen och till barn/ungdomar med fa-miljer som under fˆrsta halvÂret 2002 hade habiliteringsinsatser. En kvalita-tiv studie som omfattar tio familjer har ocks gjorts. Markˆr AB, ÷rebro haransvarat fˆr insamlingen och sammanst‰llningen av materialet, som finnspublicerat i tv rapporter.UtifrÂn den genomfˆrda enk‰ten till barn/ungdomar med familjer kan So-cialstyrelsen konstatera att mÂnga barn och ungdomar med funktionshinderfÂr en bra habilitering och rehabilitering. MÂnga ‰r nˆjda bÂde med innehÂll,omfattning, bemˆtande, inflytande och mˆjligheter att pÂverka. Men Social-styrelsen kan ocks konstatera att de brister som tidigare studier har visatfortfarande kvarstÂr. TillgÂngen till habilitering/rehabilitering ‰r oj‰mnt fˆr-delad, bÂde mellan olika delar i landet och mellan olika grupper av funk-tionshinder.Sammantaget ˆver landet tas alla grupper av barn/ungdomar med funk-tionshinder emot av landstingen fˆr habilitering, men en grupp som p ettst‰lle har god tillgÂng till habilitering kan i en annan del av landet saknaviktiga insatser. ƒven inom ett och samma landsting fˆrekommer betydandevariationer.TillgÂng till habilitering och rehabilitering. Grupper som vanligen hartillgÂng till habilitering/rehabilitering ‰r barn och ungdomar med utveck-lingsstˆrning, med rˆrelsehinder och med neurologiska skador och sjukdo-mar. Barn/ungdomar med brister i tillgÂng till habilitering ‰r framfˆr allt demed funktionsneds‰ttningar till fˆljd av ADHD, autismliknande tillstÂndoch autism. Barn med flera funktionshinder, medicinska funktionshinderoch vissa kommunikationshinder, t.ex. synskada och talsvÂrigheter, fÂr inteheller sina behov av habilitering/rehabilitering tillr‰ckligt v‰l tillgodosedda.Brist p underlag. Landstingen genomfˆr inga kartl‰ggningar fˆr attkunna redovisa och fˆlja vilka barn/ungdomar som har behov av habilite-ring/rehabilitering, hur mÂnga de ‰r, vilken Âlder de har eller vilka typer avfunktionshinder det ‰r frÂga om och hur behoven ser ut.Landstingen kan inte redovisa vilka resurser som riktas till habilite-ring/rehabilitering fˆr barn och ungdomar, varken i pengar eller personal.Inflytande och mˆjlighet att pÂverka. Den enskildes mˆjligheter att pÂ-verka sin habilitering/rehabilitering ‰r begr‰nsade. S‰rskilt tycks detta g‰llabarn vars fˆr‰ldrar inte ‰r fˆdda i Sverige, har lÂg utbildning och/eller lÂginkomst.Individuell habiliteringsplan. Individuella planer enligt h‰lso- och sjuk-vÂrdslagen anv‰nds s‰llan om man ser till landstingens alla verksamheter. Ifˆrsta hand ‰r det den verksamhet som ben‰mns barn- och ungdomshabilite-ring som arbetar med individuell habiliterings/rehabiliteringsplan.
8Samverkan. Det finns brister i samverkan, bÂde internt inom landstingenoch externt mellan landstingens olika verksamheter och t.ex. skolan.Rutiner fˆr kvalitetsutveckling saknas. MÂnga kliniker saknar doku-menterade rutiner fˆr att samla in information och synpunkter frÂn bar-nen/ungdomarna och deras familjer.Information. Familjerna anser ofta att den information som de fÂr frÂnlandstingen ‰r bristf‰llig.Bemˆtande. MÂnga fˆr‰ldrar upplever att det stˆd de fÂr ‰r otillr‰ckligt.Minst nˆjda med den habilitering de fÂr ‰r familjer d‰r barnet/ungdomen harflera funktionshinder. I undersˆkningen framtr‰der tydligt fˆr‰ldrarnask‰nsla av att sj‰lva tvingas vara drivande fˆr att f det stˆd som de behˆver.Personal. Fortfarande saknas tillgÂng till insatser frÂn flera yrkesgrupperfˆr att habilitering fˆr barn och ungdomar skall fungera v‰l, framfˆr alltlogopeder, men ocks psykologer, l‰kare, kuratorer och sjukgymnaster.Socialstyrelsen anser att habilitering/rehabilitering bˆr f en starkarest‰llning inom h‰lso- och sjukvÂrden.Socialstyrelsen bedˆmer att den lagstiftning som finns ‰r tillr‰cklig underfˆruts‰ttning att den till‰mpas. Socialstyrelsen bedˆmer att ytterligare utred-ning av omrÂdet i nul‰get inte skulle gagna barn och ungdomar med funk-tionshinder.Socialstyrelsen anseratt landstingen fˆr att kunna planera sin h‰lso- ochsjukvÂrd med utgÂngspunkt i befolkningens behov regelbundet bˆr genom-fˆra kartl‰ggning av vilka grupper av barn/ungdomar med funktionshindersom finns och hur deras behov ser ut.Landstingens olika verksamheter bˆr av ledningen ges tydliga uppdragom vilka grupper av funktionshindrade som de har ansvar fˆr.SjukvÂrdshuvudm‰nnen bˆr i forts‰ttningen redovisa vilka insatser somfinns fˆr olika grupper av funktionshinder i en s‰rskild organisationsplan.SjukvÂrdshuvudm‰nnen bˆr dessutom tydligt redovisa vilka resurser i formav pengar och personal som gÂr till habilitering/rehabilitering fˆr barn ochungdomar med funktionshinder.Enligt h‰lso- och sjukvÂrdslagen skall individuella habiliterings- och re-habiliteringsplaner erbjudas barn/ungdomar med funktionshinder och derasfamiljer. Det utvecklingsarbete som pÂgÂr n‰r det g‰ller individuell planenligt h‰lso- och sjukvÂrdslagen behˆver lyftas fram och fˆrst‰rkas.Kvalitetsarbetet bˆr ges en mera framtr‰dande st‰llning inom verksam-heter med ansvar fˆr habilitering/rehabilitering och hj‰lpmedel och huvud-m‰nnen bˆr stˆdja forskning och statistikinsamling inom omrÂdet.SjukvÂrdshuvudm‰nnen bˆr ocks verka fˆr att viktiga begrepp inom ha-bilitering och rehabilitering fˆrankras inom verksamheterna

Tillit ger reaktioner i hjärnan som påverkar känslan och därmed kroppen. Sådan förväntan och tillit har inte blivit medicinskt utforskad. Det har blivit allt svårare att avfärda skildringar av läkande ritualer och magi från andra länder som enbart anekdoter.
Boken vänder sig till medicin- och antropologistuderande och studenter inom vård och omsorg samt alla de som i olika befattningar och roller är verksamma inom vården.

"Att vara anhörig är att få höra an till någon, att vara närstående är
att få stå någon nära. Anhörigskap är för de flesta inte att vara en
resurs, en funktion eller en kategori. Anhörigskap är relation, en
relation till en annan människa som man vill ha i sin närhet och vara
nära." Så börjar inledningen till antologin om det obetalda
omsorgsarbetet.

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Vid sorg och död är den första reaktionen, för många, att skydda sitt barn genom att inte tala om det.Författaren Ann-Kristin Lundmark vill med sin tredje bok i serien om 10-åriga Tina, Tina och mormor, öppna upp för samtal inom ämnet. Sorg kan inte undvikas och ett barn kan inte alltid skyddas, men genom att prata om det som en vägledning kan många frågor besvaras och bidra till en enklare sorgbearbetning.

Tina har en intensiv vår med kompisar, skola och fotbollsträning och hinner inte träffa sin mormor så mycket som vanligt. Tina får lite dåligt samvete. En kväll vaknar hon och behöver gå på toa, men när hon ska gå och lägga sig igen hör hon prat från köket. Tina får veta att mormor är sjuk i cancer och snart ska dö. Efteråt är ingenting riktigt som förut och hela Tinas tillvaro rasar samman!

Väldigt berörande! Ett barn, hans bror, en familj drabbad av cancer så nära beskrivet att det kryper under skinnet på läsaren. Hur jobbigt och oroligt det faktiskt är både i stort och smått i den situation familjen levt med under alla dessa år. Författaren speglar även väldigt väl hur viktigt det är med förtroende och bemötande inom vården. En bok av detta slag bör varje vårdarbetare läsa och lägga de insikter den ger i bakhuvudet för att bättre kunna förstå helhetssituationen för patienten och familjen.Nils Erik Svedlund, barnläkareMaria tar oss med i många års kamp med ett cancersjukt barn och deras vardag. Vi kommer nära förtvivlan, smärta och tristess men också hopp, glädje och en stark syskonrelation. En viktig bok, även för personal och vårdutbildningar!Angelica Lindberg, kuratorSå glad att denna ärliga och viktiga bok finns! Berättelsen gav mig en insikt och förståelse för hur livet kan te sig i en familj med ett cancersjukt barn! När jag läste Titanium var det som om jag själv fanns med i familjens vardag och närhet. Så levande, så äkta, både kärleksfullt och skrämmande. Vilken styrka, vilket tålamod, vilken förmåga att ta vara på det minsta lilla positiva trots det ofattbara som händer under cancerbehandlingen. En mycket varm, närvarande och viktig berättelse om en lång, återkommande kamp mot leukemi i unga år och de konsekvenser det får för alla i familjen. Men också vikten av att tänka på syskonen, att låta dem finnas med och få plats i den vardag som blivit. Titanium är en bok jag varmt vill rekommendera, särskilt till de som arbetar inom vård och skola.Anneli Träff, grundskollärare

Large proportions of people with dementia live at home and need help from a relative. The aim of the current study was to examine how people living with persons with Alzheimer's disease (AD) perceived everyday life aspects of food choices, cooking, and food-related work. The analyses are based on focus group interviews including women and men acting as caregivers to people with AD and living in Sweden. The main results identified from the data, were how cohabitants to persons with AD struggle with either taking on a new role as a food provider or extending it, but also how they tried to cope as carer, which entailed food being an important part of the treatment of the disease. Those expressing greatest concern were those perceiving themselves as inexperienced food providers and carers, which in this study were all men.

The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.

The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.

Abstract
Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention.

Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall.

Design: Qualitative study that used a symbolic interactionism perspective.

Methods: Twenty-two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi-structured interviews between February 2014 - December 2015. Analysis was guided by grounded theory procedures.

Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals.

Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.

In many countries one approach to supporting family-and-friend caregivers is direct financial or monetary support. Debates about the benefits and consequences of such policies pervade the literature. Building on the premise that values underlie public policy, the paper examines four policy paradoxes in the literature and uses selected examples from an international policy analysis to illustrate the underlying objectives and values upon which many of the policies were developed. These include the responsibility to care, economic or social objectives, gender equity, and the autonomy of care receivers. The authors conclude that policy makers need to be cautious about the unintended effects of financial support policy and develop a menu of policies and services to support caregivers. Future policy development in Canada must enable legitimate choice across the life course and ensure that neither the caregiver nor the care receiver will experience short- or long-term financial consequences of his or her choice.

Many family caregivers of frail older adults postpone or decline accessible and affordable services such as respite, despite their acknowledgement of unmet needs for support and time away from the burdens and stress of caregiving. How caregivers perceive their need for services, and the factors that influence their decisions to use or not use services, remain poorly understood. This article reviews the literature on family caregiving and the complex interrelated factors that influence caregivers' choices regarding support services. It organizes these factors into four areas: (a) service characteristics, (b) personal predisposing factors that affect perceived need, (c) experiential coping and decisionmaking patterns, and (d) relational factors. It also examines the implications of this evidence for nursing assessments and interventions with frail older adults and their family caregivers..

Tourette syndrome (TS) affects people of all ages, with onset in early childhood and continuing through the different stages of the life cycle into adolescence and adults. This review focuses on barriers to diagnosis and challenges in the management of young patients with TS. Barriers to identification occur at multiple levels, including detection in the community setting (including schools), parents' help-seeking behavior, and cultural influences on such behavior, as well as diagnosis by the medical provider. Challenges to management include unfamiliarity of primary care providers, inconsistencies in the diagnosis and management plan, and failure to recognize comorbid conditions, as well as inadequate knowledge and lack of resources to effectively deal with comorbidities. In addition to the complexities posed by pharmacological interactions, there are unique psychosocial challenges experienced by young people with TS and their families. Effective communication and collaboration between families, health care providers, and school personnel, as well as supportive communities, are essential components of comprehensive management. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Abstract
OBJECTIVE:
The multiple risk factors for major depression are interrelated through poorly understood developmental pathways. In 2002, the authors presented a developmental model for major depression in women. Based on similar methods, they here present an analogous model for men.
METHOD:
Using data from 2,935 adult male twins, interviewed twice over a 2-4-year period, the authors constructed, by means of structural equation modeling, an integrated etiologic model for major depression that predicts depressive episodes over 1 year from 18 risk factors conceptualized as five developmental "tiers" reflecting childhood, early adolescence, late adolescence, adulthood, and the last year.
RESULTS:
The best-fitting model, including six correlations and 76 paths, provided a good fit to the data, explaining 49% of the variance in the liability to depressive episodes. The overall results, similar to those seen in women, suggest that the development of major depression results from the action and interaction of three broad pathways of internalizing symptoms, externalizing symptoms, and adversity. Childhood parental loss and low self-esteem were more potent variables in the model in men than in women. Genetic risks for major depression had a broader spectrum of action in men than in women. The pathway to major depression through externalizing symptoms was not more prominent in men than in women.
CONCLUSIONS:
Major depression in men, as in women, is an etiologically complex disorder influenced by risk factors from multiple domains that act in developmental time. The similarities in etiologic pathways to major depression for men and women outweigh the modest differences.

The purpose of this article is to examine how the field of mixed methods currently is being defined. The authors asked many of the current leaders in mixed methods research how they define mixed methods research. The authors provide the leaders' definitions and discuss the content found as they searched for the criteria of demarcation. The authors provide a current answer to the question, What is mixed methods research? They also briefly summarize the recent history of mixed methods and list several issues that need additional work as the field continues to advance. They argue that mixed methods research is one of the three major "research paradigms" (quantitative research, qualitative research, and mixed methods research). The authors hope this article will contribute to the ongoing dialogue about how mixed methods research is defined and conceptualized by its practitioners.

The Commission presents a set of guidelines as a framework for the Member States' flexicurity strategies.
The principles of flexicurity contribute to the modernisation of the European social models.
Concept of flexicurity
To be effective, labour market modernisation strategies must take into account the needs of employees and employers alike. The concept of flexicurity is therefore a global approach which favours:
•flexibility of employees, who must be able to adapt to labour market developments and achieve their professional transitions. Similarly, this approach must improve the flexibility of enterprises and work organisation in order to meet the needs of employers and to improve the balance between work and family life;
•security for employees, who must be able to progress in their professional careers, develop their skills and be supported by social security systems when they are not working.
Flexicurity strategies aim to reduce unemployment and poverty rates in the European Union (EU). In particular, they help to facilitate the integration of the most underprivileged groups on the labour market (such as the young, women, older workers and the long-term unemployed).

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.

Sammanfattning
Syftet med denna studie var att undersöka anhörigkonsulenters erfarenheter av arbetet med
anhörigstöd samt upplevelsen av samverkansprocesser med andra aktörer. Studien gjordes med en kvalitativ ansats där empirin samlades in genom sex semistrukturerade intervjuer med
anhörigkonsulenter i olika kommuner i Sverige. Empirin analyserades och sammanställdes genom
en tematisk analys. Vidare analyserades resultatet i relation till studiens teoretiska utgångspunkter
vilka var det salutogena perspektivet och tillhörande känslan av sammanhang [KASAM] samt
strukturella aspekter av samverkan. Resultatet visar att anhörigkonsulenterna upplever anhörigas
behov som varierande utifrån deras skilda situationer. Tre övergripande behov uppfattas av
anhörigkonsulenterna vilka är ett informationsbehov, behov av nya perspektiv och behov av att
sätta sig själv i fokus. Resultatet visar att anhörigkonsulenterna upplever att de arbetar med ett
individuellt utformat stöd för att möta anhörigas stödbehov men att arbetet görs inom vissa
fastställda ramar. Det finns generellt tre insatser som erbjuds anhöriga vilka är individuella samtal,
gruppsamtal och aktiviteter av olika slag. Några kommuner erbjuder även andra insatser vilket
tyder på att stödet till anhöriga varierar mellan olika kommuner. Anhörigkonsulenterna upplever
samverkan som individberoende men som en stor och viktig del av arbetet, dels för att nå ut till
anhöriga, dels för att implementera anhörigperspektivet internt inom kommunerna.

Abstract

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jönköping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors.

Home-based care is expanding, and we need to know more about what kind of support older adults need and how such support should be designed. One way to gain more knowledge is to study the experiences that underlie a nursing home application. However, older adults in need of nursing homes are often too weak to participate in research. Thus, this study aimed to describe the experiences of close relatives of the daily life of older adults in need of a nursing home. A qualitative approach was used, where fifteen relatives of nursing home applicants in central Sweden were interviewed using a study-specific interview guide. The interviews were analysed using thematic analysis. The findings are presented in one main theme "Being the person who manages a fragile life situation" with three underlying themes: Balancing and fulfilling expectations, striving to achieve a status quo, experiencing a breaking point, a change is inevitable, and waiting and moving into a nursing home, a period of tension. The main theme describes how the participants contributed to managing the older adults' life situation and acted as a representative in contacts with health and social care. They tried to offer support in their daily life but over time experienced a breaking point when ageing in place was no longer sustainable, resulting in a nursing home application. The rationale for a nursing home application was often a combination of the older adult's own wishes and the fact that their relatives felt there was a combined need for extensive care and physical proximity to staff, which cannot be provided in ordinary housing. Sometimes the decision to apply was also based on relatives no longer having the capacity to continue managing an older adult's fragile situation.

Abstract
Aims and objectives
The study aim was to explore the use of an Intensive Care Unit (ICU) diary within four different ICUs units in Sweden and thereby contribute to practice guidelines regarding the structure, content and use of an ICU diary.
Background
ICU diaries are used to aid psychological recovery among critical care patients, but differences remain in diary writing both within and across countries. Few studies have focused on the combined views and experiences of ICU patients, family members and nursing staff about the use of ICU diaries.
Design
An instrumental multiple case study design was employed.
Methods
Three focus groups interviews were carried out with 8 former patients and their family members (n = 5) from the research settings. Individual interviews were carried out with 2 patients, a family member and a nurse respectively. Observations, field notes, documentary analysis and conversations with nursing staff were also conducted. Consolidated criteria for reporting qualitative research (COREQ) was followed.
Results
The qualitative findings firstly consisted of a matrix and descriptive text of the four ICU contexts
and current practices. This highlighted that there were similarities regarding the aims and objectives of the diaries. However, differences existed across the case study sites about how the ICU diary was developed and implemented. Namely, the use of photographs and when to commence a diary. Second, a thematic analysis of the qualitative data regarding patients’ and family members’ use of the ICU diary, resulted in four themes: i) the diary was used to take in and fully understand the situation; ii) the diary was an opportunity to assimilate warm, personalised and human care; iii) the diary was used to manage existential issues; and iv) the diary was a tool in daily activities.
Conclusions
Analysis of the instrumental case study data led to the identification of core areas for inclusion in ICU diary practice guidelines. Introduction

Socialstyrelsen har regeringens uppdrag att presentera ett förslag som möjliggör en kontinuerlig nationell uppföljning av anhörigperspektivet inom hälso- och sjukvården och omsorgen samt av det stöd som kommuner och regioner erbjuder anhöriga. Uppdraget handlar om att analysera möjligheterna att inhämta resultat på nationell nivå i syfte att följa anhörigperspektivet och stödet till anhöriga samt att ge förslag på mått anpassade för att kunna följa dessa områden. I denna rapport presenteras förslag på uppföljningsområden hämtade ur den nationella anhörigstrategin samt förslag på mått, nyckeltal och indikatorer.

Denna rapport har tillkommit för att få en förståelse för hur anhörigstöd bedrivs i
Sjuhäradskommunerna och hur anhörigas situation ser ut. Vi har tagit del av både anhörigasoch anhörigkonsulenternas perspektiv för att belysa anhörigfrågan. Studien är finansierad av
FoU Sjuhärad Välfärd som är ett kompetenscentrum för forskning och utveckling inom
kommunernas välfärdsområden. Ägarparter är Högskolan i Borås, Borås Stad samt
kommunerna Bollebygd, Herrljunga, Mark, Svenljunga, Tranemo, Ulricehamn och Vårgårda.
FoU Sjuhärad vill bidra med kunskap som skapar värde för de som bor i Sjuhäradskommunerna och för de som arbetar inom välfärdsområdet. Vår förhoppning är att rapporten
ger ett sådant bidrag men också att kunskapen sprids och är till nytta för policyskapare,
politiker och tjänstemän med intresse för anhörigas situation och anhörigstöd, i andra
kommuner och/eller på andra myndigheter.

Föräldrarkraften är en informativ bok som är oumbärlig för föräldrar till barn med neuropsykiatriska funktionsvariationer. Författaren förklarar olika diagnoser, vad de innebär och vilka problem som är relaterade till dem.Boken är ett stöd för dig som är förälder och som tvivlar på om du som förälder räcker till och gör rätt. Den kommer hjälpa dig förstå varför du handlar och agerar som du gör samt öka förståelsen för ditt barn.Boken innehåller olika fallbeskrivningar där barn och föräldrar kommer till tals och berättar om sina erfarenheter. Du får också råd och verktyg kring hur du som förälder kan agera och tänka för att stödja ditt barn. Nathalie Hult är legitimerad psykolog och har flerårig erfarenhet inom barn- och ungdomspsykiatrin.

Rapport 9 från projektet ”Barn som anhöriga”, CHESS,
Institutionen för Medicin Solna, Karolinska Institutet, Lnu, Nka

Detta är den nionde rapporten i projektet ”Barn som anhöriga”, som genomförs av CHESS och Institutionen för Medicin Solna, Karolinska Institutet, i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa de sociala livsvillkoren avseende ekonomi och familj för barn som växer upp med föräldrar som drabbas av fysisk eller psykisk sjukdom eller har missbruksproblem.

Ulrika Harmsen var strax över 40, hade man och tre barn och arbetade som speciallärare när hon ramlade olyckligt på jobbet. Fallskadan orsakade en hjärntrötthet som inte ville gå över. Läkarna var förbryllade och utredning efter utredning gjordes utan att man förstod vad det var för fel. Under tiden var Ulrika sjukskriven och tvingades inreda ett tyst rum hemma där hon kunde återhämta sig efter aktiviteter som tidigare hört till vardagen, som att åka och handla eller hämta barnen i skolan. Men den 15 april 2020 kom beskedet hon aldrig hade väntat sig att få höra: Du har drabbats av Alzheimers sjukdom.

Allt blev svart den dagen och Ulrika sögs in i ett mörker av depression. Fanns det ens någon mening att leva vidare när hon ändå skulle dö, förr snarare än senare? Och samtidigt hade hon en familj och tre fina döttrar som älskade och behövde henne. För dem ville hon kämpa vidare. Men hur får man tillbaka livsglädjen när man vet att sjukdomen bryter ner en och gradvis gör en sämre för varje dag?

Ulrika Harmsen berättar öppet och ärligt om hur det är att få diagnosen alzheimer i ung ålder, om att tvingas berätta det värsta för sina barn och om att hitta redskap i vardagen för att hantera sjukdomen. Det här är historien om att få en dödsdom, men också om att hitta lusten att leva igen.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

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.

This article examines a comprehensive, residential substance abuse treatment program for women and their children. A majority of the 72 participants studied were African American single mothers, for whom crack/cocaine was the drug of choice. The women and their children were assessed repeatedly during treatment, and at 3, 6, and 12 months postdischarge. Program impact was estimated by comparing the outcomes of three groups that differed in the amount of treatment they received: early dropouts, late dropouts, and treatment graduates. Program graduates showed more positive outcomes than the nongraduate comparison groups in the areas of drug use and negative consequences of use, employment and self-sufficiency, and family interaction skills. Young children enrolled in treatment with their mothers were assessed using a developmental screening test, and older children with a measure of drug refusal skills. Results from both child measures suggest substantial improvement.

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

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

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

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.

This study shows that a home-visiting, relationship-based intervention, as defined in the UCLA Family Development Project, affects certain areas of family functioning by the time an infant reaches 12 months. Within a randomized trial design, we compared two samples of mothers who were identified as at risk for inadequate parenting in the third trimester of pregnancy with their first child. The primary risk characteristics were poverty and a lack of support. Thirty-one of these mothers experienced the intervention and thirty-three did not. Mothers given the opportunity of a positive, trusting, and working relationship with a weekly home visitor as well as a mother–infant group scored significantly higher on measures of their experienced partner and family support. The intervention also made a significant impact on three critical social-emotional mother–infant transactions in the first year of life. Thus, on a variety of indices including the responses to the Ainsworth Strange Situation, the children in the intervention group were more secure and their mothers more responsive to their needs. Children experiencing the intervention were also more autonomous and task oriented and were encouraged in this regard by their mothers. ©1999 Michigan Association for Infant Mental Health.

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

The present study: (1) examined relations between parent psychopathology and adolescent internalizing problems, externalizing problems, and substance use in substance-abusing families; and (2) tested family functioning problems as mediators of these relations. Structural equation modeling was used to estimate the independent effects of parent psychopathology and family functioning problems by parent gender. Participants included 242 parents in treatment for substance abuse and/or dependence and 59 of their coparents (16.9% in treatment for substance-abuse/dependence) from middle income households (SES: M = 4.7; SD = 2.1). Ratings were obtained for 325 adolescents (48% female; 27.8% non-Caucasian) between the ages of 10 and 18 years (M = 13.5 years; SD = 2.5 years). Parent psychopathology, family functioning problems, and adolescent problems were assessed with parent and coparent ratings on the Symptom Checklist (SCL-90)/Brief Symptom Inventory (BSI), the Family Relationship Measure, and the Child Behavior Checklist, respectively. Results indicated that maternal psychopathology was directly related to adolescent internalizing problems and substance use, but maternal perceptions of family functioning problems failed to mediate relations between maternal psychopathology and adolescent problems. By contrast, paternal perceptions of family functioning problems uniquely mediated relations between paternal psychopathology and adolescent externalizing problems. Findings underscore the importance of examining how mothers and fathers may differentially impact adolescent problems in substance-abusing families.

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

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

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.

Dunér A. Motives, experiences and strategies of next of kin helping older relatives in the Swedish welfare context: a qualitative study

Int J Soc Welfare 2010: 19: 54–62 © 2008 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare.

Next of kin provide the major part of the help given to older people in Sweden, a country where the official goals of formal eldercare are universality and extensive coverage. This qualitative interview study investigates the thoughts and actions of next of kin who provide informal help to older relatives who also receive formal help from the municipal eldercare. Informal help-giving, in the context of Swedish social policy, was connected with a multiplicity of motives, experiences and strategies. The motives for help-giving were moral considerations, emotional attachment and 'out of necessity'. The experiences of next of kin support the idea of ambivalence as a significant feature of informal help-giving. Different strategies were employed, both active and passive in nature, to manage their situation. The study points out the importance of outlining working forms and methods of collaboration for older persons and their informal and formal networks to lessen the ambivalence experienced by help-giving next of kin.

Next of kin provide the major part of the help given to older people in Sweden, a country where the official goals of formal eldercare are universality and extensive coverage. This qualitative interview study investigates the thoughts and actions of next of kin who provide informal help to older relatives who also receive formal help from the municipal eldercare. Informal help-giving, in the context of Swedish social policy, was connected with a multiplicity of motives, experiences and strategies. The motives for help-giving were moral considerations, emotional attachment and 'out of necessity'. The experiences of next of kin support the idea of ambivalence as a significant feature of informal help-giving. Different strategies were employed, both active and passive in nature, to manage their situation. The study points out the importance of outlining working forms and methods of collaboration for older persons and their informal and formal networks to lessen the ambivalence experienced by help-giving next of kin.

In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the "non-directive approach". Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer's disease and other related Dementias who, due to the stigma and misunderstanding surrounding Dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with Dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, the purpose of this paper is to present an alternative approach, one that views persons with Dementia as equal partners in the context of Dementia care, support and formal services.

Adolescent substance abuse rarely occurs without other psychiatric and developmental problems, but it is often treated and researched as if it can be isolated from comorbid conditions. Few comprehensive interventions are available that effectively address the range of co-occurring problems associated with adolescent substance abuse. This article reviews the clinical interventions and research evidence supporting the use of Multidimensional Family Therapy (MDFT) for adolescents with substance abuse and co-occurring problems. MDFT is uniquely suited to address adolescent substance abuse and related disorders given its comprehensive interventions that systematically target the multiple interacting risk factors underlying many developmental disruptions of adolescence.

The present study examined whether Snoezelen and Stimulus Preference environments have differential effects on disruptive and pro-social behaviors in adults with profound mental retardation and autism. In N=27 adults these target behaviors were recorded for a total of 20 sessions using both multi-sensory rooms. Three comparison groups were created by diagnosis and motor respective linguistic abilities. Each client was exposed to only one multi-sensory room. Results showed that Snoezelen intervention decreased disruptive behaviors only in individuals with autism, while Stimulus Preference increased pro-social behaviors only in participants with profound mental retardation with co-occurring poor motor and linguistic abilities. Furthermore, several trend analyses of the improved behaviors were conducted throughout all sessions toward short and mid term effects of the multi-sensory room applications. These findings support both the prudence of using the Snoezelen room in individuals with developmental disabilities and the importance of using a Stimulus Preference assessment in multi-sensory environments in clients with profound mental retardation.

Qualitative investigations have indicated that music therapy groups may be beneficial for bereaved teenagers. The existing relationship between young people and music serves as a platform for connectedness and emotional expression that is utilised within a therapeutic, support group format. This investigation confirms this suggestion through grounded theory analysis of focus group interviews. Changes in self-perception were not found as a result of participation, however practically significant results were found on adolescent coping. These cannot be generalized because of the small sample size. Grief specific tools are recommended for use in future investigations in order to capture the emotional impact of music therapy grief work with adolescents.

Det här är en bok om och hennes familj. My-Elins mamma är också som mammor är mest: snäll, glad och litet tjatig. Men ibland blir mamma jättetrött. Hon har en sjukdom som kallas MS. Den gör att armar och ben inte gör som hon vill. Ibland ser hon konstiga saker och ibland glömmer hon. Sjukdomen gör att allt inte går som planerat i My-Elins familj.

Death of a sibling represents a stressful life event and could be a potential trigger of myocardial infarction (MI). We studied the association between loss of an adult sibling and mortality from MI up to 18 years after bereavement.
We conducted a follow-up study for Swedes aged 40 to 69 years between 1981 and 2002, based on register data covering the total population (N=1 617 010). Sibling deaths could be observed from 1981 and on. An increased mortality rate from MI was found among women (1.25 CI 1.02 to 1.54) and men (1.15 CI 1.03 to 1.28) who had experienced death of an adult sibling. An elevated rate some years after bereavement was found among both women (during the fourth to sixth half-years after the death) and men (during the second to sixth half-years after the death), whereas limited support for a short-term elevation in the rate was found (during the first few months since bereavement). External causes of sibling death were associated with increased MI mortality among women (1.54 CI 1.07 to 2.22), whereas nonexternal causes showed associations in men (1.23 CI 1.09 to 1.38). However, further analyses showed that if the sibling also died from MI, associations were primarily found among both women (1.62 CI 1.00 to 2.61) and men (1.98 CI 1.59 to 2.48).
Our study provided the first large-scale evidence for mortality from MI associated with the death of a sibling at an adult age. The fact that findings suggested associations primarily between concordant causes of death (both died of MI) could indicate genetic resemblance or shared risk factors during childhood. Future studies on bereavement should carefully deal with the possibility of residual confounding.

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.

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/

LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.

LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.

Kom igång med tecken! Det är aldrig för sent! Möjligheter med tecken för ungdomar och vuxna är boken som inspirerar, engagerar och berättar om fördelarna med tecken. Vardagsnära reportage varvas med fakta och kloka ord från personer som dagligen använder tecken i sin kommunikation. Bokens författare Maria Krafft Helgesson är musikterapeut och handledare i AKK och har många års erfarenhet av arbete med kommunikation och tecken.

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009). År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig. I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

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

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

Socialt arbete. En grundbok. A. Meeuwisse, S. Sunesson and H. Swärd

Hur många människor i Sverige använder narkotika och hur ser deras livssituation ut? Dessa två frågor har legat till grund för sju olika studier vars resultat redovisas i den här rapporten. Resultaten från flera av studierna kan forma ett nytt underlag för att underlätta framtida inriktningar och policybeslut. Rapporten visar bland annat oroväckande narkotikavanor hos yngre personer och tydliga könsskillnader i narkotikavanorna i vissa grupper, ofta förknippad med olika levnadsvillkor för män och kvinnor. En uppdelning via preparat i de flesta av undersökningarna har gett mycket värdefull information om olika substansers genomslag i samhället, och bland vilka grupper.

This book is the first practical manual describing a new and successful short-term treatment for traumatic stress and PTSD called Narrative Exposure Therapy (NET). The manual provides both experienced clinicians and trainees with all the knowledge and skills needed to treat trauma survivors using this approach, which is especially useful in crisis regions where longer-term interventions are not possible. NET has been field tested in post-war societies such as Kosovo, Sri Lanka, Uganda, and Somaliland. Its effectiveness was demonstrated in controlled trials in Uganda and Germany. Single case studies have also been reported for adults and children. Three to six sessions can be sufficient to afford considerable relief. Part I of this manual describes the theoretical background. Part II covers the therapeutic approach in detail, with practical advice and tools. Part III then focuses on special issues such as dealing with challenging moments during therapy, defense mechanisms for the therapist, and ethical issues.

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.

Administered the revision of the Children's Manifest Anxiety Scale (RCMAS) to 4,972 6–19 yr olds from 13 states representing all geographic regions of the US. Norms are reported for White males, White females, Black males, and Black females separately at each age level for the total anxiety scale, 3 subscales of anxiety, and a lie scale. MANOVA demonstrated performance on the RCMAS to be a complex function of these factors. Reliability was satisfactory for all groups except Black females below the age of 12 yrs. (17 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Contributors

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

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

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

Vad vet vi om personer med psykisk funktionsnedsättning? Hur ser deras liv
ut? Får de stöd och omsorg utifrån sina behov? Har de en fungerande boendesituation?
Känner de till sina rättigheter? Och framför allt har de fått det
bättre 17 år efter psykiatrireformen?
På uppdrag av regeringen har Socialstyrelsen genomfört en nationell tillsyn
av kommunernas insatser till personer med psykisk funktionsnedsättning
för åren 2009–2011. Under tillsynsperioden 2009–2011 har totalt 178
kommuner granskats. Den 1 januari år 2010 övertog Socialstyrelsen ansvaret
för tillsynen över socialtjänsten från länsstyrelserna, men villkoren för
uppdraget under åren 2010 och 2011 var desamma som tidigare.
Den nationella tillsynen under åren 2009–2011 har huvudsakligen haft två
inriktningar. Den ena inriktningen avsåg tillsyn av socialtjänsten. Den andra
inriktningen handlade om kommuner och landsting ingått överenskommelser
om samarbete samt om kommuner och landsting upprättat individuella
planer.
Socialstyrelsen har genom tillsynen uppmärksammat ett antal brister som
sammantaget visar att kommun och landsting inte uppfyller de krav och
intentioner som anges i lagar, förordningar och föreskrifter. De nya lagbestämmelserna
som infördes i socialtjänstlagen, SoL, och i hälso- och sjukvårdslagen,
HSL, har inte fått genomslag i kommuner och landsting. De nya
bestämmelserna gäller dels, krav på att kommuner och landsting ska ingå en
överenskommelse om samarbete, dels att kommuner och landsting tillsammans
ska upprätta en individuell plan när en person behöver insatser både
från hälso- och sjukvården och från socialtjänsten och om den enskilde samtycker
till att den upprättas.
Socialstyrelsen konstaterar att:
 Målet med att skapa bostäder i enlighet med målgruppens behov är inte
uppfyllda i alla kommuner.
 Arbetet med att ingå överenskommelser om samarbete mellan kommuner
och landsting behöver förstärkas för att tydliggöra ett gemensamt ansvar
för vård- och stödinsatser för målgruppen.
 Rättssäkerheten i handläggning och dokumentation behöver förstärkas
väsentligt.

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.

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

God vård och omsorg

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

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

Uppföljningsområden och indikatorer

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

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

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

Nationella öppna jämförelser och utvärderingar

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

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

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
3
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.

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).

Socialstyrelsen har fått i uppdrag av regeringen att långsiktigt säkerställa
verksamhet i form av ett nationellt kompetenscentrum för anhörigstöd samt
ett nationellt kompetenscentrum inom demensområdet.
Nationellt kompetenscentrum Anhöriga (NkA) och Svenskt Demenscentrum
(SDC), som inrättades 2008, har sedan starten bedrivit sin verksamhet
utifrån ettåriga regeringsuppdrag. Socialstyrelsen ansvarar för ett flertal
andra nationella centrumbildningar med olika karaktär och förvaltning. I
jämförelsesyfte har erfarenheterna från två andra centrumbildningar sammanställts.
De är Nationellt Kunskapscenter för dövblindfrågor (NKCdb) och
Nationella funktionen för sällsynta diagnoser (NFSD), vilka båda har ett
uppdrag av likartad karaktär som NkA och SDC. Förvaltningen av NKCdb
och NFSD bygger på upphandling.
Erfarenheterna visar att upphandling av nationell kompetenscentrumverksamhet,
medför påtagliga svårigheter. Det främsta skälet är att det saknas
konkurrerande anbudsgivare. Därmed blir inte upphandling ett verktyg för att
driva fram bästa möjliga kvalitet. Ett vanligt ska- krav vid upphandling, är att
anbudsgivaren ska ha erfarenhet av motsvarande verksamhet, något som
oftast inte finns. Eftersom det heller inte handlar om konkurrens om pris, dvs.
ersättning för att driva verksamheten, faller också denna anbudsskiljande
faktor bort. Det är Socialstyrelsens erfarenhet att upphandling är en resurskrävande
uppgift, både för Socialstyrelsen och anbudsgivare, till ringa
nytta.
En verksamhet som har ettårig finansiering har svårt att utvecklas långsiktigt.
Både NkA och SDC med sina utvidgade uppdrag kan svårligen leva upp
till uppdragen på en sådan osäker ekonomisk grund. NkA och SDC har under
de åtta år de funnits, byggt upp mycket omfattande nätverk av kontaker,
något som skulle raseras om en annan aktör fick uppdraget.
Mot denna bakgrund, bedömer Socialstyrelsen, för att långsiktigt säkerställa
verksamheten, att Nationellt kompetenscentrum Anhöriga (NkA) och
Svenskt Demenscentrum (SDC) bör få en treårig statsbidragsfinansiering.
Socialstyrelsen ska följa upp och utvärdera att verksamheterna bedrivs i
enlighet med uppdragen. Socialstyrelsen anser att en utvecklad uppföljning
och utvärdering kan vara ett sätt att kvalitetssäkra verksamheterna. Därför
har Socialstyrelsen tagit fram ett förslag på hur en årlig uppföljning av
verksamheterna skulle kunna genomföras. Genom uppföljning och utvärdering
av verksamheterna får Socialdepartementet och regeringen en fortlö-
pande information om verksamheternas resultat.

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

Detta nationella kunskapsstöd ska stödja vårdgivarna att utveckla den palliativa vården, underlätta uppföljning och kvalitetssäkring samt tillgodose en likvärdig vård för patienterna. Socialstyrelsens kunskapsstöd och det nationella vårdprogrammet för palliativ vård, som tagits fram av professionen själv, kompletterar varandra och kan tillsammans utgöra en gemensam grund för ett gott omhändertagande av personer i livets slutskede.

De primära målgrupperna för kunskapsstödet är beslutsfattare inom hälso- och sjukvården och socialtjänsten, såsom politiker, chefstjänstemän och verksamhetschefer. En annan viktig målgrupp är professionen.

Kunskapsstödet fokuserar på palliativ vård i livets slutskede.

En gemensam uppfattning om vårdens innehåll underlättar samordning

En god palliativ vård utgår från de fyra hörnstenarna symtomlindring, multiprofessionellt samarbete, kommunikation och relation samt stöd till närstående. Vården ska omfatta alla, oavsett ålder och diagnos.

För att underlätta planering, ansvarsfördelning och samordning mellan olika aktörer behöver hälso- och sjukvården och socialtjänsten utforma sin palliativa vård och omsorg efter de fyra hörnstenarna och ha en gemensam utgångspunkt i processen för god palliativ vård.

Det har också betydelse att hälso- och sjukvården och socialtjänsten använder termer och definitioner om palliativ vård på ett konsekvent och systematiskt sätt. Det är en förutsättning för förbättrad informationsöverföring och dokumentation, och därmed för en säker vård för patienten. För att underlätta detta arbete har Socialstyrelsen har tagit fram ett antal termer och definitioner om palliativ vård i livets slutskede.

En anpassad palliativ vård

Den palliativa vården i livets slutskede behöver vidgas till att omfatta fler diagnoser än cancer, som den palliativa vården traditionellt har utgått från, och integreras i vården av kroniska sjukdomar. Det är angeläget för att bland annat kunna möta de äldres behov. Symtomlindring, självbestämmande, delaktighet och det sociala nätverket är väsentliga delar för livskvaliteten och för en god vård i livets slutskede.

Barn som får palliativ vård behöver, precis som vuxna, vårdas utifrån sina individuella behov. Det är angeläget att personal inom vård och omsorg som ger palliativ vård till barn har kunskap om och kompetens i att kommunicera med barn.

Samordning krävs på alla nivåer

Samordning är en grundläggande förutsättning för en god palliativ vård. Hälso- och sjukvården och socialtjänsten ska samordna sina olika insatser så att vården och omsorgen blir av god kvalitet för den enskilda patienten.

Svårt sjuka personer är ofta särskilt beroende av god kontinuitet i vård och omsorg. Vid livshotande tillstånd ska en fast vårdkontakt utses och den fasta vårdkontakten ska vara legitimerad läkare. Inom kommunal hälso- och sjukvård där det inte finns läkare ska den medicinskt ansvariga sjuksköterskan se till att det finns rutiner för att läkare eller annan hälso- och sjukvårdspersonal kontaktas när en patients tillstånd fordrar det.

Hälso- och sjukvården ska också ge information och samråda med patienten om olika behandlingsalternativ. Det har betydelse att informationen anpassas efter personens förmåga att ta till sig det som sägs.

Närstående har rätt att få stöd

Socialtjänsten ska erbjuda stöd till personer som vårdar eller stöder en närstående som är långvarigt sjuk, äldre eller har en funktionsnedsättning. När det gäller barn som har en svårt sjuk och döende förälder ska hälso- och sjukvården uppmärksamma barnets behov av information och stöd.

Det är viktigt att hälso- och sjukvården och socialtjänsten tar ställning till hur ett stöd till närstående bör utformas.

Etiska frågor är centrala i palliativ vård

Vård i livets slutskede kräver ofta etiska överväganden. Det är därför angeläget att vård- och omsorgspersonal får kunskap om etiska principer, förhållningssätt och bemötande, och får möjlighet att samtala om etiska frågor.

Rekommendationer om specifika åtgärder

Socialstyrelsens rekommendationer för palliativ vård i livets slutskede omfattar cirka 30 rekommendationer om specifika åtgärder. Rekommendationerna har tagits fram enligt processen för nationella riktlinjer och fokuserar på symtomlindring och kommunikation.

Socialstyrelsens rekommendationer avser att bidra till att hälso- och sjukvårdens och socialtjänstens resurser används effektivt, fördelas efter behov samt styrs av systematiska och öppna prioriteringsbeslut. Rekommendationerna ska främst ge vägledning för beslut på gruppnivå.

Några rekommendationer har Socialstyrelsen bedömt som särskilt centrala ur ett styr- och ledningsperspektiv. Det gäller exempelvis rekommendationerna om att hälso- och sjukvården och socialtjänsten bör erbjuda

fortbildning och handledning i palliativ vård till personal inom vård och omsorg, i syfte att lindra symtom och främja livskvalitet hos patienter i livets slutskede
regelbunden analys och skattning av smärta hos patienter som har smärta i livets slutskede samt strukturerade bedömningar av patientens symtom, i syfte att ge patienten en så adekvat symtomlindring som möjligt
samtal med patienter om vårdens innehåll och riktning i livets slutskede, i syfte att förebygga oro och missförstånd samt förbättra livskvaliteten hos personer i livets slutskede.
Rekommendationerna och bedömningarna kan få konsekvenser för vården och omsorgen

Socialstyrelsen uppskattar att bedömningarna och rekommendationerna i kunskapsstödet kan få betydande organisatoriska och ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom tillgången till palliativ vård i dag är liten i jämförelse med behovet. Dessutom är den ojämnt fördelad över landet.

När det gäller konsekvenser för rekommendationer om specifika åtgärder bedömer Socialstyrelsen att rekommendationerna om fortbildning och handledning av personal som ger palliativ vård kan få betydande ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom de gäller en så stor grupp. Kostnadsökningen är dock svår att beräkna eftersom det beror på hur många som deltar och hur omfattande fortbildningen och handledningen är.

Rekommendationerna om smärtanalys och regelbunden smärtskattning samt regelbunden användning av symtomskattningsinstrument kan leda till ökade kostnader på kort sikt. Kostnaderna gäller då främst utbildning av personal, anpassning av symtomskattningsinstrument till lokala förhållanden och utveckling av rutiner för användning och dokumentation.

Rekommendationen om att erbjuda samtal med patienter om vårdens innehåll och riktning i livets slutskede kan leda till en kostnadsbesparing för hälso- och sjukvården. Tidsåtgången för samtalen i sig leder endast till marginellt ökade kostnader.

Indikatorer och datakällor

Socialstyrelsen har tagit fram förslag på sex indikatorer och tre utvecklingsindikatorer som ska kunna spegla kvaliteten i den palliativa vården. Indikatorerna ska kunna användas som underlag för uppföljning och utveckling av verksamheter samt för öppen redovisning av hälso- och sjukvårdens och socialtjänstens strukturer, processer, resultat och kostnader.

Ett stort problem för uppföljningen av den palliativa vården är att det i dag saknas datakällor. Det visar bland annat Socialstyrelsens kartläggning av information om personers sista tid i livet från sex olika nationella kvalitetsregister.

Socialstyrelsens bedömning är att de nationella registren kan förbättras, både när det gäller generell information om de avlidna och när det gäller specifikt information om palliativ vård. Till exempel saknas ofta information om var personer avlider, och särskilda palliativa vårdinsatser redovisas i mycket liten utsträckning i registren. En bidragande orsak kan vara att klassifikationen av vårdåtgärder (KVÅ) för närvarande inte medger någon noggrannare beskrivning av vad som görs.

HabQ är ett samarbete mellan föreningen Sveriges habiliteringschefer och flertalet regioner/landsting samt Hälsouniversitetet - Avdelningen för fysioterapi i Linköping.

Om tillsyn på natten för äldre personer med hemtjänst. Projektet "Nattfrid" handlade om att erbjuda äldre personer i eget boende tillsyn på natten med hjälp av en webbkamera istället för eller som ett komplement till tillsyn genom personligt besök. Under perioden september 2011 till och med oktober 2012 genomfördes projektet i tre kommuner, Göteborg, Järfälla och Varberg. 23 personer fick tillsyn på natten via webbkamera. Rapporten innehåller en utvärdering av projektet. FoU-enheterna FoU i Väst/GR och FOU har undersökt de äldre personernas, anhörigas och nattpersonalens upplevelser av tillsyn via webbkamera. De har också gjort en kostnadsmässig jämförelse mellan de båda formerna av tillsyn.

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.

OBJECTIVES: This qualitative study aimed to illuminate former family caregivers'
experiences of aspects that facilitate and hinder the process of relinquishing
the care of a person with dementia to a nursing home.
METHOD: Ten narrative interviews with former family caregivers were performed and
subjected to qualitative content analysis.
RESULTS: An overall theme showed that family caregivers were remaining connected
to the person with dementia despite separation. They experienced being 'caught by
surprise' when the placement occurred. Negative expectations of dementia care
made the separation more difficult. Lacking adequate information increased
feelings of insecurity. Despite these hurdles, family caregivers found meaning in
the new situation as they felt that they could remain connected to their loved
one. Being recognized as partners in care of the person with dementia after
placement was a facilitating aspect. Family caregivers regarded a
well-functioning interaction with staff and a supportive social network as
reassuring since they facilitated staying in touch.
CONCLUSION: Knowledge of the relinquishing process and adequate information about
dementia and its progression may help family caregivers better prepare for and
adapt to the situation. Family caregivers need to be recognized as partners in
care and a welcoming nursing home environment is of utmost importance.

Knowledge from previous studies pertaining to state behavior of individuals with profound and multiple disabilities and its relation to other environmental and physiological variables was replicated and extended. Behavior state and environmental data were collected over a 5-hour period for most of 66 students with profound disabilities from 21 educational settings. Results showed general consistency in state patterns and profile groupings with previous investigations, a strong relation between different state profiles and measures of development, and consistency of state patterns across CA levels. Transitional probabilities and z scores were used to confirm changes in state behavior of half of the subjects following primarily adult interactions. Results were discussed in relation to theoretical implications and intervention recommendations.

Abstract
BACKGROUND:
Two forms of alcoholism with distinct clinical features and mode of inheritance were first distinguished in the Stockholm Adoption Study. This involved a large sample of children born in Stockholm, Sweden, who were adopted at an early age and reared by nonrelatives. Type 1 alcoholism had adult onset and rapid progression of dependence without criminality, whereas type 2 had teenage onset of recurrent social and legal problems from alcohol abuse.
METHODS:
A replication study was carried out with 577 men and 660 women born in Gothenburg, Sweden, and adopted at an early age/by nonrelatives. The genetic and environmental backgrounds of the adoptees were classified by the exact procedures calibrated by discriminant analysis in the original study.
RESULTS:
Both type 2 and severe type 1 alcoholism were confirmed as independently heritable forms of alcoholism in male adoptees. The lifetime risk of severe alcoholism was increased 4-fold in adopted men with both genetic and environmental risk factors characteristic of type 1 alcoholism compared with the others (11.4% vs 3.0%). Neither genetic nor environmental risk factors for type 1 alcoholism by themselves were sufficient to cause alcoholism. In contrast, the risk of type 2 alcoholism was increased 6-fold in adopted sons with a type 2 genetic background compared with others; regardless of their postnatal environment (10.7% vs 2.0%). The sons with a type 2 genetic background in the replication sample had no excess of type 1 alcoholism, and vice versa. There was no increased risk of mild abuse in adopted men regardless of their genetic or environmental background.
CONCLUSION:
Type 1 and type 2 alcoholism are clinically distinct forms of alcoholism with causes that are independent but not mutually exclusive.

The eagerly anticipated Fourth Edition of the title that pioneered the comparison of qualitative, quantitative, and mixed methods research design is here! For all three approaches, Creswell includes a preliminary consideration of philosophical assumptions, a review of the literature, an assessment of the use of theory in research approaches, and refl ections about the importance of writing and ethics in scholarly inquiry. He also presents the key elements of the research process, giving specifi c attention to each approach. The Fourth Edition includes extensively revised mixed methods coverage, increased coverage of ethical issues in research, and an expanded emphasis on worldview perspectives.

Abstract
PURPOSE:
To review issues related to the use of augmentative systems with young children and present a case study of one child and family's experience with the System for Augmenting Language (SAL).
METHOD:
The case involved a preschool child with severe developmental delays who had little functional speech. Acquisition and use of graphic symbols on a speech-output communication device was studied in home and clinical settings. Language and communication behaviours of the child and his communication partners were observed and language assessment measures were collected.
RESULTS:
Child engagement state varied across the two settings with a stable profile seen in the therapy setting and a clear increase at home. Child communicative attempts increased following the introduction of the augmented system. Parents reported successful use of the SAL.
CONCLUSION:
SAL is a viable communication intervention approach for young children.

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

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.

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.

Abstract
This study examined environmental stress, family, and child variables that differentiate resilient children and adolescents from those with mental health problems following the death of a primary caregiver. The community-based sample included 179 bereaved children ages 8 to 16 years and their surviving caregivers who completed a test battery of measures before participating in a prevention program. Forty-four percent of bereaved children were classified as resilient and 56% as affected based on the absence of clinically significant mental health problems on at least 1 measure as reported by either the child, surviving caregiver, or teacher on standardized measures of mental health problems. Results of multivariate analyses indicated that bereaved resilient versus affected status was a function of both family and child variables. Higher levels of caregiver warmth and discipline and lower levels of caregiver mental health problems were family-level variables that significantly differentiated resilient children from affected children. Bereaved children's perceptions of less threat in response to negative events and greater personal efficacy in coping with stress were child-level variables that differentiated resilient from affected status. Family and child variables were entered into a discriminant function analysis that correctly classified 72% of the sample. The findings are consistent with a model of resilience in which multilevel variables account for children's positive adaptation following exposure to adversity.

The effects of cognitive capacity, perceived parenting, traumatic events, and activity, which were " rst measured in the midst of the political violence of the Intifada in 1993, were examined on post-traumatic stress disorder (PTSD), emotional disorders, school performance, and neuroticism three years later in more peaceful conditions among 86 Palestinian children of 14.04 ± 0.79 years of age. The results showed, " rst, that PTSD was high among the children who had been exposed to a high level of traumatic events and had responded passively (not actively) to Intifada violence. Discrepant perceived parenting was also decisive for adjustment: Children who perceived their mothers as highly loving and caring but their fathers as not so showed a high level of PTSD. High intellectual but low creative performance was also characteristic of the children suffering from emotional disorders. Second, the hypothesis that cognitive capacity and activity serve a resiliency function if children feel loved and nonrejected at home was confirmed. Third, neuroticism decreased significantly over the three years, especially among the children who had been exposed to a high number of traumatic events.

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)

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.

This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses' grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory.

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.

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

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

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

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

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

The Satisfaction With Life Scale (SWLS) was developed to assess satisfaction with the respondent's life as a whole. The scale does not assess satisfaction with life domains such as health or finances but allows Ss to integrate and weight these domains in whatever way they choose. Normative data are presented for the scale, which shows good convergent validity with other scales and with other types of assessments of subjective well-being. Life satisfaction as assessed by the SWLS shows a degree of temporal stability (e.g., .54 for 4 yrs), yet the SWLS has shown sufficient sensitivity to be potentially valuable to detect change in life satisfaction during the course of clinical intervention. Further, the scale shows discriminant validity from emotional well-being measures. The SWLS is recommended as a complement to scales that focus on psychopathology or emotional well-being because it assesses an individual's conscious evaluative judgment of his or her life by using the person's own criteria.

Antal registreringar och täckningsgrad
• Under 2014 rapporterades 7 981 vårdtillfällen för TIA, något fler än 2013. Under 2014
registrerades TIA i Riksstroke vid 62 av landets 72 akutsjukhus, tre sjukhus fler än 2013.
• Utifrån antalet registrerade TIA i Riksstroke kan totala antalet TIA i Sverige under 2014
uppskattas till cirka 10 000.
Demografi, riskfaktorer, vårdform och vårdtider
• Något fler män än kvinnor insjuknade i TIA. Medelåldern är 73 år, cirka tre år lägre än för stroke.
• TIA-patienterna var ofta tungt belastade av riskfaktorer och hade relativt hög beräknad risk att
insjukna i stroke (medelvärdet i ABCD2-score var 4,2 på en sjugradig skala). Noterbart är också
att 20 % av patienterna hade förmaksflimmer och att 11 % var rökare.
• Av alla patienter som registrerades utreddes och vårdades 96 % inneliggande.
Medianvårdtiden var tre dagar.
• Av TIA-patienterna kom 48 % till sjukhus inom tre timmar och 57 % kom in med ambulans.
Diagnostik
• Så gott som alla patienter undersöktes med datortomografi, medan 10 % undersöktes med en
magnetresonanstomografi (MR) av hjärnan.
• Kärlundersökning med ultraljud, DT-angiografi eller MR-angiografi genomfördes hos 70 % av
patienterna. Ultraljud var den vanligaste metoden, även om det varierade mellan sjukhusen.
Långtidsregistrering av EKG för att upptäcka hjärtrytmstörningar genomfördes hos 59 % av
patienterna under det akuta vårdtillfället, och för ytterligare 9 % planerades undersökningen
efter vårdtillfället. Variationerna avseende i praxis mellan sjukhusen var stora.
Sekundärprevention
• Av de TIA-patienter som hade förmaksflimmer behandlades 77 % med perorala antikoagulantia,
en påtaglig ökning jämfört med tidigare år. Andelarna som fick sådan behandling varierade
geografiskt. Andelen som behandlades med någon av de nya orala antikoagulantia var 38 %,
en tydlig ökning.
• Blodtryckssänkande läkemedel gavs till 69 % av patienterna och statiner till 74 %, men med
påtagliga variationer i praxis utefter geografi.
• Den absoluta merparten av rökarna (81 %) rapporterades ha fått råd om rökstopp och 79 %
av de med körkort rapporterades ha fått råd om sin bilkörning. Uppgifter om rökstopp eller
bilkörning saknades i vart fjärde till vart femte fall.
• Bland TIA-patienterna var ett återbesök vid en sjukhusmottagning eller i primärvården
planerat för 91 %.
PRELIMINÄR
12
1.2 BAKGRUND
Transitoriska ischemiska attacker (TIA) beror på övergående proppbil

I rapporten beskrivs resultaten från en litteraturstudie om riktade psykosociala
insatser till gravida och småbarnsföräldrar (med barn upp till 3 år) som har ett
så kallat problematiskt bruk av alkohol och/eller narkotika. Ovanstående grupper
är viktiga att uppmärksamma, dels för den inverkan det problematiska bruket
kan ha på föräldrarana själva, men framförallt på grund av de negativa effekter
detta kan få för föräldra-barnrelationen samt barnets psykiska hälsa och utveckling.
Syftet med litteraturstiden har varit att identifiera, sammanfatta och värdera
den internationella interventionsforskningen på området. Via sökningar i databaser
återfanns 53 relevanta primärstudier. Av dessa undersökte 27 studier interventioner
riktade till gravida, 14 studier fokuserade på insatser till småbarnsföräldrar,
medan 12 studier beskrev effekter av interventioner som påbörjats
under graviditet och avslutats en tid efter barnets födelse.
Sammantaget undersökte dessa studier ett flertal olika typer av interventioner.
Till de interventioner som studerades mest frekvent hörde bland annat hembesök,
behandlingsinsatser samordnade med mödravård samt insatser fokuserade
på föräldraträning/föräldraförmågor.
De aktuella studiernas sammanvägda resultat pekar dock mot att det råder
stor osäkerhet kring de olika insatstypernas effekter. Avsaknaden av enhetligt
vetenskapligt stöd innebär dock inte att stöd saknas helt; snarare drar de olika
studierna skilda slutsatser kring respektive insats. Därtill är många av studierna
alltför metodologiskt svaga för att det ska vara möjligt att uttala sig om effekter,
samt i vilken utsträckning dessa eventuellt kan vara bestående. En slutsats som
kan dras är därmed att det behövs fler experimentella studier med längre uppföljningstider
på området.
Ur ett svenskt perspektiv är det även angeläget med studier genomförda i en
svensk/nordisk kontext, då skillnaderna mellan länderna avseende tillgång till
mödra- och barnhälsovård begränsar möjligheterna att överföra resultat från
exempelvis amerikanska studier till svenska förhållanden.

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

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.

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

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

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

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

IMS har börjat utarbeta studiehandledningar till sina forskningsöversikter.
Det främsta skälet är att underlätta för beslutsfattare och professionella inom
socialtjänsten att tillgodogöra sig innehållet i översikterna, som inte är helt
lättillgängligt. Ett annat skäl är att en studiehandledning kan ge stöd till gemensamma
diskussioner, kanske i studiecirkelform, vilket i sin tur kan leda
till att man i ökad utsträckning arbetar för en gemensam professionell kunskapsbas.

Forskningsöversikter är ett sätt att sammanställa och väga samman resultaten
från ett stort antal vetenskapliga studier, för att med större säkerhet
kunna ge svar på olika frågeställningar. Det handlar om kunskaper av relevans
antingen för utrednings- och bedömningsarbete eller för behandlingsoch
förbättringsarbete. Det vanligaste syftet med översikter är att visa på
nyttan eller effekterna för brukarna av olika insatser. I dessa fall ger översikten
svar på frågorna: Vad fungerar? Vad fungerar inte? Vad vet vi för lite
om?
Den forskningsöversikt som denna handledning är knuten till är Risk och
prognos i socialt arbete med barn. Forskningsmetoder och resultat, (Gothia
förlag, Stockholm 2003). Författarna, Dagmar Lagerberg och Claes Sundelin,
är båda välkända barnforskare.
Risk och prognos är en mycket omfattande sammanställning av internationell
forskning om barns utveckling. Den handlar om grundprinciper för
vad risker och prognoser är men redovisar även empiriskt material om riskoch
skyddsfaktorer. Översikten är i högsta grad relevant för bedömningsoch
utredningsarbetet inom barn- och ungdomsvården.
Studiehandledningen riktar sig främst till socialtjänstens personal. Tanken
är att den kan utgöra en bas för studier i cirkelform för gemensam kompetensutveckling
i en arbetsgrupp. Självfallet kan handledningen även användas
för egenstudier.
Studiehandledningen har utarbetats av socionom Birgitta Freij, på uppdrag
av IMS. En referensgrupp har lämnat värdefulla synpunkter.
Jag vill å IMS vägnar tacka Birgitta Freij för hennes goda arbete. Tack
också till referensgruppen som har bestått av Birgitta Forsberg, länsstyrelsen
i Uppsala, Jan Ludvigsson, BUP i Fritsla och Heléne Nellvik, socialförvaltningen
i Sigtuna, samt till Dagmar Lagerberg, Akademiska barnsjukhuset
vid Uppsala universitet, Bo Vinnerljung, Ulla Jergeby och Margareta Carlberg,
IMS, Lena Johansson, familjecentralerna i Märsta, Sigtuna kommun
och Ingela Kalin, socialtjänsten i Svenljunga, som i olika faser har medverkat
med synpunkter. Jag vill också tacka Synnöve Ljunggren och Mari Forslund,
båda IMS, som har bearbetat studiehandledningen.
4
Att producera studiehandledningar till forskningsrapporter är ett av flera
sätt som IMS prövar för att nå ut med kunskap till den sociala praktiken. Vi
är därför tacksamma för synpunkter från användarna. Synpunkter kan lämnas
till mari.forslund@socialstyrelsen.se. Studiehandledningen kan laddas
ned från: www.socialstyrelsen.se/IMS

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

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

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

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

Aims and objectives. Describe next-of-kin's conceptions of medical technology in palliative homecare. Background. Next-of-kin to palliative patients are in an exposed position with increasing responsibility. The more involved they are in the care, the greater caregiver burden they describe. Medical technology has become increasingly common in palliative homecare, and previous research suggests that the devices transform the homes to a hospital ward, thus shifting responsibility from the personnel to the next-of-kin. Design. An explorative descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Method. Interviews with 15 next-of-kin to patients in palliative homecare were analysed in a seven-step process where 10 conceptions emerged in five description categories. Results. Medical technology in palliative homecare required next-of-kin's responsibility in monitoring or providing practical help. It also implied uncertainty among the next-of-kin because of worries about its safety or because of an improper handling. The technology trespassed on daily life because it restricted and affected the private sphere. Medical technology enabled comfort as it implied security and was a prerequisite for the patient to be cared for at home. It also required an adjustment to comprehend and manage the medical technology. Conclusions. Medical technology resulted in an increased caregiver burden and uncertainty among the next-of-kin. Although it meant restrictions and affected their social life, they had great confidence in its possibilities. Relevance to clinical practice. It is important to limit the amount of personnel and materials in the home to avoid trespassing on the family's daily life. Medical personnel also have to be sensitive to what next-of-kin have the strength to do and not use them as informal caregivers.

Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper I­III) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.

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.

It is a challenge for registered nurses (RNs) to meet children and young people who have a parent diagnosed with cancer. These children often suffer from shock, anxiety, outrage, fear and stress. Recent studies indicate that when next of kin have a professional person to talk to, their wellbeing increases. Moreover, when these children are involved in their parent's care they also begin to trust the nurse caring for their parent. However, there is little known of how nurses respond to a child's needs. Thus, aim of this study was to describe RNs' experiences of encounters with children as next of kin to a parent diagnosed with cancer. A qualitative descriptive study based on semi-structured group interviews, with a latent content analysis was carried out. One theme, 'sense of security' including three categories 'balanced meeting', 'de-dramatize healthcare' and 'learn from one another' was identified. Beyond the categories, there are six sub-categories: 'sense of insecurity', 'caring approach', 'providing information', 'participation', 'processing and follow-up' and 'increased knowledge'. The findings of this study highlight the importance of strengthening the RN's ability to create a caring relationship with children as next of kin.

Utgångspunkten för denna rapport är ett uppdrag regeringen givit Statens
folkhälsoinstitut till att samla in, analysera och sprida kunskap om hur för-
äldrastöd av olika slag kan utformas för att göra verklig nytta.
Stöd till föräldrar kan både inriktas på föräldrarnas och på barnens
behov. Det som kommer föräldrarna till del gynnar ofta barnen, men detta
är inte givet. Mot denna bakgrund diskuteras i första hand insatser som är
inriktade på att tillgodose barns behov.

Sammanfattning
De var en lycklig familj med två barn i det vackraste landet Sverige. När det tredje barnet föddes förändrades allt. Det lilla barnet fick sin diagnos och familjen började kämpa med den nya situationen. Långsamt började familjen falla samman. Fotografen Anna Clarén har använt sin kamera som ett verktyg för dokumentation, men också som terapi och tröst. Resultatet är en djupgående och överväldigande berättelse om en familj och om autism som inte lämnar någon oberörd. Boken är en intim och djupt personlig fotografisk dokumentation av en familj i ett skede när livet plötsligt och fullständigt förändras

Vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Det skriver Christen Erlingsson, lektor vid Linnéuniversitetet.

Att vara anhörigvårdare kan innebära stor börda, oro och stress. Dessa upplevelser anses vara konsekvenser av situationen runt omkring anhörigvårdaren, den sjuke familjemedlemmens diagnos, och tillgång till eller brist på samhällsresurser och stöd. En fråga är om denna tunga börda och stress kan leda till att övergrepp mot den sjuke begås. Det finns relativt lite forskning kring övergrepp mot äldre om man jämför med forskning inom andra former av familjevåld såsom kvinnofridsbrott och övergrepp mot barn. Vad gäller anhörigvårdandet och övergrepp har forskare endast kvalificerade gissningar att mellan 5–23 procent av anhörigvårdare begår övergrepp mot den de vårdar.

I USA genomfördes för några år sedan en forskningssammanställning med slutsatsen att det inte fanns något entydigt stöd för att konstatera ett samband mellan att vara anhörigvårdare och ökad risk för att övergrepp begås. En anledning till denna slutsats var att det är så få anmälda övergreppsfall jämfört med det stora antalet äldre som vårdas i hemmet av familj eller släktningar. Man kan spegla detta mot att många professionella vårdare, frivilliga och andra berörda personer uppfattar att anhörigvårdandet utan tvekan innebär en ökad risk för övergrepp. De menar att utifrån egna erfarenheter och sunt förnuft förstår man att de påfrestande situationer som skapas i anhörigvårdande situationer, till exempel där den sjuke lider av Alzheimers eller annan demenssjukdom, kan bli så pass provocerande att risken för övergrepp ökar. Till bilden hör att uppemot en femtedel av tillfrågade anhörigvårdare uppger att de fruktar att de en dag kommer att begå övergrepp mot den de vårdar.

En tredje infallsvinkel är att den övervägande majoriteten av anhörigvårdare aldrig begår övergrepp. Det finns anhörigvårdare som upplever positiv hälsa och tillfredsställelse med vårdandet där övergrepp inte förekommer trots påfrestande situationer. Andra anhörigvårdare däremot, som befinner sig i likartade situationer, upplever ohälsa, ökande frustration och som till slut hamnar i situationer där de begår övergrepp mot den sjuke. Man måste fråga sig; vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Ett möjligt svar på dessa frågor upptäcktes överraskande nog under arbetet med en kunskapsöversikt om anhörigvårdares hälsa. Kunskapsöversikten, som togs fram av Nationellt kompetenscentrum Anhöriga, är en sammanställning av svenska forskningsrapporter med syftet att beskriva äldre anhörigvårdares hälsa i samband med att vårda en sjuk familjemedlem.

De allra viktigaste faktorerna som påverkar anhörigvårdarens hälsa, visade sig vara de egna föreställningarna om vårdandet samt upplevelsen av ömsesidighet i de personliga relationerna med den sjuke, andra familjemedlemmar och med stödpersonal. Kunskapsöversiktens resultat visade att ingångsläget för de flesta anhörigvårdare kan beskrivas som att successivt glida in i vårdandet. Under denna fas finns behov av att ständigt justera sitt eget liv. De sociala kontakterna försvinner alltmer och anhörigvårdaren lever ett krympande liv, blir mer och mer isolerad i en föränderlig situation präglad av oro och osäkerhet. Att oroa sig blir en del av vardagen. Anhörigvårdaren bär med sig grundläggande föreställningar om vårdandet, som till exempel "jag behövs", "det är min moraliska plikt att vårda och återgälda den hjälp jag tidigare fått" och "makarna är en enhet och bör stödja varandra". Resultatet visade att det verkar finnas två grupper med anhörigvårdare; en som upplever hälsa och en grupp som upplever ohälsa i form av ökande stress och utmattning.

Bland de anhörigvårdare som upplever hälsa, fanns ömsesidighet i de personliga relationerna och upplevelsen av att vara sedd i sin roll som anhörigvårdare och uppleva mening i vårdandet. Dessa anhörigvårdare bar med sig föreställningar som till exempel, "man får ta det som det kommer", "sjukdom är en del av livet och livet innebär ständig anpassning", "det finns andra än jag som också är anhörigvårdare", "det är viktigt att vara tillsammans med familjen och vänner", och "äkta vänner kommer att vara kvar och acceptera förändringarna". Vad gäller risken för att hamna i övergreppssituationer, är det den andra gruppen anhörigvårdare som är mest i blickfånget, det vill säga de som upplever ohälsa. Här saknas känslan av ömsesidighet i personliga relationer. Anhörigvårdaren kan istället uppleva personalens bemötande som respektlöst och känna sig nonchalerad och förbisedd. Dessa anhörigvårdare bär med sig en mängd föreställningar som till exempel "jag måste ständigt finnas till hands", "min sjuka anhörigas behov kommer i första hand och mina egna behov kommer i andra hand", "jag måste ordna mitt liv kring min anhöriges behov och visa ständig omtänksamhet", "om jag behöver hjälp blir det andra familjemedlemmar eller vänner som kommer att hjälpa mig", " barnen, grannar eller vänner får inte belastas", "barnen måste få leva sina egna liv", "ingen kan ersätta mig", och "ingen kan hjälpa mig i denna situation."

Sådana föreställningar binder fast anhörigvårdaren i en situation som innebär ständigt ökande oro, stress, och börda. Anhörigvårdaren kan till och med känna sig som fången i det egna hemmet men ändå välja att inte anförtro sig åt andra eller själv söka stöd eller hjälp. Anhörigvårdaren sörjer ett förlorat liv, kan känna sig ensam, isolerad, otrygg, oduglig och börja betvivla sin egen kompetens att vårda. Anhörigvårdarens situation präglas också av brist på livsglädje och känslor som skuld och maktlöshet, ökande hopplöshet och konstant ångest. Pressen att själv tillgodose alla den sjukes behov tillsammans med kraven på sig själv att ständigt vara närvarande leder till att anhörigvårdaren aldrig får tillräcklig med sömn och håller på att bli utmattad. Anhörigvårdaren upplever en övermäktig börda och obalans, och är på väg att tappa kontrollen och tippa över i utbrändhet.

Till bilden hör en ökande frustration där anhörigvårdaren har svårt att hålla tillbaka irritation. Nu finns en påtaglig risk att det går över gränsen och kan sluta i övergrepp mot den sjuke familjemedlemmen. Denna ödesdigra nedåtgående spiral kanske känns igen av många. Det är viktigt att erkänna den styrande roll som föreställningarna spelar för upplevelser och hantering av sitt anhörigvårdande. Nästa fråga vi behöver svara på gäller hur stödpersonal i samhället, och vi som står anhörigvårdaren närmast, kan nå fram till de anhörigvårdare som mest behöver hjälp och stöd. Det verkar som att de anhörigvårdare som har störst behov också är de som har minst tro på att hjälp finns. Kunskapsöversiktens resultat pekar på att en bra startpunkt vore att komma underfund med vilka föreställningar som anhörigvårdaren tar med sig in i vårdandesituationen. Oftast är vi inte ens medvetna om våra egna föreställningar eller hur dessa påverkar oss. Ett sätt är att erbjuda anhörigvårdaren och dennes familj att delta i hälsostödjande samtal. En modell för sådana samtal har utvecklats på Linnéuniversitetet i Kalmar som en del av familjefokuserad omvårdnad. Tillsammans med samtalsledare diskuterar familjer sina inneboende styrkor och resurser, föreställningar som antingen kan underlätta eller hindra att hälsan bibehålls, och om att skapa mening i den egna livssituationen.

Ännu viktigare är att samtal utgör ett stöd för att avtäcka hindrande föreställningar och på så sätt förebygga, så att vårdandet inte slutar i övergrepp. Kunskapsöversiktens resultat pekar på ett svar varför en anhörigvårdare kan begå övergrepp mot någon så nära som en familjemedlem. Men länken mellan anhörigvårdandet och övergrepp har än idag ingen fullständig förklaring och fortsatt forskning behövs. Det är extremt viktigt att vi som finns runt omkring känner igen och förstår anhörigvårdarens situation, utan att fördöma men med viljan att bryta anhörigvårdarens isolering, samt kunna erbjuda stöd. Som en mycket klok anhörigstödjare uttryckte det, "Det måste inte vara så märkvärdigt, utan man sätter sig helt enkelt ner och diskuterar tillsammans; varför blev det så här?"

Fokus på anhöriga, nr 14

Sammanfattning
Att få ett barn med funktionsnedsättning vänder upp och ned på tillvaron. När Sophie Dow får dottern Annie anar hon direkt att något inte är som det ska men det kommer att ta sexton år innan familjen till slut får ett fullödigt svar på gåtan. Under tiden lever familjen ett utmanande, utmattande men alldeles underbart liv tillsammans. Sophie Dows kamp för sin dotters rättigheter leder till grundandet av Mindroom, en organisation som framgångsrikt jobbar för barn och ungdomar med inlärningssvårigheter. När livet inte följer manus är ett inspirerande, personligt detektivdrama, där Sophie Dow med humor, glöd och oväntat stöd från såväl en Hollywoodregissör som brittiska kungahuset söker svar på frågan: Varför är inte alla hjärnor lika mycket värda?

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.

Max är fundersam. Det är något som blivit annorlunda med hans mamma. Hon är trött, rösten är ledsen och kojan får vara kvar i vardagsrummet i flera veckor. Pappa säger att mamma är sjuk men Max kan inte se något som är fel. Med en annorlunda mamma vill Max inte att kompisarna ska följa med hem. Vad skulle de säga om de såg att hans mamma sov mitt på dagen? Eller hörde den ledsna rösten? I samtal med skolans sjuksköterska får Max förståelse för att det är mammas tankar som blivit mörka och som gör att hon inte mår bra. När mammas tankar ändrade färg skildrar ur barnets perspektiv hur det kan vara när en förälder är deprimerad. Det är den andra boken av Sara Galli och Mats Molid i deras barnboksserie om barn i svåra livssituationer. Den första boken Får hundar korvar i himlen? tilldelades Statens Kulturråds Litteraturstöd.

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

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.

Depression är en av våra stora folksjukdomar. Man räknar med att omkring en tredjedel av alla har en depression någon gång under sitt liv. Vem som helst kan drabbas, ung, gammal, frisk eller sjuk. Den som är utvilad efter semestern eller den som är trött och sliten av ett påfrestande arbete. Ofta finner man ingen förklarande orsak, utan depressionen bara kom. Bara en tredjedel av de som drabbas söker hjälp. Symptomen kan vara svåra att känna igen. Här i boken ges en bild av hur en depression kan se ut för andra i den deprimerades omgivning. Om det går att upptäcka symptomen lite fortare, så kan fler söka läkare för diagnos och hjälp. Boken visar också hur man som medmänniska hjälper den som drabbats, hur man kan förebygga depressioner och återfall i nya depressioner, samt hur man kan mildra förloppet. Boken vänder sig både till den som är eller har varit deprimerad och till alla vars anhörig, vän eller arbetskamrat drabbats av en depression.

Omsorgens skiftningar. Begreppet, vardagen, politiken, forskningen. R. Eliasson

Abstract
PURPOSE:
To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.
METHOD:
Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.
RESULTS:
The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
CONCLUSION:
Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
Copyright © 2014 Elsevier Ltd. All rights reserved.

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

This study investigated sibling relationships of children with autism compared to children with Down syndrome and siblings of normally developing children. Ninety siblings (30 per group) between the ages of 8 and 18 participated in this study. Results indicated that sibling relationships in families of children with autism were characterized by less intimacy, prosocial behavior, and nurturance than those of the two comparison groups. Both siblings of children with autism and siblings of children with Down syndrome reported greater admiration of their sibling and less quarreling and competition in their relationships relative to normally developing comparison children

Omsorg som ges av anhöriga och närstående är omfattande i alla åldrar och regioner i Sverige, men allra mest bland personer i gruppen 45-64 år, då denna omfattar tre av tio personer. Det finns tecken på att omsorg ökar generellt, men omfattningen beror delvis på hur frågorna ställs: från cirka 10 till väl över 20 procent av befolkningen ger omsorg, beroende på hur man definierar vård och omsorg. Omkring 7 procent ger mer omfattande och in¬tensiv omsorg, med dagliga insatser och med inslag av personlig omvårdnad.

Den exakta nivån för omsorgen är svår att fastställa, men den är i varje fall hög och väl i nivå med den informella omsorgen i andra länder. Intensiteten - tidsinsatsen - är dock möjligen mindre än i t.ex. Spanien. En viktig skillnad är också att nordisk omsorg mest sker mellan hushåll, den kontinentalsydeuropeiska mer inom hushållen.

En stor men ingalunda total del av omsorgen riktar sig till äldre personer. Intressant är att även äldre ofta är omsorgsgivare, för partner och andra. Omsorgsgivandet förefaller vara något mer jämställt i Sverige än på kontinenten, dvs. svenska män är omsorgsgivare nästan lika ofta som kvinnor, om än inte lika intensivt, och partneromsorg är ganska jämställd i Sverige. Anhörigomsorg tycks i Sverige vara klasslös, dvs. ungefär lika vanlig i alla samhällsskikt.

Arbete och omsorg låter sig ofta förenas, både för män och för kvinnor. Orsaken är troligen att omsorgsgivande är vanligast i åldrar då många av andra skäl "trappat ned" förvärvsarbetet och att omsorgen mer sällan är omfattande, daglig och "tung" - för de flesta.

Konsekvenser för arbetslivet får omsorgen ibland, men i stort sett endast när det handlar om omsorg för partner, föräldrar eller vuxna barn. Totalt är cirka var femte yrkesverksam också omsorgsgivare. Dessa tycks inte generellt ha sämre hälsa än de som inte har ett sådant åtagande. Om något gäller det motsatta, dvs. att omsorgsgivare har bättre hälsa än de som inte är omsorgsgivare. I en mindre grupp som vårdar partner eller annan nära anhörig kan dock hälsoproblem förekomma.

Anhörigomsorg i Sverige och offentlig omsorg, främst hemtjänst, överlappar ofta varandra. Detta gäller särskilt hjälp till ensamboende äldre, en stor mottagargrupp. Många anhöriga klarar på egen hand sitt åtagande, men åtskilliga uttrycker också behov av offentligt stöd. Sådant stöd måste troligen ta sig olika former å ena sidan för dem som hjälper någon de bor tillsammans med och å andra sidan för dem - majoriteten - som hjälper någon i ett annat hushåll. Där är sannolikt en utbyggd och välfungerande hemtjänst och annan öppen omsorg ofta en lämplig stödform.

Mer än en miljon svenskar är i dag omsorgsgivare för närstående. En del av den ökning man iakttagit beror troligen på ökande behov, men avspeglar nog också allmänt växande sociala nätverk: fler anhöriga betyder mer omsorgsgivande. Till en del kan ökande anhörigomsorg nog också härledas till att den offentliga omsorgen krympt i relation till hjälpbehoven i befolkningen.

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.

Socialstyrelsens och Statens folkhälsoinstituts rapport ger en aktuell och översiktlig bild av hälsoutvecklingen och dess bestämningsfaktorer. Den visar bland annat att bland kvinnor och män 35-44 år har risken att få stroke ökat med 21 respektive 15 procent sedan 1995

Nationellt kompetenscentrum anhöriga, Nka, har fått i uppdrag av Socialdepartementet
att utveckla ett nationellt kunskapsstöd till föräldrar och anhöriga till barn och ungdomar med flerfunktionsnedsättningar. Syftet med kunskapsstödet är att underlätta kunskapsinhämtning, erfarenhetsutbyte och nätverkskontakter för anhöriga

För de allra flesta händer det inte. Men varje år mister fler än 3 000 barn och ungdomar en förälder eller ett syskon. Då är det viktigt att ha bra kompisar. Men hur ska en bra kompis vara när något så svårt händer? Finns det saker man helst inte ska göra eller säga? Törs man fråga om dödsfallet? Kan man vara precis som vanligt och skratta och skoja? I den här boken får du träffa några barn och ungdomar som förlorat en nära anhörig. Hur var deras kompisar då? Vad var bra och vad var kanske inte lika bra? Du får också träffa några kompisar.

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.

Vid habiliteringen i Alingsås har man arbetat med syskongrupper
sedan 1997. På olika sätt hade man då fått upp ögonen för
syskonens behov, dels genom alltmer ökande förfrågningar från
föräldrar om syskongrupper dels genom personalens egen
ökande kunskap och erfarenhet av syskon.

ADHD – uppmärksamhetsstörningar och impulsivitet/hyperaktivitet (attention deficit hyperactivity disorder) – bedöms vara ett av de mest studerade tillstånden inom medicinen. Man har beräknat att ungefär tre till sex procent av alla barn i skolåldern har ADHD. Det är ca två till tre gånger vanligare med ADHD hos pojkar än flickor. Huvudsymtomen vid ADHD är uppmärksamhetsstörning, impulsivitet och hyperaktivitet/överaktivitet. Barn med ADHD har svårt att vänta, att kontrollera känslor och humör. Många har ett oförutsägbart beteende. Flertalet har problem med att planera
och organisera sin tillvaro – har brister i vad som kallas hjärnans exekutiva funktioner. En betydande andel barn med ADHD har svårigheter i samspelet med andra. De kan ha svårt att finna meningsfulla fritidsaktiviteter. Det är mycket vanligt att barn och ungdomar med ADHD är ängsliga, osäkra och saknar tilltro till sin förmåga. Många misslyckanden ökar risken för uppgivenhet, oro och depression.

Vårdtiden blir kortare om patienter med affektiv sjukdom och deras närstående erbjuds utbildning. Det visar resultat av en undersökning vid Affektivt centrum i Norra Stockholms psykiatri, S:t Göran, vid jämförelse av vårdkonsumtion hos patienter före och efter deltagande i ett utbildningsprogram.

Deltagarnas subjektiva tillfredsställelse med utbildningen var hög. Många i såväl patient- som närståendegruppen uppgav att de kunde använda kunskaper från utbildningen till att hantera sjukdomen.

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

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

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
2
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.
3
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.

Människans liv kantas av psykiska kriser. En del utlösta av plötsliga och oväntade, svåra händelser; andra hör det normala livet till. Krisen är ofta en förutsättning för utveckling och mognad, men den kan också leda till livslång psykisk invaliditet om inte den drabbade får sakkunnig hjälp

Det är trettio år sedan den första utgåvan av Johan Cullbergs klassiska bok Kris och utveckling kom 1975. Den har lästs och uppskattats av hundratusentals svenskar - såväl av studenter som av människor som själva befinner sig i kris eller kommer i kontakt med människor i krislägen. Den har också översatts till flera andra språk.

Mycket i samhället, liksom inom psykiatrin, har förändrats. Det har inneburit att en omarbetning av boken känts angelägen, även om grundstrukturen står kvar. Kvar står också den hoppfulla synen på krisen som en hävstång för den mänskliga utvecklingen. Boken har kompletterats med ett avsnitt om katastrofpsykiatri och sena stressreaktioner av docent Tom Lundin.

Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.

Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.

Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.

Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.

Äldreforskning

Syftet med kunskapsunderlaget är att göra information om barn och elever med medfödda skador av alkohol lättillgänglig för pedagoger, men det kan även användas av andra, som möter barn och elever med medfödda skador av alkohol

De allmänna råden riktar sig till både kommunen och den personal som arbetar på fritidshemmet och illustrerar hur ansvarsfördelningen mellan kommun och verksamhet ser ut. Det är Skolverkets förhoppning att dessa allmänna råd med kommentarer kommer att ligga till grund för diskussioner om hur verksamheten kan bedrivas och att de ska ge ett gott stöd för att utveckla verksamheten.

De befintliga allmänna råden kan tillämpas till dess att de nya allmänna råden har beslutats.

Nationellt kompetenscentrum anhöriga, Nka, har tagit fram rapporten "Kvalitet i äldreomsorg ur ett anhörigperspektiv" på uppdrag från Socialdepartementet. Rapporten ingår i den nationella kvalitetsplanen för äldreomsorgen.
I rapporten framgår det tydligt att trygghet är själva förutsättningen för att kunna skapa bästa och mesta möjliga välbefinnande för anhöriga och äldre närstående. Andra viktiga byggstenar är tillhörighet, delaktighet och betydelsefullhet. Det finns också ett behov av kompetensutveckling – både i verksamheterna och hos de anhöriga. I kunskapssammanställningen framgår också att anhöriga och äldre närstående tenderar att bemötas och behandlas olika beroende på den utbildning, arbete och social position personen har. Detsamma gäller kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder. Rapporten tar upp en rad åtgärder för att utveckla kvaliteten i vården och omsorgen för äldre ur ett anhörigperspektiv.

Rapporten sammanställer aktuell kunskap om de äldres boende, både ordinärt (det vill säga att bo "hemma") och särskilt boende. Syftet är också att beskriva faktorer som leder till flyttning respektive kvarboende på äldre dagar

Den så kallade kvarboendeprincipen, att samhället ska möjliggöra för den enskilde att kunna bo kvar i sitt eget hem, har varit den officiella policyn i decennier. Äldre personers faktiska möjlighet att bo kvar påverkas av en mängd faktorer som hälsa, familjeförhållanden, ekonomi samt bostädernas tillgänglighet för dem med funktionsnedsättning

Rapport i Socialt arbete 130. Doktorsavhandling

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

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

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

Emotional Availability among Traumatized Refugee Families
Red Cross Centre for Tortured Refugees in Stockholm, Sweden, started in 2011 a clinical
research pilot project in order to prevent second generation traumatization among children of
tortured and war-traumatized parents with complex Post-traumatic Stress Disorder, PTSD.
The project runs in co-operation with Karolinska Institutet, Department of Women's and
Children's Health, Child and Adolescent Psychiatric Unit. The aim of the project was to
explore and evaluate a treatment program based on attachment theory and trauma theory for
parents and infants, age 0-24 months.
The early relation of mother-infant is fundamental for the survival of the infant and basic for
development of a child's social, emotional and cognitive health and capacity. According to
research parents with complex, PTSD, risk to transform their symptoms to their children.
The theoretical reference is based on attachment theory and Emotional Availability Scale,
EAS, as an investigating instrument. A clinical sample according to the project criteria was
selected. Five refugee families from the Middle East with established complex PTSD diagnos
have been participated in the treatment program, consisting of psycho pedagogical family
interventions, interplay therapy and group interventions.
The preliminary results of this pilot project indicated an outstanding need for developing a
treatment program focusing on mother and child emotional availability within refugee
families as a preventive intervention. This is the first report of a three-year project, financed
by Stiftelsen Allmänna Barnhuset.

The aim of my study is to describe and understand disabled children's special way of understanding and relating to the surrounding world. The thesis is based on an empirical study of six severely disabled children, lacking language and speech, aged from nine months to five years. The children were studied by video recordings in Händelsriket, a center organised to offer them different kinds of rich stimulation. One important finding was that the children expressed a non-verbal, meaning making competence that I decided to further explore. First, I tried to interpret the children's competence in the frame of psychoanalytic and psychodynamic theories, which turned out to be difficult as these theories were based on assumptions linked to the tradition of René Descartes, making a clear difference between Cogito and body, nature and culture. In this tradition, human consciousness is based on the acquisition of language and the development of the sphere of symbols. As a consequence, the mentioned theories could not help us to understand the embodied, non-verbal competence of the disabled children. Many of these theorists also argue that their theories have little relevance for disabled children.However, the phenomenological tradition, inspired by among others Edmund Husserl, Martin Heidegger and Maurice Merleau-Ponty, was of much more help in the analysis of the disabled children's activities in Händelsriket. In the theory of the lifeworld, Husserl´s and Merleau-Ponty´s, for instance, introduces two different kinds of intentionality indicating an embodied consciousness of great relevance to the empirical findings.Another important empirical finding was that feelings, and the expression of feelings, seemed to play an important role in the children's non-verbal, meaning making competence. As a consequence of this I have decided to include a discussion of research on feelings, emotions and affects. Based on the critique of the distinction between feelings, emotions and affects in social and anthropological research, I have decided to base my analysis on the concept of feelings.In the empirical analyses I discuss the role of feelings in the disabled children's perception, consciousness, communication and interaction with other people. I found that the meaning making processes based on feelings and expression of feelings contributed to the development of the children's personal styles of understanding their life-world. It also played an important role in the thematisation of their experiences, antecipations of objects, extensions and restrictions of their experiential horizons and their mastering of challenging experiences. The feelings also played important roles in the children's communicative competence and in their interaction with other people and the development of mutual closeness, understanding and community. In short, the feelings could be understood as important constituents of the life-world of the severely disabled children, their understanding of themselves and of the surrounding world.

"Min barndom var full av slag och psykisk misshandel. Jag var alltid rädd, varje dag, varje timme, varje minut och varje sekund. Rädd för min mamma, rädd för mina klasskamrater, rädd för han som utnyttjade oss, rädd för allt. Det fanns nästan ingen trygghet att finna i min barndom.
Jo, det fanns en plats där jag kunde känna mig trygg, även om det tog tid att våga vara trygg hos mina sommarföräldrar. Deras gård var en oas. Där fann jag en trygghet under de sommarveckor jag bodde
långt bort från mamma. Där fick jag provsmaka hur det kunde vara och hur det borde vara att få vara ett litet barn. Men det var bara de där sommarveckorna. En tid som liksom bara var till låns för snart skulle jag hem till min mamma igen, tillbaka till rädslan och utsattheten. Jag ville inte åka hem till när sommaren var slut, jag grät då jag tvingades att åka till mamma igen"

I Kärlek och stålull skildrar Lisbeth Pipping på ett personligt och levande sätt sin uppväxt med en utvecklingsstörd mamma, en svårt alkoholiserad pappa och två småsystrar. Läsaren får ta del av en barndom i misär, bristande omsorg och kärlek...

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Background

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

Methods

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

Findings

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

Interpretation

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