Bibliotek

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. 

Abstract 

Introduction

Informal carers in paid employment–working carers (WKCs)—have complex support needs. However, little is known about WKCs’ pattern of informal care provision, the support they receive, the impact providing care has on their employment, and how these vary between male and female WKCs. This study describes the pattern of informal care provision and received support among Swedish WKCs.

Research method/Design

The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire addressed the type and extent of informal care provided, support received and the impact of care provision on employment. Of the 30,009 people who received the questionnaire, 11,168 (37.3%) responded, providing an analytic sample of 818 (7.32% of respondents) employed or self-employed informal carers.

Findings

A typical Swedish WKC was a middle-aged female, providing weekly or daily care to a non-cohabitant parent, who experiences care as sometimes demanding and receives no formal support as a carer. Female WKCs were more likely than males to care alone and with higher intensity, to report a need for help in meeting their care-recipient’s needs, and to experience care as demanding. Approximately 17% of WKCs reported their employment had been affected due to caring, 40% their ability to work, and 31% their career development opportunities. Female WKCs’ ability to work was affected more than males’, and they were more commonly prevented from applying for work.

Conclusion

Swedish female WKCs compared to males provide more hours of informal care, across more care domains, more often alone. This places them in a challenging situation when combining paid work and care. Greater recognition of the challenges faced by WKCs is required in Sweden and other countries, as are policies to reduce gender inequalities in informal care provision in this group.

Är du anhörig till någon som har tvång? Då kan den här boken bli din nya följeslagare, en hand att hålla i när du behöver stöd och kunskap om ocd.

Under åren som anhörig till en son med tvångssyndrom har jag många gånger önskat att jag hade en guidebok för oss som lever i en familjesituation med tvång. I de grupper med anhöriga som jag möter i mitt professionella arbete som coach i anhörigklubben OCDhjälpen ser jag ett skriande behov av kunskap om det smärtsamma tillstånd som tvångssyndrom är, för att få stöd att hantera en vardag som ser så annorlunda ut än de flesta andras. Till slut kände jag att det var mitt uppdrag att skriva boken du nu har i din hand.

Med denna bok vill jag göra dig uppmärksam på de vanligaste fallgroparna som vi anhöriga ofta ramlar ner i så att du är rustad med bättre beredskap och kanske kan ta dig runt fallgropen i stället. Har du redan ramlat ned och sitter där på botten så ger jag praktiska och konkreta tips om var du hittar stödet att klättra upp igen. 

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

Abstract
Background: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15–17 years old.
Methods: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions tosupport YCs, and (iii) future strategies to support YCs.
Results: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remainschallenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care.
Conclusions: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

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. 

Introduction: The family life of people living with one family member with deafblindness has
been sparsely described.
Purpose: The aim of the study was to explore how children experience their everyday family
life when having a parent with deafblindness.
Methods: An explorative study in which data have been collected by qualitative interviews of
children. Qualitative content analysis has been used for analysing the data.
Results: Overall theme; Living an ordinary life—yet not, is based on four categories with
subcategories. A family like any other describes: Having the same family life as their friends,
Acting like other children and It is what it is. Different everyday life describes: Acknowledging
differences, Adjusting to the parent’s needs and Financial strain. Being there for the parent
describes: Helping the parent and Protecting the parent from harm. Being emotionally affected
describes: Feelings of frustration, Feelings of compassion and Need for support.
Conclusion: Children as relatives of parents with deafblindness have been given a voice. The
children live an ordinary life, but at the same time a different ordinary life. Professionals need
to take the child and their needs into account when support is given.

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.

En dag när Wille vaknar märker han att något inte är som vanligt med pappa. Han har åkt till jobbet utan att ta på sig superhjältekläderna. Har han bara "pappyjamasen" på sig? Och hans "hjältelefon" ligger kvar i köket. Han som alltid är så noga med allt. Wille och hans storasyster Agnes blir oroliga och ger sig ut för att leta efter pappa. Aldrig hade de kunnat ana vad som skulle hända.

Pappan som slutade vara en superhjälte är en bok om utbrändhet och utmattningsdepression. Att förklara för barn vad som händer när en förälder drabbas av utbrändhet är inte alltid lätt. I den här boken får vi följa med på hela resan från det jobbiga och ibland skrämmande till den väg som leder tillbaka.

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.

Katarina är inte sextio år med utflyttade barn, en trygg karriär och all tid i världen när hennes mamma drabbas av en demenssjukdom. Katarina är strax under fyrtio, chef, fru och trebarnsmamma. Hon lever i sandwichgenerationen, klämd av krav både uppifrån och nedifrån. Alltid är det någon som behöver henne. Att dessutom tvingas bevittna sin mammas gradvisa nedmontering är en tung process som väcker svårhanterliga känslor vid sidan av sorgen. I synnerhet när den nära och kärleksfulla relationen mellan mor och dotter inte är så självklar som den borde vara.

Lex Katarina är en bok om skuld, skam och otillräcklighet, men också om den vardagsglädje, utveckling och försoning som skymtar bakom molnen.

I Sverige finns mer än en miljon anhöriga som vårdar eller stöttar en närstående med fysisk eller psykisk ohälsa eller funktionsnedsättning. Även om var och en har sin unika historia är det mycket som förenar oss.

"Anhörig i ett hav av känslor" ger röst åt våra berättelser. Om ovisshet och oro, otillräcklighet och frustration, skuld och skam, sorg och maktlöshet. En situation som kan utveckla oss som människor, men också utmana och slita ut oss. Det handlar om avgrunder och guppande känslohav, men också om stillsamma solgläntor och fascinerande utsiktsplatser.
Boken vänder sig till dig som själv är anhörig. Här kan du få igenkänning, förstå att du inte är ensam om det du går igenom och hitta vandringsstavar för din resa. Det är också en använd-bar bok för dig som möter anhöriga i din profession eller ditt ideella engagemang.

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

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.

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.

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.

Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members’ health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.

Abstract [en]

Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symp- toms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its asso- ciation with professional and social support among bereaved family members after a close person’s death from sudden CA.

Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

Results: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associ- ated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

Abstract [en]

BackgroundFamily sense of coherence (FSOC) seems to reduce distress in the family and promote the well-being of the family. Therefore, getting accurate measurements for families with long-term illnesses is of particular interest. This study explores dyadic data analysis from the dyadic- and single-informant perspectives, and the measurement properties of the FSOC-S12 according to the Rasch model.MethodsRacked and stacked data from 151 dyads were analyzed according to the polytomous Rasch model.ResultsNotably, both the dyadic- and single-informant perspectives (i.e., racked and stacked data set-ups) showed measurement properties with minor deviations from the Rasch model according to fit statistics. However, most items had disordered thresholds and some problems with local dependency. Item hierarchies were similar in both set-ups and there was no differential item functioning (DIF) by role from the dyadic informant perspective. Four items showed DIF by informant role in the single-informant perspective.ConclusionsOur approach to handling dyadic data has shown both strengths and limitations in the evaluation of FSOC-S12, and the understanding of FSOC as a construct from the family's view of the family's ability as a whole (dyadic-informant perspective) and patient's and family member's separate views of the family's ability as a whole (single-informant perspective).

Background: Suicide bereavement increases the probability of adverse outcomes related to grief, social functioning, mental health, and suicidal behavior. While more support for individuals bereaved by suicide has become available, the evidence regarding its effectiveness is not straightforward. The literature suggests that identifying best-practice components is key in designing effective postvention interventions. Aims: This metareview aims to identify components of suicide bereavement interventions perceived to be effective by suicide-bereaved people. Method: The review adhered to preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. Systematic searches in Medline, PsycINFO, Embase, Emcare, EBM Reviews, Scopus, and Web of Science identified 11 eligible systematic reviews published between 2008 and 2023. The methodological quality was assessed using the Measurement Tool to Assess Systematic Reviews (AMSTAR-2) (PROSPERO registration CRD42023458300). Results: Our narrative synthesis reported the components perceived to be effective in relation to structure and content of interventions, facilitators, and modality (peer, group, community, online). Limitations: The quality of the included reviews varied considerably, and not all reviews reported on perceived effectiveness of interventions' components. Meta-analysis of findings was not possible due to study heterogeneity. Conclusion: The findings provide crucial information for researchers, service providers, and policymakers to enhance the provision of evidence-based support for people bereaved by suicide.

The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease. Therefore, our overall objective was to determine which interventions are useful in promoting resilience in family caregivers of people with Alzheimer's disease through a scoping review. The data were analysed using an adapted version of Arksey and O'Malley's methodological framework, after critically reading the articles with the CasP and MMAT tools. Nine articles were included (five analytical experimental, two quantitative and two mixed). Three types of interventions related to promoting resilience in family caregivers of people with Alzheimer's disease were identified: meditation, multicomponent psychoeducation and creative art; nurses participated as co-therapists in the last two.

Introduction: Informal caregivers of elderly people with dependency (EPD) provide intensive care that can affect their quality of life (QoL). Psychosocial interventions such as music therapy are important to work on their self-care. The aim of this study is to analyze, with a mixed method approach, the experience of participating in a Songwriting Group Music Therapy (SGMT) intervention on informal caregivers of EPD.

Methods: A total of 11 groups, with a convenience sample of 61 caregivers, received 10 SGMT sessions. Quantitative information related to QoL variables (anxiety, depression, spirituality, burden, and coping) was collected before and after the intervention and at 3 months of follow-up. Regarding qualitative data, an open-ended question about the experience of participating was asked.

Results: Significant changes were shown, sustained over time, in trait anxiety and depression and subscales including inner peace, social functioning, and mental health. Three themes were generated from the thematic analysis, including that SGMT participation can enhance personal growth, bring out and enable work on emotions, and promote helpful interpersonal dynamics.

Discussion: The findings indicate that SGMT is a useful intervention for informal caregivers of EPD, promoting psychological adjustment, enhanced coping, emotional regulation, and social support. This study reinforces the findings with caregivers of other populations, providing new results and highlighting the benefits of SGMT for caregivers of EPD.

With the population aging, more people are living with neurodegenerative conditions, leading to an influx of informal family caregivers, who often experience negative health outcomes. Few caregiver interventions have successfully adopted a holistic, strengths-based approach to fostering resilience. This article examines existing literature on caregiver resilience factors, which include self-efficacy, flexibility, cultivating positive emotions, and drawing on spiritual and social supports. Despite how dance/movement therapy (DMT) has been shown to foster psychological and physiological benefits, it remains underexplored for caregivers. Therapeutic mechanisms of DMT are expounded for their innate correspondence to resilience factors, and a new comprehensive model of DMT for caregiver resilience is presented, with implications for future intervention design and measurement.

Purpose: This study examined the feasibility and preliminary efficacy of Expressive Writing (EW) in improving informal cancer caregiver (IC) and patient health, and enhancing ICs' emotion regulation.

Method: Fifty-eight breast cancer ICs and patients participated in a randomized controlled feasibility trial of remote EW. ICs were randomly assigned to the EW or control group and completed 3 weekly writing sessions. ICs and patients completed health and emotion regulation assessments at baseline, intervention completion, and 3 months post-intervention. Screening, recruitment, assessment process, randomization, retention, treatment adherence, and treatment fidelity were computed for feasibility. Effect sizes were calculated using the PROMIS Depression Short Form, RAND Short Form 36 Health Survey, Breast Cancer Prevention Trial Hormonal Symptom checklist, healthcare utilization, and the Emotion Regulation Questionnaire for efficacy.

Results: Of the 232 interested individuals, 82 were screened, and 60 enrolled (6 monthly). Two individuals withdrew and 19 were lost to follow-up, leaving 39 individuals. ICs completed at least one assessment and two sessions, and patients completed at least two assessments. All sessions were administered as intended. ICs generally followed instructions (88%-100%), wrote the full time (66.7%-100%), and were engaged (M(SD) = 3.00(1.29)-4.00(0.00)). EW had small-to-medium effects in improving IC health (g = -0.27-0.04) and small-to-large effects in improving patient health (g = -0.28-0.86). EW moderately decreased suppression (g = 0.53-0.54) and slightly increased reappraisal, at least 3 months post-intervention (g = -0.34-0.20).

on strategies and rigorous testing.

Abstract

Abstract

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.

Abstract

Background Children of refugees are often exposed to the consequences of parental post-traumatic stress disorder (PTSD), potentially leaving them vulnerable to intergenerational transmission of psychopathology. The present study aimed to determine whether parental PTSD is associated with childhood psychiatric morbidity among children of refugees.
Methods This study is a two-generation nationwide cohort study using the Danish Immigration Services database. We followed up children younger than 18 years with at least one refugee parent until psychiatric contact, end of the study, their 18th birthday, emigration, or death. We excluded children if their parents were diagnosed only with psychiatric diagnoses other than PTSD or if they had received a psychiatric contact before parental PTSD diagnosis.
Information on parental PTSD and offspring psychiatric morbidity was obtained from the Danish Psychiatric Central Research Register. We used Cox proportional hazards regression models to assess the risk of psychiatric contacts among children of refugees with PTSD compared with children of refugees with no psychiatric diagnosis.
Findings Between Jan 1, 1995, and Dec 31, 2015, 102010 refugees obtained residency permission in Denmark and 62 239 biological children of refugees were born in Denmark before Dec 31, 2015. 51793 were eligible and included in the study (median follow-up 7·15 years [IQR 3·37–11·78]); of these, 1307 (2·5%) children had a psychiatric contact. 7486 (14·5%) children of refugees were exposed to parental PTSD. Parental PTSD significantly increased the risk of
psychiatric contact in offspring (hazard ratio 1·49 [95% CI 1·17–1·89] for paternal PTSD, p=0·0011; 1·55 [1·20–2·01] for maternal PTSD, p=0·00084) after adjustment for sociodemographic variables.

Personal assistance, since its implementation in 1993, has been shown to provide support for persons with severe functional disabilities in their everyday life, ensuring inclusion in societal roles such as working life. Personal assistance (PA) may also provide support in parenting; however, with the right to PA becoming increasingly questioned in Sweden, parents with disabilities have varying experiences of receiving support for their role as parents. Experiences also differ in regard to how access to a personal assistant is important to their child's daily life. The aim of this article is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. Eleven parents who have had or presently have PA were interviewed. The results show that parents describe that PA help them to fullfil their parental roles although the support could be more flexible to the needs of parents and their children. In situations when PA has been denied, children are negatively impacted and some children act by taking on responsibilities for the care of their parent. In conclusion; childrens' perspective of their family life needs to be taken in consideration when assessing the rights to PA.

This paper concerns children's and young people's accounts about the situation when one parent is misusing substances but the other parent is not. Earlier research on the other parent is scarce and fragmented. The aim of the paper is to discuss the role of the other parent from a child perspective. The results are based on qualitative analysis of interviews with 23 children who had one parent who misused substances while the other parent, according to public knowledge, did not. The main finding is that the other parent is a source of support, help and protection to some children, but difficulties may reduce the other parent's ability to protect the children. Moreover, the challenges differ in the situations before and after the parents' separation. The conclusion underlines the importance of taking a family perspective, working with the whole family and seeking solutions that take into account all persons of importance to the children's welfare. It cannot be taken for granted that the other parent is able to protect the children. A careful assessment of the children's living conditions is warranted and that assessment should include listening to the children.

Detta informationsmaterial uppdaterades i maj 2024.
Materialet är framtaget i samarbete med Malin Lövgren

Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers.

Grief following a parent’s suicide has been called ‘the silent grief’: due to a prevailing stigma connected to suicide as a mode of death, the parent cannot be talked about. This silenced or distorted communication complicates grieving youths’ meaning reconstruction centred on the question of why the parent committed suicide – a question inevitably linked to queries of who the deceased parent was, and that ultimately triggers thoughts about who oneself has become in the light of this experience. Previous research has emphasized how vulnerable parentally suicide-bereaved youths are by categorizing them as ‘at risk group’ of social and psychological problems and even suicide. However, there is scant knowledge about how these young mourners perceive and manage their own grief and need for social support – knowledge that is essential from a professional perspective. The aim of this thesis is to use a narrative research approach to investigate what and how young mourners tell of their experiences in a variety of social contexts: research interviews, a theatre play and two chat contexts on the Internet. Since they actively seek to achieve something through their communication with others, mourning youths are seen as storytellers and social actors, rather than passive victims of circumstance. This thesis shows how these young mourners search for a context outside of their immediate daily networks where they can normalize and liberate themselves and their deceased parent from stigmatizing discourses. The possibility of narrating experiences in a de-stigmatizing context supports a renegotiation of how to make sense of the suicide – from a voluntary and selfish act, to an involuntary and desperate act caused by adverse life situations or ‘unbearable pain’ and depression. This knowledge is applicable to encounters with parentally suicide-bereaved youths in a professional context, such as social work practice.

Abstract

Abstract

Abstract [sv]

Bakgrund: Sorg är en normal reaktion i samband med närståendes död. Sorg är inteen sjukdom men kan ge besvär som liknar dem som uppkommer vid sjukdom. Om sorgeninte kan hanteras av personen som drabbas av sorg kan den leda till kompliceradsorg och sorgeprocessen förlängs. Sjuksköterskor som arbetar inom vård och omsorgmöter anhöriga som upplever sorg i samband med närstående döende och död ochbehöver ha kunskap och förståelse för hur deras situation kan vara för att kunna geadekvat stöd för anhöriga i sorg.

Syfte: Syftet var att beskriva anhörigas upplevelser av sorg i samband med vuxen närståendesdöd.

Metod: En allmän litteraturöversikt baserad på vetenskapliga artiklar med kvalitativstudiedesign. Vetenskapliga artiklar söktes fram i databaserna Cinahl Complete, Pub-Med och PsycINFO. Artiklarna kvalitetsgranskades utifrån kvalitativa kvalitetskriterieroch analysen av studiernas resultat genomfördes utifrån Fribergs analysmetod för litteraturöversikter.

Resultat: Upplevelsen av sorg delas in i två kategorier och tio underkategorier. En känslomässigbelastning och att känna sig vilsen och oviss med underkategorierna Chockoch oförmåga att minnas, Smärta, Ångest och ledsenhet, Skuld och lättnad, Ensamhetoch saknad, Ovisshet samt Vilsenhet. Omgivningens agerande förvärrar och lindrarsorgen med underkategorierna Att mötas av personer som inte förstår, Att få informationsom ger förståelse samt Att få känslomässigt stöd.

Diskussion: Studiens kvalitet diskuteras utifrån trovärdighetsbegreppen tillförlitlighet,verifierbarhet, pålitlighet och överförbarhet. I resultatdiskussionen diskuteras de trecentrala fynden: upplevelser av skuld, ovisshet och betydelsen av känslomässigt stödvid sorg. Fynden diskuteras i relation till personcentrerad vård och sjuksköterskorsbehov av kunskap för att kunna möta personer i sorg.

I Dina ögon handlar om hur Thomas tidigt anar något annorlunda hos sin dotter. Han söker hjälp i jakten på en lösning hos myndigheter men får istället i flera år kämpa mot det han behöver minst - skuld. Den oförstående omgivningen och bristen på stöd blir till slut övermäktig och det för hans dotter ifrån honom. Trots dotterns frånvarao finns känslorna ständigt närvarande; sorg, ilska och frustration men även stolthet, glädje och hopp. Thomas Nybom är pappa till fyra barn varav Shara är den näst äldsta. Han bor utanför Norrköping och har arbetat med personer med neuropsykiatriska diagnoser i tjugo år och handleder även inom ämnet NP. År 2009 startade han lokalföreningen NP Vision, som är en anhörigförening för personer med neuropsykiatriska diagnoser.

Abstract

Abstract

Objective: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

Method: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

Results: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

Significance of results: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

The purpose of this study was to elucidate conditions at all system levels in a specific health care service to develop practices for identification of children as relatives. An interactive research approach with the intention to create mutual learning between practice and research was used. The participating health care service cared for both clinic in- and outpatients with psychiatric disorders. Health care professionals from different system levels (micro, meso, macro) participated, representing different professions. At the first project meeting, it was obvious that there was no systematic approach to identify children as relatives. At the micro level, activities such as a pilot survey and an open house activity were carried out. At the meso level, it was discussed how to better support collaboration between units. At the management (macro) level, it was decided that all units should appoint at least one child agent, with the aim to increase collaboration throughout the whole health care service. To change focus, in this case from only parents to inclusion of children, is an important challenge faced by health care services when forced to incorporate new policies and regulations. The new regulations contribute to increased complexity in already complex organizations. This study highlights that such challenges are underestimated.

Objectives: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.

Methods: This was a register-based national cohort study of 772,117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1-5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).

Results: Parental death was associated with lower grades (ORs: -0.21 [95% CI: -0.23 to -0.20] and -0.17 [95% CI: -0.19 to -0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: -0.27 [90% CI: -0.28 to -0.26]), compared with natural deaths (OR: -0.16 [95% CI: -0.17 to -0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.

Conclusions: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.

Background: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer.

Methods: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz.

Results: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'.

Conclusion: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.

Design: Integrative literature review study.

Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.

Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Purpose: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Aim: To examine the extent to which structured action plans, i.e. collaborative individual plans (CIPs), used by professionals within the psychiatric care, substance use treatment services and social services, evaluate if clients have children, and if professionals take actions if clients do have children. According to Swedish law, a CIP should be established when a client is in need of care from more than one branch of the care network. Professionals who meet adult clients have the opportunity to identify children at risk. Including a question in the CIP on whether a client has a child is a good approach to identify children in need of support.Methods: Cross-sectional data from professionals were collected prior to attending a three-day CIP course. A total of 705 individuals (n = 797 invited) responded to the questionnaire.Results: More than 90% reported that they meet clients for whom a CIP should be established, and 52.6% of these (n = 346) were aware of an existing CIP template within their organization. Approximately 30% (n = 203) reported that this template included an item on whether the client has one or more children. Of these, a majority reported ensuring that the children receive adequate care (83.3%, n = 169), and that they follow up on the receipt of such care (62.6%, n = 125).Conclusions: The care network needs to implement CIPs to a higher degree, and CIP templates need to include items about the clients' children to ensure that children at risk are identified and thereby can receive adequate support.

Background: Depending on the definitions used, between 5 and 20 % of all Swedish children grow up with at least one parent suffering from alcohol problems, while 6 % have at least one parent who has received inpatient psychiatric care, conditions that may affect the children negatively. Nine out of ten Swedish municipalities therefore provide support resources, but less than 2 % of these children are reached by such support. Delivering intervention programs via the Internet is a promising strategy. However, web-based programs targeting this at-risk group of children are scarce. We have previously developed a 1.5-h-long web-based self-help program, Alcohol & Coping, which appears to be effective with regards to adolescents' own alcohol consumption. However, there is a need for a more intense program, and therefore we adapted Kopstoring, a comprehensive Dutch web-based psycho-educative prevention program, to fit the Swedish context. The purpose of the program, which in Swedish has been called Grubbel, is to strengthen protective factors, such as coping skills and psychological well-being, prevent the development of psychological disorders, and reduce alcohol consumption.

Methods/design: The aim of the current study is to evaluate the effectiveness of Grubbel, which targets 15-25-year-olds whose parents have substance use problems and/or mental illness. Specific research questions relate to the participants' own coping strategies, mental health status and substance use. The study was initiated in the spring of 2016 and uses a two-armed RCT design. Participants will be recruited via social media and also through existing agencies that provide support to this target group. The assessment will consist of a baseline measurement (t0) and three follow-ups after six (t1), 12 (t2), and 24 months (t3). Measures include YSR, CES-DC, Ladder of Life, Brief COPE, AUDIT-C, and WHOQOL-BREF.

Discussion: Studies have revealed that the majority of children whose parents have substance use or mental health problems are not reached by the existing support. Thus, there is an urgent need to develop, implement, and evaluate novel intervention programs and disseminate successful programs to a broader audience. This study, investigating the effects of a web-based intervention, therefore makes an important contribution to this field of research.

To explore the difficulties parents face when understanding their children's reactions to parental cancer and parents' reactions to their children's perceived needs.

Qualitative interviews with cancer patients and their partners.

Eleven patients and seven partners took part. Their children were aged 1-15 years. Eight patients were mothers and cancer was diagnosed median 28 (7-104) months ago.

Inductive analysis with systematic text condensation.

Parents were groping in the dark when understanding their children's reactions. They observed signs of distress in their children, but often avoided communication about emotional reactions. We suggest parental difficulties in containing own and children's emotions as an important cause for this situation.

Parents lacked relevant support offers for the family as a unit. Identification of children's difficulties cannot be based on parental evaluation alone. We suggest family support as part of standard care for patients with minor children.

An illness or injury sustained by a family member affects all family members. It is consequently important that a child’s need to be involved in a family member’s care is clearly recognized by healthcare professionals. The aim of this study was to describe healthcare professionals’ approaches to children as relatives of a parent being cared for in a clinical setting. A web-based study-specific questionnaire was sent and responded to by 1052 healthcare professionals in Sweden. Data were analysed using descriptive statistics and qualitative analysis. The results show that guidelines and routines are often lacking regarding involving children in the care of a parent. Compared to other areas, psychiatric units seem to have enacted routines and guidelines to a greater extent than other units. The results indicate that structured approaches based on an awareness of the children’s needs as well as a child-friendly environment are vital in family-focused care. These aspects need to be prioritized by managers in order to support children’s needs and promote health and wellbeing for the whole family.

Ort, förlag, år, upplaga, sidor

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

OBJECTIVE: To determine the association between parental mental illness and the risk of injuries among offspring. DESIGN: Retrospective cohort study. SETTING: Swedish population based registers. PARTICIPANTS: 1 542 000 children born in 1996-2011 linked to 893 334 mothers and 873 935 fathers. EXPOSURES: Maternal or paternal mental illness (non-affective psychosis, affective psychosis, alcohol or drug misuse, mood disorders, anxiety and stress related disorders, eating disorders, personality disorders) identified through linkage to inpatient or outpatient healthcare registers. MAIN OUTCOME MEASURES: Risk of injuries (transport injury, fall, burn, drowning and suffocation, poisoning, violence) at ages 0-1, 2-5, 6-9, 10-12, and 13-17 years, comparing children of parents with mental illness and children of parents without mental illness, calculated as the rate difference and rate ratio adjusted for confounders. RESULTS: Children with parental mental illness contributed to 201 670.5 person years of follow-up, while children without parental mental illness contributed to 2 434 161.5 person years. Children of parents with mental illness had higher rates of injuries than children of parents without mental illness (for any injury at age 0-1, these children had an additional 2088 injuries per 100 000 person years; number of injuries for children with and without parental mental illness was 10 235 and 72 723, respectively). At age 0-1, the rate differences ranged from 18 additional transport injuries to 1716 additional fall injuries per 100 000 person years among children with parental mental illness compared with children without parental mental illness. A higher adjusted rate ratio for injuries was observed from birth through adolescence and the risk was highest during the first year of life (adjusted rate ratio at age 0-1 for the overall association between any parental mental illness that has been recorded in the registers and injuries 1.30, 95% confidence interval 1.26 to 1.33). Adjusted rate ratios at age 0-1 ranged from 1.28 (1.24 to 1.32) for fall injuries to 3.54 (2.28 to 5.48) for violence related injuries. Common and serious maternal and paternal mental illness was associated with increased risk of injuries in children, and estimates were slightly higher for common mental disorders. CONCLUSIONS: Parental mental illness is associated with increased risk of injuries among offspring, particularly during the first years of the child's life. Efforts to increase access to parental support for parents with mental illness, and to recognise and treat perinatal mental morbidity in parents in secondary care might prevent child injury.

Aim: To increase understanding of the consequences of growing up with substance-abusing parents, including how this can influence the experience of becoming a parent.

Methods: In-depth interviews were conducted with 19 parents who had participated in an Infant and Toddler Psychiatry Unit intervention programme and who had experienced substance-abusing parents in their family of origin. Directed qualitative content analysis was used to analyse the data.

Results: Analysis of the interview material revealed both a high incidence of parentification and a conspiracy of silence concerning the substance abuse that helped generate symptoms of cognitive dissonance in the children. As parents they experience a high degree of inadequacy, incompetence and stress.

Conclusion: A majority of the children who had grown up with substance-abusing parents responded by taking a parenting role for themselves, their siblings and their parents. These children, often well-behaved and seemingly competent, need to be identified and offered support as they risk developing significant psychological and emotional difficulties that can extend into adulthood. They form an extra sensitive group who may need special support up to and including the time when they become parents themselves. This finding underlines the importance of further research on parenting among those who have grown up with abusive parents.

Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16-28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

Background: Children of parents with mental illness are a vulnerable group, but their numbers and their exposure to adversity have rarely been examined. We examined the prevalence of children with parents with mental illness in Sweden, trends in prevalence from 2006 to 2016, and these children's exposure to socioeconomic adversity.

Methods: We did a population-based cohort study among all children (aged <18 years) born in Sweden between Jan 1, 1991, and Dec 31, 2011, and their parents, followed up between Jan 1, 2006, and Dec 31, 2016. We included children who were identified in the Total Population Register and linked to their birth parents, excluding adopted children and those with missing information on both birth parents. We used a comprehensive register linkage, Psychiatry Sweden, to follow up for indicators of parental mental illness and socioeconomic adversity. Marginal predictions from a standard logistic regression model were used to estimate age-specific, 3-year period prevalence of parental mental illness and trends in prevalence for 2006-16. Using cross-sectional data on each child, indicators of socioeconomic adversity were compared between children with and without concurrent parental mental illness using logistic regression.

Findings: Of 2 198 289 children born in Sweden between Jan 1, 1991, and Dec 31, 2011, we analysed 2 110 988 children (96·03% of the total population). The overall prevalence of children with diagnosed parental mental illness between 2006 and 2016 was 9·53% (95% CI 9·50-9·57). This prevalence increased with age of the child, from 6·72% (6·65-6·78) of the youngest children (0 to <3 years) to 10·80% (10·73-10·89) in the oldest (15 to <18 years). The prevalence of diagnosed parental mental illness increased from 8·62% (8·54-8·69) in 2006-09 up to 10·95% (10·86-11·03) in 2013-16. Children with any type of parental mental illness had markedly higher risk of socioeconomic adversity, such as living in poorer households or living separately from their parents.

Interpretation: Currently, 11% of all Swedish children have a parent with a mental illness treated within secondary care. These children have markedly higher risk of broad socioeconomic adversity than do other children. There is a need to understand how socioeconomic adversity and parental mental illness influence vulnerability to poor life outcomes in these children.

Funding: European Research Council, National Institute for Health Research, Region Stockholm, and the Swedish Research Council.

Introduction: To estimate the prevalence of children with problem drinking parents in Sweden and the extent to which they have an elevated risk of poor health, social relationships and school situation in comparison with other children.

Methods: Survey with a nationally representative sample of Swedish youth aged 15-16 years (n = 5576) was conducted in 2017. A short version of The Children of Alcoholics Screening Test (CAST-6) was used to identify children with problem drinking parents. Health status, social relations and school situation were measured by well-established measures. Overall prevalences for girls and boys were presented as well as relative risks (RR) of harm for children with problem drinking parents compared with other children.

Results: A total of 13.1% of the sample had at least one problem drinking parent during adolescence according to CAST-6-a higher proportion of girls (15.4%) than boys (10.8%). This group had an elevated risk of poor general health as well psychosomatic problems compared with other children (RR 1.2-1.9). They were also more likely to use medication for depression, sleeping difficulties and anxiety (RR 2.2-2.6). Their social relations were also worse especially with their father (RR 3.1) and they had more problems at school (RR 2.6).

Discussion and conclusions: The risk of problems related to parental drinking goes beyond the most severe cases where parents have been in treatment for their alcohol problem. This is important knowledge since the majority of problem drinkers never seek treatment and the major part of parental problem drinking is found in population samples.

Previous studies have shown that parental death influences health and mortality in bereaved offspring. To date, few studies have examined whether exposure to parental bereavement in childhood is associated with suicidality later in life. The aim of the present research was to investigate whether parental death during childhood influences self-inflicted injuries/poisoning in young adulthood. A national cohort born during 1973-1982 (N = 871,402) was followed prospectively in the National Patient Discharge Register from age 18 to 31-40 years. Cox regression analyses of proportional hazards, with adjustment for socio-demographic confounders and parental psychosocial covariates, were used to test hypotheses regarding parental loss and hospital admission due to self-inflicted injuries/poisoning. Parental deaths were divided into deaths caused by (1) external causes/substance abuse and (2) natural causes. Persons who had lost a parent to an external cause/substance abuse-related death had the highest risk of being admitted to a hospital for a self-inflicted injury/poisoning; HRs 2.03 (1.67-2.46) for maternal death and 2.03 (1.84-2.25) for paternal death, after adjustment for socio-demographic confounders and risk factors among surviving parents. Risks were also increased for parental death due to natural causes, but at a lower level: 1.19 (1.01-1.39) and 1.28 (1.15-1.43), respectively. Losing a father before school age was associated with a higher risk of hospital admission for a self-inflicted injury/poisoning than was loss at an older age for both genders. Maternal loss before school age was associated with a higher risk only for men, particularly maternal death by natural causes (p < 0.01).

Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden.

Design and methods: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed.

Findings: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support.

Conclusions: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

The studies in this dissertation have their origin in the research project PS Young Support. This project aimed to develop and evaluate a web-based support system (WBSS) for young people living close to someone with mental illness. To make this support relevant, and to achieve legitimacy and trustworthiness it was found important to cooperate with prospective users in developing it through a participatory design (PD) process. The dissertation follows two lines of investigation. One of these relates to how PD can inspire new views on design, while the other is about barriers to involvement of users. Specifically, inspiring views aims at how a PD process with prospective users as co-designers has influenced the way we think about WBSSs. Moving on from the common idea of a WBSS as a stand-alone intervention, Studies I and II show that WBSSs can be used as a tool to reach real-life support. Earlier research suggests that online support is rarely the preferred support; the present research show that young carers viewed it as a starting point for reaching real-life contacts and real- life support. Furthermore, young people with poor mental health are more prone to seek support online compared with those with less poor mental health. Hence, a WBSS could serve as a means to capture the former group and offer them online support. At the same time it could serve as a tool for reaching real-life support and external services. In this way the WBSS could offer a help path to individuals in need of support. Study IV investigates meta design, i.e. how users have really used the WBSS and the conditions for redesign. The development WBSS and its implemented version are compared with respect to their intended use (thing design) and how they really were used (use design). The context of use was found to be critical, since data collected in an experimental setting may be misleading and not reflect real use. Consequently, natural settings are recommended for user feedback. The second line of investigation in this dissertation concerns systemic barriers including barriers to user influence. It is not common in PD to focus on the designers. However, Study II and III reveal two types of barriers, both of which are connected to the designers. They are "systemic" barriers as they are a part of the setting that constitutes design. They cannot really be avoided, just handled. The first barrier has to do with the fact that users and designers do not regularly share the same social conditions, and consequently that they have different assumptions, implying that they may have difficulties to understand each other. Assumptions of shared views and the fact that understanding is a process that takes time may increase the effect of this foundational difference. Study II reports crucial differences in the views of what the WBSS should support. The second barrier concerns the impact of deadlines on designers' attitudes to users' contributions. Study III reports that halfway through the design process, designers reorganized their work and put more effort into the act of producing an artefact. Along with this shift, designers' preferred type of knowledge seemed to change, from knowledge based on user experience to expert knowledge.

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.

Children in dentistry are traditionally described in terms of medical diagnosis and prevalence of oral disease. This approach gives little information regarding a child's capacity to maintain oral health or regarding the social determinants of oral health. The biopsychosocial approach, embodied in the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) (WHO), provides a wider picture of a child's real-life experience, but practical tools for the application of this model are lacking. This article describes the preliminary empirical study necessary for development of such a tool - an ICF-CY Core Set for Oral Health. An ICF-CY questionnaire was used to identify the medical, functional, social and environmental context of 218 children and adolescents referred to special care or paediatric dental services in France, Sweden, Argentina and Ireland (mean age 8 years ± 3.6 yrs). International Classification of Disease (ICD-10) diagnoses included disorders of the nervous system (26.1%), Down syndrome (22.0%), mental retardation (17.0%), autistic disorders (16.1%), and dental anxiety alone (11.0%). The most frequently impaired items in the ICF Body functions domain were 'Intellectual functions', 'High-level cognitive functions', and 'Attention functions'. In the Activities and Participation domain, participation restriction was frequently reported for 25 items including 'Handling stress', 'Caring for body parts', 'Looking after one's health' and 'Speaking'. In the Environment domain, facilitating items included 'Support of friends', 'Attitude of friends' and 'Support of immediate family'. One item was reported as an environmental barrier - 'Societal attitudes'. The ICF-CY can be used to highlight common profiles of functioning, activities, participation and environment shared by children in relation to oral health, despite widely differing medical, social and geographical contexts. The results of this empirical study might be used to develop an ICF-CY Core Set for Oral Health - a holistic but practical tool for clinical and epidemiological use.

A new treatment form has emerged that merges cognitive behaviour therapy with the Internet. By delivering treatment components, mainly in the form of texts presented via web pages, and provide ongoing support using e-mail promising outcomes can be achieved. The literature on this novel form of treatment has grown rapidly over recent years with several controlled trials in the field of anxiety disorders, mood disorders and behavioural medicine. For some of the conditions for which Internet-delivered CBT has been tested, independent replications have shown large effect sizes, for example in the treatment of social anxiety disorder. In some studies, Internet-delivered treatment can achieve similar outcomes as in face-to-face CBT, but the literature thus far is restricted mainly to efficacy trials. This article provides a brief summary of the evidence, comments on the role of the therapist and for which patient and therapist this is suitable. Areas of future research and exploration are identified.

The research community is showing increasing interest in the analysis of the care trajectory of people with chronic health problems, especially dementias such as Alzheimer's disease. However, despite this interest, there is little research on the initial phases of the care trajectory. The fact that the first symptoms of dementia are generally noticed by those surrounding the elderly person suggests that the recognition of the disease is intimately linked to interactions not only amongst family members but also amongst friends, neighbours and health professionals. This study focuses on the period beginning with the first manifestations of cognitive difficulties and ending with the diagnosis of Alzheimer-type dementia. Interviews with 60 caregivers in Montreal, Canada were used to reconstruct how older people with Alzheimer-type dementia enter into the care trajectory. Our methods consisted of the analysis of social networks, social dynamics and action sequences. Our findings are presented in the form of a typology comprised of 5 pathways of entries into the care trajectory that are structured around the following four principles of the Life Course Perspective: family history, linked lives, human agency and organisational effects. We believe that analyses of the initial phases of the care trajectory, such as this one, are essential for the application of effective early detection and intervention policies. They are also central to informing future studies that seek to understand the care experience in its entirety.

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.

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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.

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.

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

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

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

Several issues impinge on scholars and practitioners interested in adolescent bereavement. First and foremost, adolescent bereavement over the death of a family member or a friend is more prevalent than many persons recognize. Second, scholars and practitioners need models that link adolescent development with adolescent coping during bereavement. Third, models are needed (a) to assist in rethinking what "recovery from bereavement" denotes and (b) to afford criteria for assessing recovery from bereavement. The author reviews findings on bereavement during adolescent development and gives particular attention to three models that enhance our understanding of coping with the life crises bereavement presents to adolescents. One model links grief during adolescence to developmental tasks; another model presents adaptive tasks and coping skills; and the third model identifies sentiments essential for human wholeness. Findings from a variety of studies with bereaved adolescents provide data to test the usefulness of the models. The closing discussion centers on implications for working with bereaved adolescents.

Om projektnät, språkliga förpackningar och institutionella paradoxer. Avhandling vid institutionen för psykologi.

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman. (Less)

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman.

illustrationer: Eva Akne

Barn/ungdom

Här får vi en beskrivning av hur det kan vara att ha en förälder med CP-skada.

There is surprisingly little good-quality evidence for the effectiveness of family systemic interventions with child and adolescent depression given the prevalence of depression and the demonstrated association with a range of family factors. What studies there are suggest the possibility of family therapy being an effective intervention but more research is needed before firm conclusions may be drawn. Family interventions may be more effective in children than in adolescents and where other family members are depressed. It is possible that family interventions continue to bring about improvement in symptoms after cessation of treatment. What research there is evaluates older structural models of therapy: there is a real need for more evaluation of newer models of practice.

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

OBJECTIVE:
To determine out-of-school activity participation profiles of school-aged children with physical disabilities.
METHODS:
Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill-based, self-improvement). Socio-demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio-demographic, self-concept and social support variables significantly associated with group membership.
RESULTS:
The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood-focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio-demographic, child, parent, family and environmental variables.
CONCLUSIONS:
The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person-environment approach in understanding the complexity of children's out-of-school activity participation.

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

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

Projektets avsåg att pröva ett anknytningsbaserat föräldrastödsprogram,
Trygghetscirkeln (COS-P), vars mål är att hjälpa föräldrar att nå fördjupad förståelse för
barns behov av känslomässigt stöd från sina föräldrar.
Prövningen av Trygghetscirkeln som komplement till övrig behandling genomfördes på
tre geografiskt spridda behandlingsenheter för familjer med små barn i Sverige. Efter
gruppledarutbildning genomfördes en RCT-studie där 52 föräldrar i åldern 18-44 år
(M=30 år) med barn under 58 månader (M=15 mån) randomiserades till att antingen få
behandling enligt planerad form (TAU), n=24 föräldrar, eller få behandling plus ett
tillskott av 8 ggr Trygghetscirkel i grupp (COS), n=28 föräldrar. Vid baslinjen (T1) fyllde
föräldrarna i självskattningsformulär avseende nivå av egen ångest (STAI), grad av
depressivitet (CES-D), grad av reflekterande förmåga (PRFQ) och nivå av föräldrastress
(SPSQ). Föräldrarna fyllde vidare i en anknytningsdagbok (AD). En diagnostisk DC:0-3R
profil sammanställdes utifrån journaldata, samspelet mellan förälder och barn
bedömdes kvalitativt (EAS) och en semistrukturerad djupintervju om förälderns inre
bild av sig själv och sitt barn (WMCI) värderades. Nya mätningar gjordes därefter vid sex
månader (T2) och 12 månader (T3) efter baslinjemätningen, med undantag för AD, den
diagnostiska profilen och djupintervjun som enbart gjordes vid T1 och T3. Efter
genomförda föräldragrupper utvärderades Trygghetscirkeln med hjälp av särskilda
frågeformulär riktade till föräldrar och till gruppledare. Som avslutning av projektet
gjordes öppna intervjuer dels med personal på respektive behandlingsenhet och dels
med ett bekvämlighetsurval av föräldrar.
Resultaten gav vid handen att både behandlare och föräldrar var mycket nöjda med
Trygghetscirkeln, som var stimulerande, gav en fördjupad kunskap och hjälpte
föräldrarna i sin föräldraroll. I COS-gruppen förändrades samspelskvalitet och framför
allt den inre bilden av föräldrarollen och av barnet signifikant mer än i TAU-gruppen. I
hela gruppen uppmättes över tid sänkt föräldrastress, reduktion av stressfaktorer i
omgivningen, bättre föräldra-barnrelation och mer åldersadekvat socioemotionell
utvecklingsnivå hos barnen. Den skattade nivån av egen psykiska hälsa, eller
självskattad reflekterande förmåga förbättrades emellertid inte i någon av grupperna.
Vid uppföljningen våren 2015 visade det sig att Trygghetscirkeln integrerats som en
väsentlig del i verksamheternas behandlingsutbud.
Rapporten lyfter fram att genomsnittsåldern för barnen i den undersökta gruppen var
låg, vilket ledde till en låg förekomst av individuella barnkliniska symtom. Problemen
var i huvudsak koncentrerade till föräldrafunktionen. Föräldrarna hade i allmänhet en
etablerad behandlingskontakt innan de bjöds in till studien vilket troligen medförde att
upplevelsen av den egna psykiska hälsa redan hade stabiliserats. Däremot förändrades
stress, samspelskvalitet och den inre bilden långsammare, vilket ledde till en mätbar
positiv förändring först vid uppföljningen efter 12 månader. Denna förändring var mer
tydlig hos COS-gruppen än hos TAU-gruppen.
7
Slutsatsen är att Trygghetscirkeln är ett föräldraprogram som uppskattas stort av både
föräldrar och gruppledare. Då Trygghetscirkeln syftar till ökad förståelse för hur det
egna förhållningssättet påverkar föräldrabeteendet, aktualiseras förälderns egna hinder
och svårigheter i mötet med materialet och gruppdiskussionerna. Detta stärker
betydelsen av erfarna gruppledare och att det sammanhang inom vilket
Trygghetscirkeln erbjuds får möjlighet att fungera som en trygg bas. Vi kan inte uttala
oss om Trygghetscirkeln som en generellt preventiv insats till alla föräldrar men vill
rekommendera den för riktade insatser till barn med identifierade risker för psykisk
ohälsa eller utvecklingsavvikelser samt som komplement till annan behandling där
större behov av barnkliniska insatser föreligger.

Akademisk avhandling.

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

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

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

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

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

Bakgrund: Att ha en sjuk närstående som bor på ett särskilt boende
för äldre påverkar hela familjen. Familjemedlemmarna kan uppleva
känslor av saknad, skuld, maktlöshet och sorg. Det finns därför ett
behov av att utvidga omvårdnaden till att innefatta hela familjen som
ett system för att minska ohälsa hos familjer. Detta kan ske genom
familjecentrerade interventioner. Ett exempel på en familjecentrerad
intervention är hälsostödjande familjesamtal (FamHC). Det är en
vårdhandling med focus på familjens styrkor, resurser och relationer
inom familjen. Det finns begränsad kunskap om dessa
familjeinterventioner i kontexten vård och omsorg av äldre.
Syftet: Syftet med avhandlingen är att ur ett familje- och
sjuksköterskeperspektiv studera upplevelser, responser och effekter
av sjuksköterskeledda hälsostödjande familjesamtal med närstående
som har en familjemedlem boende på ett särskilt boende för äldre.
Metoder: Denna avhandling är baserad på en intervention med
FamHC genomförd vid tre särskilda boenden för äldre i norra Sverige.
Samtalens struktur är tre på varandra följande samtal varannan vecka
med skilda fokus och avslutas med ett avslutande brev. Avhandlingen
består av fyra delstudier. I studie I-II användes semistrukturerade
gruppintervjuer med närstående som analyserades med kvalitativ
innehållsanalys. I studie III användes mixad metod. Kvalitativa
resultat från intervjuer och kvantitativa resultat från instrumenten
SWED-QUAL och FHI, analyserades parallellt samt integrerades
därefter. I Studie IV intervjuades tre sjuksköterskor med
semistrukturerade individuella intervjuer. Sjuksköterskorna skrev
även dagboksanteckningar. Intervjuerna och dagböckerna
analyserades med kvalitativ innehållsanalys.
Resultat: Resultaten från studie I visar att de närstående en månad
efter deltagandet i FamHC upplevde en lindring av sitt dåliga samvete
då de krav som familjerna ställer på sig själva minskat. Vid samtalen
fick de närstående bekräftelse på att de gjorde så gott de kunde.
Genom att dela sina föreställningar med varandra genom berättelser
skapades en ökad förståelse för hela familjens upplevelse av
situationen. Studie II visar att sex månader efter samtalsseriens
avslutande upplevde familjen deltagandet i FamHC som ett delande i
en dialog med en läkande kraft. Delandet upplevdes bekräftande
vilket gjorde att de närstående upplevde samtalen som trösterika.
Studie III visar att de närståendes emotionella välbefinnande hade
förbättrats sex månader efter att ha deltagit i FamHC. Studien visar
på förbättrad kommunikation och relationer samt förbättrat
samarbete inom familjen. Studie IV visar att sjuksköterskorna
upplevde att FamHC var en tillämpbar omvårdnadsåtgärd i arbetet
med familjer. Det gav en förbättrad förståelse av familjens situation
och förbättrade relationen med närstående.
Konklusion: Den övergripande slutsatsen från resultaten i
delstudierna är att genom att delta i FamHC blev familjerna tröstade.
Samtalen skapade en arena för de närstående att berätta samt att
lyssna till varandras berättelser. Det gavs utrymme att gråta och sörja
över sin situation över att ha en sjuk familjemedlem på ett särskilt
boende. Samtalen medförde reviderade föreställningar bland
närstående och sjuksköterskorna samt en ökad förståelse och ett
bättre samarbete inom familjen och en ökad känsla av välbefinnande
hos de närstående. Hälsostödjande familjesamtal kan därmed föreslås
vara ett användbart verktyg för sjuksköterskor i deras arbete med
närstående inom kontexten särskilda boenden för äldre personer.
v
Nyckelord:
Hälsostödjande familjesamtal, Familjecentrerad omvårdnad, FamHC,
Familjeomvårdnad, Omvårdnad, Särskilt boende för äldre.

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. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

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.

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.

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.

Beskriver barns levnadsförhållanden i siffror, generellt och över tiden. Här finns uppgifter om bl.a. barns hälsa, situationen i förskolan och skolan, fridtidsvanor och familjeförhållanden. Ett särskilt kapitel behandlar barn i utsatta situationer.

Lyfter fram skillnader mellan olika grupper barn beroende på exempelvis ålder, kön, ursprung och familjesituation. Även förändringar över tid följs upp.

Regeringen gav den 7 maj Socialstyrelsen i uppdrag att se till att det på lång sikt finns ett nationellt kompetenscentrum för anhörigstöd och ett nationellt kompetenscentrum inom demensområdet.

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

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

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

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.

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Kommunernas tillämpning av bestämmelsen
Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen
(2001:453), SoL, om att kommunerna ska erbjuda stöd till personer
som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid
fått en tydligare struktur och integrerats i kommunernas planer och styrdokument.
Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna
har inrättat tjänster, förbättrat informationen om stödet och arbetar
med att införa ett anhörigperspektiv i alla verksamheter.
Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen
i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen
i stor utsträckning, men i funktionshindersverksamheten och individoch
familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar
bestämmelsen i liten utsträckning.
Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen
har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej
till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov
av stöd, men det kan också bero på brister i samarbetet mellan handläggarna,
anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga.
Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren
i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen
om stöd och service till vissa funktionshindrade (1993: 387), och därmed
även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som
enbart har socialtjänstinsatser och deras anhöriga.
På motsvarande sätt uppger individ- och familjeomsorgen att stödet till
anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför
det arbetet något. Den framhåller missbruksvården, där det finns ett stort
utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och
familjeomsorgen beskriver däremot stora problem med att nå anhöriga till
personer inom socialpsykiatrin.
Får anhöriga stöd?
I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta
bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser.
Resultaten hittills pekar att olika former av anhörigstöd är en mycket
omfattande verksamhet i kommunerna.
Det saknas däremot underlag för att beskriva det stöd som ges till anhö-
riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går
det inte att ta fram dessa uppgifter i den officiella statistiken över socialtjänstens
insatser.
Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till
anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla
socialtjänststatistiken och ta fram en plan för statistiken beträffande kom-
7
munernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprö-
vade.
Hälso- och sjukvården och anhöriga
Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården
och inte minst primärvården, och därmed spelar sjukvården en viktig
roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock
inte lyckats etablera samarbete med hälso- och sjukvården i någon större
utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder
sällan till ett systematiskt samarbete kring anhörigstödet.
Det grundläggande problemet är att det saknas en struktur och rutiner för
samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhö-
riga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt
ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens
roll när det gäller stöd till anhöriga.
Socialstyrelsens slutsatser
Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt
genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i
socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar
att kommunerna behöver ytterligare vägledning i hur de ska tillämpa
bestämmelsen i SoL.
• Kommunerna behöver fortsätta att utveckla formerna för bemötandet
av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna
samt utveckla informationen om det stöd som finns att få och
se till att den når fram.
• Hälso- och sjukvården behöver utveckla formerna för bemötande av
anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjukvården
och socialtjänsten samarbetar för den anhörigas och närstå-
endes bästa.
• För att även inspirera hälso- och sjukvården i dess arbete med stöd
till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa
exempel på hur sådant arbete har byggts upp runt om i landet.
• Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-,
frivillig- och pensionärsorganisationers behov av information
genom att ta fram en informationsskrift om bestämmelsen.
• Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser
för att ge kommunerna ytterligare vägledning när det
gäller att införa bestämmelsen om stöd till anhöriga.

Kommunernas tillämpning av bestämmelsen

Den 1 juli 2009 infördes en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att socialtjänsten ska erbjuda stöd till personer som vårdar eller stödjer närstående.

Socialstyrelsens uppföljning visar att socialtjänstverksamheterna i kommunerna tillämpar bestämmelsen i mycket varierande grad. Längst har man kommit inom äldreomsorgen, vilket förklaras av utvecklingen av anhörigstöd i huvudsak skedde inom äldreomsorgen, innan bestämmelsen tillkom. Inom funktionshindersverksamheten och individ- och familjeomsorgen har man kommit igång, men mycket arbete återstår för att omsätta bestämmelsen utifrån de specifika förutsättningar som finns i dessa verksamheter.

Kommunerna har dock överlag blivit bättre på att sätta upp mål, avsätta resurser och organisera arbetet med att stödja anhöriga. Likaså har de ökat sitt utbud av service som stöd till anhöriga. Det betyder sammantaget att kommunerna erbjuder stöd till anhöriga i högre grad än tidigare.

Vad har bestämmelsen inneburit för de anhöriga?

Det är svårt att följa upp och beskriva bestämmelsens effekter för enskilda anhöriga eftersom det saknas underlag för att avgöra om fler anhöriga erbjudits och tagit emot stöd eller inte. Det beror på att uppgifterna om biståndsbeviljade insatser i socialtjänststatistiken inte innefattar uppgifter om bistånd till anhöriga.

Vad anser organisationerna om bestämmelsen?

Överlag är anhörig-, patient-, funktionshinders-, frivillig- och pensionärsorganisationerna kritiska till bristen på stöd, de stora skillnaderna i kvalitet och de stora variationerna mellan kommunerna. Socialtjänsten har också svårt att erbjuda ett individuellt utformat stöd. Vidare kräver de att den personal som arbetar med att stödja anhöriga ska ha kunskaper om de sjukdomar eller funktionsnedsättningar som de närstående har.

Organisationerna framhåller att det stöd som deras medlemmar behöver inte kan tillgodoses enbart inom socialtjänsten, utan det krävs stöd från sjukvården, skolan, arbetsgivaren och myndigheter, t.ex. försäkringskassan. Organisationerna poängterar också problemen med att samordna insatser för den närstående, och att det oftast är de anhöriga som tvingas ta det ansvaret.

Socialtjänstens samarbete med hälso- och sjukvården

Socialtjänsten har ett mycket begränsat samarbete med sjukvården när det gäller stödet till anhöriga, och socialtjänstens företrädare pekar på att det saknas en motsvarande lagstiftning om stöd till anhöriga i sjukvården. Det är också svårt att organisera ett kommunvis samarbete med sjukhus- och specialistvården som ofta betjänar många kommuner samtidigt. Även samarbetet med primärvården fungerar dåligt. Det grundläggande problemet är dock att det saknas en etablerad struktur för samarbetet mellan landstinget och socialtjänsten på området.

Har bestämmelsen fått några andra konsekvenser?

Sedan bestämmelsen infördes bedrivs allt mer av vården och omsorgen i hemmet, som en följd av att det finns färre sjukhusplatser och platser i särskilt boende. Detta får stora konsekvenser för de anhöriga.

I och med bestämmelsen har det blivit tydligt att lagen gäller för hela socialtjänsten och alla dess målgrupper och verksamheter. Bestämmelsen berör alla som vårdar eller stödjer någon närstående, oberoende av den närståendes diagnos, funktionsnedsättning, ålder, kön, relation, boendeförhållanden osv.

Det har också vuxit fram en insikt om att alla påverkas om det finns en hjälpbehövande person i familjen: oavsett om det är en make, ett barn eller en vuxen, en förälder eller ett syskon. Det gäller också oavsett i vilken utsträckning den anhöriga ger vård och omsorg till den sjuke.

En annan erfarenhet är att behovet av att uppmärksamma de anhörigas situation och behov av stöd inte enbart är en fråga för socialtjänsten utan för hela samhället: sjukvården, skolan, arbetslivet, myndigheterna och så vidare. Det pekar på behovet av ett förändrat synsätt, från ett individcentrerat till ett familjeorienterat synsätt i vården och omsorgen.

Socialstyrelsens slutsatser

Socialstyrelsen konstaterar att det återstår en del arbete för att bestämmelsen ska tillämpas mer i socialtjänsten och för att få ett anhöriginkluderande arbetssätt i all vård- och omsorgsverksamhet.

Kommunerna behöver bli bättre på att informera om vilket stöd de kan erbjuda, och hur anhöriga kan gå tillväga för att ansöka om det eller på annat sätt få stöd.
Kommunerna behöver utveckla dialogen med anhörig-, patient-, funk
tionshinders-, frivillig- och pensionärsorganisationerna för att ta vara på de kunskaper och erfarenheter som organisationerna har när det gäller stöd till anhöriga som vårdar närstående.
Huvudmännen behöver utveckla former och rutiner för samarbete kring stödet till anhöriga. Ett sätt kan vara länsövergripande överenskommelser om samverkan mellan sjukvården och socialtjänsten.
Socialtjänstens olika verksamheter, särskilt funktionshindersverksamheten och individ- och familjeomsorgen, behöver fortsatt stöd för att utveckla sin tillämpning av bestämmelsen. Ett fortsatt stöd bör också ta sikte på att utveckla möjligheterna att följa upp utvecklingen av stödet till anhöriga och att stimulera utvecklingen av kunskaper om effekter av stöd till anhöriga.

Kommunernas tillämpning av bestämmelsen

Den 1 juli 2009 infördes en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att socialtjänsten ska erbjuda stöd till personer som vårdar eller stödjer närstående.

Socialstyrelsens uppföljning visar att socialtjänstverksamheterna i kommunerna tillämpar bestämmelsen i mycket varierande grad. Längst har man kommit inom äldreomsorgen, vilket förklaras av utvecklingen av anhörigstöd i huvudsak skedde inom äldreomsorgen, innan bestämmelsen tillkom. Inom funktionshindersverksamheten och individ- och familjeomsorgen har man kommit igång, men mycket arbete återstår för att omsätta bestämmelsen utifrån de specifika förutsättningar som finns i dessa verksamheter.

Kommunerna har dock överlag blivit bättre på att sätta upp mål, avsätta resurser och organisera arbetet med att stödja anhöriga. Likaså har de ökat sitt utbud av service som stöd till anhöriga. Det betyder sammantaget att kommunerna erbjuder stöd till anhöriga i högre grad än tidigare.

Vad har bestämmelsen inneburit för de anhöriga?

Det är svårt att följa upp och beskriva bestämmelsens effekter för enskilda anhöriga eftersom det saknas underlag för att avgöra om fler anhöriga erbjudits och tagit emot stöd eller inte. Det beror på att uppgifterna om biståndsbeviljade insatser i socialtjänststatistiken inte innefattar uppgifter om bistånd till anhöriga.

Vad anser organisationerna om bestämmelsen?

Överlag är anhörig-, patient-, funktionshinders-, frivillig- och pensionärsorganisationerna kritiska till bristen på stöd, de stora skillnaderna i kvalitet och de stora variationerna mellan kommunerna. Socialtjänsten har också svårt att erbjuda ett individuellt utformat stöd. Vidare kräver de att den personal som arbetar med att stödja anhöriga ska ha kunskaper om de sjukdomar eller funktionsnedsättningar som de närstående har.

Organisationerna framhåller att det stöd som deras medlemmar behöver inte kan tillgodoses enbart inom socialtjänsten, utan det krävs stöd från sjukvården, skolan, arbetsgivaren och myndigheter, t.ex. försäkringskassan. Organisationerna poängterar också problemen med att samordna insatser för den närstående, och att det oftast är de anhöriga som tvingas ta det ansvaret.

Socialtjänstens samarbete med hälso- och sjukvården

Socialtjänsten har ett mycket begränsat samarbete med sjukvården när det gäller stödet till anhöriga, och socialtjänstens företrädare pekar på att det saknas en motsvarande lagstiftning om stöd till anhöriga i sjukvården. Det är också svårt att organisera ett kommunvis samarbete med sjukhus- och specialistvården som ofta betjänar många kommuner samtidigt. Även samarbetet med primärvården fungerar dåligt. Det grundläggande problemet är dock att det saknas en etablerad struktur för samarbetet mellan landstinget och socialtjänsten på området.

Har bestämmelsen fått några andra konsekvenser?

Sedan bestämmelsen infördes bedrivs allt mer av vården och omsorgen i hemmet, som en följd av att det finns färre sjukhusplatser och platser i särskilt boende. Detta får stora konsekvenser för de anhöriga.

I och med bestämmelsen har det blivit tydligt att lagen gäller för hela socialtjänsten och alla dess målgrupper och verksamheter. Bestämmelsen berör alla som vårdar eller stödjer någon närstående, oberoende av den närståendes diagnos, funktionsnedsättning, ålder, kön, relation, boendeförhållanden osv.

Det har också vuxit fram en insikt om att alla påverkas om det finns en hjälpbehövande person i familjen: oavsett om det är en make, ett barn eller en vuxen, en förälder eller ett syskon. Det gäller också oavsett i vilken utsträckning den anhöriga ger vård och omsorg till den sjuke.

En annan erfarenhet är att behovet av att uppmärksamma de anhörigas situation och behov av stöd inte enbart är en fråga för socialtjänsten utan för hela samhället: sjukvården, skolan, arbetslivet, myndigheterna och så vidare. Det pekar på behovet av ett förändrat synsätt, från ett individcentrerat till ett familjeorienterat synsätt i vården och omsorgen.

Socialstyrelsens slutsatser

Socialstyrelsen konstaterar att det återstår en del arbete för att bestämmelsen ska tillämpas mer i socialtjänsten och för att få ett anhöriginkluderande arbetssätt i all vård- och omsorgsverksamhet.

Kommunerna behöver bli bättre på att informera om vilket stöd de kan erbjuda, och hur anhöriga kan gå tillväga för att ansöka om det eller på annat sätt få stöd.
Kommunerna behöver utveckla dialogen med anhörig-, patient-, funk
tionshinders-, frivillig- och pensionärsorganisationerna för att ta vara på de kunskaper och erfarenheter som organisationerna har när det gäller stöd till anhöriga som vårdar närstående.
Huvudmännen behöver utveckla former och rutiner för samarbete kring stödet till anhöriga. Ett sätt kan vara länsövergripande överenskommelser om samverkan mellan sjukvården och socialtjänsten.
Socialtjänstens olika verksamheter, särskilt funktionshindersverksamheten och individ- och familjeomsorgen, behöver fortsatt stöd för att utveckla sin tillämpning av bestämmelsen. Ett fortsatt stöd bör också ta sikte på att utveckla möjligheterna att följa upp utvecklingen av stödet till anhöriga och att stimulera utvecklingen av kunskaper om effekter av stöd till anhöriga.

Sedan den 1 juli 2009 ska socialnämnden enligt socialtjänstlagen erbjuda stöd till personer som vårdar eller stödjer en anhörig. Genom enkäter till socialtjänstens verksamheter och kontakter på alla nivåer samt med anhörig-, patient- och frivilligorganisationer har följande bild av hur kommunerna tillämpar bestämmelsen framkommit.

Bristen på dokumentation gör det svårt att få en bild av hur den nya bestämmelsen tillämpas, omfattningen av det stöd som ges och hur stödet utvecklas. Utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder har kommunerna inte prioriterat tillräckligt högt. Därför är det på dessa områden som Socialstyrelsen kommer att inrikta sitt vägledningsarbete.

Äldreprägeln består

Fortfarande finns en tydlig äldreprägel i arbetet med att erbjuda stöd till anhöriga, eftersom kommunerna i första hand ger stöd till anhöriga till äldre. Arbetet, organisationen, utbudet och innehållet i kommunernas stöd till anhöriga har sina rötter inom vården och omsorgen om de äldre.

Arbetet med att stödja anhöriga är inte integrerat i alla socialtjänstens verksamheter. Stödet håller på att utvecklas, men mycket arbete återstår med att ge stöd till anhöriga till personer med långvarig sjukdom eller yngre personer med funktionshinder.

Kulturskillnader i synen på anhöriga

Man kan tala om olika kulturer i synen på och sättet att förhålla sig till anhöriga i socialtjänsten. De olika verksamheterna har olika och ibland vitt skilda uppdrag och historia. De möter anhöriga i skilda livssituationer och med olika levnadsförhållanden och därmed olika behov av stöd och hjälp.

Anhörigstöd i individ- och familjeomsorgen innebär till exempel ofta något annat än stöd för anhöriga till äldre. På samma sätt har anhöriga till personer med långvarig sjukdom eller funktionshinder ofta andra livsvillkor än anhöriga till äldre, och därmed andra behov av stöd och hjälp.

Brist på data

Det är svårt att få en bild av hur den nya bestämmelsen tillämpas, och av hur stödet till anhöriga som vårdar eller stödjer närstående utvecklas. Problemet är att socialtjänstens behovsprövade insatser dokumenteras på ett sådant sätt att man inte kan identifiera om insatsen beviljas som ett stöd till den anhöriga eller inte. Det är otillfredsställande att Socialstyrelsen inte kan beskriva hur den nya bestämmelsen påverkar enskilda anhöriga. En stor del av socialtjänstens insatser för anhöriga utgörs av icke behovsprövade insatser, s.k. allmänt inriktad service. Det saknas dock för närvarande underlag för att kunna beskriva omfattningen av de serviceinsatser som ges som stöd till anhöriga.

Slutsatser

Socialstyrelsen anser att kommunerna inte har prioriterat att utveckla stöd för anhöriga till långvarigt sjuka och personer med funktionshinder tillräckligt högt.
Socialtjänstens verksamheter behöver fortsätta utveckla arbetet om hur man bemöter anhöriga och se över vilken delaktighet och därmed vilket inflytande de erbjuder anhöriga, särskilt när de handlägger den närståendes ansökan om hjälp.
Många anhöriga har en långvarig kontakt med både hälso- och sjukvården och socialtjänsten. Därför är det nödvändigt att huvudmännen utvecklar kontakterna och rutinerna för samarbete i stödet till anhöriga.
Socialstyrelsen konstaterar att stödet till anhöriga till äldre är mest utvecklat. Socialstyrelsen kommer därför att inrikta sitt vägledningsarbete på utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder.
Socialstyrelsen kommer att utveckla dialogen med patient-, anhörig- och frivilligorganisationer, för att ta vara på organisationernas kunskaper och erfarenheter i arbetet med att utveckla stödet till anhöriga.
Socialstyrelsen konstaterar att det saknas underlag för att beskriva omfattningen av stödet till anhöriga. Socialstyrelsen avser därför att påbörja arbetet med att skapa ett system, för att kunna samla in uppgifter om serviceinsatser till stöd för anhöriga.

I propositionen föreslås en ändring i socialtjänstlagen (2001:453) som syftar till att förtydliga att socialnämnden ska erbjuda stöd för att under-lätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person som har funktionshinder.
Vidare bedöms att Socialstyrelsen bör få i uppdrag att utarbeta vägled-ning till stöd för tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till de personer som vårdar eller stödjer närstående.
Ändringen i socialtjänstlagen föreslås träda i kraft den 1 juli 2009.

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.

Riksrevisionen har granskat om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven.
Granskningens bakgrund
Någon gång i livet kommer de flesta av oss att ge omsorg eller hjälp till någon i vår
närhet som drabbas av sjukdom, en funktionsnedsättning eller som får behov av hjälp
på grund av hög ålder. Vi blir då anhöriga omsorgsgivare. Det kan vara så många som
1,3 miljoner anhöriga i Sverige som ger omsorg till en närstående. De flesta anhöriga
ger omsorg av fri vilja och har en god hälsa. Undersökningar visar dock att anhörigas
hälsa, ekonomi, arbetssituation och möjligheter till fritid kan påverkas negativt av
omsorgsgivandet. Ofta bor dessa anhöriga tillsammans med den de ger omsorg till, en
make/maka/partner, ett barn eller ett syskon, och deras omsorg är omfattande.
Att som anhörig ge vård och omsorg ska vara ett frivilligt åtagande och ett komplement
till det offentligas insatser. I praktiken är dock det offentligas insatser ett komplement till
de anhörigas omsorgsgivande enligt regeringen. Ett gott stöd till anhöriga är viktigt för
att undvika negativa konsekvenser av omsorgsgivandet för individer och för samhället.
Syftet har varit att granska om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven. Staten har främst valt att tillgodose anhörigas
behov av stöd genom att ändra socialtjänstlagen, 1998 och 2009, i syfte att förtydliga
kommunernas ansvar för stöd till anhöriga. Efter lagändringen 2009 ska kommunerna
erbjuda stöd till anhöriga. I regeringens propositioner inför lagändringarna har det
framgått att stödet ska kännetecknas av individualisering, flexibilitet och kvalitet.
Granskningen bygger främst på intervjuer med anhöriga, anhörig- och
patientorganisationer, forskare och företrädare för myndigheter och Nationellt
kompetenscentrum anhöriga (Nka). Intervjuerna har kompletterats med
forskningsresultat och kvantitativa studier.

Granskningens resultat
Riksrevisionens övergripande slutsats är att staten inte har gett goda förutsättningar för
ett stöd till anhöriga omsorgsgivare som motsvarar behoven. Granskningen visar att
anhörigas behov av stöd ofta handlar om att den närstående får en god vård och omsorg
men också om ett individanpassat och flexibelt stöd till dem själva.
Kommunernas anhörigstöd behöver utvecklas
En av de möjligheter till individualiserat stöd som regeringen betonade år 2009 var
att anhöriga skulle ansöka om bistånd för egen del. Under granskningen har det
framkommit att det är ovanligt och att omfattningen är svår att följa upp på grund
av bristande dokumentation. Riksrevisionens granskning tyder också på att brister i
kvalitet och flexibilitet i anhörigstöd leder till att anhöriga väljer att inte utnyttja det stöd
som erbjuds.
Det är stora skillnader i vilket stöd som erbjuds anhöriga och hur anhörigstödet styrs
inom och mellan kommuner enligt Socialstyrelsens kartläggningar. Stödet är i de
flesta kommuner mest utbyggt inom äldreomsorgen med utgångspunkt i situationer
där äldre makar ger omsorg till varandra. Det innebär enligt Riksrevisionen att äldre
makar i större utsträckning erbjuds stöd som motsvarar behoven än exempelvis
förvärvsarbetande anhöriga, anhöriga till funktionshindrade eller personer med
psykisk ohälsa. Sedan år 2009 har kommunerna börjat utforma stöd utifrån andra
anhöriggruppers behov i högre utsträckning än tidigare.
Kommunerna har även organiserat, styrt och finansierat anhörigstödet olika. I de
flesta kommunerna har dock anhörigstödet främst bedrivits i projektform, vid sidan
av ordinarie linjeorganisation. Det är också ovanligt att det finns styrdokument som
innehåller rutiner med ett anhörigperspektiv.
Riksrevisionen anser att kommunernas anhörigstöd behöver utvecklas för att uppfylla
intentionerna om ett individualiserat, flexibelt och kvalitativt stöd. Enligt Riksrevisionen
har utbudet av stöd hittills inte varit tillräckligt anpassat till anhörigas skiftande behov
och skillnaderna indikerar att kommunerna i olika utsträckning har valt att prioritera
stöd till anhöriga.
Staten bör ge bättre förutsättningar för det kommunala anhörigstödet
Kommunerna har fått ett stort utrymme att själva avgöra vilket anhörigstöd som de ska
erbjuda eftersom kommunernas ansvar har reglerats med en ramlagsbestämmelse i
socialtjänstlagen. I förarbetena preciserade regeringen att stödet bör kännetecknas av
individualisering, flexibilitet och kvalitet. Eftersom kommunerna har valt att främst
erbjuda anhörigstöd som kommunal service finns det begränsade möjligheter för
domstolarna att tydliggöra vilket stöd kommunerna ska erbjuda genom vägledande
rättsfall.

riksrevisionen granskar: medborgarna och förvaltningen
Regeringen har gett Socialstyrelsen i uppdrag att vägleda kommunerna i
implementeringen av bestämmelsen och inrättat ett nationellt kompetenscentrum
för att förbättra kunskapsläget. Trots dessa åtgärder nås ännu inte intentionerna
med det kommunala anhörigstödet och det skiljer sig åt vilket stöd anhöriga erbjuds
inom och mellan kommuner. Riksrevisionen menar därför att ytterligare vägledning
till kommunerna troligtvis inte är tillräckligt för att åstadkomma anhörigstöd som
motsvarar intentionerna.
Riksrevisionen anser att staten inte har gett tillräckligt goda förutsättningar för ett
kommunalt anhörigstöd som motsvarar intentionerna. Riksrevisionen rekommenderar
därför regeringen att överväga om 5 kap. 10 § socialtjänstlagen behöver förtydligas.
Statens styrmedel kan användas bättre
Sedan år 1999 har staten totalt satsat cirka 2 miljarder kronor på att utveckla
anhörigstöd i kommunerna. Riksrevisionens granskning visar att det delvis är oklart
vilka resultat som uppnåtts med de statliga satsningarna på kommunalt anhörigstöd.
Ett hinder för kunskap om satsningarna är att det saknas nationell statistik över vilket
stöd kommunerna erbjuder anhöriga och som anhöriga tar del av, vilket förklaras av
brister i dokumentation av anhörigstödet.
Varken Socialstyrelsen eller Inspektionen för vård och omsorg har hittills
genomfört någon riktad tillsyn av kommunernas skyldighet att erbjuda anhöriga
stöd. Riksrevisionen bedömer att tillsyn med nuvarande förutsättningar inte är ett
ändamålsenligt styrmedel för att komma tillrätta med problemen i kommunernas
anhörigstöd.
Riksrevisionen rekommenderar att om regeringen vill möjliggöra uppföljning, ökad
kunskap samt tillsyn av anhörigstödet i kommunerna bör regeringen ta ställning
till hur anhörigstödet som ges som service och bistånd ska dokumenteras av
kommunerna.
Det behövs mer kunskap om anhörigomsorgen
Idag finns det inga jämförbara studier om anhörigomsorgens utveckling över tid. De
undersökningar som finns har genomförts av olika aktörer och med olika frågor och
urval. Därmed är resultaten svåra att jämföra. Det saknas också kartläggningar av
omfattningen på minderåriga barns omsorgsgivande till närstående. Sammantaget
medför detta att det även saknas underlag för att bedöma de samhällsekonomiska
konsekvenserna av och kostnaderna för anhörigomsorgen på individ- och samhällsnivå.

stödet till anhöriga omsorgsgivare
Riksrevisionen rekommenderar att regeringen ger en myndighet i uppdrag att följa
anhörigomsorgens omfattning och konsekvenserna för individer och samhället över
tid. Ett steg bör vara att ta fram en samhällsekonomisk analys av anhörigomsorgens
konsekvenser för individer och samhälle. Jämställdhetsaspekterna bör särskilt
uppmärksammas i en sådan analys.
Det bör vara lättare att förena anhörigomsorg med arbete
Anhöriga som arbetar och som ger omsorg är i stor utsträckning beroende av sina
arbetsgivares välvilja för att kunna stanna kvar på arbetsmarknaden. Detta då de
förmåner som finns – närståendepenning och rätten till ledighet vid närståendevård
och av trängande familjeskäl – bara täcker delar av anhörigas behov och används i liten
utsträckning. Anhöriga som arbetar är i många fall beroende av att själva kunna styra
sina arbetstider och att ta ledigt med kort varsel. Flera anhöriga tar också ut semester
och flextid för att kunna ge omsorg till sina närstående.
Riksrevisionen rekommenderar att regeringen överväger om delar av
socialförsäkringssystemet och arbetsmarknadslagstiftningen bör anpassas till anhörigas
behov för att underlätta för anhöriga att förena anhörigomsorg med arbete.
Det bästa anhörigstödet är en god vård och omsorg
Riksrevisionen anser att kvalitetshöjande åtgärder inom vård och omsorg är det som
i störst utsträckning skulle förbättra för anhöriga. I intervjuer har det framkommit
att det bästa stödet till anhöriga är en god vård och omsorg om den närstående. Det
handlar om omsorgsinsatser som exempelvis särskilda boenden och hemtjänst,
vårdinsatser som behandling och vårdplatser på sjukhus men också personal med rätt
utbildning och kompetens. Riksrevisionen har inte granskat vården och omsorgen om
den närstående i sig men har valt att redovisa hur viktig vården och omsorgen om den
närstående är för anhörigas situation och behov av stöd.
Det ska vara frivilligt att ge anhörigomsorg i Sverige. Riksrevisionen anser att en
förutsättning för frivillighet är att det finns ett alternativ till anhörigas insatser i form av
en god offentlig vård och omsorg. Riksrevisonens bedömning utifrån intervjuer under
granskningen är att många anhöriga tar på sig ett större ansvar än de egentligen vill på
grund av brister i vården och omsorgen.
Många anhöriga upplever att en av de tyngsta bördorna de har att bära är den
samordnande och koordinerande roll de ofta måste ta på sig. Om anhöriga inte tog på
sig koordinatorrollen skulle mycket falla mellan stolarna. Riksrevisionen menar att
detta är ett svårlöst problem som är kopplat till uppdraget till och organiseringen av
vården och omsorgen.
riksrevisionen granskar: medborgarna och förvaltningen

I Riksrevisionens intervjuer framkommer att anhörigas behov av att bli sedda och
få information och kunskap sällan tillgodoses i kontakter med vård och omsorg.
Vidare framförs i intervjuerna att vårdplaneringar är en situation där många anhöriga
känner sig osynliga. Riksrevisionen rekommenderar att regeringen bör se till att det tas
fram utbildningar för att sprida kunskap till anställda i kommuner och landsting om
anhörigas betydelse för vård och omsorg samt hur vården och omsorgen kan stödja
anhöriga genom bland annat information och bemötande.
De anhöriga som Riksrevisionen har intervjuat upplever att de måste kämpa för att få
de insatser som den närstående behöver från kommunerna och att de befinner sig i ett
kunskapsunderläge i förhållande till kommunerna om vilka insatser den närstående
har rätt till. Anhöriga beskriver också att det är svårt, tidskrävande och påfrestande
att överklaga beslut. Riksrevisionen rekommenderar regeringen att ge Socialstyrelsen i
uppdrag att informera om rätten till stöd och insatser i SoL och LSS och hur praxis ser
ut om regeringen vill underlätta för anhöriga.
Landstingen saknar ett strukturerat arbete med att ge stöd till vuxna anhöriga enligt
Nationellt kompetenscentrum anhöriga, Anhörigas Riksförbund och Socialstyrelsen.
I hälso- och sjukvårdslagen finns endast ett generellt folkhälsoförebyggande uppdrag
och ett uppdrag om att ge stöd till minderåriga barn i vissa situationer. Riksrevisionen
rekommenderar regeringen att överväga om landstingens ansvar för stöd till anhöriga
behöver förtydligas i hälso- och sjukvårdslagen.

BACKGROUND:
The impacts of maternal substance use have been observed in both research and clinical experience. Several studies have shown that preschool children are at heightened risk of developing various cognitive, behavioral, and socioemotional difficulties. Most knowledge has been generated concerning alcohol consumption during pregnancy and the postnatal effects thereof. Less is known about substance use other than alcohol (for instance, opiates, marijuana, and cocaine) during pregnancy and the long-term developmental consequences.
OBJECTIVE:
The aims of this review are to identify relevant published data on adolescents who have been exposed in utero to alcohol and/or other substances and to examine developmental consequences across functions and mental health at this point in life.
METHODS:
PubMed, Embase, and PsychInfo were searched for publications during the period of 1980-2011 and titles and abstracts selected according to prespecified broad criteria.
RESULTS:
Twenty-five studies fulfilled all of the specific requirements and were included in this review. Most research covered prenatal alcohol exposure. Other substances, however, included cocaine, marijuana, opiates, and poly-substances. Results showed that prenatal exposure to alcohol has long-term cognitive, behavioral, social, and emotional developmental consequences depending on amount and timing of exposure in utero. Less evidence exists for long-term consequences of exposure in utero to other substances than alcohol. However, recent brain-imaging studies have provided important evidence of serious effects of other substance exposure on the developing brain and recent follow-up studies have found an association with deficits in language, attention, areas of cognitive performance and delinquent behavior in adolescence.

The expansion of the criminal justice system over the last several decades helped to focus attention on children of incarcerated parents, many of whom have parents with substance abuse problems. Since the 1990's, a national grassroots campaign has been underway to make substance abuse treatment an alternative to incarceration for parents who commit non-violent crimes. The question of interest in this article is what evidence there is, if any, that treating parental substance abuse changes children's outcomes. To answer this question, a systematic search was conducted for evidence that parental substance abuse treatment either (1) prevents children from developing serious problems (e.g., substance abuse, emotional/behavioral problems, and delinquency) or (2) ameliorates problems if children have already developed them. The key finding is that existing research is limited to studies primarily of the birth outcomes of children born to pregnant and perinatal substance-abusing mothers. Little is known about how treating parents' substance abuse problems affects the outcomes of older children or children of substance-abusing fathers.

BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.

Abstract
BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.

The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.

Abstract 
The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Objective

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

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

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

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

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

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

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 overall aim of this thesis was to investigate how persons with dementia and their informal caregivers do every day activities together and to evaluate the result from an intervention designed to encourage mutual engagement. The sample in all four studies consisted of 30 cohabiting couples, where one part was a healthy spouse caring for a partner diagnosed with mild to moderate stage dementia. Study I had a twofold focus: to identify the supportive acts that caregivers spontaneously use in everyday occupations, as well as to describe the consequences of those acts on the person with dementia. Study II describing the individual participants perception of their own, their spouses and their mutual engagements in everyday occupations. In Study III and IV a home-based collaborative intervention including training on a functional as well as activity level, was evaluated. In Study III the effects of the intervention was evaluated through assessing the individual and mutual episodic memory-functions in the persons with dementia and their caregivers. In Study IV the intervention effect on caregivers communication and interaction skills when performing an everyday occupation together with their spouses with dementia was evaluated. The findings in Study I showed that the caregivers to the persons with dementia used a wide range of supports when working together with their partners. Most of these supports were shown to be beneficial to the occupational performance of the person with dementia, although some support that had negative impact on the performance of the latter was identified. The findings in Study II showed that both spouses perceived a loss of social and activity engagements as a consequence of the changes due to one having dementia. The caregivers described dilemmas they faced, but they also had management approaches to handle the altered everyday life. The results in Study III and IV showed that the collaborative intervention had a positive effect on the individual memory-performance of the persons with dementia. Also, Study III showed that the persons with dementia had a learning potential regarding individual episodic memory-functions when included in collaboration. In conclusion, the findings of these studies showed that the persons with dementia and their spouses engagements in everyday occupations were perceived as altered by both of them. The caregivers and the persons with dementia demonstrated different resources in finding strategies to solve the consequences of dementia in their everyday life. The identification of how persons with dementia and their spouses can learn strategies to collaborate might be useful in designing future interventions.

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

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

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.

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

In this article, originally submitted to B J S E's Research Section, Chris Abbott of King's College, London, and Helen Lucey of the Open University report on the outcomes of a survey of special schools in England. The aim of the research, funded by the Nuffield Foundation, was to understand the nature and extent of symbol use for communication and literacy. A questionnaire was used to collect data on topics including: the types of symbols in use; the methodologies operated; ownership of symbol choice; and agreed policies within and outside school. The researchers had an excellent response in this important survey, undertake n after a period of rapid growth in symbol use in special schools and elsewhere. Chris Abbott and Helen Lucey provide a discussion of the results of their survey and of the issues that arise from the findings and the many comments added by respondents. They close their article with a call for further detailed research, both in the UK and in co-operation with practitioners in other countries, into the ways in which symbol use can meet the needs of learners.

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.

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

I en språkutvecklande förskolemiljö ligger fokus på barncentrerad kommunikation där det vardagliga samspelet är grunden. Olika sätt att kommunicera tillåts och uppmuntras. Barn ges möjlighet att använda alla sinnen – kroppsspråk, minspel, röstläge, intonation, beröring, blickkontakt och tecken.

Boken handlar om hur användandet av TAKK stärker kommunikationen i förskolan. TAKK innebär att låna tecken från det svenska teckenspråket och använda dessa tecken som ett alternativ och ett komplement i det kommunikativa samspelet. De viktigaste orden i meningen förstärks med tecken samtidigt som vi talar.

Författaren ger inspiration och konkreta förslag för att komma i gång att arbeta med TAKK i förskolegruppen.

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

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

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

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

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

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

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

The spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses' experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.

BACKGROUND:
This study examined the persistence of attention deficit hyperactivity disorder (ADHD) into adulthood.
METHOD:
We analyzed data from published follow-up studies of ADHD. To be included in the analysis, these additional studies had to meet the following criteria: the study included a control group and it was clear from the methods if the diagnosis of ADHD included subjects who did not meet full criteria but showed residual and impairing signs of the disorder. We used a meta-analysis regression model to separately assess the syndromatic and symptomatic persistence of ADHD.
RESULTS:
When we define only those meeting full criteria for ADHD as having 'persistent ADHD', the rate of persistence is low, approximately 15% at age 25 years. But when we include cases consistent with DSM-IV's definition of ADHD in partial remission, the rate of persistence is much higher, approximately 65%.
CONCLUSIONS:
Our results show that estimates of ADHD's persistence rely heavily on how one defines persistence. Yet, regardless of definition, our analyses show that evidence for ADHD lessens with age. More work is needed to determine if this reflects true remission of ADHD symptoms or is due to the developmental insensitivity of diagnostic criteria for the disorder.

The AML, an l 1-item, 3-factor, quick-screening device for early school maladaptation is described. Test reliability data are reported as well as itemitem and item-scale correlations and factor analytic findings. Norms for Kindergarten-3rd grade are presented, and parametric studies are reported for the variables: sex, grade, and "repeat-in-grade" status. Five additional substantive studies, testifying to the concurrent and empirical validity of the scale, are summarized. Limitations in using the AML are considered. Given its brevity and objectivity, its greatest potentials are in mass, quick-screening of early school dysfunction.

The overall aim of the thesis, with four empirical studies, was to test the applicability of a functional approach in investigating social competence of children in need of special support within the preschool context. The main theoretical framework was systems theory. Study I and II investigated preschool teachers' definitions of children in need of special support and social competence respectively. Study III was a prevalence study investigating the number of children in need of special support based on traditional disability categories and functional difficulties. In study IV the social competence of children perceived to be in need of special support based on traditional categories and functional difficulties was compared using an observational method. The results in study I showed that teachers adopt either a child perspective or an organizational perspective in defining children in need of special support. The child perspective was related to a greater number of children in need of special support in the preschools, indicating that in preschools with several children in need of special support, teachers are more prone on seeing the needs of individual children, as opposed to the needs of the organisation. Study II found that teachers define social competence in young children in terms of intrapersonal skills, or as interpersonal relations. Study III found that the majority of children in need of special support are undiagnosed children with functional difficulties related to speech- and language and peer interaction. Study IV found similar profiles of social competence between diagnosed children and undiagnosed children perceived to be in need of special support. Overall, the results yielded support for adopting a functional approach in studying the social competence of children in need of special support.

AIM: To describe the associations between positive and negative reactions of
informal caregivers of people with dementia and health outcomes across eight
European Countries.
BACKGROUND: Caring for someone with dementia may have implications for the
caregiver's own health and for the care recipient. These consequences could be
associated with caregivers' reactions to the process of care.
DESIGN: Association study based on cross-sectional data.
METHODS: Participants were people with dementia and their informal caregivers
living at home or in long-term care institutions. Data were collected between
November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions
of self-esteem, lack of family support, financial problems, disrupted schedule
and health problems) and associations were sought with informal caregiver burden,
quality of life and psychological well-being and with dementia sufferers'
neuropsychiatric symptoms, comorbidity and dependency in activities of daily
living using correlation coefficients.
RESULTS: Data from 2014 participants were used. Variability across countries was
noted, as well as differences between care at home and in long-term care
institutions. In general, self-esteem and lack of family support correlated with
caregiver burden and psychological well-being. Associations were also found
between disrupted schedule and caregiver burden, psychological well-being and
quality of life. Health problems were clearly associated with caregiver burden,
psychological well-being and quality of life.
CONCLUSION: Study results support links between the reactions of informal
caregivers of people with dementia and health outcomes. These may have
implications in terms of how services are addressed.

OBJECTIVE:
To examine associations between health risk behaviours and suicidal ideation and attempts in Canadian adolescents aged 12 to 13 years. Young adolescents think about and attempt suicide. However, most existing research on suicide has been conducted on individuals aged 15 years and older.
METHOD:
The present study examined a nationally representative Canadian sample of adolescents aged 12 to 13 years (n=2090). Health risk behaviours included disruptive (shoplifting, physical fighting, damaging property, fighting with a weapon, carrying a knife, and gambling), sexual (petting below the waist and sexual intercourse), and substance use behaviours (smoking cigarettes, consuming alcohol, marijuana or hash, and glue or solvents). Unadjusted and adjusted (for all significant health risk behaviour and psychiatric symptoms) models were tested.
RESULTS:
All health risk behaviours were common among male and female adolescents. In unadjusted models, almost all health risk behaviours were associated with suicidal ideation and attempts among adolescent boys. In adjusted models, only damaging property, sexual intercourse, and smoking cigarettes remained statistically associated with suicidal ideation, while smoking cigarettes and using marijuana or hash remained statistically associated with suicide attempts among adolescent boys. All health risk behaviours were statistically associated with suicidal ideation and attempts among female adolescents in unadjusted models. In adjusted models, only carrying a knife remained statistically associated with suicidal ideation, while shoplifting and gambling remained statistically associated with suicide attempts among adolescent girls.
CONCLUSIONS:
Health risk behaviours among young adolescents are associated with suicidal ideation and attempts among young adolescents. Recognizing health risk behaviours among young adolescents may be one means of understanding who among them is at increased risk of suicidality.

Abstract
OBJECTIVE:
To evaluate the 3 alcohol consumption questions from the Alcohol Use Disorders Identification Test (AUDIT-C) as a brief screening test for heavy drinking and/or active alcohol abuse or dependence.
METHODS:
Patients from 3 Veterans Affairs general medical clinics were mailed questionnaires. A random, weighted sample of Health History Questionnaire respondents, who had 5 or more drinks over the past year, were eligible for telephone interviews (N = 447). Heavy drinkers were oversampled 2:1. Patients were excluded if they could not be contacted by telephone, were too ill for interviews, or were female (n = 54). Areas under receiver operating characteristic curves (AUROCs) were used to compare mailed alcohol screening questionnaires (AUDIT-C and full AUDIT) with 3 comparison standards based on telephone interviews: (1) past year heavy drinking (>14 drinks/week or > or =5 drinks/ occasion); (2) active alcohol abuse or dependence according to the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition, criteria; and (3) either.
RESULTS:
Of 393 eligible patients, 243 (62%) completed AUDIT-C and interviews. For detecting heavy drinking, AUDIT-C had a higher AUROC than the full AUDIT (0.891 vs 0.881; P = .03). Although the full AUDIT performed better than AUDIT-C for detecting active alcohol abuse or dependence (0.811 vs 0.786; P<.001), the 2 questionnaires performed similarly for detecting heavy drinking and/or active abuse or dependence (0.880 vs 0.881).
CONCLUSIONS:
Three questions about alcohol consumption (AUDIT-C) appear to be a practical, valid primary care screening test for heavy drinking and/or active alcohol abuse or dependence.

We conducted a pragmatic, mixed methods study comparing rural family caregivers
receiving e-health caregiver support (n = 35) with a control group (n = 21)
receiving conventional, non-e-health, caregiver support. After 18 months, the
benefits of support were evaluated using the Care Effectiveness Scale (40-items
exploring the domains of preparedness, enrichment and predictability). In all
domains the e-health group scored significantly higher than the control group.
The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale
0-10. In addition, semi structured interviews were conducted with a sub-sample of
the caregivers. For the e-health group flexibility, availability and being able
to individualise the support were essential factors. All caregivers in the
control group found conventional support to be beneficial, but also stressed
unmet needs related to the conventional support being standardised and
non-flexible. The study suggests that providers of caregiver support should offer
e-health support as an alternative to conventional caregiver support, as it can
be more beneficial to family caregivers.

This is an introductory report for the Brief Symptom Inventory (BSI), a brief psychological self-report symptom scale. The BSI was developed from its longer parent instrument, the SCL-90-R, and psychometric evaluation reveals it to be an acceptable short alternative to the complete scale. Both test--retest and internal consistency reliabilities are shown to be very good for the primary symptom dimensions of the BSI, and its correlations with the comparable dimensions of the SCL-90-R are quite high. In terms of validation, high convergence between BSI scales and like dimensions of the MMPI provide good evidence of convergent validity, and factor analytic studies of the internal structure of the scale contribute evidence of construct validity. Several criterion-oriented validity studies have also been completed with this instrument.

Atherothrombosis is a potentially life-threatening generalised disease process that affects the coronary, cerebral and peripheral vasculature, with clinical manifestations including myocardial infarction, ischaemic stroke and peripheral arterial disease. Atherothrombosis represents a massive clinical and economic burden to healthcare, annually accounting for at least 22% of all deaths globally. Moreover, the prevalence of atherothrombotic disease is increasing as a result of increased longevity resulting in a larger cohort of older individuals. Stroke in particular is a major burden, and is the primary cause of adult disability, the second most important cause of dementia, and the third leading cause of death in industrialised countries. Atherothrombosis is also associated with a poor prognosis, significantly reducing life expectancy in the 60-year-old patient by 8–12 years depending on the vascular event. Moreover, this already shortened life expectancy is further and substantially reduced in patients with more than one atherothrombotic event. The economic burden of atherothrombosis is significant, particularly given its increasing prevalence, with the United States spending over US$300 billion on it. There is thus a need for effective intervention to prevent or reduce mortality and morbidity. Evidence-based medicine using economics, clinical trials data, outcomes research, epidemiology and risk stratification are necessary to target treatment effectively to patients at greatest risk, in an attempt to reduce the burden of atherothrombotic disease.

In recent years in Italy, population ageing, rising female labour-market participation, and the restructuring of the welfare state have combined to create increased demand for long-term care services for frail and dependent older people. The rising demand has increasingly been met by immigrant women of different nationalities, and to a lesser extent immigrant men, who are hired to provide individualised care in people's own homes and other private settings. While there have been many studies of this growing phenomenon, very little attention has been paid to the reasons that bring family care-givers to choose this care-support option. To begin to fill the gap, this paper reports the finding of a qualitative study of 26 family members who were caring for a disabled elder. Semi-structured interviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responses indicate that they did not choose immigrant home eldercare assistants solely for economic reasons but also to be consistent with cultural, moral and traditional understandings of family responsibilities and care. They also provide valuable findings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection for the free-market and a desire to bypass the state, the majority of the respondents advocated a stronger role of the welfare state in helping people cope with the increased burden of long-term care.

In recent years in Italy, population ageing, rising female labour-market partici-pation, and the restructuring of the welfare state have combined to create in-creased demand for long-term care services for frail and dependent older people.The rising demand has increasingly been met by immigrant women of differentnationalities, and to a lesser extent immigrant men, who are hired to provideindividualised care in people's own homes and other private settings. While therehave been many studies of this growing phenomenon, very little attention hasbeen paid to the reasons that bring family care-givers to choose this care-supportoption. To begin to fill the gap, this paper reports the finding of a qualitative studyof 26 family members who were caring for a disabled elder. Semi-structuredinterviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responsesindicate that they did not choose immigrant home eldercare assistants solely foreconomic reasons but also to be consistent with cultural, moral and traditionalunderstandings of family responsibilities and care. They also provide valuablefindings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection forthe free-market and a desire to bypass the state, the majority of the respondentsadvocated a stronger role of the welfare state in helping people cope with theincreased burden of long-term care.

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

Abstract
BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia

The 30-item Children of Alcoholics Screening Test (CAST) is shortened to a 6-item scale (CAST-6) using Principal Components Analysis of CAST responses for three distinct samples: outpatient substance abusers, outpatient psychiatric patients, and medical students. The face validity, internal consistency, and discriminatory ability of the CAST-6 are examined. The CAST-6 is judged to compare favorably with the full CAST and to provide a more efficient way to identify adult children of alcoholics.

Children of alcoholics are commonly pictured as destined to become alcoholics themselves and to develop psychological problems. Research on children of alcoholics, however, has not strongly supported this impression. Rather, there is good reason to believe that children of alcoholics develop a checkerboard of strengths and weaknesses. Although the weaknesses are adequately explained by a traditional risk paradigm that we have called the damage model, the strengths are overlooked. The challenge model and its related vocabulary of strengths extends the damage model by including the possibility that children of alcoholics and other children of hardship can be resilient as well as vulnerable. The model offers a developmental vocabulary of resilience. The challenge model implies that psychiatrists should not launch exclusively a search for pathology in children of alcoholics, but should ask questions of patients more along the line of 'How is your struggle going?'

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.

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1748-3743.2007.00092.x Byline: Henrik Eriksson, Jonas Sandberg Keywords: caring; gender; informal care; nursing home Abstract: Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers. Article History: Submitted for publication: 21 November 2006 Accepted for publication: 25 June 2007 Article note: Henrik Eriksson, Department of Caring and Public Health Sciences, Malardalen University, Box 325, 631 05, Eskilstuna, Sweden, Telephone: +46 16 153747, E-mail: henrik.eriksson@mdh.se

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

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.

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

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

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

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

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

Traveller information designed to fulfil needs and expectations of individual travellers is a key factor in improving access for older people and people with disabilities to public transport. The overall aim of this thesis is to contribute to the knowledge of user and provider perspectives on the provision of traveller information for older people and people with disabilities in public transport with a focus on use and provision of such traveller information through online traveller information services. The research work is based on perceptions of older people and people with disabilities, together with experts' views on the implementation process. Both qualitative methods (interviews, focus group interviews, group discussions, workshops) and quantitative methods (questionnaires) were used. The substantial influence on the travel of older people and people with disabilities of use of online traveller information services is the empowerment of those of the older travellers and travellers with disabilities that are anxious and insecure before a journey. Through better access of traveller information offered by online traveller information services these travellers can find what they need to build their confidence before a journey and subsequently be supported in their roles as travellers. That is, when they do travel in public transport they want to be able to do so safely and with confidence; they do not necessarily want to increase the number of journeys they undertake. Thus, theoretically the concept of motility has higher relevance for this particular group of travellers than the concept of mobility. The exploration of the traveller information content shows that even though the need to plan and prepare for a journey seems to be equally important for the whole group of older people and people with disabilities as it is for subgroups based on functional limitations, the importance and the intended use of the traveller information differ between groups as the focus shifts from comfort information on an aggregated level to an increasing importance of accessibility information for subgroups. Both the comfort information and the absolute information enable assessment of the effort required to carry through a journey. This is decisive for the choice to travel, but the traveller information focused on comfort relates more to the individual choice to travel while absolute traveller information enables the traveller to assess whether travel is possible at all. Finally, to be accessed the traveller information needed by older people and people with disabilities need to be implemented. The inertia of the implementation process was explored through conflicts of interest that can help forward barriers in the implementation process. The findings point to there being a verbal problem in policies, legislation and guidelines that leave room for interpretation of the necessity of implementation of measures like traveller information needed by older people and people with disabilities. Finally this thesis carries implications for further research within all three areas that have been researched

Abstract
OBJECTIVE:
To examine the potential efficacy and specific timing of treatment response of individual child and parent trauma-focused cognitive-behavioral therapy for childhood traumatic grief (CTG), a condition in which trauma symptoms impinge on the child's ability to successfully address the normal tasks of grieving.
METHOD:
Twenty-two children and their primary caretakers received a manual-based 16-week treatment with sequential trauma- and grief-focused interventions.
RESULTS:
Children experienced significant improvements in CTG, posttraumatic stress disorder (PTSD), depressive, anxiety, and behavioral problems, with PTSD symptoms improving only during the trauma-focused treatment components and CTG improving during both trauma- and grief-focused components. Participating parents also experienced significant improvement in PTSD and depressive symptoms.
CONCLUSIONS:
The timing of improvements in CTG and PTSD symptoms lends support to providing sequential trauma- and grief-focused interventions and to the concept that CTG is related to but distinct from PTSD. The results also suggest the benefit of individual treatment for CTG and for including parents in the treatment of CTG. Randomized, controlled trials are needed to further test the efficacy of this treatment model.

The purpose of this study was to determine whether Learning Sobriety Together, a treatment for substance abuse that combines behavioral couples therapy and individual counseling, had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus preadolescent siblings living in homes with their alcoholic fathers (N = 131) and their non-substance-abusing mothers. During a 17-month assessment period, the association between parents' functioning (i.e., fathers' drinking as determined by percentage of days abstinent and parents' dyadic adjustment) and children's adjustment (as rated by mothers, fathers, and children's teachers) was stronger for preadolescents than for their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drinking and improve couple functioning may serve as an important preventative intervention for preadolescents in these homes, whereas adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

The focus of this study was whether couples-based treatment for substance abuse had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus child siblings living in their homes. Couples took part in a couples-based treatment for substance abuse that combines Behavioral Couples Therapy and individual counseling (i.e., Learning Sobriety Together). During a 17-month assessment period, the relationship between parents' functioning (i.e., fathers' drug use as determined by percent days abstinent and parents' dyadic adjustment) as rated by mothers, fathers, and children's teachers and internalizing behavior (as rated by mothers' only) was stronger for children than their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drug use and improve couple functioning may reduce internalizing and externalizing symptoms for children in their homes; however, adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

Keywords: Children of drug abusers, Couples therapy

This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.

OBJECTIVE:
Knowledge of factors associated with treatment dropout and missed appointments in adults with attention-deficit/hyperactivity disorder (ADHD) is very limited. On the basis of proposed hypotheses that past behavior patterns are more predictive of current behaviors of treatment dropout and missed appointments than are sociodemographic and clinical characteristics, we examined the associations of sociodemographic variables, clinical variables, risk-taking behavior, educational and occupational instability, and behaviors during mandatory schooling with the primary outcome measures of treatment dropout and missed appointments.

METHOD:
In a naturalistic cohort study of 151 adult outpatients with ADHD initiating assessment in a Danish ADHD unit from September 1, 2010, to September 1, 2011, the Adult ADHD Self-Report Scale v1.1 symptom checklist (ASRS) and a thorough clinical interview were used to assess ADHD according to DSM-IV-TR criteria. Stepwise logistic regression analysis was used to estimate reported associations.

RESULTS:
A total of 27% of patients dropped out of treatment and a total of 42% had ≥ 3 missed appointments during treatment. Mood and anxiety disorders significantly lowered the odds of treatment dropout (odds ratio [OR] = 0.18; 95% confidence interval [CI], 0.05-0.65), whereas having started but not completed 2 or more educational programs apart from mandatory schooling significantly increased the odds of dropout (OR = 3.01; 95% CI, 1.32-6.89). Variables significantly associated with most missed appointments were low educational level (OR = 2.19; 95% CI, 1.12-4.31), 3 or more employments of less than 3 months' duration (OR = 2.86; 95% CI, 1.30-6.28), and having skipped class often/very often during mandatory schooling (OR = 2.65; 95% CI, 1.29-5.43). Additionally, the predominantly inattentive ADHD (ADHD-I) subtype lowered the odds of missed appointments (OR = 0.17; 95% CI, 0.05-0.62).

CONCLUSION:
Our results suggest that past behavior in terms of highest dropout rates in the educational and occupational systems and highest rates of skipping class during mandatory schooling is equally associated with current behavior of treatment dropout and missed appointments as are sociodemographic and clinical factors.

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

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

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

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

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

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

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

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

Akad. Avh.

The purpose of this research was to examine the effects of peer bereavement support groups for parentally bereaved children, specifically in the areas of self-esteem, depression, and behavior. The sample was drawn from middle school students in a suburban school district who have experienced the death of a parent sometime during their life. Seventeen students were assigned to four groups. Pretesting and posttesting were done utilizing the Piers-Harris Self-Concept Scale, the Child Behavior Checklist (which includes a Teacher Report Form and a Youth Report Form), the Children's Depression Scale, and a Support Group Rating Scale to measure if participation affected sense of isolation, contributed to normalizing the death experience, and provided a comfortable environment in which to practice newly acquired coping skills. The posttest data from all but the Support Group Rating Scale was analyzed using a two-way analysis of variance (ANOVA). The Support Group Rating Scale was analyzed by comparing percentages of responses in the pretest and posttest data. The Support Group Rating Scale responses were also analyzed using nonparametric tests. The postintervention statistical analysis failed to show any statistically significant effect on any of the hypotheses except one item on the Support Group Rating Scale. This item (13) death with a participant's belief about his or her ability to cope with loss. Information evaluation of the Support Group Rating Scale and the evaluations indicate positive effect. Recommendations based on results are discussed.

We assess evidence for gender differences across a range of relationships and consider whether the form and quality of these relationships affect the psychological functioning of men and women differently. Data from a national panel survey provide consistent evidence that men's and women's relationships differ. However, we find little evidence for the theoretical argument that women are more psychologically reactive than men to the quality of their relationships: Supportive relationships are associated with low levels of psychological distress, while strained relationships are associated with high levels of distress for women and for men. However, if women did not have higher levels of social involvement than men, they would exhibit even higher levels of distress relative to men than they currently do. We find little evidence for the assertion that men and women react to strained relationships in gender-specific ways--for example, with alcohol consumption versus depression.

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

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

Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a manualized program of education and support designed for caregivers of veterans with moderate-to-severe dementia. One hundred fifty-eight spousal caregivers were randomly assigned to either the ten 1-hr sessions of TEP or the usual care (UC). Health care utilization and cost data were extracted from veterans Information System Technology Architecture databases and included outpatient, inpatient, and nursing home data within the VA. Results: Total health care cost data showed a significant (p = .039) average cost savings of $2,768 per patient at 6 months for TEP as compared with UC, but these were not maintained at 1 year. All costs included in the total costs measure contributed to this difference. Inpatient, outpatient, and nursing home costs were all assessed separately, but only nursing home costs reached significance (p = .009), with a savings of $1,057 per patient at 6 months. Implications: The TEP caregiver intervention resulted in short-term cost savings for veteran care recipients. Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes.

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

This review updates a similar paper published in the Journal of Family Therapy in 2001. It presents evidence from meta-analyses, systematic literature reviews and controlled trials for the effectiveness of systemic interventions for families of children and adolescents with various difficulties. In this context, systemic interventions include both family therapy and other family-based approaches such as parent training. The evidence supports the effectiveness of systemic interventions either alone or as part of multimodal programmes for sleep, feeding and attachment problems in infancy; child abuse and neglect; conduct problems (including childhood behavioural difficulties, ADHD, delinquency and drug abuse); emotional problems (including anxiety, depression, grief, bipolar disorder and suicidality); eating disorders (including anorexia, bulimia and obesity); and somatic problems (including enuresis, encopresis, recurrent abdominal pain, and poorly controlled asthma and diabetes).

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

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

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

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

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

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

This study examines the effects of child abuse and domestic violence exposure in childhood on adolescent internalizing and externalizing behaviors. Data for this analysis are from the Lehigh Longitudinal Study, a prospective study of 457 youth addressing outcomes of family violence and resilience in individuals and families. Results show that child abuse, domestic violence, and both in combination (i.e., dual exposure) increase a child's risk for internalizing and externalizing outcomes in adolescence. When accounting for risk factors associated with additional stressors in the family and surrounding environment, only those children with dual exposure had an elevated risk of the tested outcomes compared to non-exposed youth. However, while there were some observable differences in the prediction of outcomes for children with dual exposure compared to those with single exposure (i.e., abuse only or exposure to domestic violence only), these difference were not statistically significant. Analyses showed that the effects of exposure for boys and girls are statistically comparable.

This meta-analysis summarizes results from k = 24 studies comparing either Brief Strategic Family Therapy, Functional Family Therapy, Multidimensional Family Therapy, or Multisystemic Therapy to either treatment-as-usual, an alternative therapy, or a control group in the treatment of adolescent substance abuse and delinquency. Additionally, the authors reviewed and applied three advanced meta-analysis methods including influence analysis, multivariate meta-analysis, and publication bias analyses. The results suggested that as a group the four family therapies had statistically significant, but modest effects as compared to treatment-as-usual (d = 0.21; k = 11) and as compared to alternative therapies (d = 0.26; k = 11). The effect of family therapy compared to control was larger (d = 0.70; k = 4) but was not statistically significant probably because of low power. There was insufficient evidence to determine whether the various models differed in their effectiveness relative to each other. Influence analyses suggested that three studies had a large effect on aggregate effect sizes and heterogeneity statistics. Moderator and multivariate analyses were largely underpowered but will be useful as this literature grows.

This meta-analysis summarizes results from k = 24 studies comparing either Brief Strategic Family Therapy, Functional Family Therapy, Multidimensional Family Therapy, or Multisystemic Therapy to either treatment-as-usual, an alternative therapy, or a control group in the treatment of adolescent substance abuse and delinquency. Additionally, the authors reviewed and applied three advanced meta-analysis methods including influence analysis, multivariate meta-analysis, and publication bias analyses. The results suggested that as a group the four family therapies had statistically significant, but modest effects as compared to treatment-as-usual (d = 0.21; k = 11) and as compared to alternative therapies (d = 0.26; k = 11). The effect of family therapy compared to control was larger (d = 0.70; k = 4) but was not statistically significant probably because of low power. There was insufficient evidence to determine whether the various models differed in their effectiveness relative to each other. Influence analyses suggested that three studies had a large effect on aggregate effect sizes and heterogeneity statistics. Moderator and multivariate analyses were largely underpowered but will be useful as this literature grows.

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

The purpose of this study was to measure the effects of music therapy-based bereavement groups on mood and behavior of grieving children. Eighteen subjects were assigned to one of two groups: experimental (8 sessions of group music therapy) or control (no group music therapy). All subjects participated in a battery of psychometric tests which measured behavior, mood, and grief symptoms for both pretests and posttests. Statistical analysis indicated a significant difference among subjects in the experimental group for the Behavior Rating Index for children in the home environment and the Bereavement Questionnaire for Parents/Guardians. Although there were no statistically significant differences,mean scores on the Depression Self-Rating Index and the Behavior Rating Index for children in the school environment of the experimental group dropped following treatment. The investigator concluded that participation in music therapy based bereavement groups served to reduce grief symptoms among the subjects as evaluated in the home. Teacher and self-evaluations were less conclusive. Further research studying the effects of music therapy on grieving children is recommended.

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

BACKGROUND: In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. PURPOSE: We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included. METHODS: The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity. RESULTS: The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe. CONCLUSIONS: These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.

Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.

Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.

OBJECTIVES: The aim was to describe the existential life situations of spouses
who care for persons with dementia, before and after relocation to nursing homes.
METHOD: This was a qualitative study among 11 spouses of persons with dementia,
recruited via purposeful sampling. Data were collected through interviews and
analysed with interpretive content analysis.
RESULTS: Before the relocation to nursing homes, the spouses' existential life
situations were characterized by feelings of shame and guilt, being isolated in
the home. Spouses were also exposed to psychological threats, physical violence,
and had feelings of placing one's own needs last. After the relocation, spouses
described feelings of guilt and freedom, living with grief and thoughts of death,
feelings of loneliness in the spousal relationship, and striving for acceptance
despite a lack of completion.
CONCLUSION: The existential life situation of spouses of persons with dementia is
about being in limit situations which changes when the ill person relocates to a
nursing home. This is important knowledge for health care staff to bear in mind
at nursing homes when encountering spouses.

Abstract [en]
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

Abstract [en]

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

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

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

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

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

Gothenburg Monographs in Linguistics 42; Institutionen för filosofi, lingvistik och vetenskapsteori

An activity-based vocabulary for Voice Output Communication Aids (VOCAs) was designed and evaluated through a user-centred, iterative design process, using expressions from the Gothenburg Spoken Language Corpus as well as other recorded, natural conversations. The growth and development of the vocabulary, called Phrases, was closely linked to its evaluation. The iterative design process included prototyping, collaboration with users, and modifications to the different versions of Phrases. The aims of the thesis were to investigate and visualise what goes on in interactions involving VOCAs, investigate the utility of a spoken language corpus in constructing AAC vocabulary, to evaluate the usability of Phrases, and to compare the effectiveness and efficiency of phrase creation to that of phrase selection. Four young adults with cerebral palsy, who used Augmentative and Alternative Communication (AAC), took part in the evaluation, as did sixty adults without speech impairments. The Phrases vocabulary was primarily built around pre-stored expressions for shop interactions and general quickfire expressions, including greetings, acknowledgements, feedback and expressions for communication management. It was tested in real and role-played shopping activities, and in an experiment. The results showed that phrase selection under certain circumstances can be faster than phrase creation, and that pre-stored phrases can enhance both the speed and enjoyment of VOCA-mediated conversations, providing that the users have learned where to find the expressions. The quickfire section was appreciated by all participants, but the activity shopping turned out to be of lesser importance to the four participants using AAC than was presumed from the beginning. Using a VOCA in a service encounter such as shopping turned out to be a complex undertaking for individuals with severe motor impairments. A model from Cultural-Historical Activity Theory provided useful insights into the contributing factors. The evaluations of the second version of Phrases gave valuable suggestions for the modification of future versions, such as making the activity structure more transparent, keeping phrases which were used while removing others, and adding new activities. Sammanfattning på svenska: Avhandlingen "The Growth of Phrases. User-centred Design for Activity-based Voice Output Communication Aids" presenterar och analyserar vokabulär för talande samtalshjälpmedel som designats och utvärderats genom en användarcentrerad, iterativ designprocess. Vokabuläret, som kallas Phrases (fraser), är baserat på yttranden från Göteborgs Talspråkskorpus och andra inspelningar av naturliga samtal. Den iterativa designprocessen bestod av prototyputveckling, successiv utvärdering, samarbete med användare samt modifieringar av de olika versionerna av Phrases. Målen för avhandlingen var att undersöka och visualisera vad som sker i samspel där talande samtalshjälpmedel finns med, undersöka nyttan av en talspråkskorpus för att skapa vokabulär för AKK (Alternativ och Kompletterande Kommunikation), utvärdera användbarheten hos Phrases och att undersöka hur verkningsfullt och effektivt det är att välja bland fraser jämfört med att själv skapa dem. Fyra unga vuxna med cerebral pares, som använde AKK, och sextio vuxna personer utan talsvårigheter deltog i utvärderingen. Vokabuläret Phrases var främst uppbyggt kring färdiga uttryck för att samtala i affär, kompletterade med allmänna snabbuttryck ("quickfires") för att hälsa, tacka, ge återkoppling och hantera kommunikationen. Phrases testades i verkliga affärssituationer och i rollspel samt i ett experiment. Resultaten visade att det under vissa omständligheter kan vara snabbare att använda färdiga fraser än att skapa dem ord för ord, och att färdiga fraser kan öka både hastigheten och nöjet i att använda samtalshjälpmedel, förutsatt att användarna har lärt sig var de ska hitta uttrycken. Modulen med snabbuttryck uppskattades av alla deltagare, men själva aktiviteten att handla i affär var inte så viktig som förväntat för de fyra AKK-användarna. Att som kund använda samtalshjälpmedel i en affär påverkades i praktiken av många faktorer. För att undersöka hur dessa hängde samman användes en modell från kulturhistorisk aktivitetsteori som gav värdefulla insikter. Utvärderingen av version nummer två av Phrases pekade mot att aktivitetsstrukturen behöver göras ännu tydligare i framtida versioner. Flertalet fraser bör bibehållas, men somliga kan tas bort och nya aktiviteter bör läggas till.

The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.

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

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.

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.

This study evaluated the long-term effects of Project SUPPORT, an intervention designed to reduce conduct problems among children in domestically violent families. Participating mothers had sought shelter because of domestic violence and had at least one child (4-9 years old) exhibiting clinical levels of conduct problems. Results indicated that at 2 years posttreatment, 15% of children in families in the Project SUPPORT condition exhibited clinical levels of conduct problems compared with 53% of those in the existing services condition. In addition, mothers of children in the Project SUPPORT condition reported their children to be happier, to have better social relationships, and to have lower levels of internalizing problems, relative to children in the comparison condition. Mothers in the Project SUPPORT condition were less likely to use aggressive child management strategies and were less likely to have returned to their partners during the follow-up period.

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

Purpose/Objectives: To develop and test the efficacy of a Web-based intervention for alleviating depression in male stroke survivors (SSs) and their spousal caregivers (CGs) that blends both peer and professional support. Design and Methods: The research consisted of an intervention protocol evaluated by a focus group of rehabilitation professionals, a "think aloud" session conducted with female stroke CGs, and a usability test of the intervention's online features with 7 female stroke CGs. Efficacy of the final protocol was tested in a 2-group randomized clinical trial with a sample of 32 CG–SS dyads. The CGs in the intervention condition received an online group intervention. Intervention components were based on the Stress Process Model. Those CGs in a control condition received minimal support with individualized access to relevant online information. Measures of depression, as well as the secondary outcomes of mastery, self-esteem, and social support, were obtained from SSs and CGs at pretest, posttest, and 1-month later. Results: At posttest and 1 month later, CGs in the intervention condition reported significantly lower depression than CGs in the control condition with baseline depression controlled. There was no significant effect on depression among SSs. Although no significant treatment effects for either SSs or CGs were found on the secondary outcomes, posttreatment changes on some constructs were significantly correlated with change in depression. Conclusions/Implications: CGs benefit from Web-based programs that help them better understand both their emotional needs and those of the SS. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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

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

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

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

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

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

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.

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.

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

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

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.

Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att kommunerna ska erbjuda stöd till personer som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid fått en tydligare struktur och integrerats i kommunernas planer och styrdokument. Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna har inrättat tjänster, förbättrat informationen om stödet och arbetar med att införa ett anhörigperspektiv i alla verksamheter. Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen i stor utsträckning, men i funktionshindersverksamheten och individ- och familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar bestämmelsen i liten utsträckning. Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov av stöd, men det kan också bero på brister i samarbetet mellan handläggarna, anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga. Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen om stöd och service till vissa funktionshindrade (1993: 387), och därmed även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som enbart har socialtjänstinsatser och deras anhöriga. På motsvarande sätt uppger individ- och familjeomsorgen att stödet till anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför det arbetet något. Den framhåller missbruksvården, där det finns ett stort utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och familjeomsorgen beskriver däremot stora problem med att nå anhöriga till personer inom socialpsykiatrin. Får anhöriga stöd? I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser. Resultaten hittills pekar att olika former av anhörigstöd är en mycket omfattande verksamhet i kommunerna. Det saknas däremot underlag för att beskriva det stöd som ges till anhö-riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går det inte att ta fram dessa uppgifter i den officiella statistiken över social-tjänstens insatser. Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla socialtjänststatistiken och ta fram en plan för statistiken beträffande kommunernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprövade. Hälso- och sjukvården och anhöriga Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården och inte minst primärvården, och därmed spelar sjukvården en viktig roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock inte lyckats etablera samarbete med hälso- och sjukvården i någon större utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder sällan till ett systematiskt samarbete kring anhörigstödet. Det grundläggande problemet är att det saknas en struktur och rutiner för samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhöriga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens roll när det gäller stöd till anhöriga. Socialstyrelsens slutsatser Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar att kommunerna behöver ytterligare vägledning i hur de ska tillämpa bestämmelsen i SoL. Kommunerna behöver fortsätta att utveckla formerna för bemötandet av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna samt utveckla informationen om det stöd som finns att få och se till att den når fram. Hälso- och sjukvården behöver utveckla formerna för bemötande av anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjuk-vården och socialtjänsten samarbetar för den anhörigas och närstå-endes bästa. För att även inspirera hälso- och sjukvården i dess arbete med stöd till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa exempel på hur sådant arbete har byggts upp runt om i landet. Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-, frivillig- och pensionärsorganisationers behov av information genom att ta fram en informationsskrift om bestämmelsen. Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser för att ge kommunerna ytterligare vägledning när det gäller att införa bestämmelsen om stöd till anhöriga.

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

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

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.

BACKGROUND:
United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM:
To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS:
The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS:
Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS:
Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.

The Moving Parents and Children Together (M-PACT) programme is one of the growing number of interventions tailored to meet the multiple and complex needs of children and families affected by parental substance misuse. This paper pulls together the qualitative findings from 13 evaluated M-PACT programmes in England. Sixty-four families attended an M-PACT programme, including 82 children and 75 adults. Qualitative data were collected from 37 children, 36 adults and over 30 group facilitators. Six themes are discussed: engaging with M-PACT, shared experiences, understanding addiction, changes in communication, healthier and united families, and ending M-PACT. The majority of families benefitted in a range of ways from the programme: meeting others who were experiencing similar problems, greater understanding about addiction and its impact on children and families improving communication within the family. In many families there was more openness and honesty, stronger relationships and more time as families, and a reduction in arguments and conflict. The key findings are discussed in terms of the potential for interventions of this kind to reduce family-related harm from parental substance misuse.

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

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.

Argues that the well-documented sex difference in depression may be due to a sex difference in susceptibility, in precipitating factors, or in both. Data from a large mental health survey (2,515 White over-18 residents of 2 cities) were used to study precipitating factors. It was found that women were exposed more often to more of the factors that relate to depression; with a few exceptions, the factors related to depression similarly for men and women. Matching on these factors did not eliminate the sex difference in depression. This suggests that there may be a sex difference in susceptibility. Current theories of depression are incorporated into a sequential model of how learned factors might contribute both to susceptibility and to the sex difference. (14 ref) (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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.

Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.

Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.

Många barn med flerfunktionsnedsättning behöver synstimulering. Handboken Synstimulering – den tidiga utvecklingen av Gunilla Jangdin går igenom det lilla barnets synutveckling och visar hur synstimulans och samspel kan utvecklas trots omfattande flerfunktionsnedsättning i kombination med en synskada. Det är en lättläst och mycket användbar bok för alla föräldrar som vill förstå och stimulera sitt barns utveckling.

Background Mood and anxiety disorders, and problems with self-harm are significant and serious issues that are common in young people in the Criminal Justice System. Aims To examine whether interventions relevant to young offenders with mood or anxiety disorders, or problems with self-harm are effective. Method Systematic review and meta-analysis of data from randomised controlled trials relevant to young offenders experiencing these problems. Results An exhaustive search of the worldwide literature (published and unpublished) yielded 10 studies suitable for inclusion in this review. Meta-analysis of data from three studies (with a total population of 171 individuals) revealed that group-based Cognitive Behaviour Therapy (CBT) may help to reduce symptoms of depression in young offenders. Conclusions These preliminary findings suggest that group-based CBT may be useful for young offenders with such mental health problems, but larger high quality RCTs are now needed to bolster the evidence-base.

Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.

Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.

I slutet av 2012 kom Socialstyrelsen ut
med rapporten Effekter av stöd till anhö
-
riga som vårdar äldre med demenssjukdom
eller sköra äldre – en systematisk översikt.
Syftet med översikten var att utvärdera effekter
av utbildningsprogram, psykosocialt
stöd och kombinationsprogram som ges till
anhöriga som vårdar sköra äldre eller äldre
med demenssjukdom. I översikten under
-
söktes enbart studier som mätt effekter både
för den anhöriga och för
den närstående sjuka.

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

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

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

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

Så väljer du rätt äldreomsorg - en guide för äldre och anhöriga är en enkel och matnyttig guide för dig som funderar på hur du vill ha det när du blir äldre.

Boken ger dig tips och råd när du ska välja äldreomsorg - åt dig själv eller åt en närstående. Den är lätt att slå i och kan läsas från början till slut eller i valda delar beroende på dina behov eller önskemål. Vad finns det för olika slags hjälp att få? Vad har du för rättigheter och vad är rimligt att begära? Vad är viktigt att tänka på när du ska välja mellan olika utförare? Vad gör du som anhörig om du inte är nöjd med den vård som din närstående får? Dessa frågor och många fler besvaras i boken.

Precis som vi behöver information inför till exempel föräldraskap och skolstart behöver vi också vägledning inför ålderdomen. Det kan vara mycket att sätta sig in i, men med boken Så väljer du rätt äldreomsorg får du en bra översikt och en god förberedelse inför dina vägval.

Claes Björck är beteendevetare och konsult med lång erfarenhet som chef både inom den kommunala och inom den privata äldreomsorgen. Anna Bidö är frilansjournalist med många års erfarenhet av arbete som vårdbiträde inom äldreomsorgen.

Målet med Lagen om stöd och service för vissa funktionshindrade, LSS, är att den enskilde får möjlighet att leva som andra. Genom speglingar av parallella plan; den officiella lag- och konventionstexten; forskning; gestaltade vardagssituationer och dagboksutdrag, undersöker författaren vad LSS innebär i praktiken.

Förutom LSS' honnörsord leva som andra; delaktighet; integritet; självbestämmande och kontinuitet, berörs även angelägna frågor som bemötande; hälsa; kommunikation; att vara anhörig (föräldra- och syskonperspektivet) och acceptans av en annorlunda livssituation.

"Så är det", som Simon ofta säger när han, lite förnöjt, konstaterar att saker och ting förhåller sig på ett visst sätt.

Boken vänder sig i första hand till dig som i ditt arbete möter barn eller vuxna med utvecklingsstörning och deras anhöriga. En annan viktig målgrupp är beslutsfattare; politiker och chefer.

Eva Borgström är socionom med lång erfarenhet av arbete inom funktionshinderrörelsen. Hon är också mamma till bokens huvudperson, Simon.

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

Den här skriften vill visa hur alla de olika insatser som görs för barn och unga med funktionshinder kan samverka för att vara väl sammansatta, komma i rätt tid och överensstämma med barnets och ungdomens faktiska behov vid det aktuella tillfället. För att det ska vara möjligt måste alla de verksamheter och professionella som ger stöd se helheten i barnets situation, den helhet som vardagen utgör. Med ett sådant perspektiv och med en förståelse för den egna verksamhetens roll i helheten, finns en grund för att ta ansvar för samverkan.

Background
Aboriginal Australians experience a disproportionately high burden of alcohol-related harm compared to the general Australian population. Alcohol treatment approaches that simultaneously target individuals and families offer considerable potential to reduce these harms if they can be successfully tailored for routine delivery to Aboriginal Australians. The Community Reinforcement Approach (CRA) and Community Reinforcement and Family Training (CRAFT) are two related interventions that are consistent with Aboriginal Australians' notions of health and wellbeing. This paper aims to describe the process of tailoring CRA and CRAFT for delivery to Aboriginal Australians, explore the perceptions of health care providers participating in the tailoring process, and their experiences of participating in CRA and CRAFT counsellor certification.

Methods
Data sources included notes recorded from eight working group meetings with 22 health care providers of a drug and alcohol treatment agency and Aboriginal Community Controlled Health Service (November 2009-February 2013), and transcripts of semi-structured interviews with seven health care providers participating in CRA and CRAFT counsellor certification (May 2012). Qualitative content analysis was used to categorise working group meeting notes and interview transcripts were into key themes.

Results
Modifying technical language, reducing the number of treatment sessions, and including an option for treatment of clients in groups, were key recommendations by health care providers for improving the feasibility and applicability of delivering CRA and CRAFT to Aboriginal Australians. Health care providers perceived counsellor certification to be beneficial for developing their skills and confidence in delivering CRA and CRAFT, but identified time constraints and competing tasks as key challenges.

Conclusions
The tailoring process resulted in Aboriginal Australian-specific CRA and CRAFT resources. The process also resulted in the training and certification of health care providers in CRA and CRAFT and the establishment of a local training and certification program.

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

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

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

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

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

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

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.

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.

Abstract [en]

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person′s identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents′ impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

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.

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

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

PURPOSE/OBJECTIVES: To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer. DESIGN: Descriptive, qualitative study. SETTING: Private family homes. SAMPLE: Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer. METHODS: Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer. MAIN RESEARCH VARIABLES: Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses. FINDINGS: The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer. CONCLUSIONS: Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.IMPLICATIONS FOR NURSING PRACTICE: Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

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

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

The Internet increasingly serves as a platform for the delivery of public health interventions. The efficacy of Internet interventions has been demonstrated across a wide range of conditions. Much more work remains, however, to enhance the potential for broad population dissemination of Internet interventions. In this article, we examine the effectiveness of Internet interventions, with particular attention to their dissemination potential. We discuss several considerations (characterizing reach rates, minimizing attrition, promoting Web site utilization, use of tailored messaging and social networking) that may improve the implementation of Internet interventions and their associated outcomes. We review factors that may influence the adoption of Internet interventions in a range of potential dissemination settings. Finally, we present several recommendations for future research that highlight the potential importance of better understanding intervention reach, developing consensus regarding Web site usage metrics, and more broadly integrating Web 2.0 functionality.

The interface between formal (public) and informal help for older people is unclear and subject to change in many welfare states. Our aim in this study was to contribute to increased understanding of the experiences of older people, their next of kin, and the care managers from the municipalities in the process of negotiating help in the everyday lives of older people who can no longer manage on their own. We took a qualitative approach, using qualitative interviews as the main data collection method. The results revealed that the different actors had contrary interests that made it difficult for all parties to be content with the outcome of the negotiations. The everyday lives of dependent older people and their next of kin are strongly affected by the conditions of formal eldercare.

The study by Tan et al. is of interest because it shows that children′s development is not necessarily delayed because of disability, specifically cerebral palsy (CP).[1] CP is one of the most common childhood-onset disabilities and a condition frequently researched. PubMed, for example, reports 13 885 hits for CP compared with conditions such as developmental delay (6079) and myelomeningocele (602). As CP causes activity limitations, which can lead to restrictions in socially or culturally influenced areas of life, the study by Tan et al. provides insights into the social strengths that children with CP have. The results, indicating that many of the children diagnosed with CP can develop to the same level of social participation as children without disability (even though it may take more time), should have a positive impact on the expectations of their caregivers and families. Hopefully adults might increase their efforts to teach children with disabilities to interact with peers instead of mostly communicating with adults.[2]

The construct of participation has various interpretations and the rating of participation is controversial. This study aimed to address 'performance of social participation', from the perspective of socialization including interrelationships, play and leisure time; coping rated with the Vineland Adaptive Behavior Scale; and social function rated with Pediatric Evaluation of Disability Inventory. In the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY),[3] participation is defined as 'involvement in a life situation'. It includes two aspects: to attend activities, i.e. be there, and to experience engagement while being there.[4] The ratings reported in this study reflect the abilities needed for social interactions, not necessarily how a child carries out the interactions in various life situations. The ratings are in accordance with how capacity is rated using the ICF-CY qualifiers, but does not reflect the children′s attendance or engagement. Therefore, the children′s performance of social participation is not fully established.

The Tan et al. study has several implications for clinical practice. For example, doing and being with others, which are elements of social participation, facilitate learning and development and should be considered by the adults who are around children with disabilities.[5, 6] Child participation, as a determinant of well-being and life satisfaction, may also decrease mental health problems.[7] In addition to the abilities needed for social interactions, social participation includes an experience of belonging and inter-subjective interaction that leads into acts of acknowledgment.[8] Because adults provide 'scaffolds' for the experiences of children with disabilities, parents and teachers have the responsibility to encourage the children to start interacting with peers and to introduce them to potential friends. The results reported in this study in terms of the development of children's abilities for interactions, should influence the adults' attitudes to the children's social roles in a positive way.

When receiving support from adults, it is likely that the children's understanding of and adaption to social demands improve. For children with CP, participation restrictions are most often associated with their physical impairments related to environmental barriers, such as reduced access to venues and events.[9, 10] However, negative social attitudes to disability may also constitute barriers to participation. As children with disabilities attend community activities less frequently than typically developing children,[11] adults must make efforts to introduce the children to such activities in addition to introducing them to those peers sharing the activity.

For persons with severe CP or persons with additional intellectual disability, the result of the study shows there is no specific age where development ceases. This should be seen as a promising finding that should encourage parents and professionals to continue to stimulate social development across ages.

In this study, developmental trajectories were stratified by level of gross motor functioning. For future research, the authors note the need for enhanced insight into the additional determinants of social participation development, such as CP characteristics and contextual factors. Since manual abilities are important for diverse activities, communication included, should the developmental trajectories also be stratified by the children's level of fine motor functioning?

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

Background
The social class distribution of the common mental disorders (mostly anxiety and/or depression) has been in doubt until recently. This paper reviews the evidence of associations between the prevalence of the common mental disorders in adults of working age and markers of socio-economic disadvantage.

Methods
Work is reviewed which brings together major population surveys from the last 25 years, together with work trawling for all European population studies. Data from more recent studies is examined, analysed and discussed. Because of differences in methods, instruments and analyses, little can be compared precsiely, but internal associations can be examined.

Findings
People of lower socio-economic status, however measured, are disadvantaged, and this includes higher frequencies of the conditions now called the 'common mental disorders' (mostly non-psychotic depression and anxiety, either separately or together). In European and similar developed populations, relatively high frequencies are associated with poor education, material disadvantage and unemployment.

Conclusion
The large contribution of the common mental disorders to morbidity and disability, and the social consequences in working age adults would justify substantial priority being given to addressing mental health inequalities, and deprivation in general, within national and European social and economic policy.

Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

AIMS AND OBJECTIVES:
The aim of the present study was to determine the impact of a nurse-led support and education programme for improving the spouses' perceived general quality of life, life situation, general well-being and health state.
BACKGROUND:
Stroke is a disease with great consequences for the patients and their families. The spouses often feel obligated to care for the patient, providing psychological and physical support and having to cope with the patient's physical and cognitive impairments. This might lead to increased problems, as family members struggle to adapt to their new roles and responsibilities.
DESIGN AND METHODS:
Longitudinal, randomized controlled trial. One hundred spouses were randomly assigned to intervention or control groups, 50 in each group. The intervention group participated in a support and education programme, six times during six months, led by stroke specialist nurses. Both groups were followed for 12 months.
RESULTS:
No significant differences were found, between intervention and control groups, over time. In the sub analyses, we found that the group attending 5-6 times had a significant decrease in negative well-being and increased quality of life over time, while the group attending fewer times had a significant decrease in positive well-being and health state, similar to the control group, which also had a significant decrease in negative and general well-being.
CONCLUSIONS:
A support and education programme might have a positive effect on spouses' well-being, on condition that they attend at least five times.
RELEVANCE TO CLINICAL PRACTICE:
To facilitate the spouses' role as informal caregivers to the stroke patients, further development of the support and education programme used in the present study is needed, including empowerment approach and implementation of coping strategies.

This study examined depression and externalizing problems of children in foster care using a subsample of data (n =362) from the National Survey of Child and Adolescent Well-Being. Our findings indicated that more frequent contact with the biological mother was marginally associated with lower levels depression and significantly associated with lower externalizing problem behaviors. The association with externalizing problem behavior was significant even after controlling for gender and exposure to violence. Further, differences with regard to gender were revealed. Specifically, girls had higher depression scores than boys even after controlling for exposure to violence. Results suggest that supporting frequent, consistent, visitation may impact the levels of depression and externalizing programs children in foster care exhibit.

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

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

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

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

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

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

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

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

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

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

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

6-month-old infants selected on irritability shortly after birth and their mothers were randomly assigned to 2 intervention and 2 control groups to test the hypothesis that enhancing maternal sensitive responsiveness will improve quality of mother-infant interaction, infant exploration, and attachment. The intervention lasted 3 months and ended when the child was 9 months of age. When infants were 9 months of age, intervention group mothers were significantly more responsive, stimulating, visually attentive, and controlling of their infant's behavior than control group mothers. Intervention infants had higher scores than control infants on sociability, self-soothing, and exploration, and they cried less. Quality of exploration also improved, with intervention infants engaged in cognitively sophisticated kinds of exploration more than control infants. At 12 months of age, significantly more intervention group dyads were securely attached than control group dyads.

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

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

This paper reports an empirical investigation into the influence of informal care responsibilities on the labour supply of women. The objective is to examine the argument that the UK policy of caring for the chronic sick 'in the community' involves a nontrivial opportunity cost in the form of the forgone labour supply of the informal carers upon which it relies. We find that informal carers who care for less than 20 h per week are, in fact, more likely to participate in the labour market, but tend to work for fewer hours per week than otherwise similar noncarers. Informal carers who care for 20 h or more a week are less likely to participate, but only slightly. However, when they do undertake formal employment, they tend to earn less per hour and work for fewer hours per week.

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.

BACKGROUND:
The broad life implications of acquired dysarthria are recognized, but they have received little attention in stroke management. Reports of group therapy, which may be a suitable approach to intervention, are not available for stroke-related dysarthria.
AIMS:
To examine the operational feasibility of and response to a new eight-session weekly group intervention programme, Living with Dysarthria, designed for people with chronic dysarthria following stroke and their main communication partners.
METHODS & PROCEDURES:
The target participation was for programme completion by two groups of eight people with dysarthria (PWD) and available family members (FMs) or carers. An active recruitment strategy was undertaken from the speech and language therapy case records for the previous 6 years in two hospitals with combined annual stroke admissions of over 500 people. Twelve PWD and seven FMs were recruited (group 1: seven PWD and four FMs; group 2: five PWD and three FMs). Speech intelligibility, communication effectiveness, general well-being, quality of communication life, and knowledge of stroke and dysarthria were assessed pre- and post-programme. Each PWD and FM also set an individual goal and rated their achievement of this on a 0-10 scale.
OUTCOMES & RESULTS:
Recruitment to the programme was lower than anticipated and below target. The 12 PWD were recruited from 62 initial contacts, which was the total number who according to available information met the criteria. The programme was viable: it ran to plan, with only minor content alterations, in community accommodation, and with good participant engagement. Group median score changes were in a positive direction for all measures and effect sizes ranged from 0.17 (quality of communication life) to 0.46 (intelligibility). Significant post-programme changes were present for intelligibility and knowledge of stroke and dysarthria (p= 0.05). Participants' ratings of goal achievements ranged from 6 (some change) to 10 (a lot of change).
CONCLUSIONS & IMPLICATIONS:
The recruitment experience revealed a take-up rate of around 20% from PWD following stroke, informing future planning. The participant engagement and performance results from the piloting of the programme indicate that the Living with Dysarthria programme is viable and has potential for effecting positive change. Further testing is justified.

Aim. To develop a brief, multi-dimensional instrument for assessing treatment outcome for people with drug and/or alcohol problems. The Maudsley Addiction Profile (MAP) is the first instrument to be developed in the United Kingdom for this purpose. Design. Field testing with quota-recruitment of problem drug users and problem alcohol users in treatment with researcher and clinician-administered test-retest interviews. Setting. Two community and two inpatient services at the Bethlem Royal and Maudsley Hospital, London. Participants. Subjects (160 drug users and 80 alcohol users) interviewed by eight interviewers (four researchers and four clinicians), each of whom interviewed 30 subjects on two occasions. Measures. Sixty items across substance use, health risk, physical/psychological health and personal/social functioning domains. Findings. Average completion time of the MAP was 12 minutes. The questionnaire was acceptable to a majority of subjects and performed well with both researcher and clinician interviewers. Internal reliability and feasible concurrent validity assessments of the scales and items were highly satisfactory. Test-retest reliability was good, average intraclass correlation coefficients across eight substances were 0.94 and 0.81 across health risk, health problems, relationship conflict, employment and crime measures. Conclusions. The MAP can serve as a core research instrument with additional outcome measures added as required. The collection of a set of reliable quantitative measures of problems among drug and alcohol users by research or treatment personnel for outcome evaluation purposes need not be time-consuming.

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.

Objective. To (1) examine the subjective experience of parenting stress as a mediator between 2 distal stressors (sociodemographic risk and global psychological maladjustment), and examine the parenting of methadone-maintained mothers, and (2) identify maladaptive and adaptive parenting correlates of specific types of parenting stress. Design. We analyzed baseline data from interviews conducted with 74 methadone-maintained mothers who expressed interest in a randomized clinical trial study testing the efficacy of a relational parenting intervention. Baseline measures included questionnaires on maternal psychological maladjustment, parenting stress, parenting problems, and children's maladjustment. Three series of hierarchical linear regressions were conducted to test the mediation model and specificity of associations. Results. Parenting stress mediated the associations between sociodemographic risk and 2 maladaptive parenting domains (aggression and neglect) and between psychological maladjustment and all 5 parenting domains examined (aggression, neglect, affective interactions, limit setting, and autonomy), although correlations were modest. Child-focused stress was associated with higher levels of aggression, limit-setting problems, and restricted autonomy. Stress derived from the mother - child relationship was associated with higher levels of neglect and affective withdrawal. Conclusions. Although preliminary in nature, results of this study indicate the importance of understanding the role of internal mechanisms (e.g., parenting stress) in the parenting processes of addicted women and examining specific correlates of their parenting problems.

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

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.

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.

Since the early 1990s, attention has been focused on the importance of self-determination in the education of students with disabilities. The purpose of this study was to further our understanding of the construct of self-determination by examining the relationship between the Arc's Self-Determination Scale and the American Institutes for Research (AIR) Self-Determination Scale student and educator versions. Using structural equation modeling, we found that the theoretical structure of the Arc's Self-Determination Scale and the AIR Self-Determination–Student Scale was supported by the data, while the proposed theoretical structure of the AIR Self-Determination–Educator Scale was not. The analyses suggested that each of the measures of self-determination was measuring a different aspect of the self-determination construct (i.e., it was not possible to create a higher order factor comprising each of the assessments); thus issues related to the goals of the research and the underlying theoretical perspective of each measure must be considered when determining the most appropriate measure of self-determination in research and practice. Implications and future research directions are discussed.

Med anledning av ett projekt inom Division Psykiatri vid USiL (Universitetssjukhuset i Lund) som syftar till att föreslå åtgärder för patienter med självskadebeteende.

The aim of the thesis was to describe the specific barriers young people with disabilities experience in their ambition to get a job. The aim was also to investigate how these young people's social and economic situation has been affected by their disability.The results are based on two reports: one qualitative, consisting of interviews with 12 individuals with physical disabilities, and one quantitative in the form of a questionnaire answered by 706 persons. In the case of the questionnaire, the response rate was 48 per cent. Both reports are based on the same criteria, namely, that the respondents should have a physical disability, be 20–35 years of age and be participating in some form of employment policy program.The results from both studies show that individuals with physical disabilities encounter different types of barriers on the labour market, which can be categorised as being either at the individual level or at the social level. The barriers at the individual level are low education, long-term unemployment, grave physical disability and lack of work experience. The barriers identified at the social level are primarily poorly adapted workplaces, a too high working pace, employers' negative attitudes, insufficient knowledge of the competence of disabled persons and an overly generous social welfare system. All these factors constitute a direct obstacle to employing persons with a physical disability.The results from the interview study show that the respondents have few social relations. The majority of the respondents have social intercourse solely with family members or parents. Most of the respondents in the questionnaire study state that they have frequent social relations with friends and acquaintances. Both the interview study and the questionnaire study reveal that the respondents' financial position has worsened as a result if their physical disability.Conclusions that can be drawn from this thesis are that young people with physical disabilities encounter different barriers in their attempts to get a job and to maintain social relations. Based on the results, some of the respondents can be regarded as being socio-economically marginalised

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
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• 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
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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
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• 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
13
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
14
• 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
15
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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16
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.

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

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

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.