Bibliotek

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

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

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

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

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

Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.

Rapporten beskriver ett utvecklingsarbete inom FoU Skåne som haft som mål att finna former för brukare att framföra synpunkter, önskemål och krav på den verksamhet som de tar del av. Utgångspunkten har varit Empowerment - ett begrepp som här huvudsakligen använts för att belysa brukarnas möjlighet att bestämma över sina liv och erövra egenmakt - ett exempel på en botten-uppstrategi för inflytande.

Metoden som benämnts Delaktighetsmodellen har inspirerats av andra former för brukarinflytande som BIKVA och Lyttemöten från Danmark och BUKU från Sverige.

Rapportens första del är en beskrivning av processen och den implementering som skett i Skåne under tre år. Den andra delen kan ses som en fördjupning av motiven och en beskrivning av de bakomliggande teoretiska begreppen.

Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

BACKGROUND: Family caregivers in palliative care have a need for knowledge and
support from health professionals, resulting in the need for educational and
supportive interventions. However, research has mainly focused on the experiences
of family caregivers taking part in interventions. To gain an increased
understanding of complex interventions, it is necessary to integrate the
perspectives of health professionals and family caregivers. Hence, the aim of
this study is to explore the perspectives of health professionals and family
caregivers of delivering and participating in a psycho-educational intervention
in palliative home care.
METHODS: A psycho-educational intervention was designed for family caregivers
based on a theoretical framework describing family caregiver's need for knowing,
being and doing. The intervention was delivered over three sessions, each of
which included a presentation by healthcare professionals from an intervention
manual. An interpretive descriptive design was chosen and data were collected
through focus group discussions with health professionals and individual
interviews with family caregivers. Data were analysed using framework analysis.
RESULTS: From the perspectives of both health professionals and family
caregivers, the delivering and participating in the intervention was a positive
experience. Although the content was not always adjusted to the family
caregivers' individual situation, it was perceived as valuable. Consistently, the
intervention was regarded as something that could make family caregivers better
prepared for caregiving. Health professionals found that the work with the
intervention demanded time and engagement from them and that the manual needed to
be adjusted to suit group characteristics, but the experience of delivering the
intervention was still something that gave them satisfaction and contributed to
them finding insights into their work.
CONCLUSIONS: The theoretical framework used in this study seems appropriate to
use for the design of interventions to support family caregivers. In the
perspectives of health professionals and family caregivers, the
psycho-educational intervention had important benefits and there was congruence
between the two groups in that it provided reward and support. In order for
health professionals to carry out psycho-educational interventions, they may be
in need of support and supervision as well as securing appropriate time and
resources in their everyday work.

OBJECTIVE:
To identify the preferences of patients with stroke and their carers for format and delivery style, of different categories of stroke information, and whether these preferences changed over time.
METHODS:
A semi-structured questionnaire, designed to explore preferences for four topic categories was administered to 34 acute stroke unit patients and 18 carers prior to discharge and again, 3 months after discharge to 27 of these patients and 16 of these carers.
RESULTS:
Overall format preferences were a combination of face-to-face, written and telephone for both patients and carers prior to discharge. This combination continued for carers following discharge, while patients preferred face-to-face, written and alternative formats of online and audiovisual at this time. Patients and carers most frequently preferred delivery styles appeared to be a mix of active and passive delivery styles, across all topics. Access to a telephone hotline was a popular delivery style.
CONCLUSION:
Patient and carer preferences varied, supporting the need to offer a variety of formats and delivery styles at each point of contact.
PRACTICE IMPLICATIONS:
By focusing on specific formats and delivery styles for different topics, health professionals may maximise the access to, and relevance of, stroke information for patients and their carers.

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

Doktorsavhandling

Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.

Purpose: We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes. Design and Methods: MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer's disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful. Results: Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers. Implications: Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research.

I Den fullbordade livscykeln blickar Erik H Erikson tillbaka på sin berömda psykosociala utvecklingsteori. Människans psykiska utveckling fortgår i åtta olika stadier livet igenom, enligt Erikson. Han betraktar här, 80 år gammal, sin tankebyggnad utifrån den sista livsfasen där han själv befinner sig – vishetens, förtvivlans och försoningens fas. Boken ger en sammanfattning av hans teorier och ett koncentrat av hans livsvisdom.
I ljuset av den sista perioden i livet får Eriksons framställning en djupt existentiell prägel. Han uppehåller sig bl a vid ritualiseringen i samspelet mellan människor och det upplyftande mötet med "den andre", vilket håller hoppet vid liv och kan ge näring åt tron på någonting bortom den fullbordade livscykeln.

I ett tillägg i denna utgåva inför Joan Erikson, hans hustru och samarbetspartner i över 60 år, ett nionde stadium, åldrandet i 80-90-årsåldern. Själv över 90 lägger hon vidare ett samhälleligt-kulturellt perspektiv på åldrandet och tar slutligen upp begreppet gerotranscendens, tendensen att gamla människor löser upp tids-rumsperspektivet på ett sätt som inte sällan vidgar det och möjliggör en fördjupad andlighet.

Edna Alsterlund träffar Ingemar Johansson första gången i USA, 1979. Trots åldersskillnaden, sexton år, finner de varandra. Hon upptäcker att boxningslegenden är en varm, godhjärtad och allmänbildad person med aptit på livet. Som reporter för bildtidningen Se umgås Edna bland artister, politiker, idrottsstjärnor, företagsledare och andra kända och intressanta personer. I USA är Ingemar ständigt efterfrågad i olika sammanhang, som idrottsevenemang och välgörenhetsgalor. Under de följande åren kommer paret att tillsammans delta intensivt i ett internationellt jetset-liv över hela världen.

Efter femton goda år tillsammans börjar Edna oroas av förändringar i Ingemars personlighet. Han får humörsvängningar, kör vilse och hittar inte hem. Beter sig bisarrt och blir fixerad vid alkohol. Till slut får Edna klarhet. Ingemar har drabbats av Alzheimers sjukdom. Och han saknar själv all sjukdomsinsikt.

Den längsta ronden är en bok om att vårda en anhörig som drabbats av Alzheimers sjukdom, ofta kallad "de anhörigas sjukdom". Författaren skriver öppenhjärtigt men också med stor respekt och kärlek om hur tillvaron blir en kamp för att få livet att fungera, hur hon försöker tillgodose Ingemars behov och samtidigt på olika sätt skydda honom mot omgivningens alltmer intensiva spekulationer. Edna har skrivit den bok hon själv letade efter då hon insåg att Ingemar drabbats av förtidig demenssjukdom. Hon belyser anhörigvårdarens svåra och utsatta situation. I boken medverkar också flera kända experter, bland andra grundaren av Stiftelsen Silviahemmet, professor emeritus Barbro Beck-Friis.

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

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

Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.

De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.

Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.

Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.

I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
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Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?

Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.

Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.

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

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

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

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

Recent losses occurring in the two years before onset of depression in women are distinguished from past losses occurring at any time before this. Of past losses only loss of mother before II is associated with greater risk of depression--both among women treated by psychiatrists and among women found to be suffering from depression in a random sample of 458 women living in London. Past loss of a father or sibling before 17 (or a mother between II and 17), or a child or husband, is not associated with a greater chance of developing depression. However, among patients all types of past loss by death are associated with psychotic-like depressive symptoms (and their severity) and other types of past loss with neurotic-type depressive symptoms (and their severity). It is argued that these associations probably reflect direct causal links, and a sociopsychological theory to explain them is discussed.

Akad. Avh.

This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care.

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

BACKGROUND:
This study examined depressive symptoms in bereaved children and adolescents two months after the death of a parent.
METHODS:
Participants were 325 children and adolescents bereaved of a parent approximately two months prior to the study. They were compared to 129 non-bereaved community controls and 110 non-bereaved depressed controls. Participants and their parents were interviewed regarding the child's depressive symptoms. Possible moderating factors for depression in bereaved children were examined.
RESULTS:
25% of the bereaved participants experienced a major depressive episode (MDE) compared to 1% of the community controls. An additional 24% of the bereaved participants experienced a sub-syndromal depressive episode, defined as 3 or 4 depressive symptoms, compared to 4% of the community controls. Factors correlated with occurrence of MDE in the bereaved children in exploratory analyses were (1) history of MDE in the child and (2) history of alcoholism in a parent. Guilt/worthlessness, psychomotor disturbance, and low energy in the context of an MDE predicted membership in the depressed control group over the bereaved group.
LIMITATIONS:
The relationship between an MDE in the bereaved child and parent history of alcoholism is exploratory, as the p-value for this correlation was greater than the α adjusted for multiple comparisons. The bereaved child's history of MDE was based on the child's and parent's memories of depressive symptoms.
CONCLUSIONS:
The death of a parent is a risk factor for depressive symptoms and depressive episodes in children and adolescents two months after the death.

OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.

OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.

Research Challenges in Confronting Depression in Parents

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

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

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

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

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

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

Abstract
This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.

This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.

This study looks at how mothers with an intellectual disability describe their children's needs, their own parenting and parenthood, and their encounters with professionals providing them with help and support. The analysis draws upon a relational perspective on disability, theories of modern parenthood, and the concept of the sense of coherence in examining the strategies used by the interviewed mothers in their everyday lives, such as consulting people they trust. Having a child and being entrusted with the role of parenthood were described by the interviewed mothers as creating meaningfulness in their lives, while the comprehensibility of their everyday lives was often found to be lacking and the information given them by professionals not always understandable. Better information and communication thus seem to be necessary to render these mothers' parenthood and its context more comprehensible.

Background
It has been estimated that approximately 20% of all Swedish children grow up with parents having alcohol problems, which may result in negative outcomes among these children. Therefore, most Swedish municipalities provide resources for support, but at the same time figures reveal that not even 2% receive support, mainly due to difficulties in identifying and recruiting these children into support programs. Delivering intervention programs to children and adolescents via the Internet seems a promising strategy, but to date, the number of web-based interventions aimed at this target group is very scarce. We have therefore developed a novel internet-delivered therapist assisted self-management intervention called the web-ICAIP (Individual Coping and Alcohol Intervention Program) for adolescents having parents with alcohol problems. The purpose of the program is to strengthen adolescents' coping behavior, improve their mental health, and postponing the onset or decreasing risky alcohol consumption. This paper describes the web-ICAIP and the design of a randomized controlled trial (RCT) to measure the efficacy of this intervention.

Methods/Design
The RCT will include at least 183 adolescents (15-19 year old) who will be randomly allocated to two conditions where one group has access to the web-ICAIP and the other is a waiting list control group. Participants will be recruited from websites containing information and facts for adolescents about alcohol and other drugs. Possible participants will be screened using the short version of the Children of Alcoholics Screening Test (CAST-6). The assessment consists of a baseline and two follow-up measurements taking place after two and six months, respectively. The primary outcomes include the Center for Epidemiological Studies Depression Scale (CES-DC), a coping behavior scale, and also the short version of the Alcohol Use Disorders Identification Test (AUDIT-C). Additional outcomes include the "Ladder of life" which measures overall life satisfaction and questions concerning program adherence.

Discussion
There is an urgent need for developing and evaluating web-based intervention programs which target children having parents with alcohol problems. This study will therefore make an important contribution to this novel field of research.

Background
Preventive interventions are developed for children of parents with mental and substance use disorders (COPMI), because these children have a higher risk of developing a psychological or behavioral disorder in the future. Mental health and substance use disorders contribute significantly to the global burden of disease. Although the exact number of parents with a mental illness is unclear, the subject of mentally ill parents is gaining attention. Moreover there is a lack of interventions for COPMI-children, as well of (cost-) effectiveness studies evaluating COPMI interventions. Innovative interventions such as e-health provide a new field for exploration. There is no knowledge about the opportunities for using the internet to prevent problems in children at risk. In the current study we will focus on the (cost-) effectiveness of an online health prevention program for COPMI-children.

Methods/Design
We designed a randomized controlled trial to examine the (cost-) effectiveness of the Kopstoring intervention. Kopstoring is an online intervention for COPMI-children to strengthen their coping skills and prevent behavioral and psychological problems. We will compare the Kopstoring intervention with (waiting list) care as usual. This trial will be conducted entirely over the internet. An economic evaluation, from a societal perspective will be conducted, to examine the trial's cost-effectiveness. Power calculations show that 214 participants are needed, aged 16-25. Possible participants will be recruited via media announcements and banners on the internet. After screening and completing informed consent procedures, participants will be randomized. The main outcome is internalizing and externalizing symptoms as measured by the Youth Self Report. For the economic evaluation, healthcare costs and costs outside the healthcare sector will be measured at the same time as the clinical measures, at baseline, 3, 6 and 9 months. An extended measure for the intervention group will be provided at 12 months, to examine the long-term effects. In addition, a process evaluation will be conducted.

Discussion
Recent developments, such as international conferences and policy discussions, show the pressing need to study the (cost-) effectiveness of interventions for vulnerable groups of children. This study will shed light on the (cost-) effectiveness of an online preventive intervention.

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

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

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

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

Hur är det att förlora en vuxen son, som överlever till ett nytt och annorlunda liv med en svår hjärnskada? Kan vårdpersonal, personliga assistenter, pedagoger och anhöriga lära sig att uppskatta det unika hos varje patient, klient, kund, brukare och närstående? Patient, klient, kund, brukare, handikappad, funktionshindrad ... Alla dessa försök att hitta en värdig etikett på den som är beroende av stöd avslöjar ett mycket större, outtalat problem med vår attityd och vår rädsla för det annorlunda. Tobias cyklade omkull och slog sönder vänster hjärnhalva. Tobias mamma, författaren, berättar personligt om vården och bemötandet från och med det akuta omhändertagandet, genom intensivvård och rehabilitering till upprättandet av en vardag, en process på drygt fyra år. Närståendes och anhörigas reaktioner beskrivs ingående. Författaren lyckas förmedla att förtvivlan och ovisshet kan gå hand i hand med kraft, inspiration och hopp, trots förlustens skoningslösa konsekvenser. Personalens bemötande beskrivs också, men ur ett mer professionellt perspektiv, med såväl beröm, som kritik och konstruktiva förslag. Två perspektiv förmedlas: Hur föräldrarna blir traumatiserade, sårbara och reagerar på ett sätt som liknar perioden efter barnafödande, samt hur deras utsatthet och trevande försök att hantera läget, ständigt avbryts för en nödvändig kamp mot snäva perspektiv hos personer i beslutsfattande position. Det andra perspektivet är professionellt; läsaren inspireras att reflektera, de personliga exemplen blir material att fundera över ur ett generellt bemötandeperspektiv: Vilka värden och värderingar möter vi hos oss själva och andra, när en medmänniska förlorar så mycket av allt det som format hans/hennes identitet och vår relation? Boken fyller en lucka i vård-, psykologi- och omsorgsprogram. Personal får inspiration i arbetet. Anhöriga och drabbade känner igen sig och upplever ett stort stöd i denna berättelse, som är lika aktuell idag 2012 som då första utgåvan publicerades

The types of contingency experiences infants and young children are typically exposed to are examined with a focus on the implications for early childhood intervention with young children who have developmental disabilities and delays. Studies of response-contingent child learning, the manner in which contingencies are not under direct child control, and child/caregiver reciprocal contingencies, are reviewed in terms of how they influence child learning and development. Results indicate that the different types of contingencies all positively influence child behavior. Implications for practice are described in terms of contingency-rich everyday child learning activities, child response-contingent learning in the context of those activities, and caregiver contingent responsiveness as an instructional strategy for supporting child contingency learning.

Children who spend early portions of their lives in institutions or those maltreated in their families of origin are at risk for developing emotional and behavioral problems reflecting disorders of emotion and attention regulation. Animal models may help explicate the mechanisms producing these effects. Despite the value of the animal models, many questions remain in using the animal data to guide studies of human development. In 1999, the National Institute of Mental Health in the United States funded a research network to address unresolved issues and enhance translation of basic animal early experience research to application in child research. Professor Seymour Levine was both the inspiration for and an active member of this research network until his death in October of 2007. This review pays tribute to his legacy by outlining the conceptual model which is now guiding our research studies.

Results from adoption studies suggest that adoptive families may experience special impediments with respect to the developmental progress and outcome of their children. Based on attachment theory, two early intervention programs were designed to support families in the Netherlands with an internationally adopted child. The intervention aimed at promoting maternal sensitive responsiveness, secure infant-mother attachment relationships, and infant exploratory competence. Ninety families with an interracially adopted infant (71 from Sri Lanka and 19 from Korea) were assigned to either a control group or one of two intervention groups. All of the children, 44 boys and 46 girls, were placed for adoption under the age of 5 months (M = 8 weeks). The first intervention group (N = 30) received a personal book, which focused on sensitive parenting. The second intervention group (N = 30) was provided with the same book as well as with three video-feedback sessions at their home. The control group (N = 30) did not receive intervention. In the control group sensitive responsiveness and security of attachment were comparable to outcomes from normative samples. The least intensive program, the personal book, did not bring about change in mothers or infants. In contrast, intervention effects were established upon maternal sensitive responsiveness, infant competence, and infant-mother attachment in the group that received both the book and video feedback.

This three-part article describes the early years of one of the mother-baby-children groups of the Project for Mothers, Infants, and Young Children of September 11, 2001. The goal of the group was to help prevent the effects of trauma and loss from disrupting the relationships among the mothers, their infants, and growing children. View I by Anni Bergman describes the mothers' states of minds as the group began, when they felt that their worlds had collapsed under them. View II by Sally Moskowitz focuses on the clinical experience of working in the group, transference and countertransference themes, helping the mothers and children with their mourning process, and helping the mothers' relationships to each other, their babies, older children, family, and friends. The evolution of a casual, familial-type atmosphere and format came to be seen by the therapists as very important. The therapists wanted to provide whatever small feeling of normality and comfort possible in the context of the mothers' anguish. This routine atmosphere provided the backdrop against which the mothers could talk about what seemed like unspeakable events, thoughts, and feelings, and process the horrific events, in their magnitude and details. View III by Donna Demetri Friedman describes the play therapy treatment of two preschool-aged siblings in the context of the support group. The children's father had been killed in the World Trade Center attacks. This section describes the themes of the children's play and how they worked through the experience of the loss of their father, the birth of their sibling, and their mother's grief. It also describes their progress a decade later.

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

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

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

The objective of this study based on Swedish registers is to examine the influence of socioeconomic position on poststroke divorce and separation using education as a marker. People aged 18 to 64 who suffered a first stroke between 1992 and 2005 were included if they were married or cohabiting and had mutual children. The material included 42,026 first stroke cases and 424,281 nonexposed persons, both populations divided into three different educational groups. Results show that the risk of separation is much higher in the incident year and in the first poststroke year, above all among people with only compulsory (elementary) education.

A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.

Background

Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.

Objective

To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.

Methods

250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.

Results

All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.

Conclusions

This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.

Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.

The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.

Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.

Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.

Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.

Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.

This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.

In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.

The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.

Background

Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.

Methods/Design

A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.

Discussion

The trial will provide information about the effectiveness of the SFP10-14 in Poland.

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)

PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).

MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.

ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.

ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.

The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.

The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.

Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.

The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.

The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.

This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.

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

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning

Avhandling

Kunskapsöversikten syftar till att skapa en överblick över relevant forskning och utveckling inom området anhörigomsorgens konsekvenser för försörjning och ekonomi, samt att bidra till att stimulera och stödja utvecklingsarbete inom detta område. Målgruppen för kunskapsöversikten, lliksom för Nka:s arbete i övrigt, är anhöriga oah deras närstående, anställda inom vård och omsorg samt inom hälso- och sjukvård, beslutsfattare inom området, aktiva inom idéburna organisationer, studenter, lärare och forskare.

Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English.Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person's comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.

Kunskapen om våld mot äldre kvinnor är mycket begränsad. Som ett led i att åtgärda bristerna genomförde Länsstyrelsen i Stockholms län under våren och hösten 2011 en utbildning i tre steg för drygt 500 personer verksamma inom äldreomsorgen i länet. I denna rapport beskrivs de resultat och synpunkter som framkommit efter utbildningssatsningen.

Rapporten innehåller bl.a. en forskningsöversikt över vad vi idag vet om tidig intervention, behandling och tvärfackligt samarbete när det gäller psykisk ohälsa/sjukdom hos mammor under graviditeten och efter förlossning. Forskning visar att för denna grupp har selektiv prevention visat sig effektiv och betydelsefull.
Det saknas idag stöd till de mest behövande spädbarnsfamiljerna och det finns en tydlig lucka i vårdkedjan. Organisationen för stöd till föräldraskapet och "relationen" mellan föräldern och det späda barnet behöver få en form inom svensk hälsovård. Ett flertal spädbarnsverksamheter har lagts ner i landet och det finns stora brister i tillgången på samspelsbehandling, där föräldrar med svårigheter i föräldraskapet kan få hjälp och stöd att reglera samspelet.
Vi hoppas och tror att denna rapport kan vara ett bra stöd i det fortsatta viktiga arbetet att samverka för att stödja det späda barnet som anhörig till en förälder med psykisk sjukdom. Detta blir än mer angeläget utifrån den nya lagstiftningen i HSL och LYHS.

Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.

Vägledningen ger läsaren en historisk tillbakablick för att förstå nutiden och en presentation av viktiga aspekter som gäller de personer som är mottagare av boende- och boendestödsinsatser. Här beskrivs utvecklingen av boende- och boendestödsverksamheterna sedan psykiatrireformen. Det ges också en definition av vad ett hem är, hemmets betydelse för personen och den etiska plattformen som dessa verksamheter ska bygga på. Sedan behandlas målgruppen med fokus på heterogenitet och de skillnader som beror på ålder och diagnos. Dessutom presenteras målgruppens behov av stöd och service samt önskemål om var och hur man vill bo.

Kommunens mål- och planeringsarbete
Nästa del tar upp kommunens mål- och planeringsarbete för boendeverksamheter på ett övergripande plan och vänder sig steg främst till personer som arbetar med kommunal verksamhetsledning och enhetschefer. Här fokuseras innehållet på lagstiftning, tillsynsresultat samt villkor och redskap för verksamheten. Texten innehåller förslag på åtgärder som kan underlätta kommunernas arbete.

Rapporten ger också viktig bakgrundsinformation till främst enhetschefer och boendestödjare om hur man kan tänka kring bostäder. Här diskuteras aspekter som fullvärdig bostad, institutionell prägel, fysisk och psykosocial miljö samt vad som kännetecknar en god boendemiljö.

Utredningsmomentet och standardiserade bedömningsinstrument
Vägledningen innehålle också information om ansökan, biståndsbedömning och beslut när någon ansöker om insatser, information som främst vänder sig till biståndsbedömare och boendestödjare. Socialstyrelsen har tidigare publicerat en handbok om handläggning och dokumentation, här fokuseras på utredningsmomentet och användningen av standardiserade bedömningsinstrument. Dessutom betonas att behovsbedömningar är en kontinuerlig process eftersom en individs behov förändras.

Typer av boendestöd och hur arbetet kan utföras
Informationen om viktiga typer av stöd som förekommer i boendeverksamheter – psykosocialt boendestöd, stöd för att förebygga fysisk ohälsa och förbättra fysisk hälsa samt kognitiva hjälpmedel för personer med psykisk funktionsnedsättning vänder sig främst till boendestödjare. Först behandlas boendestöd som funktion, vem som arbetar med stödet samt vad man kan tänka på när man arbeta i någon annans hem. Kärnan är ny forskning som består av intervjuer med boende om hur de vill att boendestödet ska ges.

I kapitel 9 ges exempel på kognitiva funktionsnedsättningar som komplicerar vardagslivet, en del kognitiva hjälpmedel samt vad man kan tänka på när de ska användas.

Boendestöd utifrån ett folkhälsoperspektiv
Målgruppens fysiska hälsa har visat sig vara ett mycket eftersatt område och i sjunde kapitlet presenteras forskning som jämför målgruppen med befolkningen i övrigt. Texten har ett folkhälsoperspektiv och kan stimulera till insatser i ett boendesammanhang för att förebygga fysisk ohälsa och förbättra gruppens fysiska hälsa. Hälso- och sjukvård i permanenta boenden

Den del av rapporten som tar upp ansvarsfrågor när det gäller hälso- och sjukvården i olika permanenta boenden vänder sig främst till ledningsnivån, enhetschefer och medicinskt ansvariga.

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

In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of interpretation and low reliability results have been described as the main problems. In the present study, our aim was to estimate the reliability of the Alertness Observation List (AOL) while, at the same time, minimizing the problems entailed in observations. We calculated both the inter-observer agreement and intra-observer agreement for 39 situations. Since the results exceeded the formulated 80%-criterion, we concluded that the AOL was a reliable instrument. However, the large range found in the results was striking. Moreover, observers with different information about the observed individuals came up with different reliability scores. To determine the value of observation of individuals with PIMD, it might well be necessary to judge the actual usefulness that the instrument has in clinical practice, besides the reliability of the results.

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers' capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Abstract
Purpose: Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall.

Methods: Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software.

Results: All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process.

Conclusions: Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke survivors and their caregivers. A structured and client-centered fall prevention program targeting at multiple risk factors post-stroke is needed for community-living stroke survivors.

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

Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework1 to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.2 However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (www.mrc.ac.uk/complexinterventionsguidance). In this article we summarise the issues that prompted the revision and the key messages of the new guidance.

The aim of key working is to ensure the provision of holistic care and support to meet the individual requirements and aspirations of the child, young person and their family. The governement-funded Early Support programme, which ran until 2015, provided a range of key working training and resources includoing these guide's on delivering key working in practice.

The guide summarises key evidence and consistent elements of a key working approach, including an analysis of the implications of key working that cuts across health, social care and education.

This report presents the current status of a series of studies oriented toward the assessment of perceived life quality. The conceptual model proposes that a person's overall sense of life quality is understandable as a combination of affective responses to life 'domains', which are of two types-role situations and values. Over 100 items used to measure a wide variety of domains and 28 items assessing perceived overall life quality are presented. Various subsets of these items were used in interviews with several representative samples of American adults. Based on these data the domain items were grouped into a smaller number of semi-independent clusters which were internally stable across 10 different subgroups of the respondents and whose interrelationships were highly replicable in independent national samples. A series of analyses, some replicated in more than one survey showed: (1) an additive combination of 12 selected domains explained 50–60% of the variance in an index of overall life quality, (2) neither other domains nor several social characteristic variables contributed additional explanatory power, (3) this level of explanation was achieved in each of 22 subgroups of the population, and (4) additive combinations of domains worked as well as more complicated combinations.

BACKGROUND:
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home.
AIMS:
To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals.
RESULTS:
Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents.
CONCLUSIONS:
Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

Avhandling

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

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

Abstract:
Objectives Measuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families' satisfaction of quality of care in Swedish intensive care units. Methods Based on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis. Findings Seven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed. Conclusion A family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents' understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.

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

This new edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5®), used by clinicians and researchers to diagnose and classify mental disorders, is the product of more than 10 years of effort by hundreds of international experts in all aspects of mental health. Their dedication and hard work have yielded an authoritative volume that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.

The criteria are concise and explicit, intended to facilitate an objective assessment of symptom presentations in a variety of clinical settings—inpatient, outpatient, partial hospital, consultation-liaison, clinical, private practice, and primary care. New features and enhancements make DSM-5® easier to use across all settings:

The chapter organization reflects a lifespan approach, with disorders typically diagnosed in childhood (such as neurodevelopmental disorders) at the beginning of the manual, and those more typical of older adults (such as neurocognitive disorders) placed at the end. Also included are age-related factors specific to diagnosis.
The latest findings in neuroimaging and genetics have been integrated into each disorder along with gender and cultural considerations.
The revised organizational structure recognizes symptoms that span multiple diagnostic categories, providing new clinical insight in diagnosis.
Specific criteria have been streamlined, consolidated, or clarified to be consistent with clinical practice (including the consolidation of autism disorder, Asperger's syndrome, and pervasive developmental disorder into autism spectrum disorder, the streamlined classification of bipolar and depressive disorders, the restructuring of substance use disorders for consistency and clarity, and the enhanced specificity for major and mild neurocognitive disorders).
Dimensional assessments for research and validation of clinical results have been provided.
Both ICD-9-CM and ICD-10-CM codes are included for each disorder, and the organizational structure is consistent with the new ICD-11 in development.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, is the most comprehensive, current, and critical resource for clinical practice available to today's mental health clinicians and researchers of all orientations. The information contained in the manual is also valuable to other physicians and health professionals, including psychologists, counselors, nurses, and occupational and rehabilitation therapists, as well as social workers and forensic and legal specialists.

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

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

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

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

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

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

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

This paper examines the rationale for service user and carer involvement in professional education and reflects on an initiative in which social work and nursing students undertook a sequence of joint learning in relation to mental health theory and practice. Central to this initiative was the promotion of opportunities for dialogue, both between students from different professional disciplines and between students, service users and carers. To enable this, much of the learning took place in small groups facilitated by either a service user or a carer. Evaluation of this initiative indicated that, for the majority of social work and nursing students, learning from this shared experience had a major impact on their professional development. However, a small but significant minority found it hard to enter into a dialogue with others on a basis of equality and a sharing of their human as well as their professional experience. Some students indicated that they would have preferred a focus on acquiring more specialist professional knowledge and skills. This raises important issues in relation to the changing expectations of professionalism and professional education-and what really makes someone 'fit for practice'.

BACKGROUND: Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. OBJECTIVES: This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. METHODS: A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. RESULTS: For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. CONCLUSIONS: Differences in caregivers' needs for social support were related to their partner's disease. IMPLICATIONS FOR PRACTICE: Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.

OBJECTIVE:
This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.
DESIGN:
Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.
RESULTS:
Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.
CONCLUSIONS:
The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

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

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

The discussion of a palliative care and a dignified death has almost exclusively been applied to people dying of cancer. As people are getting older and are living longer, nursing homes have become an important place for end-of-life care and death. Dignity is a concept often used in health care documents but their meaning is rarely clarified.The main aim of this thesis was to gain a deeper understanding of what dignity meant to older people in end of life care as well as to nursing home staff. The thesis comprises four studies. The first and second study involved older people living in nursing home settings studied from a hermeneutic perspective. In the first study twelve older people in two nursing homes were interviewed two to four times over a period of 18–24 months during 2002–2003. Altogether, 39 interviews were analyzed by a hermeneutic method. Dignity was closely linked to self-image and identity. The themes of unrecognizable body, dependence and fragility constituted threats to dignity. The third theme, inner strength and sense of coherence, seemed to assist the older people in maintaining dignity of identity. In the second study the aim was to acquire a deeper understanding of how three older women from study I, created meaning in everyday life at the nursing home. A secondary analysis was carried out and showed meaning in everyday life was created by an inner dialogue, communication and relationships with others. The third study was to explore nursing home staff members' experience of what dignity in end-of –life care means to older people and to themselves.Totally 21 interviews with staff were carried out and analyzed through a qualitative content analysis. The meaning of older people's dignity was conceptualized as feeling trust, which implied being shown respect. Staff members' dignity was conceptualized as maintaining self-respect. Dignity was threatened in situations where staff experienced themselves and the older people as being ignored and thereby marginalized. The fourth study was carried out through focus groups discussions with 20 staff members about seven older peoples dying death and care. The analyses showed that conversations and discussions about death were rare. Death was surrounded by silence. It was disclosed that the older dying person's thoughts and attitudes of death were not explicitly known. A dignified death meant alleviation of bodily suffering and pain and meaningfulness. The staff's ethical reasoning mainly concerned their experience of a gap between their personal ideals of what a dignified end of life should include and what they were able to provide in reality, which could result in conscious stress. Staff members need training and support. End of life care demands competence and teamwork.A challenge for future care of older people would be to develop a nursing home environment in which human dignity is promoted.

Teori och behandling av flyktingbarn med svår psykisk ohälsa
Flyktingbarn som söker en fristad i vårt land påverkas ofta av egna svåra upplevelser av krig, våld och övergrepp. Många utvecklar allvarliga tecken till psykisk ohälsa. En del barn utvecklar ett apatiskt uppgivenhetssyndrom. När de så kallade apatiska flyktingbarnen dök upp i början av 2000-talet var bristen på kunskap stor. Inte sällan ledde det till att barnen inte fick hjälp eller att insatserna försämrade barnens tillstånd. I dag har både forskning och erfarenheterna av förebyggande insatser och behandling gjort stora framsteg.

Denna bok är den första i sitt slag om teori och behandling av barn med svåra uppgivenhetssyndrom, kunskaper som rör alla traumatiserade flyktingbarn som, om de inte behandlas på rätt sätt, riskerar att utveckla uppgivenhetssyndrom. Bokens författare är forskare, läkare, psykologer, sjukgymnaster, jurister, psykoterapeuter, sjuksköterskor, socionomer och socialpedagoger. Boken tar bland annat upp:

Effekter av långvarig stress på föräldra-barnrelationen
Biologiska och psykologiska effekter av trauma och uppgivenhetssyndrom
Beskrivningar av olika behandlingsmodeller
Nutritionsbehandling vid uppgivenhetssyndrom
Förebyggande insatser
Historiska erfarenheter av uppgivenhetssyndrom
Mänskliga rättigheter och etik
Asylprocessen och juridik
Hur påverkas behandlaren?
Boken riktar sig till alla som möter flyktingbarn med svår psykisk ohälsa eller uppgivenhetssyndrom: läkare, sjuksköterskor, studenter och andra inom vård, socialtjänst, skola, förskola, kommuner och andra myndigheter men också alla viktiga personer som finns runt barnen och deras familjer i sociala nätverk och frivilligorganisationer.

Syftet med denna kunskapsöversikt är att systematiskt kartlägga, granska och sammanställa kunskap om vilka utvärderade metoder och program som finns för att ge stöd till barn och/eller förälder när en förälder är beroende av alkohol eller andra droger. Kunskapsöversikten syftar också till att ge underlag för slutsatser om behov och riktning för vidare kunskapsutveckling och forskning.

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

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

The efficacy of a short-term attachment-based intervention for changing risk outcomes for children of maltreating families was examined using a randomized control trial. Sixty-seven primary caregivers reported for maltreatment and their children (1-5 years) were randomly assigned to an intervention or control group. The intervention group received 8 weekly home visits directed at the caregiver-child dyad and focused on improving caregiver sensitivity. Intervention sessions included brief discussions of attachment-emotion regulation-related themes and video feedback of parent-child interaction. Comparison of pre- and posttest scores revealed significant improvements for the intervention group in parental sensitivity and child attachment security, and a reduction in child disorganization. Older children in the intervention group also showed lower levels of internalizing and externalizing problems following intervention. This is the first study to demonstrate the efficacy of short-term attachment-based intervention in enhancing parental sensitivity, improving child security, and reducing disorganization for children in the early childhood period.

OBJECTIVE:
The authors investigated the efficacy of a 12-week manualized meta-cognitive therapy group intervention designed to enhance time management, organization, and planning in adults with attention deficit hyperactivity disorder (ADHD).

METHOD:
Eighty-eight clinically referred adults who met DSM-IV criteria for ADHD according to clinical and structured diagnostic interviews and standardized questionnaires were stratified by ADHD medication use and otherwise randomly assigned to receive meta-cognitive therapy or supportive psychotherapy in a group modality. Meta-cognitive therapy uses cognitive-behavioral principles and methods to impart skills and strategies in time management, organization, and planning and to target depressogenic and anxiogenic cognitions that undermine effective self-management. The supportive therapy condition controlled for nonspecific aspects of treatment by providing support while avoiding discussion of cognitive-behavioral strategies. Therapeutic response was assessed by an independent (blind) evaluator via structured interview before and after treatment as well as by self-report and collateral informant behavioral ratings.

RESULTS:
General linear models comparing change from baseline between treatments revealed statistically significant effects for self-report, collateral report, and independent evaluator ratings of DSM-IV inattention symptoms. In dichotomous indices of therapeutic response, a significantly greater proportion of members of the meta-cognitive therapy group demonstrated improvement compared with members of the supportive therapy group. Logistic regression examining group differences in operationally defined response (controlling for baseline ADHD severity) revealed a robust effect of treatment group (odds ratio=5.41; 95% CI=1.77-16.55).

CONCLUSIONS:
Meta-cognitive therapy yielded significantly greater improvements in dimensional and categorical estimates of severity of ADHD symptoms compared with supportive therapy. These findings support the efficacy of meta-cognitive therapy as a viable psychosocial intervention.

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

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

Eli har en storebror. Det är det många som har förstås. Men inte många har en storebror som Elis. Han är som en gåta tänker Eli ibland. Brorsan. En gåta som inte går att lösa. Ofta oroar sig Eli för brorsan. Men de hör ihop. Brorsan och Eli. Det är bara så. Och inte många har en storebror som Elis. Så det så. 

Eli har en storebror - en berättelse om syskonkärlek.

For many individuals, schizophrenia is a severe and enduring illness. While nurses need to understand the symptomatology of the illness in order to provide specific care and treatment, it also is important to find out how people with schizophrenia embody the illness. Capturing this knowledge will help nurses to provide more appropriate care to these individuals. This paper, which is taken from a larger qualitative study, reports the lived experience of young adults with schizophrenia. Three main themes emerged from the data, which highlighted how these individuals found meaning in schizophrenia. The first theme,"embodied temporality: illness as a catastrophic experience,"portrayed how schizophrenia affected participants' temporality or lived time. The second theme,"embodied relationality: illness as a mediator of social relationships,"reflected how the illness affected their relationships with others. The third theme,"embodied treatment: medications side effects as burdensome,"illustrated how the side effects of antipsychotic medications distorted the individual's perception of his or her body and how it compromised the ability to establish and maintain sexual relationships. The findings are important to mental health nurses because they highlight the need to be sensitive to how people with schizophrenia find meaning in their illness experience and to incorporate this knowledge into the care that they provide.

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

in our discussion of emotion and dysfunction, we have intimated that emotions are instructive about persons because both emotions and the personality are organized around the problem of surviving, getting along, and flourishing over the life course
begin by addressing the question of what an emotion is / describe our own [the authors'] recent work directed at illuminating what we see as one of the important issues in emotion theory—the role of cognitive appraisal
embed this work in a general model of emotion, which identifies the key variables and processes within a systems framework emphasizing person-environment relationships and cognitive mediation
illustrate how emotion theory makes firm contact with a variety of topics currently being pursued across diverse psychological disciplines, especially personality and social psychology
the adaptational problem and the evolution of emotion / appraisal theory / personality, society, and biology in emotion (PsycINFO Database Record (c) 2016 APA, all rights reserved)

In this landmark work, Richard Lazarus -- one of the world's foremost authorities -- offers a comprehensive treatment of the psychology of emotion, its role in adaptation, and the issues that must be addressed to understand it. The work provides a complete theory of emotional processes, explaining how different emotions are elicited and expressed, and how the emotional range of individuals develops over their lifetime. The author's approach puts emotion in a central role as a complex, patterned, organic reaction to both daily events and long-term efforts on the part of the individual to survive, flourish, and achieve. In his view, emotions cannot be divorced from other functions--whether biological, social, or cognitive--and express the intimate, personal meaning of what individuals experience. As coping and adapting processes, they are seen as part of the ongoing effort to monitor changes, stimuli, and stresses arising from the environment. After defining emotion and discussing issues of classification and measurement, Lazarus turns to the topics of motivation, cognition, and causality as key concepts in this theory. Next he looks at individual emotions, both negative and positive, and examines their development in terms of social influences and individual events. Finally, he considers the long-term consequences of emotion on physical health and well-being, and the treatment and prevention of emotional dysfunction. The book draws together the relevant research from a wide variety of sources, and distills the author's pioneering work in the field over the last forty years. As a comprehensive treatment of the emotions, the book will interest students, clinicians, and researchers involved in personality, social and clinical psychology, as well as cognitive and developmental psychology. It may also be used as a supplemental textbook in courses on the psychology of adjustment, emotion, and feeling.

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

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

The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.

The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.

The overall aim of this thesis is to 1) investigate the prevalence of stigmatizing experiences and beliefs of devaluation and discrimination among persons with mental illness, and 2) to investigate the relationship between beliefs of devalua¬tion/¬discrimination, rejection experiences and sociodemographic/clinical patient characteristics, social networks, self esteem, empowerment and subjective quality of life. The thesis comprises four papers. Part one of the study was designed as a cross-sectional study using a convenience sample of 200 consumers in current contact with mental health services or with earlier experiences of this. In order to reach subjects with different experiences of mental illness recruitment were made at inpatient and outpatient settings, rehabilitation units and among members of user organizations. This part of the study is presented in paper I-III. In the second part of the study 25 mental health user's who participated in the cross-sectional study were interviewed with regard to experiences of rejection related to their mental illness

Christopher Gillberg är upphovsman till ESSENCE, Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations. Det är ett paraplybegrepp som betonar den stora överlappningen mellan utvecklingsneurologiska/neuropsykiatriska störningar som alltför ofta betecknas som avgränsade tillstånd till exempel adhd, autism, DCD. Minst tio procent av alla barn under 18 år har eller har haft någon eller flera av dessa problemtyper/diagnoser.

Poängen med att utgå från ESSENCE-begreppet är att det kan bidra till tidig upptäckt och förståelse för barnets hela fungerande inte bara en diagnos. Barn kan ha svårigheter med motorkoordination, sensorisk perception, kommunikation/språk, aktivitet/impulsivitet, uppmärksamhet, social interaktion/ömsesidighet samt sömn och mat. Med anpassade och tidiga insatser kan vi hjälpa barnen och förebygga problem i vuxen ålder.

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

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

Material för diskussionsgrupper kring e-tjänster och ny teknik för anhöriga. Kanske är du anhörigkonsulent, vårdlärare eller anhörig och vill starta en studiecirkel? Genom inspirationsmaterialet får du lära dig mer om ny teknik och e-tjänster och diksutera frågor som är aktuella i det läge som du eller din organisation är i.

Denna kunskapsöversikt ger en bred beskrivning av några kunskapsområden när det gäller anhörigomsorg, äldre och etnicitet med hjälp av såväl svensk som internationell forskning. I boken presenteras exempelvis hur det är att uppleva språkproblem i mötet med den offentliga äldreomsorgen samt frågor och effekter kring förväntningar

Kommuner & landsting

Anhörigstöd ska kännetecknas av individualisering, flexibilitet och kvalitet. Men är det anhörigstöd som enligt lag ska erbjudas, ett anhörigstöd för alla?

Med rapporten Ett anhörigstöd för alla? Erfarenheter av att vara anhörig till en person med kognitiv sjukdom – med fokus på utrikes födda vill Migrationsskolan synliggöra anhörigas röst och har i en regional kartläggning tittat närmare på om det anhörigstöd som erbjuds i de skånska kommunerna är ett anhörigstöd för alla.

Rapporten vänder sig till yrkesverksamma som i sitt arbete möter anhöriga till en närstående med kognitiv sjukdom. Med rapporten vill författarna ge läsaren en möjlighet att reflektera över anhörigas erfarenheter av anhörigstöd.

Migrationsskolan är en del av Kunskapscentrum demenssjukdomar och har ett regionalt uppdrag i Region Skåne. Uppdraget består i att arbeta för jämlik och säker demensvård oavsett bakgrund.

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

The aim of this study was to describe and understand parents' perspectives in aid assessment for children according to The Swedish Act (1993:387) concerning Support and Service for Persons with Certain Functional Impairments (Lag 1993:387 om stöd och service till vissa funktionshindrade, LSS). The study took place in the county of Kronoberg, Sweden, and was based on a total of nine qualitative interviews. Four interviews were made with parents' of children who has interventions according to LSS (1993:387) and five interviews were made with LSS case workers. In our study we saw that parents' perspectives often is the largest amount of information that case workers take into account when assessing aid and as a case worker you listen to the parents perspectives to capture the child's and the family's needs. It also came clear that the parents' perspective is not only about the child's needs, but also includes the parent's own needs and their family's needs. The parents in the study felt that they made the decision about the choice of aid and considered themselves as the one who decides the family's requirements. It turned out that treatment and understanding from the case workers was important for gaining access to the best help and making parents feel listened to. Parental responsibility was of great importance for the assessment, and it often led to disagreement between parents and case workers. During the study, we saw that power existed in the relationship between case workers and parents, but that it could be moved and changed during the time of aid assessment.

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

Efter 9 månaders sjukskrivning och en lång väntan och oro har mina allra värsta farhågor bekräftats. Min man har Alzheimers sjukdom! Han är bara 62 år och vi skulle njuta av livet, barnen och barnbarnen tillsammans. Ville helst bara sätta mig någonstans för mig själv och gråta ut. Hur ska vårt liv bli? Min man är samlad och försöker vara stark. Vet inte om han har tagit in beskedet riktigt fullt ut ännu. Hur tänker han och vad kommer att hända med honom? Mardrömmen som jag känt närvaro av under ett par års tid har nu kommit och knackat på vår dörr. Jag har i grunden en positiv inställning till det mesta och har oftast förlitat mig på att jag har förmågan att hitta lösningar på olika problem som uppstått i såväl arbetslivet som privatlivet. Min livsfilosofi att det mesta kommer att gå bra har alltid gett mig tillförsikt till framtiden och hur livet skulle utveckla sig. Den 17 september 2007 blev jag ordentligt omskakad i min livsfilosofi och en avgrund öppnades framför mig.

Avhandling för doktorsexamen

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

Syftet med boken är i första hand att belysa vad som kan hända anhörig och patient vid långvariga sjukhusvistelser. I boken belyses hur det kan gå till i verkligheten, något man kanske inte hinner uppmärksamma vid kortare vistelser.

Texten är skriven ur ett personligt och kritiskt perspektiv. Den belyser fritt ur hjärtat vad jag som anhörig, tänkt och känt i situationer som skakat om mig. Det är också häpnadsväckande hur inblandade tagit för givet att en anhörig automatiskt blir anhörigvårdare utan samtal om vad det kan innebära och vilka rättigheter man har.

Genom att jag skrivit detta har jag kanske mildrat min egen sorg och även distanserat mig en aning från mitt eget ångestfyllda öde.

Det har tagit tid att skriva den här boken. Av olika anledningar har jag varit tvungen att ta pauser för att återhämta mig psykiskt och fysiskt samt att förkovra mig ämnesmässigt. Under långa perioder infann sig inte heller den nödvändiga tid som behövdes för att fortsätta skrivandet.

Boken vänder sig till utbildningar på högskole-, universitets- och gymnasienivå. Den är också viktig för sjukhuspersonal, personal på geriatriska avdelningar, kommunala och privata hemtjänstföretag samt anhöriga och andra intresserade.

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

Regeringens skrivelse 2007/08:39.

Handlingsplanen är en del i individ- och familjenämnden, nämndens för funktionshindrade och äldrenämndens verksamhetsplanering för att erbjuda stöd som underlättar för de personer som vårdar eller stödjer en närstående

text och illustrationer: Elisabet Alphonse

barn/ungdom

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

Examining quality of life in 28 European countries, including the acceding and candidate countries as well as the current Member States of the EU, this report explores how Europeans perceive their health, to what extent they display healthy and unhealthy lifestyles, how easily they can access their national health care system and how satisfied they are with its performance.The analysis is based on data from the European Commission's Eurobarometer survey carried out in the acceding and candidate countries in Spring 2002 and standard EU 15 Eurobarometers. A summary of this report is also available

BACKGROUND: Informal caregiving by relatives is a great resource for individuals
as well as for society, but the caregiving role is associated with health
problems for the caregiver. This study aimed to compare caregivers' self-rated
health, number of recent days with poor health and psychological wellbeing with
that of non-caregivers in a general Swedish population.
METHODS: From 2004 to 2013, 90,845 Swedish people completed a postal
questionnaire about their health, number of recent days with poor health during
last month, psychological wellbeing and if they were performing caregiving or
not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and
negative binomial regression models were used to investigate associations between
being a caregiver or not and health and wellbeing. Negative binomial regression
was used to assess the relation between caregiver status and recent days with
poor health or functioning.
RESULTS: Eleven percent reported having a caregiving role. Caregivers reported
poorer self-rated health compared to non-caregivers, also in adjusted models;
odds ratio (OR): 1.07 with a 95% confidence interval (CI): 1.01-1.13. Caregivers
also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22,
CI: 1.15-1.30. Caregiving status was associated with more recent days with poor
physical health and more recent days with poor mental health.
CONCLUSIONS: This study suggests that caregivers have worse perceptions in
self-rated health and psychological wellbeing compared with non-caregivers,
indicating that the role of caregiver is adversely associated with health. This
association also appears in terms of reporting days of poor health in the last
month. The underlying mechanism of these associations, including the potential
detrimental health effects of being a caregiver, needs to be investigated in
longitudinal studies.

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

Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors -- smoking, sedentary behavior, and regular soda and fast-food consumption -- as well as a global health-risk measure. Results: Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Implications: Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness.

Being a family member of a patient who is being treated in an acute care setting
for cancer often involves a number of challenges. Our study describes Norwegian
cancer care health professionals' perceptions of family members who served as
family caregivers (FCs) and their need for support during the in-hospital cancer
treatment of their ill family member. Focus group discussions were conducted with
a multidisciplinary team of 24 experienced social workers, physicians, and nurses
who were closely involved in the patients' in-hospital cancer treatment and care.
Drawing on qualitative hermeneutic analysis, four main themes describe health
professionals' perceptions of FCs during the patient's in-hospital cancer care:
an asset and additional burden, infinitely strong and struggling with
helplessness, being an outsider in the center of care, and being in different
temporalities. We conclude that it is a challenge for health care professionals
to support the family and create room for FC's needs in acute cancer care. System
changes are needed in health care, so that the patient/FC dyad is viewed as a
unit of care in a dual process of caregiving, which would enable FCs to be given
space and inclusion in care, with their own needs simultaneously considered
alongside those of the patient.

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

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

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

Hela människan-hjulet är en handfast och praktiskt inriktad metodbok för alla som vill arbeta med stödgrupper för barn, unga, vuxna eller familjer. För att på ett ansvarsfullt sätt kunna arbeta med stödgrupper krävs grundläggande kunskaper inom många olika livsområden. Detta belyses i bokens teoretiska första del som handlar om genus och etik, alkohol och droger, fattigdom och folkhälsa, stödfunktioner och prevention, lek, kreativitet, livsåskådning samt känslor. På denna teoretiska kunskapsbas, tron på mänskliga rättigheter och speciellt barnkonventionen, vilar metodiken i Hela människan-hjulet. I andra delen finns instruktioner och arbetsmaterial till de gruppträffar som utgör den praktiska tillämpningen av metoden. Materialet kan även laddas ner från www.studentlitteratur.se/helamanniskanhjulet. Metoden är utarbetad och prövad i praktiska och professionella sammanhang mot bakgrund av stor teoretisk kunskap och passar yrkesverksamma inom de flesta områden inom socialt arbete eller stödjande verksamheter.

The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.

ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade

This paper describes the work undertaken with children and adolescents who have lost a significant person in their lives through death. The author works with the paediatric nurse member of a palliative care team running groups for children and adolescents who have been bereaved.

The aim of the project is to invite the child/adolescent as soon as possible after bereavement to participate in groups with others who are grieving. This groups allow participants to express their feelings through art, play and discussion in a safe and confidential environment.

It is hoped by using a preventative approach such as this, that the incidence of some of the results of unresolved childhood grief, such as failed relationships, depression and ill-health in adult life can be minimised.

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

This article reports on an analysis of informal help and caregiving in Sweden with, for the first time, a focus on patterns of change over 17 years regarding scope, type of caregivers and the recipients of help. The discussion is based on results from a national survey repeated four times between 1992 and 2009. In the 1990s, the figures were stable, but from the late 1990s to 2009, there seems to have been a dramatic increase in the extent of informal help giving. Concerning types of helpers, the patterns implied involvement not only from family members, but also from other types of helpers. Two interpretative perspectives were used in the analysis: the first from recent welfare state changes and the substitution argument; the second from the present debate on civil society and its possible and changing role. These perspectives represent two partly complementary approaches to the understanding of the dynamics of informal involvement in contemporary Swedish society.

Cancer is bad news. It' s frightening to even think about it. Now think how frightening it would be for your children to know you have cancer. How do you tell them? How do you deal with the trauma and the pain? How do you prepare for the emotional and psychological upheaval a family endures when a parent has cancer? Peter Van Dernoot has gathered the real-life stories and experiences of over twenty parents who have been diagnosed with cancer. They share their deepest fears and their highest hopes as they provide the reader with invaluable advice, guidance and inspiration. Now including all-new stories from parents and advice from professional counselors, this groundbreaking book is a very special gift from families affected by cancer to families affected by cancer

Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.

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

The Holocaust has bequeathed to contemporary society a cultural lexicon of intensely powerful symbols, a vocabulary of remembrance that we draw on to comprehend the otherwise incomprehensible horror of the Shoah. Engagingly written and illustrated with more than forty black-and-white images, Holocaust Icons probes the history and memory of four of these symbolic relics left in the Holocaust's wake.

Jewish studies scholar Oren Stier offers in this volume new insight into symbols and the symbol-making process, as he traces the lives and afterlives of certain remnants of the Holocaust and their ongoing impact. Stier focuses in particular on four icons: the railway cars that carried Jews to their deaths, symbolizing the mechanics of murder; the Arbeit Macht Frei ("work makes you free") sign over the entrance to Auschwitz, pointing to the insidious logic of the camp system; the number six million that represents an approximation of the number of Jews killed as well as mass murder more generally; and the persona of Anne Frank, associated with victimization. Stier shows how and why these icons—an object, a phrase, a number, and a person—have come to stand in for the Holocaust: where they came from and how they have been used and reproduced; how they are presently at risk from a variety of threats such as commodification; and what the future holds for the memory of the Shoah.

In illuminating these icons of the Holocaust, Stier offers valuable new perspective on one of the defining events of the twentieth century. He helps readers understand not only the Holocaust but also the profound nature of historical memory itself.

Dissertation

Families with sick children often prefer home care to hospital care, and home care services (HCS)
are increasing worldwide with limited evidence on how to provide high quality HCS in different
settings. This thesis aims to provide a comprehensive view of HCS for sick children when provided
by county-based HCS organized to care for adults and children.
A convergent mixed methods design with data-collection 2015–2019 was used. Phenomenographic
analysis of interviews with 36 HCS healthcare professionals showed that caring for children was a
challenging but rewarding task. Hermeneutic phenomenology was used to analyse 37 family
member's lived experience of HCS as a possibility to strengthen family life and health when trustful
alliances were built with HCS healthcare professionals. A review of referrals to HCS during a threeyear period showed that 171 children with various ages, diagnoses and caring needs received HCS.
Calculations of one year's healthcare costs for 32 children who received care both at the hospial
and by HCS showed no increase in costs compared to estimated costs for only hospital care. Annual
productivity losses due to 25 parents' absenteeism from work, estimated from questionnaire-based
data, showed continued productivity losses during periods of HCS.
With trustful alliances between families, HCS and paediatric departments, cost-sustainable countybased HCS can be provided with high levels of family acceptability and positive effects on family
life and health in sick children of various ages, illnesses and stages of illness. However, unequal
accessibility and utilization may jeopardize care based on child and family needs.

A prospective study of 38 mothers with IQs less than 75 and 27 mothers with IQs over 85 who were also low income was conducted. This study was designed to distinguish between children's developmental risk associated with maternal disability and risk related primarily to poverty. Findings from administration of the HOME inventory showed that mothers with intellectual limitations had significantly lower scores, indicating greater developmental risk for their children due to environmental deprivation. Most of the variance between groups was found on the interaction subscale. This suggests that strategies focused on interaction will be beneficial in assisting mothers with intellectual limitations in raising their children.

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

This review integrates and critically evaluates what is known about family characteristics associated with childhood Attention-Deficit/Hyperactivity Disorder (ADHD). Evidence suggests that the presence of ADHD in children is associated to varying degrees with disturbances in family and marital functioning, disrupted parent-child relationships, specific patterns of parental cognitions about child behavior and reduced parenting self-efficacy, and increased levels of parenting stress and parental psychopathology, particularly when ADHD is comorbid with conduct problems. However, the review reveals that little is known about the developmental mechanisms that underlie these associations, or the pathways through which child and family characteristics transact to exert their influences over time. In addition, the influence of factors such as gender, culture, and ADHD subtype on the association between ADHD and family factors remains largely unknown. We conclude with recommendations regarding the necessity for research that will inform a developmental psychopathology perspective of ADHD.

Doktorsavhandling

Children with autism spectrum disorder (ASD) have shown high variability in learning outcomes in response to evidence-based interventions, suggesting a need for individualization of intervention programmes for each child and his/her family. To explain this variability and develop effective intervention strategies research suggested focusing on identification of important contextual factors that might influence the effectiveness of a specific intervention for each child such as family cultural characteristics and characteristics of service settings and systems. The overarching aim of the thesis was to identify and describe proximal and distal environmental factors and processes affecting implementation and provision of interventions and services for young children with ASD and their families within the context of the Swedish support system. Two theoretical models guided the research project: Bronfenbrenner's bioecological model of human development and Wachs's multiple-influences model of individual variability. The specific objectives addressed using a mixture of qualitative and quantitative methods were: (i) to investigate the scope of reporting ethnicity and other cultural factors in research publications by Swedish scholars involved in empirical research in ASD in children and youth (Study 1); (ii) to explore perceptions of autism, beliefs about its causes, and treatment preferences expressed by parents of children with ASD from culturally, ethnically and linguistically diverse backgrounds (Study 2), and (iii) to explore grandparents' perceived needs in relation to having a young grandchild with ASD (Study 3). The results of data triangulation across the three studies showed that within the context of the Swedish support system, three proximal environmental factors were associated with identification of ASD in young children and families' use of services and interventions before and after the child was diagnosed with ASD. These were parents' belief systems (including perceptions about child's autism, help-seeking behaviours, and treatment preferences); the role of preschool teachers, and the role of other service providers, such as healthcare professionals. Data triangulation singled out seven groups of distal environmental factors: beliefs of extended family; family cultural, ethnic and linguistic background; family socio-economic characteristics (occupation and education level); Swedish formal support system enacted through various legislative acts; international laws and regulations; information sources (mass media and social media), and conceptualization and clinical definition of ASD (as reflected in DSM and ICD classifications). Findings also highlight the importance of taking into consideration of role of ASD researchers as an additional distal environmental factor affecting implementation of interventions and services for culturally and linguistically diverse children with ASD and their families.The results of the studies provide insights into understanding of families' belief systems about ASD causes, treatment preferences, and needs that are essential for planning and provision of family-level early interventions for children with ASD in the cultural context of Sweden. Implications for practice and future research are discussed.

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

Familjefokuserad omvårdnad
Boken med originaltiteln Beliefs The heart of healing in families and illness ger en samlad bild av vad familjefokuserad omvårdnad innebär, men framför allt ger den en bild av den enorma kraft och potential som finns i våra föreställningar om olika fenomen. Detta gäller såväl sjuksköterskors föreställningar om familjer, hälsa, ohälsa/sjukdom som familjemedlemmars föreställningar om t.ex. sjuksköterskors roll och ohälsans/sjukdomens orsak och behandlingsmöjligheter för tillfrisknandet.

Författarna har genom sin långa kliniska erfarenhet samlat många fantastiska exempel från sitt arbete med familjer med varierande ohälso-/sjukdomsbilder. Dessa berättelser genomströmmar hela boken. De levandegör budskapet om att våra föreställningar och vår biopsykosociala och andliga struktur är avgörande för hur omvårdnaden av familjer ska leda till ett ökat välbefinnande och upplevd hälsa för dem.

Eftersom denna bok är skriven av sjuksköterskor för sjuksköterskor och sjuksköterskestudenter har vi valt att rikta texten mot mötet mellan sjuksköterskan och familjen. Boken har även en familjeterapeutisk utgångspunkt, vilket gör att även andra yrkesgrupper kan ha glädje av boken.

The academic underachievement of looked after children is well known. By involving foster
carers in a Paired Reading intervention a Swedish project tried to address this issue,
replicating a successful British trial. The aim of my thesis was to study the variations in the
foster carers' experiences of this literacy intervention. Reading reports from 100 children
were collected and qualitative interviews with 15 foster parents were analyzed using concepts
from motivational psychology. The results revealed that although some had reported
difficulties a majority of the participants had implemented the program in an acceptable way.
Many carers had noticed improvements in the child's reading ability and some reported
improved relations, but in a few cases rigidly following the method had led to conflicts. The
interviews showed that the completion of the literacy training was conditioned on the
children's pleasure/joy in reading which in turn may require adjustments in the day-to-day
delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to
be able to arouse enthusiasm in the child. The results suggest that it is possible to engage
foster parents in the improvement of foster children's literacy skills.

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

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

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

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation. A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV). The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV). Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation.A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV).The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV).Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

Hur barn påverkas av migration är något vi har relativt liten kunskap om, både nationellt och internationellt. I Norden lever de flesta barn sina liv som barn gör mest, i en vardag som rymmer lek, skola och familjeliv. Men det finns erfarenheter som påtagligt påverkar tillvaron för vissa barn; migration är en sådan erfarenhet.
Vilka strategier utvecklar barn för att hantera sin situation i

Contemporary standards and policies advocate carer involvement in planning, implementing, and evaluating mental health services. Critics have questioned why such standards and policies fail to move from rhetoric to reality, this particularly being applicable to carer involvement within acute psychiatric settings. As there is only limited UK research on this topic, this interpretive phenomenological study was undertaken to explore the perceived level of involvement from the perspective of carers of service users who were admitted to acute inpatient settings within the previous 2 years. Interviews were conducted with four individuals who cared for a loved one with a mental illness. The interview analysis was influenced by Van Manen, whose interpretive approach seeks to generate a deeper understanding of the phenomenon under study. Four main themes emerged: powerlessness, feeling isolated, needing to be recognized and valued, and a desire for partnership. The findings reflect the views expressed by carers in other studies, identifying that while carers seek to work in partnership with health-care professionals, at a clinical level they often feel excluded. The study concludes by discussing ways of improving and promoting carer involvement and advocating a partnership in care approach within acute psychiatry

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Purpose: The aim of this article is to examine the component of "personal factors" described as a contextual factor in the ICF and ICF-CY. Methods: A critical examination of the construct of "personal factors" and description of the component was made with reference to conceptual and taxonomic criteria. Results: The "personal factors" component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of "personal factors" is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of "personal factors" in documenting personal attributes, including "blaming the victim". Conclusion: In the absence of formal codes, any application of the component of "personal factors" lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for "personal" or any other factors in the ICF/ICF-CY.
Implications for Rehabilitation
A central contribution of the ICF/ICF-CY is the universal language of codes for the components of body structure, body function, activities and participation and Environmental Factors.
As such the codes provide taxonomical legitimacy and power for documenting dimensions of functioning and disability in clinical and rehabilitation contexts.
As there are no codes of "personal factors", there is no basis for documentation of the component.
Demographic information, if needed for identification, should be recorded in customary formats, independent of any component or codes of the ICF/ICF-CY.

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

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

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

Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.

Syftet med boken är att ge föräldrar till barn med funktionshinder redskap att aktivt samarbeta med habiliteringsverksamheten. Boken består av korta textavsnitt som kan tjäna som kunskapskälla och inspiration, samt skattningsformulär som föräldrar kan använda sig av som redskap för att tydliggöra för sig själva och för habiliteringen vad man vill ha hjälp med.

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

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

Många svenska barn far illa idag. Den ojämförligt största gruppen är barn till alkoholmissbrukare. Ändå är både barnen och deras föräldrar i många avseende glömda. I boken beskrivs både barnens och föräldrarnas livssituation. Föräldraskapet är en stark kraft, som måste tillvaratas för att stödja dessa utsatta familjer. Både barn och föräldrar behöver bli sedda. För att det skall bli möjligt krävs bättre kunskapet och mer samarbete mellan mödra- och barnhälsovård, barnomsorg, skola, socialtjänst och missbruksvård. I bokens andra del finns konkreta förslag på hur man kan arbeta för att stödja både barn och föräldrar i familjer med missbruk, men även i andra utsatta familjer. Boken vänder sig både till studerande och yrkesverksamma. Tredje reviderade upplagan.

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

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.

The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.

Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

This article describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. A total of 20 professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. They also afforded carers the opportunity to explore difficult emotional issues, suggesting the need to develop services to help carers deal with their feelings.

The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

The purpose of this article is to discuss the implementation of the International Classification of Functioning, Disability and Health (ICF), and the ICF version for Children and Youth (ICF-CY), within the context of augmentative and alternative communication (AAC). First, the use of the ICF and the ICF-CY in AAC research is analyzed. Second, examples of training and implementation of ICF from other contexts besides AAC are provided. Finally, we synthesize data to provide directions for future implementation of the ICF and ICF-CY in the field of AAC. We conclude that, within AAC, organizational routines and intervention documents need to be adapted to the universal language and classification framework of the ICF and ICF-CY. Furthermore, examples are needed to demonstrate how factors affect implementation at organizational and individual levels.

Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.

Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.

Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.

Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Abstract
AIMS AND OBJECTIVES:
The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
BACKGROUND:
There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
DESIGN AND METHODS:
Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
RESULTS:
Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
CONCLUSION:
To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
RELEVANCE TO CLINICAL PRACTICE:
The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.

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

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

This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.

The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.

METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.

RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.

CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.

This article provides a summary of different strategies used to support the complex communication needs of high school students with severe intellectual disabilities and additional impairments who are included in general education classrooms. The premise of this paper is that students with severe cognitive disabilities benefit from inclusive educational opportunities at the high school level and can acquire critical communication skills, given the necessary support. High school students typically communicate for a variety of purposes and use a variety of different modes of communication. This variety in purpose and mode extends to students who do not use speech and have other severe disabilities. The role that peers can play in the development of communication for high school students is described, as well as the need to critically evaluate the learning environment in order to identify communication opportunities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Background—Spousal caregivers of cancer patients suffer psychological and physical burdens that may affect their risk of subsequently developing coronary heart disease and stroke.

Methods and Results—Cancer patients were identified in the Swedish Cancer Registry, and information on their spouses was retrieved from the Swedish Multi-Generation Register. Follow-up of caregivers was performed from the date of the first diagnosis of cancer in their spouses through 2008. Standardized incidence ratios were calculated for spousal caregivers of cancer patients compared with those without an affected spouse. After the cancer diagnosis in wives, the risks of coronary heart disease, ischemic stroke, and hemorrhagic stroke in husbands were 1.13 (95% confidence interval [CI], 1.10–1.16), 1.24 (95% CI, 1.21–1.27), and 1.25 (95% CI, 1.18–1.32), respectively. The corresponding risks in wives with an affected husband were 1.13 (95% CI, 1.10–1.16), 1.29 (95% CI, 1.26–1.32), and 1.27 (95% CI, 1.19–1.34). The increases were consistent over time and were more pronounced if the spouse was affected by a cancer with a high mortality rate, such as pancreatic and lung cancers.

Conclusions—Spousal caregivers of cancer patients have increased risks of coronary heart disease and stroke that persist over time. Clinical attention should be paid to spousal caregivers, especially those caring for cancer patients with high mortality rates.

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

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

Abstract

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

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

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

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

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

This paper describes a research-based program designed to promote resilience of parentally-bereaved children and their bereaved surviving parent. A contextual resilience model is described as the conceptual foundation of the program. The program is designed to enhance specific parenting and coping skills and to help caregivers and children accomplish goals they set for themselves at the outset of the program. The content of the twelve-sessions and the approach to teaching and supporting parents work on their program and personal goals are described. Evaluation of the program using a randomized experimental design indicates that the program is effective in promoting resilient outcomes of children and of the bereaved parent six-years following their participation in the program.

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

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

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

AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.

Many people with dementia are cared for in their homes by family caregivers. As
the dementia progresses, admission of the family member to a nursing home becomes
inevitable. The aim of this meta-ethnographic study was to describe caregivers'
experiences of relinquishing the care of a family member with dementia to a
nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo,
between the years 1992 and 2012, was performed, and 10 qualitative articles,
based on 180 family caregivers' experiences, were included. The family
caregivers' described their experiences as a process that went from being
responsible for the decision, through living with the decision, adjusting to a
new caring role and having changed relationships. They felt unprepared and lonely
with these changes. They experienced loss, guilt and shame, but also feelings of
relief. Their roles in the nursing home environment were to make sure that the
individual needs of the person with dementia were respected and to monitor the
quality of care. They wished to maintain their relationship with the person with
dementia and to establish meaningful relationships with caring staff. The process
of relinquishing care is similar to a crisis process, which starts with a turning
point, followed by a coping face and finally the outcome of the process. The
adaption to the new situation can be facilitated if the family caregivers are
recognised as partners in the care of the person with dementia. The family
caregivers' unique knowledge of their relatives' previous life story should be
acknowledged in both care planning and daily care. Welcoming family caregivers to
regular meetings with staff can contribute to increase the feeling of
partnership. Offering staff clinical supervision could be one way of preparing
them to deal with the emotional strain reported by family caregivers.

Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member

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

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

The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using the Gottfries-Bråne-Steen scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18-month follow-up irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers' sense of burden, satisfaction, and ability to delay nursing home placement.