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Family and carer participation in mental health care: perspectives of consumers and carers in hospital and home care settings

Lakeman, Richard (2008)

It is widely accepted that family and carer participation in adult mental health care is desirable. However, rarely is service development informed by representative opinions of both carers and service users. This study took place in the context of a larger project to introduce and evaluate practice standards relating to family participation. The aim of this paper is to explore the perceptions of service users and carers to carer participation in adult mental health services. One hundred and twenty-nine service users and 86 family members recruited via hospital and community settings completed a survey which addressed obstacles to family participation, perceived benefits of participation and areas for improvement. Many service users and family were entirely satisfied with existing levels of family participation. Different needs for information, support and the nature of participation in mental health care are highlighted in acute hospital and community settings. Across settings, the provision of support and accessing services were identified as the most useful aspects of family participation. Meaningful carer and family participation in mental health care should proceed from respectful connection with carers and be informed by need which will vary depending on setting and circumstances.

Family environmental and genetic influences on children’s future chemical dependency.

Kumpfer KL, De Marsh JP. (1985)

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Föräldraskap och missbruk: att ta upp frågor om föräldraskap i missbruks- och beroendevården

Socialstyrelsen (2012)

Genom svaren på de frågor som ställs om familjen är utredare och behandlare i missbruks- och beroendevården ibland de enda som känner till att barnen lever i en familj med missbruk. De behöver uppmärksamma barns och ungas situation, så att deras rättigheter, behov av information, råd och stöd tillgodoses.

Syftet med skriften är att underlätta för personal inom missbruks- och beroendevården att ta upp föräldraskap och samtala med föräldern om barns situation i utredning eller behandling. Den förespråkar ingen särskild modell eller metod i arbetet, utan tar upp förhållningssätt och innehåll i samtal om föräldraskap. Den tar även upp samarbetet med socialtjänstens barn- och ungdomsvård. Skriften riktar sig till utredare och behandlare inom socialtjänsten, hälso- och sjukvården samt övrig missbruks- och beroendevård, och kan också vara av intresse för socialtjänstens barn- och ungdomsvård. Den utgår ifrån situationen vid alkoholmissbruk eller -beroende, men kan i väsentliga delar också vara relevant vid föräldrars missbruk av narkotika eller läkemedel.

Föräldrastöd i teori och praktik

Ferrer-Wreder, L., H. Stattin, Karlsson, E. (2003)

Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.

Gemensam problemlösning vid Alternativ och Kompletterande Kommunikation

Zachrison G, Rydeman B, Björck-Åkesson E. (2001)

Den här skriften handlar om hur man genom samarbete kan komma fram till
vardagsfunktionella lösningar för personer med kommunikationshandikapp. Utgångspunkten
är den modell för familjemedverkan och gemensam problemlösning som utvecklats av Mats
Granlund och Eva Björck-Åkesson, här speciellt tillämpad på AKK-området. Modellen för
gemensam problemlösning har utformats och använts vid åtgärder för vuxna och barn i behov
av särskilt stöd (Granlund, 1988; Björck-Åkesson & Granlund, 2000). Den har utvärderats vid
forskningsstiftelsen ALA, Stockholm och inom forskningsprogrammet CHILD (ChildrenHealth-Intervention-Learning-Development)
vid Mälardalens Högskola. Likaså har den
använts som grund för en interventionsmodell i ett projekt kring kommunikation (KomP) på
Bräcke Östergård, Göteborg, 1995-1998, (Zachrisson, 1998). Ytterligare erfarenhet av
gemensam problemlösning kring alternativ och kompletterande kommunikation har tillförts
genom projektet "Kommunikation genom teknik – ur ett vardagsperspektiv", ett projekt i
samarbete mellan kommunikations- och dataresurscentren DART i Göteborg och DaKo i
Halmstad 1999-2001, finansierat av KFB (Vinnova).
Skriften riktar sig främst till arbetsterapeuter, logopeder, pedagoger och andra som i sitt yrke
kommer i kontakt med personer som använder eller har behov av alternativ och
kompletterande kommunikation, AKK. Syftet är att beskriva en modell för samverkan där
brukaren, de som han/hon samspelar med och experter/professionella kan mötas. Alla kan
bidra med sina olika kunskaper och erfarenheter i arbetet med att utveckla bra lösningar för
brukaren som ger henne/honom möjligheter att kommunicera i vardagen på ett
tillfredställande sätt.
En ofta förekommande fråga vid gemensam problemlösning är varför begreppet "problem"
används. Anledningen till att vi valt att använda detta begrepp är att det är generellt och kan
inbegripa olika former och nivåer av svårigheter. Det går emellertid bra att använda begrepp
som svårigheter eller frågeställningar. I praktiken pratar man ofta om svårigheter. Naturligtvis
är det viktigt att i första hand se till personens resurser och till resurser i omgivningen och
använda dessa i åtgärdsarbetet.
Gerd Zachrisson, arbetsterapeut vid kommunikations- och dataresurscentret DART i
Göteborg har tagit initiativ till skriften och har sammanställt den tillsammans med Eva
Björck-Åkesson, professor i pedagogik vid Mälardalens Högskola och Bitte Rydeman,
logoped vid dataresurscentret DaKo i Halmstad och doktorand vid Institutionen för Lingvistik
vid Göteborgs Universitet.

Halliday's Communicative-Functional Model Revisited A Case Study

Keshavarz, M. H. (2001)

The author of this study investigated the variety of functions used by a bilingual infant to provide further evidence for the communicative-functional approach to child language acquisition, compared the development of pragmatic functions in a monolingual and a bilingual child, and devised a categorization system that can be applied to child language acquisition data by other researchers in the field. Accordingly, data collected from a Persian-English bilingual child during a period of 10 months, as part of a longitudinal study, were analyzed, and a taxonomy of pragmatic functions the participant used was established. Analysis of the data indicated that despite certain differences in the frequency and distribution of pragmatic functions the participant employed in the present study (bilingual) and those used by Halliday's monolingual child, the two studies demonstrated that both children developed pragmatic functions from a very early age. The theoretical implication of this study is that the development of pragmatic functions is a natural tendency in young children, whether monolingual or bilingual. The practical outcome of the study is a proposed categorization system that is intended to facilitate the analysis of child language acquisition data from a communicative-functional perspective.

His helping hands – adult daughter´s perceptions´ of fathers with caregiving responsibility

Eriksson, H., Sandberg, J., Holmgren, J., & Pringle, K. (2011)

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

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

HIV-postive mothers´ disclosure of their serostatus to their young children: A review

Murphy, D.A. (2008)

One challenge faced by mothers living with HIV (MLWHs) is the decision about whether or not to disclose their HIV status to their young children, and how best to carry out the disclosure. Disclosure of their serostatus has emerged as one of the main concerns MLWHs have, and that decision can result in high levels of psychological distress. Concerns are exacerbated among MLWHs with younger children, due to the fact that they face additional worries, such as whether the child is old enough to understand, or will be able to keep the information confidential. A great deal of recent research—within approximately the past decade—has been conducted to investigate maternal disclosure of HIV, and the outcomes on children. This paper reviews the current state of the research literature, focusing on factors that appear to influence whether or not mothers chose to disclose; characteristics of children who have been made aware of their mothers' serostatus relative to children who remain unaware; factors that appear to influence children's reactions to maternal disclosure; and implications of this research as well as future research directions.

Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods

Hodgins, DC., & Shimp, L. (1995)

Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.

Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach

Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J. (2003)

Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.

Implementing child-focused family nursing into routine in adult psychiatric practice: Hindering factors evaluated by nurses

Korhonen T, Vehviläinen-Julkunen K, Pietilä A-M. (2008)

Keywords:
child;family nursing;family nursing interventions;psychiatric nursing
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.

Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.

Dawe S, Harnett PH, Rendalls V, Staiger P. (2003)

Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.

Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Dentinger E, Clarkberg M. (2002)

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

Inte bara Anna : asperger och stress

von Zeipel Elisabet, Alm Kerstin (2015)

Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.

Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.

Intentional communication acts expressed by children with severe disabilities in high-rate contexts

Bruce, S. M., & Vargas, C. (2007)

The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.

Interaction between adult patients’ family members and nursing staff on a hospital ward

Åstedt-Kurki, Päivi, Paavilainen, Eija, Tammentie, Tarja, Paunonen-Ilmonen, Marita (2001)

The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.

Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.

Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.

Interdisciplinary Studies of Childhood Ethics: Developing a New Field of Inquiry

Carnevale, F. A., Campbell, A., Collin-Vezina, D., & Macdonald, M. E. (2013)

The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.

Internet-based parent management training: A randomized controlled study

Enebrink, P., Högström, J., Forster, M., & Ghaderi, A. (2012)

OBJECTIVE:
The current study evaluated the efficacy of an Internet-based parent-training program for children with conduct problems. Dose-response ratio and costs for the program were also considered.
METHOD:
Parents of 104 children (aged 3-12 years) were randomly allocated to either parent training or a waitlist control condition. Diagnostic assessment was conducted at baseline and parent ratings of child externalizing behaviors and parent strategies were completed before and after treatment and at 6-month follow-up.
RESULTS:
At post-treatment assessment, children whose parent(s) had received the intervention showed a greater reduction in conduct problems compared to the waitlist children. Between group intent-to-treat effect sizes (Cohen's d) on the Eyberg Intensity and Problem scales were .42 and .72, respectively (study completers .66 and 1.08). In addition, parents in the intervention group reported less use of harsh and inconsistent discipline after the treatment, as well as more positive praise. Effects on behavior problems were maintained at 6-month follow-up.
CONCLUSIONS:
The results support the efficacy of parent training, administered through Internet, with outcomes comparable to many of the group-based parent training programs. The efficacy, low cost, and higher accessibility make this intervention a fitting part in a stepped-care model.

Interpersonal interactions and relationships (D710-D799).

Bailey SN, Lach LM, Byford-Richardson K. (2012)

Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice

Stover, C. S., Meadows, A. L., & Kaufman, J. (2009)

The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].

Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens

Vinnerljung B, Sallnäs M. (2008)

In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers

Sandberg, J., Eriksson, H., Holmgren, J., & Pringle, K. (2016)

The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.

De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.

Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?

Sloper, P., Greco, V., Beecham, J., & Webb, R. (2006)

Background  Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.

Methods  A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).

Results  The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.

Conclusions  Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.

Lived experiences of being a father of an adult child with Schizofrenia

Nyström M, Svensson H. (2004)

The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.

Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families

Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A. (2014)

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

Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities

Hastings, Richard, P. (2007)

Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. (2002)

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

Loss and grief in patients with Schizophrenia: Onliving in another world

Mauritz M, Van Meijel B. (2009)

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Manual for the ASEBA Preschool Forms and Profiles

Achenbach TM, Rescorla LA. (2000)

The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.

Mapping images to objects by young adults with cognitive disabilities

Carmien, S. & Wohldman E. (2008)

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

Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.

Meagher G, Szebehely M, editors (2013)

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.

Gosman-Hedstrom G, Dahlin-Ivanoff S. (2012)


INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans

Hugemark, Agneta (2004)

This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.

Mediation of the effects of the Family Bereavement Program on mental health problems of bereaved children and adolescents

Tein, J., Sandler, I.N., Ayers, T.S., & Wolchik, S.A. (2006)

This study presents an analysis of mediation of the effects of the Family Bereavement Program (FBP) to improve mental health outcomes of girls at 11 months following program participation. The FBP was designed based on a theory that program-induced change in multiple child and family level mediators would lead to reductions in children's mental health problems. Mediational models were tested using a three wave and a two wave longitudinal design. Using a three wave longitudinal design, FBP effects on three variables at T2 (increased positive parenting, decreased negative events, and decreased inhibition of emotional expression) were found to mediate the effects of the FBP on mental health problems at 11-month follow-up. Using a two-wave longitudinal design, support was found for FBP effects on three additional variables at 11-month follow-up (increased positive coping, decreased negative thoughts about stressors, and decreased unknown control beliefs) to mediate program effects to reduce mental health problems at 11-month follow-up. The discussion focuses on theoretical explanations for the mediational effects and on implications for identifying "core components" of the FBP that are responsible for its effects to reduce mental health problems of girls.

Min syster fick Alzheimer – om vård och bemötande ur ett anhörigperspektiv

Andersson, Irene (2011)

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

Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17

Cox, D. and B. Soldo (2004)

When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.

Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010

Malmberg, B. and G. Sundström (2012)

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).

År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.

I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

 

Negotiating family responsibilities

Finch, J. and J. Mason (1993)

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review

Nock, M. K., & Ferriter, C. (2005)

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

Brewer, J. & Sparkes, A. (2011)

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

Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health

Goodman, J. (2004)

BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.

Perceived burden, lived experiences and experiences of learning processes and illness management in parents of children with severe or moderate haemophilia

Myrin Westesson, Linda (2019)

Doktorsavhandling

Haemophilia is a complex condition to manage, especially for parents of newly diagnosed children, and the illness affects the whole family. The parents are deeply involved in the child's treatment, as they frequently have to administer intravenous injections at home. The overall aim was to investigate perceived burden, lived experiences and to explore experiences of learning processes and illness management in parents of children with severe or moderate haemophilia. In studies I-III, a qualitative approach was motivated to describe experiences of parenting a child with haemophilia. Study III employed a longitudinal design to explore the learning process, while study IV employed a quantitative method with a cross-sectional survey. The results reveal that the mothers often needed to become reconciled both with the fact of the child's illness and their own carriership. However, having a child with severe or moderate haemophilia was life changing for both fathers and mothers. The parents were forced into a situation where they had to learn about and manage their child's illness in daily life. Thus, a desire to become independent of health care professionals in this respect emerged as a key incentive for learning. How this learning process developed and how long it took depended on different factors. For example, parents of children with past or present inhibitors reported higher perceived burden than parents of children without a history of inhibitors. Nevertheless, independently managing home treatment was essential for the parents to feel in control of their life-world again. One conclusion is that female carriers need more knowledge about their carriership and would benefit from counselling before starting a family. One suggestion is that acceptance of the child's illness and reconciliation with the new complex family situation could be promoted with person-centred care. Furthermore, the findings underline that health care professionals need to be aware of an increased burden on parents of young children and particularly the burden on parents of young children with inhibitors.

Personlighetsstörningar. Kliniska riktlinjer för utredning och behandling. Svensk Psykiatri nr 9.

Svenska Psykiatriska Föreningen (2006)

Kliniska riktlinjer för personlighetsstörningar som nu presenteras är
nummer 9 i en serie av riktlinjer som framtagits i Svenska Psykiatriska
Föreningens regi sedan 1996. Tidigare har riktlinjer publicerats
med titlarna Schizofreni och schizofreniliknande tillstånd, Förstämningssjukdomar,
Ångestsyndrom, Alkoholproblem, Självmordsnära
patienter, Tvångsvård, Äldrepsykiatri och Ätstörningar. Dessa riktlinjer
kan beställas från Förlagshuset Gothia (www.gothia.verbum.se,
sök "psykiatri").
Människor med personlighetsstörningar har länge betraktats som
en svår patientgrupp då interaktionen med omgivningen ofta blir problematisk
och konfliktfylld. Personlighetsstörningar är vanligt förekommande
i den vuxna befolkningen. Prevalensen i vården är hög –
inte minst bland psykiatriska patienter – och samsjuklighet med andra
psykiatriska tillstånd är vanlig. Det finns ett stort behov av kunskap
om personlighetsstörningar, vilket gör att de kliniska riktlinjer
som nu presenteras är mycket angelägna och välkomna. Arbetsgruppen
med Lisa Ekselius i spetsen har på ett mycket förtjänstfullt sätt
åskådliggjort personlighetsstörningarnas kliniska uttryck, komplexitet
och drabbade personers subjektiva lidande. Ett av huvudsyftena
med de nu presenterade riktlinjerna är att göra personlighetsstörningarna
igenkännbara för oss alla som möter patienter med dessa tillstånd
i vår kliniska vardag. Genom att tidigt kunna identifiera personlighetsstörningar
hos patienter, kan man formulera realistiska behandlingsmål
och minska risken för att de hamnar i ofruktsamma
behandlingskontakter. Detta gäller inte minst många patienter som
behandlas för ett axel-I-syndrom. Idag finns en rad diagnostiska
5
hjälpmedel som kan underlätta identifiering av personlighetsstörningar.
Trots att det fortfarande råder brist på empirisk forskning inom
området finns det belägg för att dessa störningar går att behandla
framgångsrikt. Tydlig struktur samt värnande om den terapeutiska alliansen
mellan patient och behandlare är väsentliga för all form av behandling
av patienter med personlighetsstörningar.
Personlighetsstörningsproblematiken leder många gånger till funktionella
svårigheter i livet, känsla av utanförskap och subjektivt lidande.
Inte minst gäller det patienter med borderline personlighetsstörning,
där även risken för självskadebeteende och suicid är hög. Det är
hoppfullt att behandlingsmetoder som dialektisk beteendeterapi
(DBT) har visat sig vara effektiv för dessa patienter. Andra personlighetsstörningar,
främst antisocial personlighetsstörning, åsamkar
framför allt omgivningen lidande och problem. Ofta förvärras detta
av koppling till missbruk och leder inte sällan till våld och kriminalitet.
I dagens samhällsklimat är riskbedömning av upprepat våld en viktig
men grannlaga uppgift. Inom rättspsykiatrin, där många av dessa
patienter finns, används idag bedömningsinstrument som har visat sig
kunna bidra till säkrare bedömning av återfallsrisk. För patienter
utanför den rättspsykiatriska vården är riskbedömningsinstrumentet
osäkrare och det finns för närvarande inget som kan ersätta en samlad
klinisk bedömning. Det är dock viktigt att riskbedömningar görs
på ett så strukturerat sätt som möjligt av patienter med personlighetsstörning,
särskilt vid samtidig förekomst av missbruk.

Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study

Nordström, M., Dunér, E., Olin, A., & Wijk, H. (2009)

BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.

Positive parenting as a protective resource for parentally bereaved children

Haine, R.A., Wolchik, S.A., Sandler, I.N., Millsap, R.E. & Ayers, T.S. (2006)

Positive parenting was examined as a protective resource against the adverse effects of negative life events on parentally bereaved children's mental health problems. The sample consisted of 313 recently bereaved children ages 8 to 16 and their current caregiver. Both the compensatory (direct effect independent of negative life events) and the stress-buffer (interactive effect with negative life events) protective resource models were examined and child gender was explored as a moderator of both models. Results revealed evidence for the compensatory protective resource model for both child and caregiver reports of mental health problems. No evidence of the stress-buffer model or child gender as a moderator was found. Implications for the understanding of children's responses to the death of a parent and the development and implementation of preventive interventions are discussed.

Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis

Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I. (2009)

BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.

AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.

METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.

RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.

CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.

Prevention and Intervention Strategies With Children of Alcoholics.

Emshoff JG, Price AW. (1999)

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

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

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

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

Preventive interventions in families with parental depression: Children’s psychosocial symptoms and prosocial behaviour

Solantaus, T., Paavonen, E.J., Toikka, S., & Punamäki, R.L. (2010)

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

Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007

Ewertzon, M. (2007)

Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.

Psychological characteristics of children of alcoholics

Sher, KJ. (1997)

More than 20 years ago, researchers first noted that children of alcoholics (COA's) appeared to be affected by a variety of problems over the course of their life span. Such problems include fetal alcohol syndrome, which is first manifested in infancy; emotional problems and hyperactivity in childhood; emotional problems and conduct problems in adolescence; and the development of alcoholism in adulthood. Although much has been learned over the ensuing two decades, a number of controversial research areas remain. In particular, debate stems from the fact that despite a common interest in COA's, clinically focused literature and research-focused literature have resulted in two distinct bodies of knowledge. This article reviews important research results, with emphasis on findings generated by the alcohol-research community. Attention also is given to examining the empirical validity of concepts that have been advanced by several influential clinicians from the COA field.

Psychopatology in children of holocaust survivors: a review of the research literature

Kellerman, N. P. F. (2001)

The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.

På väg mot hela vägen. En utvärdering av ”Hela vägens psykiatri” i Gävleborg

Finn, Bengt & Bromark, Kristina (2011)

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

Relatives' experiences of the Boston Psychiatric Rehabilitation approach: a qualitative study.

Jormfeldt H, Svensson B, Hansson L, Svedberg P. (2014)

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

Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?

Kjellin, Lars & Östman, Margareta (2005)

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.

Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors

Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A. (2009)

Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.

Scoping studies: towards a methodological framework

Arksey, H., & O'Malley, L. (2005)

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

Self-reported exposure to intimate partner violence among women and men in Sweden: results from a population-based survey

Nybergh, L., Taft, C., Enander, V., & Krantz, G. (2013)

Background
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.

Methods
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.

Results
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.

Conclusions
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.

Siblings of Children With Disabilities: Research Themes

Stoneman, Zolinda (2005)

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

‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care.

Andréasson Frida, Mattsson, Tina, Hanson, Elizabeth (2021)

ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Marcus F. Johansson, Kevin J. McKee, Lena Dahlberg, Christine L. Williams, Martina Summer Meranius, Elizabeth Hanson, Lennart Magnusson, Björn Ekman, Lena Marmstål Hammar (2021)

Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.

Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.

Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt (2021)

Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.

"Childlessness at the end of life: evidence from rural Wales."

Wenger, C. G. (2009)

ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.

"Man vill ju klara sig själv". Studievardagen för studenter med Asperger syndrom i högre utbildning

Simmeborn Fleischer A (2013)

Sedan början av 2000-talet har det skett en markant ökning av studier
gällande barn och ungdomar och Autism. Dock är det så att den mesta
forskningen fortfarande är inom det medicinska området. Endast ett
fåtal av studierna rör vuxna med Asperger syndrom (AS) som studerar
på högskola/universitet. Samtidigt sker en ökning av personer med AS
som söker högre utbildning såsom högskola/universitet, vilket gör
forskning gällande personer med diagnosen AS högaktuell. Antalet studenter
med kognitiva funktionshinder, dit AS räknas, som sökt pedagogiskt
stöd på högskola/universitet i Sverige, har ökat från 1 427 studenter
2010 till 1 943 studenter 2012. När man studerar på högskola/universitet
så finns det pedagogiska stöd att tillgå, och till vardagen
finns Lagen om stöd och service till vissa funktionshindrade (LSS) och
Socialtjänstlagen (SoL) som personer med AS har möjligheter att söka
stöd genom. Personer med AS kan ibland ha svårt att utnyttja stödsystem
som kräver att man själv identifierar och uttalar sina behov av stöd.
Denna avhandling fokuserar på personer med AS i högre utbildning och
stöd.
I doktorsavhandlingen ingår två studier: Studie I som är en fallstudie
och Studie II, som är en enkätstudie. Bindningspunkten för studierna är
studenter med AS som fått pedagogiskt stöd i sin utbildning vid högskola/universitet.

‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: The siblings' perspectives.

Moyson T, Roeyers H. (2012)

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

’Young Carers’ and Disabled Parents: time for a change of direction

Newman, T. (2002)

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.

”Hon är inte adhd, hon är min syster!” En kvalitativ studie om upplevelser av att växa upp med ett syskon med adhd. C-uppsats

Stephansson, Karin & Schelin, Robert (2008)

Författare: Karin Stephansson & Robert Schelin
Syfte: Att undersöka hur det kan vara att växa upp med en bror eller syster med diagnosen
adhd, hur livssituationen/syskonskapet hanterats, samt hur de har påverkats och hur det
eventuellt fortsätter att påverka dem i vuxenlivet. Syftet var även att undersöka syskonens
upplevelser och behov av socialt stöd under uppväxten.
Frågeställningar:
• Vilka upplevelser finns hos personer som vuxit upp med ett syskon med adhd?
• Hur upplever syskon att de har påverkats av att växa upp med en bror eller syster med
adhd?
• Hur har syskonskapet hanterats?
• I vilken utsträckning finns det behov av socialt stöd under uppväxten för syskon till
barn med adhd?
Metod: Studien är kvalitativ och bygger på intervjuer med åtta personer som vuxit upp med
ett eller flera syskon med diagnosen adhd. Intervjupersonerna består av både kvinnor och män
i åldrarna 17- 29 år.
Resultat: Resultatet visade att samtliga syskon upplevt att syskonrelationen och
familjesituationen innehållit mycket bråk som enligt intervjupersonerna var mer än vanligt
syskonbråk. Samtliga intervjupersoner ansåg att det fått ta ett stort ansvar under uppväxten.
Detta har upplevts som både positivt och negativt. Det har gjort dem ansvarsfulla men några
kände även att det lagts för mycket ansvar på dem och detta alldeles för tidigt i relation till
deras dåvarande ålder. Studien kunde påvisa en koppling mellan kommunikationen inom
familjen och upplevelsen av att ha vuxit upp med ett syskon med adhd. De intervjupersoner
som ansåg att kommunikationen inom familjen varit god och öppen beskrev upplevelser och
erfarenheter av syskonskapet som mer positivt än de intervjupersoner som ansåg att
kommunikationen inom familjen varit bristfällig.
Nyckelord: Attention Deficit/Hyperactivity Disorder (adhd), syskon, coping, socialt stöd,
systemteori

A Comprehensive Review and a Meta-Analysis of the Effectiveness of Internet-Based Psychotherapeutic Interventions

Barak, A., Hen, L., Boniel-Nissim, M., & Shapira. NA. (2008)

Internet-based psychotherapeutic interventions have been used for more than a decade, but no comprehensive review and no extensive meta-analysis of their effectiveness have been conducted. We have collected all of the empirical articles published up to March 2006 (n = 64) that examine the effectiveness of online therapy of different forms and performed a meta-analysis of all the studies reported in them (n = 92). These studies involved a total of 9,764 clients who were treated through various Internet-based psychological interventions for a variety of problems, whose effectiveness was assessed by different types of measures. The overall mean weighted effect size was found to be 0.53 (medium effect), which is quite similar to the average effect size of traditional, face-to-face therapy. Next, we examined interacting effects of various possible relevant moderators of the effects of online therapy, including type of therapy (self-help web-based therapy versus online communication-based etherapy), type of outcome measure, time of measurement of outcome (post-therapy or follow-up), type of problem treated, therapeutic approach, and communication modality, among others. A comparison between face-to-face and Internet intervention as reported on in 14 of the studies revealed no differences in effectiveness. The findings of this meta-analysis, and review of additional Internet therapy studies not included in the meta-analysis, provide strong support for the adoption of online psychological interventions as a legitimate therapeutic activity and suggest several insights in regard to its application. Limitations of the findings and recommendations concerning Internet-based therapy and future research are discussed.

A meta-analysis of parent training: Moderators and follow-up effects

Lundahl, B., Risser, H. J., & Lovejoy, C. M. (2006)

A meta-analysis of 63 peer-reviewed studies evaluated the ability of parent training programs to modify disruptive child behaviors and parental behavior and perceptions. This analysis extends previous work by directly comparing behavioral and nonbehavioral programs, evaluating follow-up effects, isolating dependent variables expressly targeted by parent training, and examining moderators. Effects immediately following treatment for behavioral and nonbehavioral programs were small to moderate. For nonbehavioral programs, insufficient studies precluded examining follow-up effects. For behavioral programs, follow-up effects were small in magnitude. Parent training was least effective for economically disadvantaged families; importantly, such families benefited significantly more from individually delivered parent training compared to group delivery. Including children in their own therapy, separate from parent training, did not enhance outcomes.

A Randomized Controlled Effectiveness Trial of Parent Management Training With Varying Degrees of Therapist Support

Kling, Å., Forster, M., Sundell, K., & Melin, L. (2010)

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

A register study of life events in young adults born to mothers with mild intellectual disability

Lindblad I, Billstedt E, Gillberg C, Fernell E (2014)

BACKGROUND: Young adults, born to population-representative mothers with
intellectual disability (ID), were targeted for psychosocial/life event
follow-up.
METHODS: The whole group originally comprised 42 individuals but 3 had died and 1
had moved abroad. The remaining 38 were approached and 10 consented to
participate in an interview study. However, of the remaining 28, it was not
possible to establish contact with 21 who were instead searched for in various
official registers.
RESULTS: Most (n = 18) individuals in the study group had been in contact with
different authorities and clinics. Of the 21 individuals, 10 had contact with
social services since childhood and 4 of these had been taken into care (foster
family) and 6 had had contact families during childhood. One individual had been
taken into a treatment centre and one grew up mainly with the father. Altogether
12 (57%) of 21 individuals did not grow up full-time with their biological
mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions,
including five with ID and seven with attention-deficit hyperactivity disorder
(ADHD). Four individuals were registered within the Prison and Probation Service
due to various types of crimes.
CONCLUSION: Individuals born to mothers with ID in our study group were at high
risk of adverse experiences and negative outcomes, such as increased childhood
mortality, a relatively large proportion of children taken into care, high rates
of ID and ADHD in the children and of criminality in young adulthood. Taken
together with the results obtained in an in-depth interview study of those in the
originally targeted sample with whom it was possible to obtain contact, the
present findings suggest that it will be important to provide early support and
longitudinal developmental follow-up in groups of children growing up with a
mother with ID. Children in this situation appear to be at a number of risks,
probably related both to hereditary factors and to social disadvantage.

A systematic review of action imitation in autism spectrum disorder.

Williams J, Whiten A, Singh T. (2004)

Imitative deficits have been associated with autistic spectrum disorder (ASD) for many years, most recently through more robust methodologies. A fresh, systematic review of the significance, characteristics, and underlying mechanism of the association is therefore warranted. From 121 candidates, we focused on 21 well-controlled studies involving 281 cases of ASD. Overall, children with ASD performed worse on imitative tasks (Combined Logit p value < .00005). The emerging picture is of delayed development in imitation, implicating a deficit in mapping neural codings for actions between sensory and motor modalities, rather than in motivation or executive function. We hypothesise that ASD is characterised by abnormal development of these mappings, such that they are biased towards object-oriented tasks at the expense of those required for action imitation per se.

A treatment outcome study of bereavement groups for children

Tonkins, S.A. & Lambert, M.J. (1996)

ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.

A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].

A Unified Theory of Development: A Dialectic Integration of Nature and Nurture

Sameroff, A. (2010)

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

Activitybased intervention for multiple-disabled visually impaired people

Tellevik JM, Elmerskog B. (2009)

The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.

ADHD ur ett socioekonomiskt perspektiv

Nilsson I, Nilsson-Lundmark E. (2013)

Vi har i ett antal studier analyserat ADHD-problematiken ur ett socioekonomiskt perspektiv med hjälp av kalkylmodeller vi utvecklat under cirka 30 års tid. Tidiga insatser kring barn med ADHD ger – vid sidan av de mänskliga vinsterna - utomordentligt höga samhällsvinster. Flera miljoner kronor per barn för perioden upp till 20 års ålder. Än tydligare blir det då man följer vuxna, i det här fallet med kriminell belastning. Samhällskostnaderna för uteblivna insatser för en grupp om 30 intagna kan under en 20 års period uppgå till mer än 800 Mkr. En insats mot denna målgrupp, av det slag som gjorts vid projektet vi följt på
Norrtäljeanstalten ger på 20 års sikt sannolikt en finansiell avkastning på mer än 250 Mkr eller 80 gånger insatsen. Tidiga, samordnade och evidensbaserade insatser för denna målgrupp är en social investering med utomordentligt hög lönsamhet. Ur ett strukturellt perspektiv kan frånvaron av kloka insatser enklast beskrivas som bristen på helhetssyn och långsiktighet då beslut tas kring denna målgrupp. Priset för detta är högt, mänskligt och ekonomiskt.

Adolescents’ perceptions of social support after the death of a parent

Gray, R. (1989)

Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.

Anhörig till person med psykisk sjukdom eller funktionsnedsättning – en resurs i behov av stöd. Fokus på Anhöriga nr 17

Ewertzon, M. (2010)

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

Anhöriga som ger omsorg till närstående– fördjupad studie av omfattning och konsekvenser

Socialstyrelsen (2014)

Sammanfattning

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

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

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

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

Anhörigas erfarenheter av att leva nära en person med psykossjukdom

Gyllin, Sanela & Rosenberg, Catarina (2010)

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

Anknytning till arbetsmarknaden och ungas etablering

Bäckman O (2010)

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

Applying the ICF‐CY to identify children's everyday life situations: A step towards participation‐focused code sets

Adolfsson, M. (2013)

Adolfsson M. Applying the ICF-CY to identify children's everyday life situations: a step towards participation-focused code sets

With the long-term goal to create an interdisciplinary screening tool with code sets focusing on children's participation in everyday life situations (ELS), the purpose of the present study was to identify ELS for children 0–17 years. The views of professionals and parents in Sweden, South Africa and the USA were integrated based on ICF-CY1 linkages. The chapters Self-care and Major life areas seemed most obvious to include in ELS. At the 2nd ICF-CY level, 11 categories emerged as ELS, with Hygiene and Recreation as the most obvious. Two sets of ELS were identified for infants/preschoolers and school-aged children/adolescents. Professionals and parents agreed on ELS for the older age group. Findings suggest that ELS differ in context specificity depending on maturity and growing autonomy. The study has implications for the future screening tool that is intended to support children with disabilities in describing what matters most to them in intervention planning.

Approaches to needs assessment in children’s services

Ward, Harriet (2002)

Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.

Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care

Arbetsglädje bland anställda anhörigvårdare

Furåker B, Mossberg A-B (1997)

Anhörigvård innebär att det i princip är samma person som hela tiden är huvudansvarig för vårdinsatsen. I en tidigare artikel har visats att många kommunalt anställda anhörigvårdare upplever bundenheten i sitt arbete. Här fokuseras i stället arbetets ljusare sidor - förekomsten av glädje, stimulans och tillfredställelse. Analysen ger vid handen att frånvaron av arbetsglädje bl.a. ssammanhänger med upplevelsen av bundenhet. Samtidigt framkommer att en annan faktor har en ännu mer avgörande betydelse: uppskattning från omgivningen. Det visar sig också att känslan av att vara uppskattad är relaterad till hur anhörigvårdarens ekonomiska situation förändrats sedan arbetet blev betalt.

Att ge syskon utrymme

Granat, Tina, Nordgren, Ingrid & Rein, George (2006)

Rapport från barn och ungdomshabiliteringen

Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp – ett utvecklingsprojekt under åren 2000-2009

Ekenberg Lilly (2010)

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

Barns upplevelser när föräldrars missbruk upphört “Alltså det är svårt att må bra igen”

Alexanderson Karin, Näsman Elisabet (2017)

Artikeln bygger på intervjuer med 15 barn till föräldrar med missbruksproblem.
Syfte: Att bidra till fördjupad förståelse av barns situation, när en förälders missbruk upphört.
Metod: En explorativ intervjustudie med barndomssociologi och symbolisk interaktionism som teoriram.
Resultat: Att missbruket upphört ger barn utrymme att känna efter hur de mår, att reflektera över missbrukets påverkan på deras hälsa och personlighet och att försöka förändra sig och sitt liv. Deras behov av bearbetning kan kvarstå lång tid. Det kan ta tid och vara svårt att bygga upp relationen till föräldern. Barn kan känna omsorgsansvar men också misstro och oro för återfall. Tonåringen kan dock se en möjlighet att gå vidare med sitt eget liv. Om missbruket bara upphör för en av två föräldrar med missbruksproblem är barn fortfarande berörda av missbruk.
Konklusion: Barns behov av bearbetning i relation till föräldrarna kan både ta och kvarstå lång tid oavsett om barnet bor med föräldern eller inte. Barnen kan både behöva hjälp för egen del och i relation till föräldern. Det ska vara påbjudet att professionella arbetar med ett familjeperspektiv, oavsett organisatoriska uppdelningar och oavsett om förälder och barn bor ihop eller ej. Det kräver strukturer, rutiner och resurser för samverkan över organisatoriska gränser.

Behavioral family counseling for substance abuse: a treatment development pilot study

O'Farrell TJ, Murphy M, Alter J, Fals-Stewart W. (2010)

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

Being the next of kin of an adult person with muscular dystrophy

Boström, K., Ahlström, G., & Sunvisson, H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Bereaved adolescents’ evaluations of the helpfulness of support-intended statements: associations with person centeredness and demographic, personality, and contextual factors

Servaty-Seib, H.L., & Burleson, B.R. (2007)

Currently, there is a lack of reliable methods for assessing how bereaved adolescents perceive the informal support they receive. This study provides methodological refinements in, and a theoretical grounding for, a recently developed measure designed to distinguish support efforts that bereaved adolescents find helpful versus harmful. Participants (114 bereaved adolescents) completed the Support Intended Statement Survey (SISS), which assessed the perceived helpfulness of 14 strategies intended to comfort the bereaved. These 14 strategies were coded for the degree of person centeredness they manifested. Level of strategy person centeredness was strongly correlated with perceived strategy helpfulness. Reported helpfulness of the strategies varied substantially as a function of participants' general levels of perceived support availability, but varied less as a function of demographic and contextual factors.

Childhood traumatic grief: concepts and controversies

Cohen, J.A., Mannarino, A.P., Greenberg, T., Padlo, S. & Shipley, C. (2002)

Discussing childhood traumatic grief, a condition likened to uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder (PTSD), this article addresses the core features of this condition and its potential treatments. After asserting that childhood traumatic grief is not consistently differentiated from adult complicated grief, normal childhood bereavement, or PTSD, the authors distinguish uncomplicated bereavement as deep mental anguish or sorrow over a loss. After defining adult complicated grief as normal bereavement complicated by separation over the loss of a relationship, this article discusses childhood PTSD as a mental condition following an experienced or witnessed traumatic event, in order to differentiate these conditions from childhood traumatic grief. Addressing childhood traumatic grief itself, the authors distinguish this condition from those aforementioned by defining it as the encroachment of traumatic symptoms on a child's ability to grieve. Citing differences among childhood traumatic grief and uncomplicated bereavement, adult complicated grief, and PTSD, the authors argue that in childhood traumatic grief a child is so traumatized that he or she is unable to complete the tasks of uncomplicated bereavement and is plagued with horrors and fears associated with the idea of death. The authors suggest that mediating, assessing, and treating childhood traumatic grief is best accomplished by early assessment, careful appraisal of a child's family circumstances, and prompt intervention. The authors conclude that clinicians need to be better trained at recognizing the distinctions between childhood traumatic grief and other forms of grief in order to best serve their child clients

Children affected by parental illness or parental substance abuse: young carers, well-being and quality of life

Kallander, Ellen Katrine (2019)

Summary
In Norway and the Nordic countries more generally, the awareness of children affected by parental
illness or substance abuse has increased during the last 10 years. There has also been a general shift
from inpatient to outpatient care in public hospitals, and from public hospitals to primary health
care. This shift has increased the number of parents who live at home with more severe illness while
they are in active treatment. They need more informal and formal external care in their own homes.
Until recently, care for the ill, disabled, or elderly within the family has been invisible and barely
mentioned in public documents, statistics, or research reports. This applies even more for children's
caregiving activities. In 2010, the Research Council of Norway called for research of this question,
pointing out that 'little research has been conducted in this field, where children themselves serve as
informants, and more insight is needed about which interventions and measures that provide
effective help'. The main aims of the papers discussed in this thesis have been to explore:
• The extent and nature of the children's caring activities
• The positive and negative outcomes of the children's caring activities
• Factors associated with the children's quality of life (QoL)

Children and Their Life Experiences

Faureholm, J. (2010)

Keywords:
children and their life experiences;
experiences of children of parents with intellectual disabilities;
adult children, raised by parents with intellectual disabilities;
children of mothers with intellectual disabilities;
children being affected - with mothers diagnosed as having intellectual disability;
everyday life within the family, school and friends;
support from public authorities and life - as adolescents and young adults;
alternating between being children and adults;
children of parents with intellectual disabilities - risk of facing difficulties
Summary
This chapter contains sections titled:

Children and young people’s experiences of UK childhood bereavement services

Rolls, L., & Payne, S. (2007)

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

Children as ‘Being and Becomings’: Children, Childhood and Temporality

Uprichard, E. (2008)

Notions of 'being' and 'becoming' are intrinsic to childhood research. Whilst the 'being' child is seen as a social actor actively constructing 'childhood', the 'becoming' child is seen as an 'adult in the making', lacking competencies of the 'adult' that he or she will 'become'. However, I argue that both approaches are in themselves problematic. Instead, theorising children as 'being and becomings' not only addresses the temporality of childhood that children themselves voice, but presents a conceptually realistic construction suitable to both childhood researchers and practitioners.

Children caring for parents with mental illness: perspectives of young carers, parents and professionals

Aldridge, Jo & Becker, Saul (2003)

Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:·[vbTab]is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;·[vbTab]provides the perspectives of children, parents and key professionals in contact with these families;·[vbTab]reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; ·[vbTab]provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;·[vbTab]makes concrete recommendations and suggestions for improving policy and professional practice;·[vbTab]contributes to the growing evidence base on parental mental illness and outcomes for children and families.

Children exposed to domestic violence and child abuse: Terminology and taxonomy

Holden, G. W. (2003)

Three definitional issues regarding children exposed to domestic violence are examined. First, the multiple ways in which a child can be exposed to violence is discussed. A taxonomy of 10 types of exposure is proposed. Nine key characteristics of domestic violence, as they relate to children and children's exposure, are then outlined. The third issue addressed concerns why children who are exposed to domestic violence can be considered victims of child maltreatment. These children, by nature of their experience in the home, are psychologically maltreated and are also at high risk for physical abuse and some risk for sexual abuse. Empirical questions concerning these definitions and taxonomies and their interrelations are discussed.

Children in precarious environments and life situations

Brodin, J. (2011)

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

Children in residential and foster care – a Swedish example

Andersson, Gunvor (1999)

The article reports on a longitudinal study of children placed in a children's home in Malmö, Sweden, at the beginning of the 1980s. The 26 children, placed when younger than four years of age and staying more than four weeks in the children's home, were followed up three and nine months after leaving the children's home as well as five, ten and fifteen years later. Interviewing the parties concerned was the predominant research method. Twenty of the 26 children in the research group also had later experiences of out-of-home care, including foster care, in addition to the stay at the children's home. This article is about them, 15–20 years old when interviewed in the latest follow-up study. Three aspects of "outcome" are focused on: the degree of stability in the children's living conditions; relationships to parents and foster parents; well-being and emotional and behavior problems. Bearing in mind that the concept of well-being is relative, a cautious conclusion is that a third of the children in the study experienced well-being, a third felt "o.k.," and a third had serious problems, including criminal activities and drugs. The somewhat unclear connection between well-being, stability in living conditions, and sense of family belonging is discussed.

Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants.

Israelsson-Skogsberg, Åsa (2019)

Dissertation

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants. Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents. Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one's parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia. Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs. Ort, förlag, år, upplaga, sidor Borås: Högskolan i Borås, 2019.SerieSkrifter från Högskolan i Borås, ISSN 0280-381X ; 101 Nyckelord [en] Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life

Children of affectively ill parents: a review of the past 10 years

Beardslee W, Versage E, Gladstone T. (1998)

OBJECTIVE: To review the literature investigating the effects of parental affective illness on children over the past decade. METHOD: A computerized search of articles published over the past 10 years was completed. Articles were reviewed and relevant studies are presented. RESULTS: Over the course of the past 10 years a number of longitudinal studies have confirmed that children of affectively ill parents are at a greater risk for psychiatric disorders than children from homes with non-ill parents. Life table estimates indicate that by the age of 20 a child with an affectively ill parent has a 40% chance of experiencing an episode of major depression. Children from homes with affectively ill parents are more likely to exhibit general difficulties in functioning, increased guilt, and interpersonal difficulties as well as problems with attachment. Marital difficulties, parenting problems, and chronicity and severity of parental affective illness have been associated with the increased rates of disorder observed in these children. CONCLUSION: The presence of depression in parents should alert clinicians to the fact that their children also may be depressed and therefore in need of services

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of Depressed Mothers 1 Year After the Initiation of Maternal Treatment: Findings From the STAR*D-Child Study

Pilowsky D, Wickramaratne P, Talati A, Tang M, Hughes C, Garber J, et al. (2008)

Objective: Maternal depression is a consistent and well-replicated risk factor for child psychopathology. The authors examined the changes in psychiatric symptoms and global functioning in children of depressed women 1 year following the initiation of treatment for maternal major depressive disorder. Method: Participants were 1) 151 women with maternal major depression who were enrolled in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and 2) their eligible offspring who, along with the mother, participated in the child STAR*D (STAR*D-Child) study (mother-child pairs: N=151). The STAR*D study was a multisite study designed to determine the comparative effectiveness and acceptability of various treatment options for adult outpatients with nonpsychotic major depressive disorder. The STAR*D-Child study examined children of depressed women at baseline and involved periodic follow-ups for 1 year after the initiation of treatment for maternal major depressive disorder to ascertain the following data: 1) whether changes in children's psychiatric symptoms were associated with changes in the severity of maternal depression and 2) whether outcomes differed among the offspring of women who did and did not remit (mother-child pairs with follow-up data: N=123). Children's psychiatric symptoms in the STAR*D-Child study were assessed using the Schedule for Affective Disorders and Schizophrenia for School-Age Children—Present and Lifetime Version (K-SADS-PL), and maternal depression severity in the STAR*D study was assessed by an independent clinician, using the 17-item Hamilton Depression Rating Scale (HAM-D). Results: During the year following the initiation of treatment, maternal depression severity and children's psychiatric symptoms continued to decrease over time. Decreases in the number of children's psychiatric symptoms were significantly associated with decreases in maternal depression severity. When children's outcomes were examined separately, a statistically significant decrease in symptoms was evident in the offspring of women who remitted early (i.e., within the first 3 months after the initiation of treatment for maternal depression) or late (i.e., over the 1-year follow-up interval) but not in the offspring of nonremitting women. Conclusions: Continued efforts to treat maternal depression until remission is achieved are associated with decreased psychiatric symptoms and improved functioning in the offspring.

Children of Mothers with Intellectual Disability: Stigma, Mother-Child Relationship and Self-esteem

Perkins, TS., Holburn, S., Deaux, K., Flory, MJ., & Vietze. PM. (2002)

Background  We investigated mother–child relationships and self-esteem of typical children of mothers with intellectual disability.

Methods  Eighteen girls and 18 boys from various ethnic groups were administered questionnaires to assess: (a) attachment style; (b) caregiver style; (c) perception of maternal stigma; and (d) self-esteem. The children were also asked to list the identities or roles that they play in life.

Results  Results suggested that: (a) the relationship between the child's perception of stigma and attachment to the mother is mediated by the warmth of the mother's caregiving style; and (b) if the child has an avoidant or anxious/ambivalent attachment to the mother, self-esteem tends to be lower. Furthermore, multiple identities contribute to positive self-esteem among these children.

Conclusions  Results are discussed in relation to the model presented and the consistency of the findings with attachment theory.

Children of Mothers with Serious Substance Abuse Problems: An Accumulation of Risks.

Conners NA, Bradley RH, Mansell LW, Liu JY, Roberts TJ, Burgdorf K, et al. (2003)

This study examines the life circumstances and experiences of 4084 children affected by maternal addiction to alcohol or other drugs. The paper will address the characteristics of their caregivers, the multiple risk factors faced by these children, their health and development, and their school performance. Data were collected from mothers at intake into 50 publicly funded residential substance abuse treatment programs for pregnant and parenting women. Findings from this study suggest that children whose mothers abuse alcohol or other drugs confront a high level of risk and are at increased vulnerability for physical, academic, and social-emotional problems. Children affected by maternal addiction are in need of long-term supportive services.

Children of parents with intellectual disability: Facing poor outcomes or faring okay?

Collings, S., & Llewellyn, G. (2012)

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

Children with medical complexity: an emerging population for clinical and research initiatives

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011)

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

Children´s perceptions of parental multiple sclerosis

Cross, T., & Rintell, D. (1999)

Semi-structured interviews were conducted with 7-to-14-year-old children of parents with multiple sclerosis (MS; N = 21) to examine children's perceptions of MS, and a content analysis was conducted. Children observed visible and 'invisible' symptoms and affective distress. Few children had information about the physiological process of MS. The most frequent categories of causal beliefs were fate or chance, contagion and congenital/hereditary factors. Many children mentioned their own or other people's behaviour as influences on the course of MS. No children believed that parents' MS would get worse. Children need developmentally appropriate information, reassurance about their effect on parents and their own risk of contracting MS, and discussion of the stress on the family. The study suggests the value of psycho-educational intervention for many families with MS.

Children’s adjustment to parental death

Tremblay, G.C. & Israel, A.C. (1998)

Keywords:
parental death;childhood grieving;bereavement intervention
This article reviews the evidence regarding the effects of parental death on children's acute and long-term psychological adjustment, as well as the clinical literature describing interventions for bereaved families. The risk of adjustment difficulties for bereaved children has shown no consistent relation to complications of grieving, but is instead largely accounted for by an increased probability of inadequate care following the loss of a parent. The literature describing interventions for bereaved families offers little formal evaluation, and reflects our incomplete understanding of children's grief responses, and thus of appropriate treatment goals. Further research should focus on more molecular analysis of grief processes, including grief-related interactions between children and parents, and should take into account developmental variation in children's needs and experiences. The use of multiple informants of child and parent behavior is strongly recommended, and the unique contributions of longitudinal research in understanding children's adjustment to loss are highlighted.

Children’s experiences of information, advice and support from healthcare professionals when their parent has a cancer disease - experiences from an oncological outpatient department

Marie Golsäter,Susanne Knutsson, Karin Enskär (2021)

Purpose: This study was carried out in order to evaluate children's experiences after taking part in the pilot clinical intervention "See Me" aimed at supporting children as relatives.
Method: A qualitative explorative design with interviews was chosen, with analyses using an inductive approach. Interviews were conducted with 19 children (9 aged 7–12 years and 10 aged 13–18 years). The younger children were asked to draw a picture of a person in hospital, using the Child Drawing: hospital (CD:H) instrument to measure the child's level of anxiety. The older children completed the Caring Professional Scale (CPS) as a measure of the caring approach in their encounter with the nurse.
Results: The interviews with the children show that: they felt expected and welcomed at the hospital; they needed knowledge about their parent's situation; they needed information and participation based on their individual situation; and they needed the nurse to offer them information and support. The results from the pictures showed that one child had above-average levels of anxiety. The older children reported that the nurses were Competent Practitioners, but to a lesser degree that they were Compassionate Healers. Conclusions: The results of this pilot study indicate that the structure of "See Me" could be used as a starting point to ensure that children as relatives receive information, advice, and support. Further the results indicate that both CD:H and CPS could be used to evaluated children's experiences of support when a parent has a long-term illness.

Children’s experiences of parental mental illness: a literature review

Gladstone, B. M., Boydell, K. M., Seeman, M. V., & Mckeever, Patricia, D. (2011)

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

Children’s voices – Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation

Nilsson S, Björkman B, Almqvist A-L, Almqvist L, Björk-Willén P, Donohue D, et al. (2013)

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

Children's adjustment to a parent's stroke: determinants of health status and psychological problems, and the role of support from the rehabilitation team

Visser-Meily A, Post M, Meijer AM, Maas C, Ketelaar M, Lindeman E. (2005)

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

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Children's influence on wellbeing and acculturative stress in refugee families

Bergnehr D (2019)

Abstract
PURPOSE:
This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Children's loneliness: A comparison of rejected and neglected peer status.

Asher SR, Wheeler VA. (1985)

Recent research indicates that a considerable number of children report extreme feelings of loneliness and that unpopular children are more lonely than popular children. In the present study, we assessed feelings of loneliness of two subgroups of unpopular children, those who were sociometrically rejected versus those who were sociometrically neglected. Data on popular, average, and controversial children were also collected. Results from 200 third- through sixth-grade children indicated that rejected children were the most lonely group and that this group differed significantly from other status groups. Neglected children did not differ from higher status peers. Overall, the results provide added evidence of the utility of the distinction between neglected versus rejected status and provide support for earlier conclusions that rejected children are more at risk than are other status groups.

Children's perceptions and experiences of care giving: A focus group study

Earley, L., Cushway, D. & Cassidy, T. (2007)

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

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

Choice and preference assessment research with people with severe to profound developmental disabilities: A review of the literature

Caltenco, H., Larsen, H. S., & Hedvall, P. O. (2005)

Since the last major empirical review on choice interventions and preference assessments among people with severe to profound developmental disabilities (Lancioni, O'Reilly, & Emerson, 1996) the body of research in this area has grown extensively. This paper reviews thirty studies carried out between 1996 and 2002 that have been sorted into four categories. These categories are (a) building choice opportunities into daily contexts; (b) assessing the effects of choice making on various parameters of behavior; (c) assessing preferences; and (d) assessing the effectiveness of various preference assessment formats. The main findings in these studies were that choice interventions led to decreases in inappropriate behavior and increases in appropriate behavior, and that various preference assessments could be used to identify reinforcing stimuli. The findings are discussed in relation to technical and practical rehabilitation questions. Potential issues for future research are also examined.

Chronic childhood disease: An introduction to psychological theory and research.

Eiser, Christine (1990)

The author draws extensively on the published research findings in child health psychology, and also on her own experience of working with pediatric medical and nursing staff. The emphasis throughout her book is on coping, and helping families to cope, with the stresses imposed by chronic childhood illness. Frequent hospital admissions, pain and its evaluation and control, adjustment and sources of support, communication, education and programs for intervention, all of these topics are discussed sensitively and with authority.

Clinical implications of The development of the person

Suess, G. J., & Sroufe, J. (2005)

The Minnesota longitudinal study of parents and children from birth to adulthood provides both a theoretical framework and a host of empirical findings that can serve to bridge the gap between research and clinical application. Key among these findings are: (a) the ongoing impact of early relationship experiences throughout the years, even with later experience and circumstances controlled; (b) the cumulative nature of experience and its continual impact with current context; (c) the important role of adult partner relationships; (d) the increasingly active role of the persons themselves in their own development; and (e) the interplay between experience, representation, and ongoing adaptation. These findings, and the theoretical structure underlying them, suggest the need for complex, comprehensive intervention that begins early, with a focus on altering the quality of parent - child relationships. At the same time, additional components, including couples therapy and efforts to alter the child's inner constructions of experience, are clearly suggested. One must attend to forces maintaining children on maladaptive developmental pathways once established, as well as understanding the factors that initiated such pathways.

Clinically significant trauma symptoms and behavioral problems in a community-based sample of children exposed to domestic violence

Spilsbury, J. C., Belliston, L., Drotar, D., Drinkard, A., Kretschmar, J., Creeden, R., . . . Friedman, S. (2007)

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

Co-constructed talk in the conversations of people with dysarthria and aphasia

Bloch, S., & Beeke, S. (2008)

This paper uses the methodology of conversation analysis (CA) to examine the practice of co-constructed turn and utterance production in impaired communication. An investigation of the conversations between two family dyads, featuring one person with dysarthric speech and one with aphasic language, reveals one way in which single turns and utterances are produced through the collaborative activities of two people in interaction. Such a practice is shown to operate without problems for the participants or the need for explicit acceptance by the speakers. It is proposed that co-construction in disordered speech and language is one way in which communicative competence is accomplished. By drawing attention to similarities in the consequences of dysarthria and aphasia in everyday interaction, it is suggested that researchers and clinicians might profitably look across disorder-specific boundaries.

Co-construction as a facilitative factor in supporting the personal narratives of children who use augmentative and alternative communication

Solomon-Rice, P., & Soto, G. (2010)

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

Co-construction as a facilitative factor in supporting the personal narratives of children who use augmentative and alternative communication

Solomon-Rice, P., & Soto, G. (2010)

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

Code sets for everyday life situations of children aged 0-6: Sleeping, mealtimes, and play.A study based on the International Classification of Functioning, Disability and Health for Children and Youth

Adolfsson M, Björck-Åkesson E, Lim C-I. (2013)

Introduction: The complexity of the Child and Youth version of the International Classification of Functioning, Disability and Health, the ICF-CY, is a challenge for occupational therapists and other professionals in clinical work. Code sets including only essential categories help to make it more user-friendly. Thus far, code sets have been developed to reflect functioning for children in different developmental periods. However, there are no code sets that support screening of participation in everyday life situations and can be used across diagnoses. This exploratory study is the first attempt to develop code sets for preschoolers' (age 0–6 years) everyday life situations.
Method: Using sequential Delphi processes with expert panels consisting of 35 professionals in five interdisciplinary early intervention teams and six parents of children, the study identified content in three code sets: Sleeping, Mealtimes and Play.
Results: A limited number of relevant categories were identified for three code sets: Sleeping (12), Mealtimes (21) and Play (30). Findings suggested a professional focus on Environmental factors compared with a parental focus on Body functions.
Conclusion: It is important to consider the opinions of all involved when developing code sets to provide a common framework for screening of children's everyday functioning.

Cognitive behavior therapy-based psychoeducational groups for adults with ADHD and their significant others (PEGASUS): an open clinical feasibility trial

Hirvikoski, T., Waaler, E., Lindström, T., Bölte, S., & Jokinen, J. (2015)

The aim of this pilot study was to investigate the feasibility and effectiveness of a new psychoeducative intervention program (PEGASUS) for adults with ADHD and their significant others in a psychiatric outpatient context. At three outpatient psychiatric clinics, adults with ADHD and their significant others took part in PEGASUS, a psychoeducational program based on theories from cognitive behavioral therapy, neuropsychology, and cross-disciplinary evidence regarding ADHD. In total, 108 adults were allocated to treatment (51 with ADHD and their 57 significant others). Feasibility was evaluated regarding suitability of the intervention at a psychiatric outpatient clinic and treatment completion. Preliminary efficacy was evaluated per protocol from baseline to post-intervention (n = 41 adults with ADHD and 40 significant others). In a feasibility analysis, the intervention was judged to be a suitable treatment option for 94.5 % of all individuals with a primary diagnosis of ADHD at an outpatient psychiatric clinic. In total, 43 out of 51 allocated individuals with ADHD (84.3 %) completed the intervention. The corresponding figures for their significant others were 42 out of 57 (73.7 %). Knowledge about ADHD increased, and both the quality of relationships and psychological well-being improved from baseline to post-intervention in all participants. The significant others reported a reduction in the subjective burden of care, such as worry and guilt. The objective burden of care (such as financial problems) did not change. The findings support the potential value of psychoeducation for adults with ADHD and their significant others. An ongoing randomized controlled trial will generate further evidence concerning the PEGASUS program.

Cognitive behavioral therapy vs relaxation with educational support for medication-treated adults with ADHD and persistent symptoms: a randomized controlled trial

Safren, S. A., Sprich, S., Mimiaga, M. J., Surman, C., Knouse, L., Groves, M., & Otto, M. W. (2010)

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

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

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

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

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

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

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

Cognitive behavioral therapy vs relaxation with educational support for medication-treated adults with ADHD and persistent symptoms: a randomized controlled trial

Safren, S. A., Sprich, S., Mimiaga, M. J., Surman, C., Knouse, L., Groves, M., & Otto, M. W. (2010)

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

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

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

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

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

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

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

Cognitive impairment after stroke - impact on activities of daily living and costs of care for elderly people. The Goteborg 70+ Stroke Study.

Claesson L, Linden T, Skoog I, Blomstrand C. (2005)

BACKGROUND AND PURPOSE:
The economic burden of stroke is substantial and is likely to increase with an increasing number of elderly individuals in the population. There is thus a need for information on the use of health care resources and costs among these elderly stroke patients. We examined the impact of the cognitive impairments on the ability to perform activities of daily living (ADL) and utilization and costs of health care in a cohort of elderly stroke patients.
METHODS:
One hundred and forty-nine patients aged >/=70 years with acute stroke were included. The patients were assessed regarding their ability to carry out ADL and health resource utilization and cost during the first year after stroke. Cognitive impairments were assessed 18 months after the index stroke.
RESULTS:
Stroke severity in acute stroke and cognitive impairment at 18 months after stroke onset was associated with impairment in ADL and increased costs for utilisation of care during the first year. Patients with cognitive impairment were more dependent on personal assistance in ADL. Costs per patient during the study were three times higher for patients with cognitive impairment. Hospital care, institutional living and different kinds of support from society accounted for the highest costs.
CONCLUSIONS:
Costs of care utilisation during the first year after stroke were associated with cognitive impairments, stroke severity and dependence in ADL. The results should be interpreted cautiously as the assessment of cognitive function was made 18 months after stroke onset and costs were estimated for the first year after stroke.

Cognitive, Behavioral, and emotional problems among school-age children of alcoholic parents

Bennett, LA., Wohlin, SJ., Reiss, D. (1988)

Sixty-four children from 37 families with an alcoholic parent were compared with 80 children from 45 families that did not have an alcoholic parent on measures of intelligence, cognitive achievement, psychological and physical disorders, impulsivity-hyperactivity, social competence, learning problems, behavior problems, and self-esteem. On nine of 17 tests, the children of alcoholic parents scored less well than did the children of nonalcoholic parents, although both were within normal ranges. Factor analysis yielded significant differences between the two samples in emotional functioning and cognitive abilities and performance; marginally significant differences were found with respect to behavior problems.

Collaboration between relatives of frail elderly patients and nurses in acute hospital wards : Dimensions, prerequisites and outcome (Bulletin from the unit of caring sciences, department of health sciences, faculty of medicine, 28).

Lindhardt, T. (2007)

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

Colocating health care services: a way to improve care coordination of children’s health care

Ginsburg, S. (2008)

Pediatric practices are faced with a growing demand that they address the
healthy development of their patients. As pediatric practices strengthen their role as medical
homes for their patients, they need either to provide expanded services or enhance their
capacity to coordinate that care. One option for enhancing the existing capacity of pediatric
practices is colocation with other providers and services in the same setting. This issue
brief examines what is currently known about the use of colocation and its benefits. The
literature and interviews used as information resources for the brief suggest that colocation
of services is not a single strategy but rather a complex set of relationships, organizational
structures, and other features meant to help practices deliver effective care. However, more
thorough examination of current colocation approaches is needed before advice can be
provided to practices considering this option.

Combined individual cognitive behavior therapy and parent training for childhood depression: 2- to 3-year follow-up

Eckshtain, D. and S. T. Gaynor (2013)

Fourteen children with significant depressive symptoms from an open clinical trial of Primary and Secondary Control Enhancement Training augmented with Caregiver–Child Relationship Enhancement Training, participated in a 2- to 3-year follow-up assessment. The results suggested that the significant decreases in depressive symptoms observed at posttreatment were maintained at 2- to 3-year follow-up. Mothers' reports of significant improvement of child psychosocial functioning were also maintained, providing social validation of the effects. Pretreatment child-rated mother-child relations predicted depressive symptoms at 2- to 3-year follow-up. These long-term data support the use of the combined intervention and suggest the need for further research on caregiver involvement in treatment. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Combining paid work and family care

Kroger T., Yeandle, S. (Eds) (2013)

As populations around the world age, increasing efforts are required from families and governments to secure care and support for older and disabled people. Furthermore, both women and men are expected to work later into life. Taken together, these two facts have made the relationship between work and care a burning issue for social and employment policy as well as for those working toward economic sustainability. Emphasizing the lessons that can be learned from individual experiences, this book widens current debates on these topics, bringing the experiences of individuals who support older, disabled, or chronically ill partners, relatives, or children to the discussion table.

Combining work and care: carers decision-making in the context of competing policy pressures

Arksey H, Glendinning C. (2008)

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers' decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers' decisions and experiences about work and care. Key factors that impact on carers' decisions are: current and anticipated financial need; the constraints arising from receipt of carers' and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers' own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.

Commentary on in-home monitoring support for dementia caregivers: Feasibility study

Aud, M. A. (2013)

Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.

Commentary on in-home monitoring support for dementia caregivers: Feasibility study

Aud, M. A. (2013)

Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.

Common Questions about AAC Services in Early Intervention

Cress, C. J., & Marvin, C. A. (2003)

Children and adults with developmental delays have benefited from the use of augmentative and alternative
communication (AAC) systems to develop language skills necessary for more generative and functional communication.
Beginning communicators however, have historically been considered too young or too pre-linguistic
and therefore have not been introduced to AAC systems until behaviors, thought to be prerequisites,
have been noted. Recent research and theories about early communication development have challenged this
traditional practice and broadened the scope of what is considered to be AAC. Practitioners and parents unfamiliar
with early AAC options may not recognize possible applications of communication strategies used with
typically developing children and older persons with developmental disabilities. AAC is applicable at all ages
for learning communication roles and behaviors as well as for functional communication for persons who do
not yet demonstrate clear referential symbol use. This article addresses nine questions that are frequently asked
about early introduction of AAC systems to children under 3 years of age. Rationales and strategies are provided
that can assist early interventionists and parents in considering AAC options for children at risk for being
unintelligible or non-speaking.

Communication forms and functions of children and adults with severe mental retardation in community and institutional settings

McLean LK, Brody NC, McLean JE, Behrens GA. (1999)

The forms and functions of expressive communication produced by 84 individuals with severe mental retardation were assessed, using a structured communication sampling procedure. Symbolic communication acts were produced by 39 participants, and 27 of these symbolic communicators produced one or more multiword/multisymbol utterances. Of the remaining participants, 38 produced intentional but nonsymbolic communication acts; 7 were not observed to produce any intentional communication. For all participants who produced intentional communication, there were significantly more imperative than declarative communication acts. Significant differences in the frequencies and functions of communication acts produced by these participants were associated with differences in their communication levels (contact gesture, distal gesture, or symbolic), age (child vs. adult), and residential status (community home vs. large facility).

Communication Matrix: A clinical and research assessment tool targeting children with severe communication disorders

Rowland, C. and M. Fried-Oken (2010)

The Communication Matrix [20] is an assessment instrument that is designed to evaluate the expressive communication skills of children with severe and multiple disabilities. It accommodates any type of communicative behavior, including forms of augmentative and alternative communication (AAC) such as picture systems, electronic devices, sign language and 3-dimensional symbols; pre-symbolic communication such as gestures, body movements, sounds, eye gaze and facial expressions; as well as the typical forms of communication such as speech and writing. It covers seven levels of communication observed in typically developing infants during the first two years of life. The instrument, which is widely used to assess children with severe acquired and congenital disorders in community and school settings, is appropriate for both inpatient and outpatient pediatric rehabilitation. Data from an associated database demonstrating the value of this tool for clinical service and research are presented. © 2010 - IOS Press and the authors. All rights reserved.

Communication, disability, and the ICF-CY

Simeonsson, R. J., Björck-Åkessön, E., & Lollar, D. J. (2012)

The child's interactions with persons in the proximal environment constitute the context for development of communication. Within early close relationships, the child acquires communication skills; developmental outcomes are defined by the continuous dynamic interactions of the child, the experiences provided by the family and close environment, and the use of different means of augmentative and alternative communication (AAC). Communication problems manifest in a variety of ways and at different levels of severity. The nature of problems differs as a function of the child's age and diagnosed condition, the communication skills of interaction partners, and the availability of communication aids. The focus for assessment and intervention may be the child, the family, the close environment and/or the interactions between them. Clarifying these varied functions and environmental factors is crucial for appropriate assessment and provision of augmentative and alternative communication (AAC) interventions. This paper reviews issues in assessment and intervention for children in need of AAC and presents the World Health Organizations' (WHO) International Classification of Functioning, Disability and Health version for Children and Youth (ICF-CY) as a tool to enhance assessment and intervention in the AAC field.

Communicative spontaneity of children with high support needs who use augmentative and alternative communication systems I: Classroom spontaneity, mode, and function

Carter, M. (2003)

In the present study, the communicative spontaneity of 23 children with high support needs who used Augmentative and Alternative Communication (AAC) in a classroom setting was evaluated. In contrast to previous research, spontaneity was evaluated on a continuum rather than being treated as a binary variable. Spontaneity was found to be highly variable, but some students clearly lacked the range of spontaneity that would be associated with fully functional communication. Aided AAC systems were notably less spontaneous than signing or nonsymbolic communication. There was also evidence of systematic variation in spontaneity across pragmatic function, with instrumental functions being more spontaneous than commenting. The results of the present study highlight the need to consider spontaneity when assessing individuals who use AAC systems.

Community treatment of posttraumatic stress disorder for children exposed to intimate partner violence

Cohen, J. A., Mannarino, A. P., & Iyengar, S. (2011)

Abstract
OBJECTIVE:
To evaluate community-provided trauma-focused cognitive behavior therapy (TF-CBT) compared with usual community treatment for children with intimate partner violence (IPV)-related posttraumatic stress disorder (PTSD) symptoms.
DESIGN:
Randomized controlled trial conducted using blinded evaluators.
SETTING:
Recruitment, screening, and treatment were conducted at a community IPV center between September 1, 2004, and June 30, 2009.
PARTICIPANTS:
Of 140 consecutively referred 7- to 14-year-old children, 124 participated.
INTERVENTIONS:
Children and mothers were randomly assigned to receive 8 sessions of TF-CBT or usual care (child-centered therapy).
MAIN OUTCOME MEASURES:
Total child PTSD symptoms assessed using child and parent structured interview (Kiddie Schedule for Affective Disorders and Schizophrenia, Present and Lifetime Version [K-SADS-PL]) and self-report (University of California at Los Angeles PTSD Reaction Index [RI]). Secondary child outcomes were scores on the K-SADS-PL (PTSD symptom clusters), Screen for Child Anxiety Related Emotional Disorders (SCARED) (anxiety), Children's Depression Inventory (depression), Kaufman Brief Intelligence Test (cognitive functioning), and Child Behavior Checklist (total behavior problems).
RESULTS:
Intent-to-treat analysis using last observation carried forward showed superior outcomes for TF-CBT on the total K-SADS-PL (mean difference, 1.63; 95% confidence interval [CI], 0.44-2.82), RI (mean difference, 5.5; 95% CI, 1.37-9.63), K-SADS-PL hyperarousal (mean difference, 0.71; 95% CI, 0.22-1.20), K-SADS-PL avoidance (0.55; 0.07-1.03), and SCARED (mean difference, 5.13; 95% CI, 1.31-8.96). Multiple imputation analyses confirmed most of these findings. The TF-CBT completers experienced significantly greater PTSD diagnostic remission (χ(2) = 4.67, P = .03) and had significantly fewer serious adverse events.
CONCLUSIONS:
Community TF-CBT effectively improves children's IPV-related PTSD and anxiety.

Community Treatment of Posttraumatic Stress Disorder for Children Exposed to Intimate Partner Violence A Randomized Controlled Trial

Cohen, J. A., Mannarino, A. P., & Iyengar, S. (2011)

Objective To evaluate community-provided trauma-focused cognitive behavior therapy (TF-CBT) compared with usual community treatment for children with intimate partner violence (IPV)–related posttraumatic stress disorder (PTSD) symptoms.

Design Randomized controlled trial conducted using blinded evaluators.

Setting Recruitment, screening, and treatment were conducted at a community IPV center between September 1, 2004, and June 30, 2009.

Participants Of 140 consecutively referred 7- to 14-year-old children, 124 participated.

Interventions Children and mothers were randomly assigned to receive 8 sessions of TF-CBT or usual care (child-centered therapy).

Main Outcome Measures Total child PTSD symptoms assessed using child and parent structured interview (Kiddie Schedule for Affective Disorders and Schizophrenia, Present and Lifetime Version [K-SADS-PL]) and self-report (University of California at Los Angeles PTSD Reaction Index [RI]). Secondary child outcomes were scores on the K-SADS-PL (PTSD symptom clusters), Screen for Child Anxiety Related Emotional Disorders (SCARED) (anxiety), Children's Depression Inventory (depression), Kaufman Brief Intelligence Test (cognitive functioning), and Child Behavior Checklist (total behavior problems).

Results Intent-to-treat analysis using last observation carried forward showed superior outcomes for TF-CBT on the total K-SADS-PL (mean difference, 1.63; 95% confidence interval [CI], 0.44-2.82), RI (mean difference, 5.5; 95% CI, 1.37-9.63), K-SADS-PL hyperarousal (mean difference, 0.71; 95% CI, 0.22-1.20), K-SADS-PL avoidance (0.55; 0.07-1.03), and SCARED (mean difference, 5.13; 95% CI, 1.31-8.96). Multiple imputation analyses confirmed most of these findings. The TF-CBT completers experienced significantly greater PTSD diagnostic remission (χ2 = 4.67, P = .03) and had significantly fewer serious adverse events.

Conclusions Community TF-CBT effectively improves children's IPV-related PTSD and anxiety.

Community Treatment of Posttraumatic Stress Disorder for Children Exposed to Intimate Partner Violence A Randomized Controlled Trial

Cohen, J. A., Mannarino, A. P., & Iyengar, S. (2011)

Objective To evaluate community-provided trauma-focused cognitive behavior therapy (TF-CBT) compared with usual community treatment for children with intimate partner violence (IPV)–related posttraumatic stress disorder (PTSD) symptoms.

Design Randomized controlled trial conducted using blinded evaluators.

Setting Recruitment, screening, and treatment were conducted at a community IPV center between September 1, 2004, and June 30, 2009.

Participants Of 140 consecutively referred 7- to 14-year-old children, 124 participated.

Interventions Children and mothers were randomly assigned to receive 8 sessions of TF-CBT or usual care (child-centered therapy).

Main Outcome Measures Total child PTSD symptoms assessed using child and parent structured interview (Kiddie Schedule for Affective Disorders and Schizophrenia, Present and Lifetime Version [K-SADS-PL]) and self-report (University of California at Los Angeles PTSD Reaction Index [RI]). Secondary child outcomes were scores on the K-SADS-PL (PTSD symptom clusters), Screen for Child Anxiety Related Emotional Disorders (SCARED) (anxiety), Children's Depression Inventory (depression), Kaufman Brief Intelligence Test (cognitive functioning), and Child Behavior Checklist (total behavior problems).

Results Intent-to-treat analysis using last observation carried forward showed superior outcomes for TF-CBT on the total K-SADS-PL (mean difference, 1.63; 95% confidence interval [CI], 0.44-2.82), RI (mean difference, 5.5; 95% CI, 1.37-9.63), K-SADS-PL hyperarousal (mean difference, 0.71; 95% CI, 0.22-1.20), K-SADS-PL avoidance (0.55; 0.07-1.03), and SCARED (mean difference, 5.13; 95% CI, 1.31-8.96). Multiple imputation analyses confirmed most of these findings. The TF-CBT completers experienced significantly greater PTSD diagnostic remission (χ2 = 4.67, P = .03) and had significantly fewer serious adverse events.

Conclusions Community TF-CBT effectively improves children's IPV-related PTSD and anxiety.

Community-based rehabilitation of the person with a severe brain injury

Freeman, E. A. (1997)

Community-based rehabilitation (CBR) recognizes that in the secure, loving environment of his/her own home, the person with a brain injury and the family, provided with support and guidance, can effectively augment or supersede hospital-based rehabilitation. This paper will explore the methods used to establish a rehabilitation programme in the home, the initial moves, the family dynamics, the advantages, and some of the programmes required for the restoration of function of sensory, cognitive and motor abilities. The mobilization of the therapy workforce, including the use of extended family and trained volunteers from the community, is explained. The importance of volunteer meetings and the continuing education of the family and volunteers is emphasized. Respite care for the family and the aim of returning the family towards normality is considered. The enormous cost/benefit of the community-based rehabilitation is detailed, and comparative costs between this method and hospital-based rehabilitation are provided

Comparable family burden in families of clinical high-risk and recent-onset psychosis patients

Wong C, Davidson L, McGlashan T, Gerson R, Malaspina D, Corcoran C. (2008)

Aim: Family burden is prevalent in psychotic disorders, but little is known about burden experienced by families of patients in early illness. In this exploratory study, we examined the extent of burden reported by families of patients during a putative prodromal period and in the aftermath of psychosis onset. Methods: Family burden was assessed in 23 family members of patients with emerging or early psychosis. The Family Experiences Interview Schedule was used to assess both objective and subjective burden. Objective burden is comprised of increased resource demands and disruption of routine. Subjective burden includes worry, anger/displeasure and resentment at objective burden. Results: Family burden was comparable for the clinical high-risk and recent-onset psychosis patients. Worry was as high as previously reported for more chronic patients. By contrast, there was a relative absence of displeasure/anger. Family members endorsed assisting patients in activities of daily living, although not 'minding' doing so, and reported little need to supervise or control patients' behaviour. Conclusions: Early in emerging psychotic illness, families report helping patients and worrying about them, but their lives are not yet disrupted and they do not have much anger or resentment. This may be an ideal time then for intervention with families, as worry may motivate help-seeking by families. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Comparing Old and Young Adults as They Cope with Life Transitions: The Links between Social Network Management Skills and Attachment Style to Depression

Gillath O, Johnson DK, Selcuk E, Teel C. (2011)

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

Comparison of language task acquisition in adolescents with profound intellectual disabilities

Oda H, Fujita T, Inoue M. (1998)

Using an alternating treatment design, the acquisition, generalization, and maintenance of 8 tasks consisting of 2 communication functions (mand vs tact), 2 communication modes (receptive vs expressive), and 2 communicative symbols (gesture vs picture) were compared in 4 adolescents with profound intellectual disabilities and no receptive or expressive language. All Ss acquired 6 of the 8 tasks; the tasks not acquired were those in the receptive mode of manding, using either gestures or pictures. For all Ss, within the 6 tasks acquired, the tact function in the receptive mode using pictures was the most rapidly obtained and the most easily generalized and maintained, while the tact function in the expressive mode using gestures was the most slowly acquired and the most difficult to generalize and maintain. The communication function of manding was more easily acquired, generalized, and maintained than was tacting in the expressive mode for both types of symbols for all Ss. For the tact function, both types of symbols were acquired, generalized, and maintained better in the receptive mode than the expressive mode for all subjects. Also, for all Ss, pictures were more easily acquired, generalized and maintained than gestures. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Computerized training of working memory in children with ADHD- a randomized, controlled trial

Klingberg T, Fernell E, Olesen PJ, Johnson M, Gustafson P, Dahlström K, et al. (2005)

Objective

Deficits in executive functioning, including working memory (WM) deficits, have been suggested to be important in attention-deficit/hyperactivity disorder (ADHD). During 2002 to 2003, the authors conducted a multicenter, randomized, controlled, double-blind trial to investigate the effect of improving WM by computerized, systematic practice of WM tasks.

Method

Included in the trial were 53 children with ADHD (9 girls; 15 of 53 inattentive subtype), aged 7 to 12 years, without stimulant medication. The compliance criterion (>20 days of training) was met by 44 subjects, 42 of whom were also evaluated at follow-up 3 months later. Participants were randomly assigned to use either the treatment computer program for training WM or a comparison program. The main outcome measure was the span-board task, a visuospatial WM task that was not part of the training program.

Results

For the span-board task, there was a significant treatment effect both post-intervention and at follow-up. In addition, there were significant effects for secondary outcome tasks measuring verbal WM, response inhibition, and complex reasoning. Parent ratings showed significant reduction in symptoms of inattention and hyperactivity/impulsivity, both post-intervention and at follow-up.

Conclusions

This study shows that WM can be improved by training in children with ADHD. This training also improved response inhibition and reasoning and resulted in a reduction of the parent-rated inattentive symptoms of ADHD.

Concordance of Family and Staff Member Reports About End of Life in Assisted Living and Nursing Homes

Rich SE, Williams CS, Zimmerman S. (2010)

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

Conditions for relatives´ involvement in nursing homes

Holmgren, J. (2015)

The overall aim of this thesis was to describe and analyse how the involvement of relatives is conditioned in nursing homes from different critical perspectives. Gender perspectives, discourse analysis and intersectional theory are applied, based on social constructionist ontology. The thesis comprises three qualitative papers and data are based on ethnographically-focused fieldwork in three municipal nursing homes in the form of formal/informal interviews, participating observations and the analysis of documents.

Based on gender perspectives, the routines and reasonings among nursing staff were studied and thematically analysed in relation to how these conditioned the involvement of relatives in the daily caring activities (I). In the second study (II), the nursing staff were interviewed in groups to describe, discursively analyse and identify the biopolitical meaning in the "involvement discourse" that was collectively constructed in the speech of the nursing staff concerning the involvement of relatives. In the last study (III), interviews with relatives were thematically analysed in the context of intersectional theory about their involvement in the nursing homes.

The findings show that the conditions for relatives' involvement were dynamic and constantly in re-negotiation, but also conservative and inflexible. This placed relatives in both privileged and unprivileged social positions in the nursing homes, which were relevant for their involvement. The relatives were considered to be "visitors", which conditioned the characteristics and levels of involvement in the care of the residents and was linked to gendered notions of the division of labor, both within the groups of relatives and between nursing staff and relatives (I). The involvement of relatives was conditioned by the biopolitics of an "involvement discourse" that prevailed in the nursing homes. This built upon family-oriented rhetorics and metaphors that upheld and legitimised notions about relatives. The relatives were considered to be members of the "old" family in relation to the "new" family represented by the nursing staff (II). The relatives described how they were positioned in a betweenship, squeezed between different competing social musts from the older family members, the nursing homes as institutions and the nursing staff (III).

Inverting the prevailing picture of the involvement of relatives would make it possible to consider the nursing staff as pedagogical, professional and caring "visitors" in the nursing homes for the benefit of the residents and their relatives. This could be achieved through a constructive change management which emphasises the learning of nursing staff, their responsibility and the emotions of relatives, along with a focus on alternative notions of involvement, where relatives are included in the development of quality of care in Swedish nursing homes.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

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

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

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

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

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

Conformity and resistance in Self-Management Strategies of ‘Good Girls’.

Sanders, J., & Munford, R., (2008)

This article examines how girls manage challenging encounters with non-familial adults. Drawing on a subset of qualitative data collected as part of a larger ethnographic study, it examines the ways girls maintain a strong sense of self as a good person in the face of interpersonal challenge from these non-familial adults. The discourse of the 'good girl' allows them to resist excessive demands of adults and provides opportunities to have fun. The importance of the parent—child relationship in terms of providing a safe context from which the girls can generate the good and bad girl facades is also highlighted.

Connecting Children: Care and Family Life in Later Childhood.

Brannen J, Heptinstall E, Bhopal K. (2000)

Connecting Children focuses on children's understandings of care and their views of different family lives. It portrays the lives of children aged 11-12 and shows how families connect children in different ways both in the household but also in their wider kinship networks. The children studied reflect upon family life and especially upon situations where their own family lives change dramatically, such as when parents divorce or are unable to care for them.
This book will be of interest to those working in education, social work, child care, counselling, social policy and childhood studies.

Consumer and carer participation in mental health care: The carer’s perspective: Part 2 – barriers to effective and genuine participation

Goodwin, V. and B. Happell (2007)

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

Consumption of psychotropic drugs among adults who were in societal care during their childhood

Vinnerljung B & Hjern A (2014)

BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.

Consumption of psychotropic drugs among adults who were in societal care during their childhood

Vinnerljung B & Hjern A (2014)

BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.

Contemporary home-based care : encounters, relationships and the use of distance-spanning technology

Wälivaara, B.-M. (2012)

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

Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!

COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H. (2003)

Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.

Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.

Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.

Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.

Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.

Convention on the Rights of the Child

UN (1989)

The United Nations Convention on the Rights of the Child (commonly abbreviated as the CRC, CROC, or UNCRC) is a human rights treaty which sets out the civil, political, economic, social, health and cultural rights of children. The Convention defines a child as any human being under the age of eighteen, unless the age of majority is attained earlier under a state's own domestic legislation.

Nations that ratify this convention are bound to it by international law. Compliance is monitored by the UN Committee on the Rights of the Child, which is composed of members from countries around the world. Once a year, the Committee submits a report to the Third Committee of the United Nations General Assembly, which also hears a statement from the CRC Chair, and the Assembly adopts a Resolution on the Rights of the Child.

Governments of countries that have ratified the Convention are required to report to, and appear before, the United Nations Committee on the Rights of the Child periodically to be examined on their progress with regards to the advancement of the implementation of the Convention and the status of child rights in their country. Their reports and the committee's written views and concerns are available on the committee's website.

The UN General Assembly adopted the Convention and opened it for signature on 20 November 1989 (the 30th anniversary of its Declaration of the Rights of the Child). It came into force on 2 September 1990, after it was ratified by the required number of nations. Currently, 196 countries are party to it, including every member of the United Nations except the United States.

Two optional protocols were adopted on 25 May 2000. The First Optional Protocol restricts the involvement of children in military conflicts, and the Second Optional Protocol prohibits the sale of children, child prostitution and child pornography. Both protocols have been ratified by more than 150 states.

A third optional protocol relating to communication of complaints was adopted in December 2011 and opened for signature on 28 February 2012. It came into effect on 14 April 2014.

Conversation partner training with spouses of persons with aphasia: A pilot study using a protocol to trace relevant characteristics

Saldert C, Backman E, Hartelius L. (2012)

Background: Conversation partner training can be effective in improving communication in aphasia. However, there is a need for further research about effects of specific training programmes as well as about the relevant characteristics of the conversation partners who are to be candidates for training.

Aims: This pilot study explores the applicability of an adaptation of a conversation partner training programme. In addition, a protocol for assessment of variables relating to the person with aphasia and the conversation partner that may be involved in changes in conversational interaction is examined.

Methods & Procedures: Three dyads with persons with aphasia and their spouses participated in this explorative study with a case-series design. The training outcome was monitored with measures of perceived functional communication and analysis of multiple video-recorded natural conversations obtained at baseline, post intervention, and at a 12-week follow-up. Repeated measures of comprehension, word fluency, and psychological well-being were obtained as well as descriptive measures of the executive function and a profiling of attitudes and behaviour in communication in the spouses.

Outcomes & Results: All three persons with aphasia and two of the spouses reported a slight improvement in the measure of perceived functional communication. This perception of improvement was also reflected in blinded, independent assessments of ability to support communication in conversations for the two spouses who reported improvement. The profiling of the third spouse indicated problems in attitudes to communication and also in aspects of executive function, and may account for the lack of intervention effects seen in the third dyad.

Conclusions: The results show that intervention with the adapted training programme may be effective. It might be argued that the outcome measures as well as other measures fulfil their purpose. The profiling of relevant traits in the conversation partner may be useful, although the prognostic validity of the instruments needs to be further evaluated.

COPD in primary care: exploring conditions for implementation of evidence-based interventions and eHealth

Lundell, Sara (2018)

Doktorsavhandling

Abstract [en]
Chronic obstructive pulmonary disease (COPD) is a major public health problem. Symptoms and comorbidities associated with COPD affect the whole body. Clinical guidelines for COPD recommend pulmonary rehabilitation (PR) including exercise training and education promoting self-management strategies. Despite the positive effects on health status, few people with COPD have access to PR. Electronic health (eHealth) has been seen as promising for increased access to evidence-based interventions. To increase the likelihood of a successful implementation, it is important to identity enablers and barriers that might affect implementation outcomes. The aim of this thesis is to explore the experiences, interactions and contexts of the management of COPD in primary care, as well as the design, experienced relevance, effect and expected usefulness of eHealth solutions. The thesis is based on four papers that have used qualitative, quantitative and mixed methods. Qualitative interviews (papers I, II, IV) and focus group discussions (paper IV) were analysed using qualitative content analysis (papers I, IV) and grounded theory (paper II). Quantitative data, collected using questionnaires (paper I) and in a systematic review (paper III) was analysed with descriptive statistics (paper I) and meta-analysis (paper III). The qualitative and quantitative findings in paper I and II were merged in a mixed methods design. Participants in the studies included healthcare professionals (papers I, IV), people with COPD (papers II, III, IV), their relatives (paper IV), senior managers representing primary care centres (paper I), and external researchers (paper IV). The findings in this thesis gave insight in the complex interactions within COPD management between the healthcare organisation (e.g. resources and priority), healthcare professionals (e.g. attitudes, collaboration and competence) and people with COPD (e.g. emotions, attitudes and coping). The healthcare organisation is fragmented with few resources and COPD care takes low priority. The healthcare professionals are Building COPD care on shaky ground (paper I), where the shaky ground is a presentation of the non-compliant organisation and other challenging circumstances. Driven, responsible and ambitious healthcare professionals wish to provide empowering COPD interventions through interprofessional collaboration, but are inhibited by their limited knowledge of and experience with COPD. People with COPD are (Re)acting in an ambiguous interaction with primary care providers (paper II), have limited knowledge and struggle with stigma, while they try to accept and manage their disease. The attitudes and support of healthcare professionals' are essential for necessary interaction and self-management strategies. For people with COPD, this can take different paths: either enhancing confidence with empowering support or coping with disempowering stigma and threat. eHealth solutions such as telehealth, have been used to provide interventions to people with COPD through phone calls, websites or mobile phones, in combination with exercise training and/or education. They show a significant effect on physical activity level, but not on physical capacity and dyspnoea (paper III). Healthcare professionals, people with COPD and their relatives, and external researchers report that, to be useful and relevant in clinical practice, an eHealth tool should be reinforcing existing support structures (paper IV). Furthermore, it needs to fit in the current routines and contexts and create a sense of commitment in its users. According to the participants, information about selfmanagement strategies, such as how-to videos are valuable, and need to help them identify themselves with the people in the videos. The participants regard eHealth as providing knowledge and support for self-management. In conclusion, there is a need for implementation of clinical guidelines for COPD in primary care in order to improve both the management of COPD, as well as the interaction between healthcare professionals and people with COPD. Several actions are needed to facilitate this implementation. The priority and status of COPD management in primary care need to be raised. In addition, more resources (e.g. healthcare professionals) for COPD interventions is required to enhance the conditions for interprofessional collaboration and patient participation. Furthermore, it is important to include physiotherapists in COPD management, considering the focus on exercise training and physical activity. Healthcare professionals in primary care need further training and more time to educate and empower people who have COPD. The use of eHealth may lead to improvements in patient outcomes, although more research on web-based interventions is required. User involvement in the development process of an eHealth tool increases its usefulness and relevance in clinical practice and everyday life. The findings from this thesis may guide implementation processes in primary care, as well as the development of eHealth tools for people with COPD or other long-term conditions.

Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life

Dahlrup, B., Ekström, H., Nordell, E., & Elmståhl, S. (2015)

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us?

Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.

Objectives
The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.

Methods
We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).

Results
Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).

Conclusion
High strain affects caregivers' HRQoL and LS in a negative way.

Practice
It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.

Implications
A general policy program aiming to identify caregivers and their needs for support is much needed.

Coping efficacy and psychological problems of children of divorce

Sandler, I.N, Tein, J., Mehta, P., Wolchik, S. & Ayers, T. (2000)

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

Coping responses inventory: An update on research applications and validity

Moos R. (2004)

This brief self-report inventory identifies cognitive and behavioural responses the individual used to cope with a recent problem or stressful situation. The 8 scales include Approach Coping Styles (Logical Analysis, Positive Reappraisal, Seeking Guidance and Support, and Problem Solving) and Avoidant Coping Styles (Cognitive Avoidance, Acceptance or Resignation, Seeking Alternative Rewards, and Emotional Discharge). Information about reliability and validity is presented in the professional manual for each version.

The CRI can be used in in counselling, stress management education, and other settings to identify and monitor coping strategies in adults and adolescents, to develop better clinical case descriptions, and to plan and evaluate the outcome of treatment.

Two separate versions of the CRI have been developed, the CRI-Adult (older than 18 years of age) and the CRI-Youth (ages 12-18 years). Each version has its own manual and an Ideal and an Actual Form. The Ideal Form may be used to compare actual and preferred coping styles, to set treatment goals, and to monitor progress. The Actual Form surveys the individual's actual coping behaviour, whereas the Ideal Form surveys preferred coping styles. Both forms are written at a 6th-grade reading level.

Individuals complete the self-report inventory, marking answers on the answer sheet. The carbonless bottom sheet contains a scoring grid for quick and easy calculation of raw scores. The back page of the answer sheet contains a profile for determining and plotting T-scores and examining patterns of coping. Scoring and profiling take about 5 minutes.

Coping strategies of parents facing child diabetes mellitus

Azar, R., & Solomon, C. R. (2001)

This study identified differences in strategies used by mothers and fathers (N = 60) in coping with their child's insulin-dependent diabetes mellitus. The Ways of Coping Questionnaire (WCQ) was administered during a home interview. Results showed that both parents used planful problem solving, exercised positive reappraisal, and sought social support frequently, with mothers using more planful problem-solving strategies than fathers. Within the family, analyses showed that fathers were more likely to use distancing, independent of the child's sex, whereas mothers were more likely to frequently use all the coping strategies when the child was a girl. The implications of the results for nursing are discussed. Copyright © 2001 by W.B. Saunders Company

Coping with caring: Profiles of caregiving by informal carers living with a loved one who has Dementia

Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J. (2012)

Background and aim: While the number of people suffering from Dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has Dementia experience their caregiving situation. Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements. Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers. Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.

Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer

Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008)

The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.

Co-resident care-giving and problematic sleep among older people: evidence from the UK Household Longitudinal Study

Emma Maun, Karen Glaser, Laurie Corna (2019)

Abstract:
In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.

Correlational and experimental study of resilience in children and parentally bereaved children

Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T. (2003)

This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).

The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.

Cortical processing of tactile language in a postlingually deaf-blind subject

Osaki Y, Doi K, Takasawa M, Noda K, Nishimura H, Ihara A, et al. (2004)

We compared neural activation detected by magnetoencephalography (MEG) during tactile presentation of words and non-words in a postlingually deaf-blind subject and six normal volunteers. The left postcentral gyrus, bilateral inferior frontal gyri, left posterior temporal lobe, right anterior temporal lobe, bilateral middle occipital gyri were activated when tactile words were presented to the right hand of the deaf-blind subject. This set of activated regions was not observed in the normal volunteers, although activation of several combinations of these regions was detected. Positron emission tomography confirmed the location of the MEG-activated areas in the deaf-blind subject. Our results demonstrated that the deaf-blind subject is heavily involved in interpreting tactile language by enhancing cortical activation of cognitive and semantic processing. © 2004 Lippincott Williams & Wilkins.

Cortisol levels six-years efter participation in the Family Bereavement Program

Luecken, L., Hagan, M., Sandler, I.N., Tein, J., Ayers, T.S. & Wolchik, S.A. (2010)

Recent studies have found short-term adrenocortical benefits of early interventions for at-risk children. The current study evaluated the effects of the Family Bereavement Program on cortisol levels six years after the program. Parentally bereaved children were randomly assigned to the 12-week preventive intervention (n=78) or a self-study control (n=61) condition. Six years later (mean age 17.5), salivary cortisol levels were measured before and after a conflict discussion task conducted in late afternoon/early evening. The intervention group had significantly higher cortisol levels across the task compared to the control group, and lower cortisol was associated with higher externalizing symptoms. The group effect did not differ by age at the time of death, and the group difference remained significant after adjustment for pre-intervention mental health and current mental health symptoms. Results suggest that a family-focused intervention for parentally bereaved youth may have prevented the development of attenuated cortisol secretion suggestive of dysregulation and associated with externalizing problems.

Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients

Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al. (2003)

Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.

Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.

Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.

Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.

Couples' provision of informal care for parents and parents-in-law: far from sharing equally?

Henz, U (2009)

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.

Couples- versus individual-based therapy for alcohol and drug abuse: Effects on children's psychosocial functioning

Kelley ML, Fals-Stewart W. (2002)

The study compared the effect of couples-based vs individual-based therapy for men who entered outpatient substance abuse treatment on the psychosocial functioning of children in their homes. Men were randomly assigned to (1) behavioral couples therapy (BCT), (2) individual-based treatment (IBT) or (3) couples-based psychoeducational attention control treatment (PACT). For both children of alcohol (N=71) and drug-abusing men (N=64), parents' ratings of children's psychosocial functioning was higher for children whose fathers participated in BCT at posttreatment and at 6- and 12-mo follow-up than for children whose fathers participated in IBT or PACT. BCT resulted in greater improvements in parents' dyadic adjustment and fathers' substance use. Thus, couples-based intervention that addresses both issues may have greater benefits for children in these homes. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

CPICS Child and Parents’ Interaction Coding system

Hedenbro, Monica & Lidén, Anette (2001)

The aim of this thesis was to describe how early triadic interaction between the newborn child and its mother and father begins, develops, and matures over the child's first 4 years of life. Systemic family theory and developmental theory are combined to go beyond the "mother-child" dyad to the "mother-father-child" triad. Lausanne Trilogue Play (LTP, originally Lausanne Triadic Play) was developed by Elisabeth Fivaz and her learn in Lausanne, Switzerland, and used to carry out standardised studies of child-mother-father interaction. The family is placed in a triangle that allows all three partners optimal access to each other. The focus of this thesis was to describe triadic interaction when all members of the triad interact with each other. It is based on a pioneering longitudinal and prospective study. It was begun with interviews when the parents were expecting their first child. The development of triadic interaction was then monitored by repeated, videotaped LTP observations when the child was 3, 9, 18, and 48 months of age. The study is part of an international collaboration to describe the development of triadic interaction in four groups: 20 Swiss German-speaking families, 20 Swiss French-speaking families, 20 American families (Seattle, Washington, USA), and 20 Swedish families. In Sweden, consecutive Swedish-speaking couples were recruited by midwives at a maternity health care clinic in Stockholm. Twelve boys and 8 girls were born. To analyse the children's communicative skills in relation to their behaviour at age 4 years, the preschool teachers were asked to fill in the Preschool Behaviour Questionnaire (PBQ). The author developed the Child-Parents-Interaction Coding System (CPICS) to analyse quantitative and qualitative variables in triadic interaction. The CPICS was used to analyse LTP observations of the Swedish families over time and to compare the Swedish and American groups of families. One child, a girl, exhibited a typical development. At the age of 5 she was referred to a child and adolescent neuropsychiatric department where, at the age of 7 years, she was diagnosed with an autism spectrum disorder. She was excluded from the group analysis and instead presented as a case report. When the children were 3 months of age, parents held back concerning contribiltion (the starting point for a sequence of interactions) and allowed the "child's just being- to launch conversation. This pattern persisted up to 48 months, with the parents giving the child space. Types or child contributions varied over time. When the child was 3 months old, its parents treated all its behaviours as contributions for starting points of conversation, while child contributions at 48 months generally had a communicative character. Coparenting seems to set the structure for early communication by using various nonverbal, vocal, and verbal methods to support the child in turn-taking sequences. A cultural difference in the tempo of play between American and Swedish families was found. Although both groups of families interacted in a synchronized and reciprocal way, the pace of play in triadic interaction was taster in American families. Positive correlations between complex triadic interaction (number of turn-taking sequences) at 3, 9, and 18 months (significant at 9 months) and preschool teachers' assessments of children's social competence at 48 months suggest some predictive power of this variable in the assessment system. The autistic girl and her parents exhibited deviations in early triadic communication - most clearly when she was 9 months old. Findings are discussed regarding their importance concerning early interventions in the family system.

Critical Social Policy 1995

Morris, Jenny & Keith, Lois (1995)

This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.

Culturally and Linguistically Diverse (CALD) Families Dealing with Dementia: An Examination of the Experiences and Perceptions of Multicultural Community Link Workers

Boughtwood D, Shanley C, Adams J, Santalucia Y, Kyriazopoulos H, Pond D, et al. (2012)

Dementia is a chronic illness involving increasing levels of care, often provided by family members, particularly in culturally and linguistically diverse (CALD) communities. Multicultural community link workers are often the primary service providers assisting families to access health and welfare services and as such have extensive experience of, and possess in-depth knowledge about, CALD family care-giving for dementia. While research has been undertaken on dementia in CALD communities, this research has not focused on the experiences and perceptions of these multicultural workers with regards to CALD family care-giving. In response to this gap in the research, this paper presents the results of an empirical investigation of multicultural workers' perspectives with regard to the cultural traditions informing CALD family care-giving, CALD families' understandings of the term 'carer' and family arrangements regarding care. Due to their close relationship and knowledge of families, multicultural workers can offer an important perspective that is invaluable in informing the provision of carer education and support within CALD communities.

Current and residual functional disability associated with psychopathology: Findings from the Netherlands Mental Health Survey and Incidence Study (NEMESIS).

Bijl AV, Ravelli A. (2000)

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

Dagboken – för dig som är ung och har någon som är sjuk i familjen

Katrin Bartfai Jansson och Bettina Edgren (2011)

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

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

Daglig verksamhet enligt LSS – en kartläggning

Socialstyrelsen (2008)

Daglig verksamhet är en av de tio insatserna i lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Det är också den insats som flest personer har. Antalet personer med daglig verksamhet har ökat från 20 500 år 2000 till 25 800 år 2006. Kostnader per person i daglig verksamhet sjönk under samma tid med tio procent. Mot denna bakgrund, och på grund av att Socialstyrelsen från enskilda personer, från brukarorganisationer och från yrkesverksamma inom området har fått signaler om brister i kvaliteten, tog Socialstyrelsen initiativ till denna kartläggning av daglig verksamhet enligt LSS.

Bilden som framträder genom kartläggningen är att utbudet av aktiviteter inom den dagliga verksamheten är stort. Trots detta finns det svårigheter för kommunerna att i vissa fall finna verksamheter som passar varje enskild person.

Traditionellt har daglig verksamhet varit organiserad som gruppverksamhet i särskilda lokaler. Utvecklingen har gått mot mer flexibla former, t.ex. utflyttade grupper som finns på olika företag. Av dem som har beslut om daglig verksamhet har i dag cirka 15 procent detta i form av en individuell placering på en ordinarie arbetsplats. Variationen är dock stor mellan olika kommuner.

Kommuner organiserar sin verksamhet på olika sätt. Vilka nämnder som har ansvaret för daglig verksamhet enligt LSS varierar. Totalt sett har cirka åtta procent av dem som har daglig verksamhet detta i enskild regi. I storstadsregionerna däremot är motsvarande siffra 21 procent. Kartläggningen har inte kunnat visa på några större skillnader mellan kommunal och enskild verksamhet, när det gäller verksamhetens innehåll.

Utmaningen för den dagliga verksamheten ligger i att vidareutveckla både innehållet och formerna för verksamheten samt att öppna vägen till arbetslivet.

Socialstyrelsen kan konstatera att det övergripande målet med daglig verksamhet, att den enskilde på sikt ska kunna få möjlighet till lönearbete, inte uppfylls. Övergångar till ett sådant arbete är näst intill obefintliga. Den dagliga verksamheten riskerar att bidra till en inlåsningseffekt då andra aktörer inom arbetsmarknadspolitikens fält inte ser denna grupp som sin målgrupp. Samverkan mellan daglig verksamhet och andra arbetsmarknadspolitiska aktörer brister. Den måste utvecklas för att målet ska nås.

Traditionellt finns det god kunskap för och erfarenhet av att ge personer med utvecklingsstörning eller med ett stort omvårdnadsbehov en daglig verksamhet med god kvalitet. Det är angeläget att även denna del av verksamheten utvecklas så att inte dessa personers behov kommer i skymundan för de nya behov som ställs på verksamheten.

Daily life for young adults who care for a person with mental illness: a qualitative study

Ali, Lilas, Ahlström Hedman, Britt, Krevers, Barbro, Skärsäter, Ingela (2011)

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

De kan, de vill och de orkar, men …: studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Gustafsson Wallengren, Catarina (2009)

Akademisk avhandling nr 17

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".

De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Wallengren Gustafsson, C. (2009)

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

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.

Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

Holm M, Carlander I, Fürst CJ, Wengström Y, Årestedt K, Öhlen J, Henriksson A (2015)

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.

Den traumatiserade flyktingfamiljen i behandling.

Hjern, A., Pålsson, J., & Ryman Envall, K. (1995)

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.

Den traumatiserade flyktingfamiljen i behandling

Hjern, A., Pålsson, J., & Ryman Envall, K. (1995)

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 symtom orsaker och behandlingsmöjligheter

Wasserman, Danuta (2000)

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.

Depression and loss

Brown, G. W., Harris, T., & Copeland, J. R. (1971)

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.

Depression and Quality of Informal Care: A Longitudinal Investigation of Caregiving Stressors

Smith GR, Williamson GM, Miller LS, Schulz R. (2011)

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.

Depression in Parents, Parenting and Children

National Research Council and Institute of Medicin. (2009)

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.

Depression in the oldest old in urban and rural municipalities

Bergdahl, E., Allard, P., Lundman, B., & Gustafsson, Y. (2007)

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.

Depressive disorders in caregivers of dementia patients: A systematic review

Cuijpers, P. (2005)

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.

Depressive symptoms, social support and personal health behaviors in young men and women

Allgower, A., Wardle, J., & Steptoes, A. (2001)

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.

Depressive symptoms, social support, and personal health behaviors in young men and women

Allgower A, Wardle J, Steptoe A. (2001)

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.

Descriptions of children's needs and parenthood among mothers with intellectual disability

Starke, M. (2011)

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.

Design of a Web-based individual coping and alcohol-intervention program (web-ICAIP) for children of parents with alcohol problems: study protocol for a randomized controlled trial

Elgan, T. H., Hansson, H., Zetterlind, U., Kartengren, N., & Leifman, H. (2012)

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.

Design of an internet-based health economic evaluation of a preventive group-intervention for children of parents with mental illness or substance use disorders

Woolderink, M., Smit, F., van der Zanden, R., Beecham, J., Knapp, M., Paulus, A., & Evers, S. (2010)

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.

Designing online support for families living with depression

Stjernswärd, S. (2009)

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.

Determining alertness in individuals with profound intellectual and multiple disabilities: the reliability of an observation list

V. Munde, C. Vlascamp, A. Ruijsenaars and H. Nakken (2011)

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.

Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

Andréasson, F. Andreasson, J. Hanson, E. (2017)

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.

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods

van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos G, Rutten F. (2006)

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.

Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip

Thabet, A. A., Abed, Y., & Vostanis, P. (2001)

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.

Developing and evaluating complex interventions: the new Medical Research Council guidance

Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. (2008)

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.

Developing Key Working

Megoni, S., Oates, J., & Bardsley, J. (2014)

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.

Developing measures of perceived life quality - Results from several national surveys

Andrews, F. M., & Withey, S. B. (1974)

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.

Developing service to support parents caring for a technology-dependent child at home

Kirk, S., & Glendinning, C. (2004)

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.

Developing the concept of family involvement and alienation questionnaire in the context of psychiatric care

Ewertzon, M., K. Lützén, et al. (2008)

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.

Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden

Weber Falk, Megan (2020)

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.

Effectiveness of combining tangible symbols with the Picture Exchange Communication System to teach requesting skills to children with multiple disabilities including visual impairment

Ali E, MacFarland SZ, Umbreit J. (2011)

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.

Effectiveness of culturally adapted Strengthening Families Programme 6-11 years among Portuguese families

Magalhães CCA, Kumpfer KL. (2015)

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.

Effectiveness of school-based family and children's skills training for substance abuse prevention among 6-8-year-old rural children

Kumpfer KL, Alvarado R, Tait C, Turner C. (2002)

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.

Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand

Oupra R, Griffiths R, Pryor J, Mott S. (2010)

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.

Development of the communication complexity scale

Brady, N. C., Fleming, K., Thiemann-Bourque, K., Olswang, L., Dowden, P., Saunders, M. D., & Marquis, J. (2012)

Acknowledgments
This research was supported by Grants P01 HD018955 and R01 DC007684 from the National Institutes of Health. We wish to thank Kris Mathews, Megan Burgardt, and the individuals who participated in this research and their families.
PurposeAccurate description of an individual's communication status is critical in both research and practice. Describing the communication status of individuals with severe intellectual and developmental disabilities is difficult because these individuals often communicate with presymbolic means that may not be readily recognized. Our goal was to design a communication scale and summary score for interpretation that could be applied across populations of children and adults with limited (often presymbolic) communication forms.

MethodThe Communication Complexity Scale (CCS) was developed by a team of researchers and tested with 178 participants with varying levels of presymbolic and early symbolic communication skills. Correlations between standardized and informant measures were completed, and expert opinions were obtained regarding the CCS.

ResultsCCS scores were within expected ranges for the populations studied, and interrater reliability was high. Comparison across other measures indicated significant correlations with standardized tests of language. Scores on informant report measures tended to place children at higher levels of communication. Expert opinions generally favored the development of the CCS.

ConclusionsThe scale appears to be useful for describing a given individual's level of presymbolic or early symbolic communication. Further research is needed to determine whether it is sensitive to developmental growth in communication.

Development of the participation and environment measure for children and youth: conceptual basis

Coster WJ, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. (2012)

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities.
Implications for Rehabilitation
As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure.
A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities.
The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial

Ali L, Krevers B, Sjöström N, Skärsäter I (2014)

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.

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

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)

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites.

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

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)

Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome

Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y. (2013)

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.

Effects of a sexual rehabilitation intervention program on stroke patients and their spouses

Song H, Oh H, Kim H, Seo W. (2011)

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.

Dialektisk beteendeterapi vid borderline personlighetsstörning. Utvärdering av nya metoder inom hälso- och sjukvården

SBU (2005)

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.

Dialogue and Challenge: Involving Service Users and Carers in Small Group Learning with Social Work and Nursing Students

Tew J, Holley T, Caplen P. (2012)

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'.

Differences in social support of caregivers living with partners suffering from COPD or dementia

Nordtug B, Krokstad S, Sletvold O, Holen A. (2013)

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.

Effects of early life stress on cognitive and affective function: an integrated review of human literature

Pechtel, P., & Pizzagalli, D. A. (2011)

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.

Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors

Whiteneck G, Dijkers MP. (2009)

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.

Effects of Four Therapy Procedures on Communication in People with Profound Intellectual Disabilities

Lindsay WR, Black E, Broxholme S, Pitcaithly D, Hornsby N, Lindsay B. (2001)

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.

Effects of maternal mental retardation and poverty on intellectual, academic, and behavioural status of school-age children

Feldman, MA., & Walton-Allen, N. (1997)

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.

Parent management training: Evidence, outcomes, and issues

Kazdin, Alan (1997)

OBJECTIVE:
To describe and evaluate parent management training (PMT) as a treatment technique for oppositional, aggressive, and antisocial behavior.
METHOD:
Recent research is reviewed on the efficacy of PMT; factors that contribute to treatment outcome; the range of outcomes related to child, parents, and family; and variations of treatment currently in use. Limitations are also discussed related to the impact of treatment, clinical application, and dissemination of treatment.
RESULTS AND CONCLUSIONS:
PMT is one of the more well-investigated treatment techniques for children and adolescents. Notwithstanding the large number of controlled studies attesting to its efficacy, fundamental questions remain about the magnitude, scope, and durability of impact

Parent stress management training for attention-deficit/hyperactivity disorder

Treacy L, Tripp G, Baird A. (2005)

This study assessed the effectiveness of a targeted 9-week parent stress management program (PSM) on the parenting stress, mood, family functioning, parenting style, locus of control, and perceived social support of parents of children diagnosed with DSM-IV ADHD. Sixty-three parents from 42 families were randomly assigned to 1 of 2 conditions: immediate treatment or wait-list control. Results of the randomized control trial showed that for mothers, completion of the PSM program was accompanied by significant reductions in parent-domain parenting stress together with significant improvements in parenting style (verbosity, laxness, overreactivity). For fathers, completion of the program was associated with a reduction in verbosity only. Anonymously completed consumer satisfaction questionnaires demonstrated a high degree of satisfaction with the PSM program.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

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

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

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

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement.

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Selecting Graphic Symbols for an Initial Request Lexicon

Schlosser, R. W., & Sigafoos, J. (2002)

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

Parents of children with physical disabilities - perceived health in parents related to the child's sleep problems and need for attention at night

Mörelius E, Hemmingsson H (2014)

BACKGROUND: Approximately half of all children with moderate to severe physical
disabilities have persistent sleep problems and many of these children need
parental attention at night.
AIM: To study whether sleep problems and need for night-time attention among
children with physical disabilities are associated with perceived parental
health, headache, psychological exhaustion, pain due to heavy lifting, night-time
wakefulness and disrupted sleep.
METHODS: We asked parents of 377 children with physical disabilities aged 1-16
years to complete a questionnaire about their own health. The children all lived
at home with both parents.
RESULTS: Both parents reported poor health, psychological exhaustion, more
night-time wakefulness and disrupted sleep when the child had sleep problems (P <
0.05). Mothers also reported more headache when the child had sleep problems (P =
0.001). Both parents reported more night-time wakefulness and disrupted sleep
when the child needed night-time attention (P < 0.01). In general, mothers
reported significantly poorer health, more night-time wakefulness, disrupted
sleep, headache and psychological exhaustion than fathers (P < 0.001).
CONCLUSIONS: Sleep problems need to be acknowledged within the paediatric setting
in order to prevent psychological exhaustion and poor health in mothers and
fathers of children with physical disabilities.

Parents of mentally ill adult children living at home

Schwartz, Chaya & Gidron, Ronit (2002)

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

Parents who misuse drugs and alcohol- Effective interventions in social work and child protection

Forrester D, Harwin J. (2011)

This book presents original research outlining the key elements in responding to parental misuse of drugs and alcohol.
Offers a definition of "misuse" and "addiction" and the factors that influence the nature of misuse or addiction
Reviews extensively the nature and impact of parental substance misuse on children and families using the latest evidence
Explores how research and theories might help inform professionals or non-professionals assessing families affected by parents who misuse drugs or alcohol
Provides an in-depth discussion of Motivational Interviewing, including a critical discussion of the challenges and limitations involved in using it in child and family settings
Considers the wider implications of the findings for practice and policy and argues that these responses can be used across the field of work with vulnerable children and their families

Parents who misuse drugs and alcohol- Effective interventions in social work and child protection.

Forrester D, Harwin J. (2011)

This book presents original research outlining the key elements in responding to parental misuse of drugs and alcohol.
Offers a definition of "misuse" and "addiction" and the factors that influence the nature of misuse or addiction
Reviews extensively the nature and impact of parental substance misuse on children and families using the latest evidence
Explores how research and theories might help inform professionals or non-professionals assessing families affected by parents who misuse drugs or alcohol
Provides an in-depth discussion of Motivational Interviewing, including a critical discussion of the challenges and limitations involved in using it in child and family settings
Considers the wider implications of the findings for practice and policy and argues that these responses can be used across the field of work with vulnerable children and their families

Self-management education programmes by lay leaders for people with chronic conditions

Foster G, Taylor SJ, Eldridge SE, Ramsay J, Griffiths CJ. (2007)

BACKGROUND:
Lay-led self-management programmes are becoming widespread in the attempt to promote self-care for people with chronic conditions.
OBJECTIVES:
To assess systematically the effectiveness of lay-led self-management programmes for people with chronic conditions.
SEARCH STRATEGY:
We searched: the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library 2005, Issue 1), MEDLINE (January 1986 to May 2006), EMBASE (January 1986 to June 2006), AMED (January 1986 to June 2006), CINAHL (January 1986 to June 2006), DARE (1994 to July 2006, National Research Register (2000 to July 2006), NHS Economic Evaluations Database (1994 to July 2006), PsycINFO (January 1986 to June 2006), Science Citation Index (January 1986 to July 2006), reference lists and forward citation tracking of included studies. We contacted principal investigators and experts in the field. There were no language restrictions.
SELECTION CRITERIA:
Randomised controlled trials (RCTs) comparing structured lay-led self-management education programmes for chronic conditions against no intervention or clinician-led programmes.
DATA COLLECTION AND ANALYSIS:
Two authors independently assessed trial quality and extracted data. We contacted study authors for additional information. Results of RCTs were pooled using a random-effects model with standardised mean differences (SMDs) or weighted mean differences (WMDs) for continuous outcomes.
MAIN RESULTS:
We included seventeen trials involving 7442 participants. The interventions shared similar structures and components but studies showed heterogeneity in conditions studied, outcomes collected and effects. There were no studies of children and adolescents, only one study provided data on outcomes beyond six months, and only two studies reported clinical outcomes.
PRIMARY OUTCOMES:
Health status: There was a small, statistically-significant reduction in: pain (11 studies, SMD -0.10 (95% confidence interval (CI) -0.17 to -0.04)); disability (8 studies, SMD -0.15 (95% CI -0.25 to -0.05); and fatigue (7 studies, SMD -0.16 (95% CI -0.23 to -0.09); and small, statistically-significant improvement in depression (6 studies, SMD -0.16 95% CI -0.24 to -0.07). There was a small (but not statistically- or clinically-significant) improvement in psychological well-being (5 studies; SMD -0.12 (95% CI -0.33 to 0.09)); but no difference between groups for health-related quality of life (3 studies; WMD -0.03 (95% CI -0.09 to 0.02). Six studies showed a statistically-significant improvement in self-rated general health (WMD -0.20 (95% CI -0.31 to -0.10). Health behaviours: 7 studies showed a small, statistically-significant increase in self-reported aerobic exercise (SMD -0.20 (95% CI -0.27 to -0.12)) and a moderate increase in cognitive symptom management (4 studies, WMD -0.55 ( 95% CI -0.85 to -0.26)). Healthcare use: There were no statistically-significant differences between groups in physician or general practitioner attendance (9 studies; SMD -0.03 (95% CI -0.09 to 0.04)). There were also no statistically-significant differences between groups for days/nights spent in hospital (6 studies; WMD -0.32 (95% CI -0.71 to 0.07)). Self-efficacy: (confidence to manage condition) showed a small statistically-significant improvement (10 studies): SMD -0.30, 95% CI -0.41 to -0.19. No adverse events were reported in any of the studies.
AUTHORS' CONCLUSIONS:
Lay-led self-management education programmes may lead to small, short-term improvements in participants' self-efficacy, self-rated health, cognitive symptom management, and frequency of aerobic exercise. There is currently no evidence to suggest that such programmes improve psychological health, symptoms or health-related quality of life, or that they significantly alter healthcare use. Future research on such interventions should explore longer term outcomes, their effect on clinical measures of disease and their potential role in children and adolescents.

Self-report measures of family functioning: extensions of a factorial analysis

Bloom, B. L. and S. Naar (1994)

A factor analysis of four commonly used self-report measures of family functioning (Bloom, 1985) yielded 15 5-item factors. Five of these item sets have now been revised and strengthened. These modifications were undertaken because a review of the literature has revealed that the results of the factor analysis are being increasingly used in family studies. The rationale and description of the revisions of the factor item sets are presented. Psychometric analysis of the revised factors suggests that factor scores are highly reliable as well as stable over time. In addition to presenting comprehensive reliability data, this article provides information regarding factor score intercorrelations and structure, as well as a commentary on the factors themselves.

Parents with psychosis and their children: Experiences of beardslee’s intervention

Strand, Jennifer; Meyersson, Niklas (2020)

Abstract
To meet children's needs for information and support when a parent has a mental illness, Beardslee's family intervention was implemented in Swedish psychosis care. The present study aimed to gain understanding of how parents' with psychosis and their children experienced having taken part in Beardslee's family intervention. The study followed COREQ guidelines. Semi‐structured interviews were conducted with 15 participants (8 parents with psychosis and 7 children) who had participated in the family intervention. Data were analysed with content analysis. Results showed that the parents perceived that the intervention had contributed to improved illness knowledge, communication, and understanding in the family. They also appreciated receiving support in finding an age‐adapted way of explaining their illness, but asked for structured follow‐ups in order to maintain communication. However, comparing parents' and children's interviews led to discrepancies in perceptions of the overall benefits of the intervention. In conclusion, parents with psychosis need continual support in talking to their children about their illness. Furthermore, discrepancies between parents' and children's interviews show the importance of multi‐perspective data collection when studying intervention effects

Participants' experiences of a support group intervention for family members during ongoing palliative home care

Milberg A, Rydstrand K, Helander L, Friedrichsen M. (2005)

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Participants' experiences of a support group intervention for family members during ongoing palliative home care

Milberg A, Rydstrand K, Helander L, Friedrichsen M. (2005)

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Participants' experiences of an early cognitive behavioral intervention for adolescents with symptoms of depression

Bru, L., Solholm, R., & Idsoe, T. (2013)

Cognitive–behavioral therapy (CBT) has been documented to be effective in treating depression in adolescence, but there is great variability in the clinical outcome of CBT trials. This may in part be due to variations in the content of, and emphasis on different CBT components. Moreover, little is known about adolescents' subjective experiences of CBT interventions, which also might be related to outcome. In this qualitative study, nine adolescents were interviewed about their experiences of the specific components in a CBT group intervention. The results showed that the adolescents experienced the cognitive component of the course as most useful, but somewhat difficult to use. Psycho-education, behavioral activation and the social relationships component were also experienced as beneficial. Their experiences regarding the relaxation training and the homework assignments were mixed. Negative aspects of the intervention included the experience of guilt related to being depressed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Participation and disability - a study of participation in school for children and youth with disabilities.

Eriksson L. (2006)

Participation in everyday life is vital to a child's development and well-being and is a basic human right. One definition of participation is engagement in life areas. The objective of this study is to investigate participation in school activities of children and adolescents with disabilities; the study focus on personal factors and factors in the environment, which are closely related to participation. Data were collected in a large survey and a smaller observational study. In the survey, students, parents, teachers, and special education consultants responded to statements about participation and factors related to participation such as autonomy, interaction, availability, support, and environment. In the observational study, participation was observed during various school activities during an entire school day and after school. Children were interviewed about their school day, friendships, and autonomy. The results revealed that participation is multidimensional, with an emphasis on personal experiences, interactions, and context. The theoretical assumption of the International Classification of Functioning, Disability, and Health (ICF) states that the body, participation, and the environment are related. The research results proved this assumption and support the multidimensionality of the participation construct. As indicated in previous research, children and adolescents with disabilities show a lower degree of participation in school than their peers. Participation seems to be more related to autonomy and interactions with significant others than to disability type and general environment. A closer look at various school activities reveals that children with disabilities primarily have a lower degree of participation in math, practical subjects, and science. Being included and having many friends, who provide emotional support, facilitate participation. While, frequently receiving support from teachers and assistants lowered participation. This indicates that there is a relation between support and participation: providing too much support during class can be detrimental to class participation, whereas a good social support network of other children is vital. In this thesis, participation is measured in two ways: by participation frequency and by participation intensity. By counting the number of activities that children participate in, and how often they participate in these activities, a measure of an individual's average participation is obtained, that is, participation frequency. This measure depends more on internal rather than contextual factors, and it changes more often because of internal rather than contextual changes. Intensity measures of participation refer to the amount of involvement within a specific situation, and are contextually dependent. Involvement change based on the situation and the individual's present state. Participation is personal-it is about feeling good about what you are doing and feeling competent in using available opportunities. Participation is dependent on interaction with significant others. Participation for children with disabilities also depends on being provided with necessary support. Participation frequency seems to be less dependent on support than participation intensity. The fact that intensity seem to be more dependent on support and context, shortterm interventions facilitating participation within situations are probably the most fruitful way to enhance participation.

Participation and social participation: are they distinct concepts?

Piškur B, Daniëls R, Jongmans MJ, Ketelaar M, Smeets RJ, Norton M, et al. (2014)

Introduction: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available.
Aim: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions.
Discussion: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement.
Conclusion: Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.

Bergström AL(1), von Koch L, Andersson M, Tham K, Eriksson G. (2015)

OBJECTIVE: To explore and describe persons with stroke and their caregivers'
restrictions in participation in everyday occupations, i.e. occupational gaps,
3-6 months post-stroke, in relation to life satisfaction, combined life
satisfaction, care-giver burden, perceived impact of stroke, and activities of
daily living.
DESIGN: Cross-sectional study.
SUBJECTS: Persons with stroke and their caregivers (105 dyads).
METHODS: The Occupational Gaps Questionnaire, Life Satisfaction Checklist,
Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used.
Correlations were analysed with Spearman's rank, and regression analyses used
life satisfaction as the dependent variable.
RESULTS: At least one person in 86% of the dyads perceived restrictions in
participation, with the most common gap in travelling for pleasure. Correlations
were low between the numbers of occupational gaps and life satisfaction
(R = -0.33, R = -0.31); however, life satisfaction accounted for occupational
gaps both for persons with stroke and for caregivers. A greater number of
occupational gaps were perceived in the dyads with combined low levels of life
satisfaction compared with those with combined high levels of life satisfaction.
CONCLUSION: Participation in everyday occupations is related to life satisfaction
even for caregivers of persons with stroke. The results of this study add to our
knowledge about the stroke-caregiver dyad and will help to inform family-centred
approaches within stroke rehabilitation.

Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.

Bergström AL, von Koch L, Andersson M, Tham K, Eriksson G (2015)

OBJECTIVE: To explore and describe persons with stroke and their caregivers'
restrictions in participation in everyday occupations, i.e. occupational gaps,
3-6 months post-stroke, in relation to life satisfaction, combined life
satisfaction, care-giver burden, perceived impact of stroke, and activities of
daily living.
DESIGN: Cross-sectional study.
SUBJECTS: Persons with stroke and their caregivers (105 dyads).
METHODS: The Occupational Gaps Questionnaire, Life Satisfaction Checklist,
Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used.
Correlations were analysed with Spearman's rank, and regression analyses used
life satisfaction as the dependent variable.
RESULTS: At least one person in 86% of the dyads perceived restrictions in
participation, with the most common gap in travelling for pleasure. Correlations
were low between the numbers of occupational gaps and life satisfaction
(R = -0.33, R = -0.31); however, life satisfaction accounted for occupational
gaps both for persons with stroke and for caregivers. A greater number of
occupational gaps were perceived in the dyads with combined low levels of life
satisfaction compared with those with combined high levels of life satisfaction.
CONCLUSION: Participation in everyday occupations is related to life satisfaction
even for caregivers of persons with stroke. The results of this study add to our
knowledge about the stroke-caregiver dyad and will help to inform family-centred
approaches within stroke rehabilitation.

Participation in everyday occupations and life satisfaction in the stroke-caregiver dyad [Elektronisk resurs].

Bergström, A. L. (2012)

In order to develop knowledge that can be used within rehabilitation after stroke, the general aim was to explore participation in everyday occupations and the relation to life satisfaction in persons with stroke and within the caregiver dyad. Furthermore, the aim was to understand and describe the lived experience of persons enacting agency in everyday occupations during the first year after stroke. The aim of study I was to understand the lived experience of enacting agency (i.e. making things happen by ones' actions in everyday life) and to describe the phenomenon of agency during the year after stroke. This was done with a phenomenological approach. Studies I and II had a prospective, longitudinal design and the aim of study II was to explore the extent of and the factors associated with restrictions in participation in everyday occupations i.e. occupational gaps, 12 months after stroke and to identify factors at 3 months that predicted occupational gaps 12 months after stroke. Studies III-IV used a cross-sectional design and study III described the combined life satisfaction of the stroke-caregiver dyad and investigated the association of the combined life satisfaction with the perceived impact of the stroke and the caregivers' caregiver burden one year after stroke. The aim of study IV was to explore and describe persons' with stroke and their caregivers' restrictions in participation in everyday occupations three months after study inclusion and to depict this in relation to their life satisfaction, the dyads combined life satisfaction, caregiver burden, perceived impact of stroke and ADL ability. The findings in study I showed that persons after a stroke experienced the process of enacting agency as complex negotiations of varied and changing aspects in different situations. The four characteristics that described how the participants enacted agency concerned how they managed their perturbed bodies, took into account the past and envisioned the future, dealt with the world outside themselves, and negotiated through internal dialogues. Restrictions in participation i.e. occupational gaps, were perceived by 83% of persons with stroke and almost half of the caregivers, three months after study inclusion (study IV), and 45% of the persons with stroke, one year after the incident (study II). Three months after stroke, ADL ability, social participation and not being born in Sweden predicted occupational gaps at 12 months (study II). Occupational gaps were associated with life satisfaction one year after stroke (study II) but there was a low correlation between the number of occupational gaps for the persons with stroke and their life satisfaction, 3 months after study inclusion. This also regarded the caregivers (study IV). Almost two-thirds of the stroke-caregiver dyads gave congruent responses regarding their global life satisfaction. Dyads, where both persons had a low life satisfaction; 26% and 38%, respectively (studies III-IV), experienced caregiver burden, stroke impact, and occupational gaps to a greater extent, compared with those dyads where both persons were satisfied (study III-IV). Persons use complex negotiations to participate in everyday occupations after stroke and may need client-centered support. Their process of enacting agency challenges existing definitions of agency. Also, determining predictors of occupational gaps may facilitate identification of persons risking participation restrictions. A dyadic perspective regarding life satisfaction and life after stroke can provide information about potential vulnerable persons or dyads. This knowledge can be used clinically to prevent restrictions in participation in everyday occupations for both individuals and dyads affected by stroke.

Should the government pay? Caregivers views of government responsibility and feelings of stigma about financial support.

Adamek ME (1992)

Financial support strategies to assist informal caregivers of the elderly have been implemented and/or experimented with in several states. Little is known about how receptive caregiving families are to receiving financial support from the government to assist with in-home care, particularly whether they feel stigmatized. Few existing programs have assessed caregivers' views. In examining caregivers' reactions to receiving means-tested financial assistance, it is important to assess whether they consider support of the disabled a government responsibility as well as a possible stigma. Caregivers (N = 155) of disabled veterans aged 65 and older who receive Veterans' Administration disability allowances (Aid and Attendance) were surveyed. Results indicate that caregivers feel the government is primarily responsible for supporting the long-term disabled who are cared for at home. For the most part, these caregivers did not feel stigmatized or uncomfortable receiving means-tested government assistance to support in-home care. An important implication of this study is that financial support can be a workable component of an integrated service delivery system to support informal caregiving.

Sibling Outcomes from a Randomized Trial of Evidence-Based Treatments with Substance Abusing Juvenile Offenders

Rowland, MD., Chapman, JE., & Henggeler, SW. (2008)

This study examined the substance use and delinquency outcomes for the nearest age siblings of substance abusing and delinquent adolescents that participated in a randomized clinical trial evaluating the effectiveness of integrating evidence-based practices into juvenile drug court. The sample of 70 siblings averaged 14.4 years of age, 50% were male, 71% were African-American, and 27% were white. Measures of sibling substance use and delinquency were collected at four points in time (i.e., pretreatment, 4 months, 12 months, 18 months). Multilevel Longitudinal Models were used to evaluate whether changes in sibling substance use and delinquency paralleled the treatment effects observed for their substance abusing delinquent brothers and sisters in the juvenile drug court study. Parallel sibling outcomes were obtained for substance use but not for criminal behavior, and possible reasons for the divergence in these results were discussed. The findings add meaningfully to the literature on the effects of evidence- and family-based treatments on siblings.

Sibling Outcomes from a Randomized Trial of Evidence-Based Treatments with Substance Abusing Juvenile Offenders. Available from: http://www.researchgate.net/publication/233374807_Sibling_Outcomes_from_a_Randomized_Trial_of_Evidence-Based_Treatments_with_Substance_Abusing_Juvenile_Offenders [accessed Oct 26, 2015].

Sibling Relation Across the Life Span

Cicirelli, V. (1995)

When one begins to examine the existing literature dealing with siblings, one soon becomes aware that many separate domains of sibling research exist and that there is little connection between them; for example, sibling relationships in early childhood, genetic and environmental influences on individual differences between siblings, dysfunctional sibling relation ships, adult sibling helping relationships, sibling violence and abuse, and so on. The author's aim in writing this book was to attempt to bring together for the first time studies from diverse areas of sibling research into a single volume. The book is a summary and integration of the various domains of sibling studies, extending across the life span where studies exist to make this possible. Although many gaps in the sibling research literature within and between domains of study and over the life span still exist, it is hoped that this book will motivate others to help fill in the gaps by suggesting direc tions where further research is needed.

Siblings coping strategies and mental health services: A national study of siblings of persons with schizophrenia

Friedrich RM, Lively S, Rubenstein LM. (2008)

OBJECTIVE:
This study examined the helpfulness of coping strategies and the relative importance of mental health services in coping with schizophrenia from the perspective of siblings.
METHODS:
This article presents selected survey data from a national study of 746 respondents that investigated the impact of schizophrenia on siblings' lives. The authors developed the Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS), a closed-ended questionnaire that included questions about coping strategies and mental health services.
RESULTS:
Respondents identified services for the ill sibling, including symptom control, adequate housing, and long-term planning, as more important than direct services for themselves. The top-ranked coping strategies were education about schizophrenia, a supportive family, and seeing the ill sibling suffer less because symptoms were controlled. Understanding that families were not to blame for schizophrenia was the most helpful coping strategy for nearly three-fourths of siblings. Siblings had little contact with providers in the past; yet the majority of siblings wanted providers to be available to answer questions and clarify their role in future care. At the time of the study, respondents provided social support and helped with crises, but few coordinated the total care.
CONCLUSIONS:
Siblings identified multiple ways that providers can support and assist them in coping with the impact of schizophrenia. Education and support for siblings without schizophrenia and services for their ill siblings will become increasingly important for the well-being of siblings as they are faced with the responsibility of being the primary caregivers in the future.

Siblings experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from 5 families

Benderix Y, Sivberg B. (2007)

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

Siblings of children with cancer – their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews

Jenholt Nolbris, M. & Hedman Ahlström, B. (2014)

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

Siblings of Children With Disabilities: Research Themes

Stoneman Z. (2005)

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

Siblings Relationships of Children with Autism

Kaminsky, Laura & Dewey, Deborah (2001)

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

Siblings’ needs and issues when a brother or sister dies of cancer

Nolbris, M., & Hellstrom, A-L. (2005)

Abstract
To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.

Significant others of suicide attempter’s – their view at the time of the acute psychiatric consultation

Magne-Ingvar, Ulla & Öjehagen, Agneta (1999)

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

Skolans metoder för att förebygga psykisk ohälsa hos barn – en nationell inventering i grundskolor och gymnasieskolor

Socialstyrelsen (2009)

Skolan kan ha en viktig roll för att främja psykisk hälsa bland barn och unga och för att tecken på psykisk ohälsa bland eleverna upptäcks tidigt. Hur dessa möjligheter ska tas till vara är en viktig fråga i det fortsatta preventiva arbetet. Ytterst handlar det om skolans förutsättningar att förmedla kunskap. En hälsofrämjande och förebyggande verksamhet som är väl utformad kan förändra hela skolans klimat och förbättra skolans möjligheter att klara sitt kärnuppdrag

UPP-centrum genomförde i början av år 2008 en enkätundersökning i ett urval grund- och gymnasieskolor för att få en uppfattning om vilka program och strukturerade arbetssätt som dessa använder för att upptäcka och åtgärda tidiga tecken på psykisk ohälsa. Undersökningen ingick i ett större uppdrag från regeringen att inventera metoder som används för att förebygga psykisk ohälsa hos barn.

Enkäten bestod i huvudsak av frågor inom följande områden:

Vilka program/strukturerade arbetssätt man använder i skolan för tidig upptäckt av barn som riskerar att utveckla psykisk ohälsa?
Vilka metoder/strukturerade arbetssätt man använder i skolan för att åtgärda/stödja barn som riskerar att utveckla psykisk ohälsa?
Deltar skolan i någon form av samverkan och i så fall med vem/vilka?
Vilka behov finns det av kunskapsstöd och rekommendationer?
Resultaten måste tolkas med försiktighet eftersom svarsfrekvensen bara uppgick till 58 procent, men de tyder ändå på att skolorna använder en relativt stor mängd program och strukturerade arbetssätt med ett universellt preventivt syfte i sitt arbete med att motverka mobbning och normbrytande beteende. Inte minst har många skolor utarbetat egna sådana program och strukturerade arbetssätt. Drygt hälften av skolorna hade utvärderat de program och arbetssätt som de använder. Även när det gäller föräldrastöd och föräldrasamverkan har många skolor utarbetat egna program och strukturerade arbetssätt, men många använder också etablerade program och arbetssätt. En tredjedel av de svarande skolorna använde inget program eller strukturerat arbetssätt för föräldrastöd och föräldrasamverkan. Bland dem som använde sådana program och arbetssätt hade omkring hälften utvärderat det.

En stor majoritet av skolorna uppgav att det finns nedskrivna rutiner eller handlingsplaner för hur man ska gå till väga när någon ur personalen tidigt upptäcker elever som visar tecken på psykisk ohälsa. Det var också en tydlig majoritet av de svarande skolorna som sade att de samverkar med andra verksamheter utanför skolan i syfte att upptäcka, förebygga eller åtgärda psykisk eller psykosocial ohälsa. Vanligast var samverkan med socialtjänsten och barn- och ungdomspsykiatrin, men även polisen var en vanlig samverkanspart. Färre skolor sade att de har samverkansavtal med andra verksamheter, och ännu färre att de hade dokumenterat och utvärderat samverkan.

Områden som skolorna nämnde som viktiga för kunskapsstöd var om barn och unga i olika riskmiljöer, funktionsnedsättning/diagnoser samt olika program för tidig upptäckt samt för stöd och behandling. Skolorna tillfrågades också om behovet av allmänna råd eller rekommendationer för att välja program eller arbetssätt i arbetet att upptäcka, åtgärda och förebygga psykisk ohälsa och i så fall inom vilka områden. Även om de flesta efterfrågar allmänna råd och rekommendationer i allmänhet pekar en del av svaren på att vissa områden är mer angelägna än andra. Det gäller bl.a. depressioner, självskadebeteende, ätstörningar, mobbning samt föräldrastöd och föräldrasamverkan.

Sammanfattningsvis leder resultaten till tre centrala slutsatser inför det fortsatta arbetet med skolans roll och insatser för elever med psykisk ohälsa:

Skolans uppdrag och roll behöver förtydligas i förhållande till arbetet med att förebygga psykisk ohälsa hos barn och unga. Ingen annan verksamhet har så breda och långvariga kontakter med barn och unga som skolan. Skolans arbete för elevernas personliga utveckling kan, direkt och indirekt, påverka deras psykiska hälsa. Det kan öka möjligheterna att tidigt upptäcka tecken på psykisk ohälsa och att ge rätt stöd åt barn och unga med tecken på psykisk ohälsa. Det finns också ett tydligt samband mellan skolans kunskapsmål och psykisk hälsa.
Det behövs fortsatta studier av de program och strukturerade arbetssätt som skolan använder för att tidigt upptäcka tecken på ohälsa bland elever och om de program och arbetssätt som används för att ge elever med tecken på psykisk ohälsa stöd. Dessutom behövs fördjupade analyser av vad andra program och arbetssätt, som används i t.ex. arbetet mot mobbning, kan betyda för möjligheterna att förebygga psykisk ohälsa hos barn.
Skolan behöver bättre tillgång till kunskaper om barns psykiska hälsa och om hur de kan arbeta med att upptäcka tidiga tecken på psykisk ohälsa och själva eller i samverkan med andra ge elever med tecken på psykisk ohälsa rätt stöd.

Partner violence among women before, during, and after pregnancy: Multiple opportunities for intervention

Macy, R. J. (2007)

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

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

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

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

Partnership working: The key to the AT-technology transfer process of the ACTION service (Assisting Carers using Telematics Interventions to meet Older people's Needs) in Sweden

Magnusson, L. and E. Hanson (2012)

ACTION (Assisting Carers using Telematics Interventions to meet Older people's Needs) stemmed from an EU-funded project (1997-2000). It is an Information and Communication Technology (ICT) based support service designed together with frail older people and their family carers to help empower them in their daily lives by providing access to web-based educational programmes, support from other ACTION families and dedicated care practitioners via the use of an integrated videophone system. It is currently running as a mainstream service in Bors municipality in West Sweden and as implementation projects in an additional twenty-five municipalities across Sweden. It is well recognised that there are relatively few examples of telecare projects that have successfully managed the transfer to a mainstream service. Based on our fourteen years of experience with the design and implementation of ACTION, we reflect on the major lessons learned. This paper highlights the user centred design model developed and refined during this period, including the range of methods for working in partnership with a variety of stakeholder groups at all stages of the technology transfer process of the ACTION service.

Skrämda barn Klinisk barnpsykologi, utveckling på avvägar

Broberg, A., Almqvist, K., Mothander, P. R., & Tjus, T. (2015)

Boken vill belysa hur den psykiska utvecklingen hos barn kan ta sig olika vägar. Psykisk ohälsa ses därvid som en avvikelse från normalutvecklingen. Utifrån frågeställningar som varför barn blir rädda, ängsliga eller arga beskriver författarna vad det är som gör att vissa barn kan behöva professionell hjälp för att utvecklas i rätt riktning.

Boken består av två delar. I den första ges en allmän introduktion till den kliniska barnpsykologin. Författarna redogör för bland annat utvecklingspsykopatologin och anknytningsteorin. Genomgående presenteras utvecklingen som ett ständigt pågående samspel mellan barnets medfödda egenskaper och den omgivande miljöns sätt att svara på barnets behov och personliga uttryckssätt. Barnets föräldrar har därvidlag en unik betydelse, vilket inte innebär att andra miljöfaktorer, som syskon och jämnårigas betydelse, förringas. I denna del presenteras och diskuteras också det psykiatriska diagnosbegreppet och dess tillämpbarhet inom klinisk barnpsykologi.

I den andra delen använder författarna sin långa kliniska erfarenhet för att presentera olika former av psykisk ohälsa hos barn. I de olika kapitlen belyses med konkreta kliniska exempel utredning och förslag till behandling av barn med inåtvända (ångest och depression), utagerande (ilska och bråk) eller mer neuropsykologiska besvär.

Boken riktar sig till studerande inom psykologi, pedagogik, socialt arbete och andra vårdutbildningar. Den vänder sig också till yrkesverksamma inom barnhälsovård, skola, socialtjänst m.m. och till vidareutbildningar i psykoterapi.

Paternal predictors of the mental health of children of Vietnamese refugees

Vaage, A. B., Thomsen, P. H., Rousseau, C., Wentzel-Larsen, T., Ta, T. V., & Hauff, E. (2011)

Background
Intergenerational transmission of trauma as a determinant of mental health has been studied in the offspring of Holocaust survivors and combat veterans, and in refugee families. Mainly negative effects on the children are reported, while a few studies also describe resilience and a possible positive transformation process. A longitudinal prospective cohort study of Vietnamese refugees arriving in Norway in 1982 reports a 23 years follow-up, including spouses and children born in Norway, to study the long-term effects of trauma, flight, and exile on the offspring of the refugees.

Objectives of the study:

1. To study the association between the psychological distress of Vietnamese refugee parents and their children after 23 years resettlement.

2. To analyse paternal predictors for their children's mental health.

Methods
Information from one or both parents at arrival in 1982 (T1), at follow-up in 1985 (T2), and 23 years after arrival (T3) was included. The mental health was assessed by the Global Severity Index (GSI) of the self-report Symptom Check List-90-R (SCL-90-R) for parents (n = 88) and older children (age 19-23 yrs, n = 12), while children aged 4-18 (n = 94) were assessed using the Strengths and Difficulties Questionnaire (SDQ).

Results
Thirty percent of the families had one parent with a high psychological distress score ("probable caseness" for a mental disorder), while only 4% of the children aged 10 - 23 years were considered as probable cases. In spite of this, there was an association between probable caseness in children and in fathers at T3. A significant negative paternal predictor for the children's mental health at T3 was the father's PTSD at arrival in Norway, while a positive predictor was the father's participation in a Norwegian network three years after arrival.

Conclusions
Children of refugees cannot be globally considered at risk for mental health problems. However, the preceding PTSD in their fathers may constitute a specific risk for them.

Sleep Disturbances in Family Caregivers: An Overview of the State of the Science

Kim, H. and K. Rose (2011)

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

Små barns behov av en långsiktig trygg bas: en barnpsykologisk kunskapsöversikt

RISHOLM MOTHANDER, P. & BROBERG, A. (2015)

Detta kunskapsunderlag handlar om de yngsta barnens behov i de situationer där
brister i deras omvårdnad kräver särskild samhällelig uppmärksamhet. Rapporten
inleds med en genomgång av anknytningsteorin. Denna används som en
utvecklingspsykologisk referensram för att beskriva barns känslomässiga
utveckling med speciellt fokus på de anknytningsrelationer som skapas under de
första tre till fyra levnadsåren. Människobarnet är vid födseln fysiskt och psykiskt
beroende av den vuxne för sin överlevnad och den eller de föräldrapersoner som
regelbundet tar hand om barnet kommer genom sin omvårdnad att bli barnets
anknytningsperson/er och påverka barnets psykosociala utveckling, både på kort
och på lång sikt.
Barn är programmerade att ta emot omvårdnad, det nyfödda barnet signalerar
sitt behov av att bli omhändertaget, och från 8-9 månader protesterar barnet mot att
skiljas från den som barnet fått erfarenheter av har tillhandahållit omvårdnad. För
barnet är det gynnsamt med minst en, men gärna fler än en, långsiktigt engagerade
föräldrar som med lyhördhet svarar på barnets behov av närhet, tröst och skydd.
Anknytningspersonen bör vara "stor, stark, klok och snäll" för att kunna erbjuda
barnet en trygg bas att utforska världen från och en säker hamn att kunna återvända
till när världen är eller upplevs som farlig. Barn som med hjälp av sin
anknytningsperson lär sig att använda sina egna resurser och lita på andras hjälp
vid behov kan själv reglera sin stress och lättare klara rimliga och åldersrelevanta
utmaningar under uppväxten. En viktig del av anknytningsteorin beskriver små
barns reaktioner på att bli skilda från sin anknytningsperson, där protest, förtvivlan
och losskoppling beskriver de tre reaktionsmönster som kännetecknar barnets
försök att hantera den psykologiska förlusten av trygghet.
En genomgång av den internationella forskningslitteraturen speglar de
variationer som finns i former för barns boende och de situationer där barn inte kan
bo hos sina föräldrar. Vi redogör för förutsättningar och krav som kan ställas när
barn ska övernatta i mer än en omsorgsmiljö, t.ex. hos biologiska föräldrar och
tidigare familjehemsföräldrar. Varje land har sina rättssystem och principer som
styr formerna för samhällsvård av små barn vars liv och hälsa är i fara. Vi redogör
för kunskapen om den långsiktiga psykosociala utvecklingen hos barn på
institution, barn i familje-hem och adopterade barn. Slutsatserna är entydiga, den
mest olämpliga miljön för späda och små barn är att bo på institution (utan sin
förälder), och denna form bör därför inte användas annat än i undantagsfall. De
stora svårigheterna med institutionsvård är de begränsade möjligheterna att erbjuda
långsiktigt, engagerat och stabilt omhändertagande där barnen får möjlighet att
knyta an till en eller ett par specifika personer. Familjehem är den vanligaste
vårdformen i västvärldens kulturer men flera uppföljningar visar att barn i denna
vårdform inte alltid når de goda utvecklingsresultat som barn har rätt till.
Forskningen pekar på brister och poängterar hur denna vårdform kräver stort
engagemang från samhället för att fungera på ett godtagbart sätt. En god
familjehemsvård förutsätter att de sociala myndigheterna ansvarar för att
tillhandahålla utbildning, handledning och långsiktigt stabila förutsättningar så att
de vuxna som ska träda in i de biologiska föräldrarnas ställe och ta emot ett barn i
sin egen familj kan göra det på ett bra sätt. En "triadisk trygg bas", där barn,
familjehem och biologisk familj kan samarbeta är eftersträvansvärt, men kräver
ofta stora insatser och stöd från myndigheterna. Till sist visar adoptionsforskningen
en trend mot alltmer öppna adoptioner, en form som uppfattas positivt av alla
inblandade och som underlättar för barnet att behålla en kontakt med sitt biologiska
ursprung. De öppna adoptionerna har gemensamma drag med den vårdnads-
överflyttning som i Sverige kan föreslås av socialnämnd och prövas i tingsrätt.
Vårdnadsöverflyttning ska alltid övervägas efter det att barnet bott tre år i
samma familjehem, men kan också initieras tidigare. Vissa betydelsefulla
skillnader finns emellertid mellan en öppen adoption och en vårdnadsöverflyttning.
En adoption är, även om den är öppen, definitiv då alla rättsliga relationer mellan
barnet och den biologiska familjen bryts. Denna brytning sker inte vid
vårdnadsöverflyttning, då barnet i dessa fall har kvar umgänges- och arvsrätt.
Varför vårdnadsöverflyttning, som utgår från barnets rätt till fortsatt relation till
sina "psykologiska" föräldrar och som förespråkats i Sverige, används i så
begränsad omfattning bör utredas närmare och de hinder, som försvårar
lagstiftarens intentioner med vårdnadsöverflyttning, bör undanröjas.
I rapportens diskussionsavsnitt behandlas frågan om den bästa formen för akuta
placeringar av små barn, vars liv och hälsa är i omedelbar fara. Vi föreslår att små
barn om möjligt inte ska skiljas från sin förälder och placeras i ett jourfosterhem
för att därefter eventuellt uppleva ytterligare separation och introduceras till en ny
föräldraomgivning. Den biologiska föräldern och barnet bör i stället vistas
tillsammans (såvida inte föräldern är akut farlig för barnet) i form av en gemensam
placering, där föräldern kan få stöd, familjens situation kartläggas och relationen
mellan biologisk förälder och barn observeras under utredningstiden. Om barnet
och föräldern måste skiljas åt ska barnet placeras så att en tät kontakt mellan barn
och förälder kan upprätthållas till dess att slutligt beslut fattats.
I diskussionsavsnittet ger vi också synpunkter på betydelsen av längden på
samhällsvården i förhållande till barns ålder, samt frågor om stöd för kontinuitet
mellan olika personer och miljöer i barnets liv. Hänsyn till barns ålder måste tas i
varje enskilt fall. Barn som varit två av sina första fyra år i ett familjehem har t ex i
de allra flesta fall utvecklat en starkare förankring i familje-hemmet jämfört med
äldre barn som varit där tre av sina tolv år. Yngre barns behov av sina
familjehemsföräldrar kan därför se annorlunda ut än äldres.
I de fall grunden för samhällsvård, i form av förälderns oförmåga att ta hand om
sitt barn, har upphört måste barnens anknytning och behov av omvårdnadsmässig
stabilitet vägas in. I synnerhet små barn måste med tvingande biologisk
nödvändighet rikta sitt anknytningsbehov mot de vuxna som trätt i de biologiska
föräldrarnas ställe. Risken för barnets utveckling, genom att ryckas upp ur den
miljö som barnet rotat sig i och flytta från de familjehems-föräldrar som barnet
upplever som sina "riktiga" föräldrar, måste nogsamt vägas mot de biologiska
föräldrarnas berättigade önskan att återfå sitt barn.
Till sist understryks de specifika hänsyn som måste tas när det gäller barn som
utsatts för allvarlig omsorgssvikt och vars behov av extra trygghet och långsiktig
stabilitet är avgörande för deras fortsatta utveckling. Om socialnämnden beslutar
om familjehemsplacering krävs för att kunna handlägga dessa svåra ärenden: (1)
särskilt välfungerande familjehem (2) en långsiktig planering, (3) en stödjande
organisation för familjehemmet att luta sig mot, (4) särskilt anpassad utbildning
och handledning samt (5) att familjehemmet tillåts fokusera på barnets
välbefinnande och inte belastas med långtgående krav på samarbete med de
biologiska föräldrarna.

Patients' sense of support within the family in the palliative care context: what are the influencing factors?

Milberg A, Wåhlberg R, Krevers B. (2014)

OBJECTIVE: Mutual support within the family is of great importance to maintain
its proper functioning. The study aim, which was based on a family system
approach, was to evaluate which variables are associated with patients' sense of
support within the family in the palliative care context.
METHODS: We recruited 174 adult patients (65% of those eligible) from six
palliative home care units, who had non-curable disease with an expected
short-term survival, such as disseminated cancer or non-malignant diagnosis. The
relationship between the endpoint and individual factors were evaluated in a
stepwise model-building procedure using generalised linear model (ordinal
multinomial distribution and logit link).
RESULTS: The respondents' ratings of their sense of support within the family
ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation
1.06). Patients who less frequently sensed family support experienced more often
stress, worry about their private economy, lower self-efficacy, lower sense of
security with palliative care provided (lower ratings on subscales of care
interaction, mastery and prevailed own identity), more often anxiety, less often
perceived general well-being for closest ones and less often sense of support
from more distant family members. In the model building, three variables were
selected to predict the patients' sense of support within the family.
CONCLUSIONS: The dying patients' sense of support within the family related to
several factors, and these may help the palliative care teams to identify
patients at risk and to alleviate suffering, for example, through supporting the
closest family members.

Patients’ and next-of-kins’ attitudes towards compulsory psychiatric care

Wallsten, Tuula, Östman, Margareta, Sjöberg, Rickard L. &Kjellin, Lars (2008)

The introduction of a new Civil Commitment Act in Sweden in 1992 involved a shift of emphasis from medical to judicial authority. Little is known about general patient attitudes to compulsory care. The aim of the study was to study possible differences in attitudes, before and after the mental health law reform, among involuntarily and voluntarily admitted patients and their next-of-kins towards involuntary psychiatric admission. Samples of 84 committed and 84 voluntarily admitted patients in 1991 and 118 committed and 117 voluntarily admitted patients in 1997–99 were interviewed within 5 days from admission and at discharge, or after 3 weeks of care. Samples of 64 next-of-kins to the committed patients and 69 next-of-kins to the voluntarily admitted patients in 1991, and 73 and 89 next-of-kins, respectively, in 1997–99 were interviewed approximately 1 month after the admission. Few changes in attitudes were found between the two study occasions. A majority of all patients stated that it should be possible to compulsorily admit patients, and a great majority of the patients and the next-of kins stated that decisions regarding compulsory admission should be taken by doctors. Most patients and next-of-kins regarded decisions about involuntary psychiatric care mainly as a medical matter. Strong support for coercion in order to protect the patient and others was found among next-of-kins. The law reform was not reflected in attitudinal differences.

Patterns amongst behavior states, sociocommunicative, and activity variables in educational programs for students with profound and multiple disabilities

Arthur, M. (2004)

Recent investigations into the behavior states of students with profound and multiple disabilities have underlined the importance of better understanding the part that educational variables play in relation to levels of individual alertness and involvement. In the study reported here, 10 students in this population were observed for a full day each and detailed, noncontinuous information was collected on several contextual factors and student behavior states, using an interval recording technique. This paper examines transitional probabilities for observed student behavior states over time and also explores potential relationships between states, communicative conditions and activities taking place in educational settings. These sequential estimates provide evidence of state stability and positive relationships amongst student engagement and active communicative and social learning environments. Implications for practice and further research are discussed.

Social Ecologies an Their Contribution to Resilience

Ungar. M (2012)

More than two decades after Michael Rutter (1987) published his summary of protective processes associated with resilience, researchers continue to report definitional ambiguity in how to define and operationalize positive development under adversity. The problem has been partially the result of a dominant view of resilience as something individuals have, rather than as a process that families, schools,communities and governments facilitate. Because resilience is related to the presence of social risk factors, there is a need for an ecological interpretation of the construct that acknowledges the importance of people's interactions with their environments. The Social Ecology of Resilience provides evidence for this ecological understanding of resilience in ways that help to resolve both definition and measurement problems.

Social networks, ethnicity and public home care utilisation

Litwin, H. (2004)

This article examines the relationships between support networks, ethnicity and the utilisation of formal care services, taking into account background characteristics and functional health status among 3,403 older people in Israel. Data were drawn from a national survey in 1997 of people aged 60 or more years. The outcome variable was the use of publicly-financed personal care or homemaking services. About 15 per cent of the study population made use of such home care. Six informal support network constellations were identified by applying cluster analysis to key criterion variables that reflect the inter-personal milieu. The resultant network types were: community-clan, family-focused, diverse, friend-focused, neighbour-focused, and restricted networks. Binary logistic regression revealed that the use of formal home-care services was significantly associated with a respondent's age, gender, functional level and informal support network type (Nagelkerke R2=0.39). No association was found between home-care utilisation and a respondent's ethnicity (Arab, Jew, and new Russian immigrant), income or education. The results show that publicly-financed formal care services were utilised more frequently by older-old persons, women, functionally impaired individuals and people embedded in the neighbour-focused and restricted networks (and to a lesser degree, in the diverse and friend-focused networks). Neighbour-focused and restricted network types were characterised by fewer informal support resources at their disposal than the other types. Thus, formal home care was sought more often in cases in which the informal sources of support had less capacity to provide ongoing informal care.

Perceptions of the relationship between mental health professionals and family caregivers: has there been any change?

Nicholls, E. and R. Pernice (2009)

A number of international studies have highlighted family caregivers' (FCGs') dissatisfaction with their relationship with mental health professionals (MHPs) when providing care for mentally ill family members. However, few studies have explored the mental health professionals' perspective of this relationship. This study explored both FCGs' and MHPs' perspectives. Semi-structured interviews were conducted with seven FCGs and seven MHPs from two different geographical areas of New Zealand. Thematic analysis of these interviews revealed four distinct MHP themes and five FCG themes. The themes illuminate incongruence between MHPs' intentions to form a positive working relationship with families and the FCGs' mainly negative experiences of this relationship

Perceptions, needs and mourning reactions of bereaved relatives confronted with a sudden unexpected death

Merlevede, E., Spooren, D., Henderick, H., Portzky, G., Buylaert, W., Jannes, C., Calle, P., Van Staey, M., De Rock, C., Smeesters, L., Michem, N., & van Heeringen, K. (2004)

Abstract
Many individuals die suddenly and unexpectedly outside the hospital or in the emergency department (ED). The aim of this study was to determine the perceptions, needs and mourning reactions of their bereaved relatives and to assess the relationship with the cause of death. Data were collected prospectively in the emergency department of a university hospital by means of an interview and a standardised questionnaire. We registered 339 deaths over a period of 10 months, of which 110 met the inclusion criteria for sudden and unexpected death. The study group included 74 relatives of 53 deceased individuals. The majority of relatives were confronted with a traumatic death outside the hospital. Most frequently reported complaints concerned a lack of information and being left with unanswered questions. Psychological problems related to mourning were mainly associated with a traumatic cause of death. The results of this study highlight the specific needs of relatives in case of a sudden death either outside the hospital or in the ED and may serve as a basis for recommendations for improvement of psychological care of individuals who are suddenly bereaved.

Perlas Liv

Pere, Tuula (2019)

Ålder: 6-9 år

Hela familjen står inför nya och stora utmaningar då den allvarligt sjuka Perla får komma hem. Fastän det är jobbigt att sköta lillasyster, vill Jakob delta efter bästa förmåga. Han är väldigt bra på att lugna ner henne, för han kan smeka och sjunga särskilt mjukt. Jakob vill att Perla tas med till skolans viktiga evenemang.– Det stör inte mig fastän de andra aldrig har sett en sådan baby som Perla. Jag kan nog förklara det för dem, säger Jakob. Sommarens värme och dofter omsluter hela familjen, också lilla Perla.

Perpetration patterns and environmental contexts of IPV in Sweden: Relationships with adult mental health

Miller, L. E., Cater, Å. K., Howell, K. H. & Graham-Bermann, S. A. (2014)

Although excellent data exist on the overall prevalence of childhood exposure to intimate partner violence (IPV), there is less information available on the specific patterns of IPV exposure in childhood and how they influence adult mental health. The current study examines 703 Swedish adults who reported exposure to IPV in childhood. Participants were part of a large national study on violence exposure. They provided an extensive history of their exposure to IPV and maltreatment experiences during childhood via electronically administered questionnaires. Mean comparison and multivariate regression methods were employed to assess differences in violence severity by reported perpetration pattern (mother-only, father-only, bidirectional or other), the association between violence severity and environmental context, and the contribution of these characteristics to adult mental health outcomes. Overall, violence perpetrated in public and by fathers was more severe and was related to poorer mental health outcomes in adulthood for child witnesses. These findings provide important insight into possible clinical "flags" for identifying children at high risk for exposure to IPV and abuse in the home.

Personalisation and Carers: Whose rights? Whose benefits

Moran N, Arksey H, Glendinning C, Jones K, Netten A, Rabiee P. (2012)

Increasing numbers of developed welfare states now operate cash-for-care schemes in which service users are offered cash payments in place of traditional social services. Such schemes raise concerns about the extent to which they include and support carers. This paper aims to explore some of these issues through an analysis of a cash-for-care initiative piloted in England in 2005-07: the Individual Budgets (IBs) pilot projects. The paper reports the findings of an evaluation of the impact and outcomes of IBs for carers through analyses of qualitative interviews with IB lead officers, carers' lead officers and carers of IB holders; and analyses of structured outcome interviews with carers of IB holders and carers of people in receipt of conventional social care services. The evaluation found that, despite their primary aim of increasing choice and control for the service user, IBs had a positive impact on carers of IB holders. The findings are important in that they have implications for the widespread roll-out of Personal Budgets in England and may also provide wider valuable lessons nationally and internationally about the tensions between policies to support carers and policies aimed at promoting choice and control by disabled and older people.

Person-centered care—ready for prime time

Ekman, I., Swedberg, K., Taft, C., (2011)

Abstract
Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC.

Personer med funktionsnedsättning – vård och omsorg den 1 april

Socialstyrelsen (2012)

Statistiken i den här rapporten baseras på personnummerbaserade uppgifter som kommunerna lämnat in per den 1 april samt för april månad 2012 och visar att:

Drygt 21 000 personer med funktionsnedsättning bodde permanent i särskilt boende eller var beviljade hemtjänst i ordinärt boende. Det är lika många som i april 2011.
Drygt 16 600 personer med funktionsnedsättning var beviljade hemtjänst i ordinärt boende. Cirka 200 personer färre än i april 2011.
Cirka 31 procent av personerna mellan 0-64 år med biståndsbeslut om hemtjänst i ordinärt boende var beviljade mellan 1 och 9 hemtjänsttimmar per månad. Cirka 10 procent var beviljade 80 timmar eller mer. Det är samma fördelning som vid tidigare mättidpunkter.
Cirka 4 400 personer i åldern 0-64 med funktionsnedsättning bodde permanent i särskilt boende, ungefär 150 fler än i april 2011.
Omkring 18 200 personer i åldern 0-64 med funktionsnedsättning hade ett biståndsbeslut om boendestöd. Det är 1 700 personer fler än i april 2011 och 3 800 fler än i november 2010.
Cirka 1 100 personer i åldern 0-64 med funktionsnedsättning hade biståndsbeslut om korttidsvård/ korttidsboende, 4 300 om kontaktperson/kontaktfamilj och 5 900 om dagverksamhet.
Ungefär 28 800 personer i åldern 0-64 år med funktionsnedsättning någon gång under oktober månad mottagare av hälso- och sjukvård som kommunen ansvarade för. Nästan hälften av dessa var kvinnor, totalt var det 700 fler än i april 2011.

Personer med funktionsnedsättning – vård och omsorg den 1 oktober 2012

Socialstyrelsen (2013)

Statistiken i den här rapporten baseras på personnummerbaserade uppgifter som kommunerna lämnat in per den 1 oktober samt för oktober månad 2012 och visar att:

Drygt 20 500 personer med funktionsnedsättning bodde permanent i särskilt boende eller var beviljade hemtjänst i ordinärt boende. Det är något färre än i oktober 2011.
Drygt 16 400 personer med funktionsnedsättning var beviljade hemtjänst i ordinärt boende. Cirka 200 personer färre än i oktober 2011.
Cirka 31 procent av personerna mellan 0-64 år med biståndsbeslut om hemtjänst i ordinärt boende var beviljade mellan 1 och 9 hemtjänsttimmar per månad. Cirka 10 procent var beviljade 80 timmar eller mer. Det är samma fördelning som vid tidigare mättidpunkter.
Drygt 4 100 personer i åldern 0-64 med funktionsnedsättning bodde permanent i särskilt boende, ungefär 200 färre än i oktober 2011.
Cirka 18 300 personer i åldern 0-64 med funktionsnedsättning hade ett biståndsbeslut om boendestöd. Det är 800 personer fler än i oktober 2011.
Cirka 1 200 personer i åldern 0-64 med funktionsnedsättning hade biståndsbeslut om korttidsvård/korttidsboende, 4 300 om kontaktperson/kontaktfamilj och 5 700 om dagverksamhet.
Ungefär 29 400 personer i åldern 0-64 år med funktionsnedsättning någon gång under oktober månad mottagare av hälso- och sjukvård som kommunen ansvarade för. Nästan hälften av dessa var kvinnor, totalt var det 1 000 fler än i oktober 2011.

Personkrets 3 och personlig assistans för barn enligt LSS. FoU-Rapport, 69:2011.

Nilsson, C., & Holmström, M. (2011)

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

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

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

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

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

Av Christina Nilsson, Mona Holmström, Marianne Forsgärde handledare

Socialutskottets betänkande Samordning av stöd till barn och unga med funktionsnedsättning

Betänkande (2011)

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

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

Socio-communicative perspectives on research and evidence-based practice in the education of students with profound and multiple disabilities

Arthur-Kelly M, Bochner S, Center Y, Mok M. (2007)

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

Socio-Communicative Variables and Behavior States in Students with Profound and Multiple Disabilities: Descriptive Data from School Settings

Arthur, M. (2003)

Assessment of student behavior states and contextual variables has emerged as a promising area for research and practice in the education of individuals with profound and multiple disabilities. This paper presents findings of an observational study of ten school-aged students in this population, with particular attention being paid to social and communicative variables operating in educational settings. Comparisons are made with other published studies of behavior state assessment and socio-communicative processes observed in special education programs. Implications of these findings are discussed in relation to extant literature and avenues for further investigation in this field. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Socio-demographic determinants of caregiving in older adults of low- and middle-income countries

Hosseinpoor AR, Bergen N, Chatterji S. (2013)

Background: caregivers make substantial contributions to health and social systems, but many low-resource settings lack reliable data about the determinants and experiences of older adults who are caregivers. Objective: we identified socio-demographic determinants of caregiving among older adults of low- and middle-income countries, and compared determinants of specific categories of caregiving tasks. Subjects: a total of 34,289 adults aged 60 or older from a pooled sample of 48 low- and middle-income countries. Methods: prevalence values for caregiving and categories of caregiving tasks were calculated according to socio-demographic variables, for the overall sample and for each study country. Multivariate analyses assessed associations between caregiving variables and socio-demographic determinants, adjusting for health score and country of residence. Results: overall, 15% of older adults provided care, with varying prevalence according to study country. The prevalence of caregiving was significantly higher in women, and among adults aged 60-69, the college educated, the wealthy, those living in a household of two people and urban residents. No prevalence differences were reported for the employment status or health score. The odds of caregiving were greater for women, younger age groups and higher education levels, controlling for confounders. The likelihood of participating in specific categories of caregiving differed by sex, age, marital status, education, employment status and household size, but was not associated with household economic status, area of residence or health score.

Sofia vuxen med sitt MBD

Tikkanen, Märta (1998)

I Sofias egen bok, som kom ut för 15 år sedan, beskrev Märta Tikkanen hur det är att ha och vara ett mbd-barn. Nu är hennes dotter vuxen, och som alla med mbd (numera oftast kallat damp, adhd eller add) har hon problem med impulskontroll, uppmärksamhet och i samspelet med andra människor. Det påverkar alla delar av livet: utbildning, yrkesval, boende, samlevnad. Att vara vuxen och ha mbd är svårt, men som Märta Tikkanen skriver mbd kan också stå för Mycket Bra och Duktig.
Det finns ytterligt lite skrivet om vuxna med mbd, och därför har Märta Tikkanen velat skildra hur livet kan gestalta sig, såväl ur Sofias synvinkel som ur Märtas egen som närstående.
Märta Tikkanen är mest känd för sin diktsamling Århundradets kärlekssaga (1978) som hittills tryckts i 130 000 exemplar enbart i Sverige.

Some second generation effects of survival of the Nazi persecution

Sigal, J. J., Silver, D., Rakoff, V., & Ellin, B. (1973)

Nazi concentration camp survivors are known to continue to suffer the adverse physical and psychological effects of their internment. This is a study of the effects on their children. A clinical sample of mid-teenage children of survivors was found to have more behavioral and other disturbances and less adequate coping behavior than did a clinical control group. Parental preoccupation is suggested as a contributing factor.

Sorg hos barn: En handledning för vuxna

Atle Dyregrov (2007)

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

Sorg, saknad, sammanhang Böcker om barn och ungdomar i svåra livssituationer

Gunilla brink, Anna Lindberg (2013)

I Sorg - Saknad - Sammanhang har Gunilla Brinck, bibliotekskonsulent vid Länsbiblioteket i Västerbotten, och Anna Lindberg, bibliotekarie på sjukhusbiblioteket vid Norrlands Universitetssjukhus Umeå, samlat och kommenterat ca 300 böcker, huvuddelen skönlitteratur, om barn och ungdomar i svåra livssituationer. Kati Falk, med 25 års erfarenhet av barnpsykiatri, de senaste 10 åren på BUP:s Kris- och Konsultteam i Lund, visar i en inledande artikel på samtalets betydelsefulla roll för att hjälpa barn att hantera det "svåra i livet".
Böckerna är grupperade under tre huvudrubriker:
1. Barn som anhöriga/närstående Förälders/syskons plötsliga död, Sjukdom som leder till döden, Att leva med sjukdom, Självmord m fl,
2. Barn och våld
3. Barn i sjukdom och kris med underrubriker som Att vistas på sjukhus/besöka vårdcentral, Att vara allvarligt sjuk, Psykisk sjukdom m fl.

Speech, language and aided communication: connections and questions in a developmental context

Smith, M. (2006)

PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.

Speech, language and aided communication: connections and questions in a developmental context

Smith, M. (2006)

Abstract
PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.

Spending my time: Time use and meaningfulness in daily occupations as perceived by people with persistent mental illness

Leufstadius, Cristel (2008)

Akademisk avhandling

Engagement in daily occupations, especially those perceived as meaningful, is essential for health and well-being. According to evaluation reports, many individuals with persistent mental illness seem to lack meaningful everyday occupations. The aim of this thesis was to investigate possible relationships between occupation, operationalised as time use and daily rhythm in daily activities, among individuals with persistent mental illness and relationships to different aspects of well-being, and identify sociodemographic and clinical risk factors for any imbalance in daily activities. A further aim was to investigate perceived meaningfulness in daily occupations, with a specific focus on work. The thesis is based on four studies. Studies I-III are based on a randomised sample of 103 participants from a psychiatric outpatient unit, and Study IV included 12 participants that were interviewed about perceived meaningfulness in their work. The results showed that spending much time in activities in everyday life, especially in work and other productive activities, and having a beneficial daily rhythm were associated with several factors of well-being. Spending much time asleep, especially at daytime, was associated with worse well-being. Among the risk factors for imbalance in daily activities was having high levels of general symptoms, which explained most of the risk of spending short periods in work/education, having an abnormal time asleep and an adverse daily rhythm. Further, having a diagnosis of schizophrenia meant an increased risk of spending little time in daily activities.

Being occupied per se, as well as having organised activities and routines, was perceived as meaningful and generated a feeling of occupational balance. Further, social life and a feeling of being needed by others was the aspect of meaningfulness most frequently reported in everyday life. Other aspects of meaningfulness in daily occupations were enjoyment, a sense of achievement and doing occupations to take care of oneself to maintain health. Work, in terms of employment, was perceived as meaningful since it had certain unique characteristics, gave structure to the day, a feeling of normality and acceptance, a balanced everyday life, and increased well-being. However, it was important that the demands at work and the individuals' interests and skills were well matched. A tentative model was suggested, integrating these aspects of meaningfulness in work.

Spindeln i nätet. En kartläggning av demenssjuksköterskor i Stockholms län. 2009:3

Meinow, B. (2009)

I Stockholms län finns (hösten 2008) en demenssjuksköterska i tio av länets
kommuner, och demensvårdsutvecklare med delvis liknande funktioner i
ytterligare två. De har bildat ett regionalt nätverk och träffas regelbundet. Sin
nuvarande tjänst har de haft mellan några månader till 11 år. De har alla en lång
erfarenhet av arbete inom äldrevården, och flera av dem har skaffat sig olika
former av vidareutbildning inom demensområdet. Hälften har arbetat som
sjuksköterska i särskilt boende. De har vanligen blivit ombedda att söka tjänsten
utifrån sitt tidigare kända engagemang, och i några fall är de själva initiativtagare
till att tjänsten finns. Fyra av demenssjukskötersketjänsterna och de båda
demensvårdsutvecklartjänsterna finansieras med nationella stimulansmedel och är
således projekttjänster.
Intervjuerna visar att arbetsuppgifterna varierar mellan kommunerna. Skillnader
finns i huvudsak vad gäller graden av samarbete med andra aktörer inom
landstingets äldrevård och den kommunala äldreomsorgen och huruvida tonvikten
i arbetet lutar mot anhörigstöd eller utbildningsfrågor.
En majoritet av demenssjuksköterskorna beskriver sin funktion som "spindeln i
nätet", dvs. de har en övergripande funktion i kommunen som sakkunnig inom
demensfrågor, både för personer med minnesproblem och deras närstående,
personal inom äldreomsorg och sjukvård, kommunledningen och allmänheten.
Information, råd och stöd till personer med minnessvårigheter och deras
närstående framställs som en central uppgift. Där funktionen är bäst etablerad kan
demenssjuksköterskan komma in i ett tidigt stadium redan före diagnos. Det kan
vara personen själv som upplever att han eller hon har minnessvårigheter som tar
kontakt, en närstående eller någon inom vården eller äldreomsorgen.
Demenssjuksköterskan initierar minnesutredningar, hjälper personen och dennes
närstående att hitta och få den hjälp de behöver inom sjukvård och äldreomsorg,
förmedlar kontakter och motiverar att ta emot hjälpen. Stödinsatser som
demenssjuksköterskan informerar om och i vissa fall ansvarar för omfattar t.ex.
dagvård, anhöriggrupper, avlösarservice och öppna verksamheter med kafé och
information. Vägledning i hur man som frisk anhörig bemöter en person med
demenssjukdom visar sig vara en kärnfråga i enskilda stödsamtal med närstående.
De flesta demenssjuksköterskor beskriver ett väl fungerande samarbete med en
eller flera aktörer inom äldreomsorg och sjukvård, vanligast biståndshandläggare
och anhörigkonsulenter. I några kommuner har demenssjuksköterskan och
minnesmottagningen vid den geriatriska kliniken utvecklat rutiner för samarbete
och informationsöverföring. Däremot saknas i de flesta kommuner ett
kontinuerligt samarbete med husläkarverksamheterna.
Flertalet demenssjuksköterskor och de två demensvårdsutvecklarna arbetar med
utbildning för personal inom kommunens äldreomsorg. Medlen från
Kompetensstegen och stimulansmedel har möjliggjort utbildningssatsningar.
Demenssjuksköterskorna kan också fungera som handledare och konsulter vid
2
speciella problem. I några kommuner har man satsat på att utbilda i olika metoder,
som reminiscens och validation och bedömningsinstrumentet GBS.
Utöver sin funktion som sakkunnig i demensfrågor för kommunens invånare samt
personal inom sjukvård och äldreomsorg har samtliga demenssjuksköterskor
också uppdraget att informera allmänheten om demenssjukdomar samt om sin
egen roll i kommen, t.ex. genom kontakt med frivilligorganisationer.
Att följa utvecklingen i demensvården är en central del av funktionen som
sakkunnig i demensfrågor. Demenssjuksköterskorna har därmed också en viktig
roll i utvecklingsarbetet i den egna kommunen. Intervjuerna visar dock på olika
erfarenheter när det gäller att nå fram med sina erfarenheter och idéer till den
kommunala ledningen. Delvis synes detta hänga samman med var i
organisationen de finns. Ju mer centralt, desto större är möjligheten att ha en bra
dialog med kommunledningen.
Ett stort problem som demenssjuksköterskorna ser inom demensvården såväl som
i sin egen yrkesroll är bristen på samverkan mellan olika aktörer, särskilt mellan
de två huvudmännen. En annan svårighet är alltjämt på sina håll att få
husläkarverksamheter att genomföra demensutredningar.
Flera demenssjuksköterskor lyfter fram att det behövs mer utbildning kring olika
demenssjukdomar och lämpliga förhållningssätt på alla nivåer inom sjukvård och
äldreomsorg. Å andra sidan påpekas också att bemanningen inom den kommunala
äldreomsorgen måste ses över så att personalen har möjlighet att omsätta sina
kunskaper i praktiken.
När det gäller utvecklingen av demensvården förespråkar samtliga
demenssjuksköterskor att det behövs personer på husläkarverksamheterna att
samarbeta med, som tillsammans med demenssjuksköterskan kan vara en
"paraplycentral". I sin framtidsvision ser de, med inspiration från exempelvis
Kalmar läns landsting, att det borde inrättas en funktion som demenssjuksköterska
vid husläkarverksamheterna, med särskilt ansvar för demensutredningar och
samverkan med minnesmottagning och kommun. I kommunen hoppas flera
demenssjuksköterskor på utvecklingen av hemtjänstteam som enbart arbetar med
personer med demenssjukdom. Till stöd för dessa funktioner ser de en utveckling
där demenssjuksköterskan tillsammans med fler professioner bildar ett
demensteam som är gemensamt för de båda huvudmännen.
Sammanfattningsvis visar intervjuerna att funktionen demenssjuksköterska är
mångfacetterad och riktar sig mot många olika aktörer. Det varierar dock mellan
kommunerna i vilken utsträckning man i praktiken har möjlighet att vara
"spindeln i nätet". En slutsats är att samarbete med alla aktörer inom demensvården
är en central förutsättning för att demenssjuksköterskan ska kunna bistå
med råd och stöd till personer med minnesproblem och deras närstående redan i
ett tidigt stadium – och därmed förbättra möjligheten till en obruten vårdkedja. Ju
mer heltäckande samarbetet med sjukvården och äldreomsorgen är desto bättre
förutsättningar finns också för demenssjuksköterskan att föra ut kunskap och
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information till personal. Rutinerna för kontakt och samarbete med t.ex.
husläkarverksamheter, hemtjänst och biståndshandläggare behöver vara så säkra,
tydliga och väl förankrade hos alla parter att de även fungerar i verksamheter med
hög personalomsättning.
En central position i kommunstrukturen och en direkt dialog med
kommunledningen är viktiga förutsättningar för att kommunen ska kunna dra
nytta av demenssjuksköterskans kunskaper i arbetet att utveckla demensvården.
I synnerhet i större kommuner är demenssjuksköterskan ofta tvungen att prioritera
vissa arbetsuppgifter. Ofta lägger man då tonvikten antingen på anhörigstöd eller
på sin utbildnings- och rådgivningsfunktion för personal inom äldreomsorgen. I
en kommun har lösningen varit att demenssjuksköterskan fungerar som en
projektledare och arbetar i ett team om fyra personer som specialiserat sig på olika
uppgifter såsom anhörigstöd, utbildning och utvecklingsarbete. En annan tänkbar
lösning är att flera demenssjuksköterskor specialiserar sig på olika uppgifter.

Spousal care-giving arrangements in Europe. The role of gender, socio-economic status and the welfare state

Ariane Bertogg, Susanne Strauss (2020)

Abstract
Spouses (and partners) are the most important source of care in old age. Informal care for frail spouses is provided by both sexes and across all socio-economic backgrounds and welfare policy contexts. There are, however, interesting differences as to whether spouses care alone, receive informal support from other family members or formal support from professional helpers, or outsource the care of their spouse completely. The present article contributes to the literature by differentiating between solo spousal care-giving and shared or outsourced care-giving arrangements, as well as between formal and informal care support. Moreover, we show how care-giving arrangements vary with gender, socio-economic status and welfare policy. Adding to previous research, we compare 17 countries and their expenditures on two elder-care schemes: Cash-for-Care and Care-in-Kind. The empirical analyses draw on the most recent wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) data from 2015. Our results show that men have a higher propensity to share care-giving than women, albeit only with informal supporters. As expected, welfare policy plays a role insofar as higher expenditure on Cash-for-Care schemes encourage informally outsourced care-giving arrangements, whereas Care-in-Kind reduce the likelihood for informally shared or outsourced care-giving arrangements. Moreover, the influence of these welfare policy measures differs between individuals of different socio-economic status but not between men and women.

Staff attitudes toward family involvement I residential treatment centers for children

Baker, Bruce, Heller, Tracy, Blacher, Jan & Pfeiffer, Steven (1995)

OBJECTIVES:
The goals of this study were to determine the extent of staff members' support for family involvement in residential treatment centers for children, to examine staff members' beliefs about families and the consequences of their involvement, and to examine the relationship between staff members' support of family involvement and their characteristics, experiences, and beliefs.
METHODS:
A total of 267 staff members at three residential treatment centers for children with psychiatric disorders or mental retardation or both responded to a survey about their experiences with families, beliefs about families, and support for family involvement.
RESULTS:
Staff members were very supportive of greater family involvement, although they showed more support for families in the role of service recipients than as decision makers. However, staff members did not believe in family reunification as a goal for the majority of children served. The strongest predictors of staff support for family involvement were positive general beliefs about clients' families, the perception that family involvement was advantageous, and the endorsement of fewer reasons to discourage family involvement.
CONCLUSIONS:
Residential programs seeking to create a more receptive climate for families should help staff members establish positive attitudes about the families they serve and about families' potential role in successful treatment

Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy

Ångström-Brännström, Charlotte; Lindh, Viveca; Nyholm, Tufve; Lindh, Jack; Engvall, Gunn (2019)

Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. Results: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Stages of change in psychotherapy: A follow-up report

McConnaughy EA, DiClemente CC, Prochaska JO, Velicer WF. (1989)

327 adult outpatients (aged 18–62 yrs) completed the Stages of Change (SOC) Scales (E. A. McConnaughy et al; see record 1984-11195-001), the Millon Clinical Multiaxial Inventory, and a symptom checklist battery during intake. Results confirm the McConnaughy et al findings that the SOC Scales provide a reliable method of measuring SOC in psychotherapy. Four distinct stages (precontemplation, contemplation, action, and maintenance) and 8 stage profiles emerged. Despite differences between degree of psychopathology in the 2 studies' populations, the SOC emerged as a reliable phenomenon for clients entering therapy. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Standing guard - Being a relative to a hospitalised, elderly person

Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I. (2006)

Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.

Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology

Standing guard - Being a relative to a hospitalised, elderly person

Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I. (2006)

Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.

Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology

Statistik om boendeinsatser och anhörigstöd 2017

Socialstyrelsen (2018)

Statistiken visar att antalet personer med boendeinsatser fortsätter att öka. Ökningen är 11 procent jämfört med 2016. Det finns regionala skillnader i vilken omfattning kommunerna ger boendeinsatser. I Västmanland får åtta gånger fler boendeinsatser jämfört med i Blekinge.

Statistik om boendeinsatser och anhörigstöd 2019

Socialstyrelsen (2020)

Efter en längre tids ökning av antalet personer som har fått boendeinsatser
av socialtjänsten så har det skett en stabilisering de senaste åren. Befolkningsmässigt större kommuner gav fler insatser per capita, jämfört med
mindre.

Stepped care in psychological therapies: access, effectiveness and efficiency. Narrative literature review.

Bower, P., & Gilbody, S. (2012)

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

Stereotypes about caregiving and lessons from the Swedish panorama of care

Jegermalm, M., & Sundström, G. (2015)

This article analyzes the panorama of care provision in Sweden from the informal carers' perspective. We consider informal care, publicly financed services, for-profit agencies and voluntary organizations, using a survey conducted in 2009. Most cared-for persons with minor needs living in a separate household are helped also by others, but only a tenth use public services or other providers. About half of cared-for persons with major needs living in a separate household receive care also from other informal carers as well as public services. Only 1 in 10 of them relied on no one else beyond the carer interviewed. Among intra household carers—a minority of all persons cared for—it was common that the carer was alone in his/her commitment, without any contributions from public services or others. For the large majority of informal carers it is not a solitary undertaking as the commitment is often shared with family members and others and/or public services. The results suggest that ideal types about complementarity and substitution may understate the complex interplay between informal care and the public services (and potential other providers). The findings may suggest a need for more empirical research about 'Care Cultures' and expose simplistic representations of welfare societies; informal care plays a major—and increasing—role also in Sweden, a country with extensive public services.

Denna artikel analyserar omsorgspanoramat i Sverige från de informella hjälp- och omsorgsgivarnas perspektiv. Vi beaktar dem, offentligt finansierad service, marknadsbaserad omsorg och frivilliga organisationer, med data från en survey år 2009. De som hade ett mindre behov av hjälp och som inte sammanbor med den informelle hjälpgivaren - intervjupersonen - får ofta ytterligare hjälp från någon annan, men bara en tiondel använder offentligt finansierade tjänster. Ungefär hälften av de som hade ett omfattande omsorgsbehov fick, utöver informell omsorg, hjälp från den offentliga omsorgen. Tio procent fick hjälp endast från den intervjuade omsorgsgivaren. Omsorgsgivare för någon i det egna hushållet var ofta ensamma i sitt åtagande som omsorgsgivare, utan ytterligare hjälp från någon annan, men de utgör en minoritet. För de flesta informella omsorgsgivare är det inte ett ensamt åtagande, utan delas ofta med andra närstående och/eller offentlig service och omsorg. Resultaten tyder på att idealmodeller om komplementaritet och substitution mellan olika omsorgsaktörer underskattar det komplexa samspelet mellan informell och offentlig omsorg (och eventuella andra aktörer). Studien visar att det behövs mer empirisk forskning kring 'omsorgskulturer' och förenklade modeller av välfärdssamhällen. Informell omsorg spelar en stor - och växande - roll även i Sverige, ett land med omfattande offentlig omsorg.

Stereotypes, parents with intellectual disability and child protection

McConnell, D., & Llewellyn, G. (2002)

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

Stigma by association

Östman, Margareta & Kjellin, Lars (2002)

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

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

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

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

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

Stigma by association - Psychological factors in relatives of people with mental illness

Östman, M., & Kjellin, K. (2002)

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

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

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

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

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

Stop to Listen: Findings from the ACT Young Carers Research Project

Moore, T. (2005)

This research project, funded by the ACT Department of Disability, Housing and
Community Services through the Carers Recognition Grants Program, sought to discover
more about the lived experiences, needs and goals of young carers in the ACT in an
attempt to identify more responsive and accessible service delivery.
For the purposes of this research report, young carers were defined as:
children and young people under the age of 18 who care for a family member
with an illness or disability, or a drug or alcohol or mental health issue.
It has been shown that caring can be a positive experience for children and young people
when they receive adequate levels of support but that when unsupported, young carers
can experience significant physical, emotional, social, educational, and financial hardship.
It is discomforting, therefore, to find that most research has shown that for a range of
political and practical reasons, many young carers and their families are sustained in
positions of significant disadvantage and suffer on without the supports and services that
they both need and deserve.
While there has been considerable discussion about the service needs and experiences of
carers, generally, there has been little research focusing on the specific needs of young
carers and their access to appropriate, responsive and quality services.
This has been for a number of reasons. Firstly, viewed primarily as incapable, children
and young people's roles as social citizens are discredited, which leads to a situation
where communities either disbelieve or problematise their care responsibilities and fail to
afford them the support they need. Secondly, afraid of stigma, inappropriate intervention
or shame, many families have felt compelled to hide young caring from the eyes of the
community. Thirdly, young caring raises a moral and economic tension – do we condone
young caring (including its negative impacts) and save the community significant expense
or do we prohibit it and further problematise those who assume such roles?
This study attempted to navigate its way through this potential minefield by
acknowledging that young caring is a natural, potentially life-affirming and skilldeveloping
experience and by seeking out children and young people's own reflections on
their roles and how they, themselves, see caring impacting on their lives.

Storasyster, lillebror och andra platser i syskonskaran

Martensen-Larsen, Oluf & Sørrig, Kirsten (2004)

Varför blir man den man blir? Vår plats i syskonskaran har stor betydelse för hur vi kommer att bli, vem vi förälskar oss i, med vem vi kommer att leva lyckligt eller olyckligt vilken utbildning och vilket arbete vi får och hur vår levnadsbana formas. Tidigare har boken utgivits med titeln Familjemönster och personlighet och sålt i över tjugotusen exemplar.

De intressanta teorier som läggs fram här bygger på Oluf Martensen-Larsens kartläggning av femtontusen svenskars och danskars släktförhållanden. Vi kommer hela livet att alltid vara starkt präglade av vår familjebakgrund, om vi har enbart bröder eller en bara systrar, om vi är äldst, yngst eller kommer i mitten, om vi är inklämda och har fått alltför liten tid och plats eller om vi är födda med flera års avstånd till yngre och äldre syskon.

Oluf Martensen-Larsens forskning visar också hur våra liv påverkas av våra förfäders plats i syskonskaran. Med hjälp av speciella släktscheman kan man kartlägga sitt familjemönster och på så vis få en djupare och mer nyanserad förståelse för varför man blir den man blir.

Strategi för att stärka barnets rättigheter i Sverige

Regeringskansliet (2011)

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

Strenghtening effective parenting practices over the long term: effects of a preventive intervention for parentally bereaved families

Hagan, M.J., Tein, J., Sandler, I.N., Wolchik, S.A., Ayers, T.S. & Luecken, L.J. (2012)

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

Strengthening prospects for safe and lasting family reunification: can a Family Drug and Alcohol Court make a contribution?

Harwin J, Alrouh B, Ryan M, Tunnard J. (2013)

This article examines the contribution of the first Family Drug and Alcohol Court (FDAC) within care proceedings in England and Wales. It asks what FDAC can contribute to family reunification amid concerns about the safety and sustainability of return home and significant changes in care proceedings under the Children and Families Bill of 2013. Features of FDAC as a problem-solving court are outlined and findings of an independent evaluation are presented to consider FDAC's contribution to safe return home at the end of the care proceedings. The likely impact of the Children and Families Bill of 2013 on FDAC's reunification objectives and the rationale for an FDAC aftercare service are discussed. The article concludes that FDAC has the potential to play a useful role in promoting safe reunification at the end of care proceedings. The Children and Families Bill of 2013 creates both opportunities and challenges to the FDAC model in respect of its approach to enhance safe reunification prospects, and adaptations will be necessary. There is a strong case to develop an FDAC aftercare service to help promote lasting reunification and safe and committed parenting.

Keywords:: FDAC, problem-solving courts, family reunification, substance misuse, care proceedings, Children and Families Bill 2013

Perspektiv på en skola för alla.

Brodin J, Lindstrand P. (2010)

Perspektiv på en skola för alla
Frågan om en skola för alla eller inkluderande undervisning väcker många känslor och tankar. Vad betyder egentligen en skola för alla och hur förhåller vi oss till den? Är inklusion bara ett politiskt, socialt och ideologiskt mål eller betyder det någonting mer? I denna reviderade upplaga presenterar författarna nya forskningsrön om inkludering.

Pharmacotherapy for parents with attention-deficit hyperactivity disorder (ADHD): Impact on maternal ADHD and parenting

Chronis-Tuscano, A., & Stein, M. A. (2012)

Given the high heritability of the disorder, attention-deficit hyperactivity disorder (ADHD) is common among parents of children with ADHD. Parental ADHD is associated with maladaptive parenting, negative parent-child interaction patterns and a diminished response to behavioural parent training. We describe our previous research demonstrating that stimulant medications for mothers with ADHD are associated with reductions in maternal ADHD symptoms. Although limited beneficial effects on self-reported parenting were also found in our study, the impact of ADHD medications on functional outcomes related to parenting and family interactions may not be sufficient for many families. Many questions remain with regard to how best to treat multiplex ADHD families in which a parent and child have ADHD. In particular, future studies are needed: (1) to evaluate how best to sequence pharmacotherapy, psychosocial treatment for adult ADHD and behavioural parenting interventions; (2) to determine the best approach to maintaining treatment effects over the long term for both parents and children; and (3) to identify individual predictors of treatment response.

Phase I evaluation of the television assisted prompting system to increase completion of home exercises among stroke survivors

Lemoncello R, Sohlberg MM, Fickas S, Albin R, Harn BE. (2011)

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

Physiology and neurobiology of stress and adaptation: central role of the brain

McEwan, B.S. (2007)

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

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pilot evaluation of a group therapy program for children bereaved by suicide

Daigle, M.S., & Labelle, R. J. (2012)

Abstract
BACKGROUND:
Thousands of children are bereaved each year by suicide, yet there exists very little literature specifically on the psychological care, programs, and interventions available to help them.
AIMS:
(1) To build and validate theoretical models for the Group Therapy Program for Children Bereaved by Suicide (PCBS); (2) to test these models in a preliminary evaluation.
METHODS:
In the first part, we built theoretical models, which were then validated by scientists and clinicians. In the second part, the sessions of the PCBS were observed and rated. The participating children were tested pre- and postprogram.
RESULTS:
Positive changes were observed in the participating children in terms of basic safety, realistic understanding and useful knowledge, inappropriate behaviors, physical and psychological symptoms, child-parent and child-child communication, capacity for social and affective reinvestment, actualization of new models of self and the world, self-esteem, awareness and use of tools, cognitive, verbal, written and drawing abilities, cognitive dissonance, ambivalence, antagonism, and isolation.
CONCLUSIONS:
The changes reported in the bereaved children show that the PCBS has some efficacy.

Pilot trial of a disclosure intervention for HIV+ mothers: the TRACK program

Murphy DA, Armistead L, Marelich WD, Payne DL, Herbeck DM. (2011)

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

Pilot trial of a disclosure intervention for HIV+ Mothers: The TRACK program

Murphy, D.A., Armistead, L., Marelich, W.D., Payne, D.L., & Herbeck, D.M. (2011)

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

Placing a spouse in a care home for older people : (re)-constructing roles and relationships

Sandberg, J. (2001)

This thesis explores the process of placing a spouse in a care home for older people from the perspectives of the key actors involved. Due to the lack of previous studies in this area in Sweden and the desire to generate new insights that have the potential to inform practice developments a grounded theory methodology was adopted.Data were collected using semi-structured interviews (70 in total) with spouses, adult children, community based staff and staff in care homes. Analyses of these data suggested that placement is best interpreted as a temporal experience comprising four stages: making the decision, making the move, adjusting to the move and reorientation. Each of the key actors offered differing insights into the way that the process as a whole was experienced with it emerging that in the initial two phases the primacy focus was on the practical and instrumental aspects of the move, with the emotional consequences being largely overlooked. This is a key issue as spouses were usually unprepared for the sense of separation and loss that the placement caused. Subsequently, spouses placed particular importance on maintaining their sense of involvement with their partner by a variety of 'keeping' activities. However, children and staff in care homes shared varying degrees of 'awareness' which influenced the way that relationships were forged.Based on a synthesis of the data the core category and basic social process that emerged was termed '(re)-constructing roles and relationships'. This highlights the subtle and dynamic way that placement unfolds and reinforces the importance of understanding the process from multiple perspectives. In addition to providing new theoretical insights the thesis identifies a number of ways in which the placement process could be improved and suggests the need for more open and explicit discussion of a number of aspects, particularly the ways in which expectations of roles and relationships change over time. Thls is essential if spouses are to be better prepared and supported both for the sense of separation from their partner and for the need to integrate into the care home setting.

Planeringsinstrument för anhörigstöd. Artikelnr 2005-123-32

Socialstyrelsen (2005)

Detta arbete har syftat till att utveckla och pröva ett instrument för planering, uppföljning och utvärdering av stöd till anhörigvårdare. Arbetet har genomförts i Sverige och England och bygger på tidigare forskning avseende anhörigstöd, brukarmedverkan och partnerskap vid ÄldreVäst Sjuhärad, Högskolan i Borås och Universitetet i Sheffield. Instrumentet benämns COAT (Carers´ Outcome Agreement Tool).

Det färdiga instrumentet består av fyra frågeformulär och baseras på områden identifierade som viktiga av anhöriga som vårdar en närstående. Varje formulär innehåller ett antal påståenden som den anhöriga i diskussion med den som svarar för planeringen får möjlighet att värdera. Till varje område hör en stödplan för planering av åtgärder, uppföljning och utvärdering av den överenskomna hjälpen. En användarguide som vänder sig till de anhöriga och en manual som vänder sig till vård- och omsorgspersonalen har utarbetats.

Omfattande konsultationer i form av fokusgrupper med anhöriga och vård- och omsorgspersonal har använts för att arbeta fram instrumentet. Instrumentet har prövats i tre svenska kommuner, Göteborg, Ulricehamn och Härnösand, av vård- och omsorgspersonal med erfarenhet av anhörigstöd. Efter varje samtal med anhöriga dokumenterades hur instrumentet hade fungerat och hur anhöriga och de själva upplevt samtalet samt förslag på förbättringar. Uppföljande telefonintervjuer genomfördes med de anhöriga och fokusgruppsintervjuer genomfördes med vård- och omsorgspersonalen.

Testarbetet visade att majoriteten av anhörigvårdarna upplevde hembesöket och möjligheten att få tala om sin situation som mycket positivt. De kände sig involverade och lyssnade till. Personalen uppgav att de fick ny kunskap och nya insikter även om det var anhörigvårdare som de känt länge. De synpunkter som framkom har åtgärdats i det instrument som medföljer denna rapport. Anhörigvårdarna och personalen som deltagit i utvecklingsarbetet bedömer nu att instrumentet är färdigt att användas.

Det stora intresse och positiva gensvar som framkommit från alla berörda grupper under projektets gång talar för att det finns en ökande vilja att möta anhörigvårdare där de är och att arbeta tillsammans med dem. Planeringsinstrumentet för anhörigstöd, COAT, kan vara till stor nytta i ett sådant arbete.

COAT-materialet är fritt att använda efter registrering på www.aldrevast.hb.se

Play and expressive therapies to help bereaved children: individual, family and group treatment

Webb, N.B. (2003)

Different types of expressive therapies permit bereaved children to express and process their feelings through a variety of child‐friendly non‐verbal methods such as art, creative writing, and music. The selection of a particular method depends on considerations related to the particular needs of each child, the circumstances of the death, and the family/community narrative about it. This article demonstrates how expressive therapies may be used in individual, family, or group sessions which, through play and other modes of expression, provide children with an opportunity to communicate feelings about and reactions to their bereavement experiences in symbolic form.

Play therapy for bereaved children: adapting stategies to community, school, and home settings

Webb, N.B. (2011)

Play therapy is a highly adaptable treatment method that can be modified according to children's ages, circumstances, and settings in which counseling occurs. Play therapy may be used in schools, community settings, and homes to help children following the death of a significant other. After reviewing basic developmental factors that affect children's ability to comprehend the meaning of death, the article discusses the special circumstances of grief in different situations, including community-based counseling after Hurricane Katrina, school-based group play therapy following a teacher's death, and conjoint parent-child play therapy after a father's death in a terrorist attack. Increasing the acceptability and effectiveness of play therapy, professionals must consider and incorporate family and community traditions and beliefs. Additionally, professionals are encouraged to support teachers and parents in utilizing play-based activities to facilitate children's expressions of grief.

Poly-Victimization in a National Sample of Children and Youth

Turner, H. A., Finkelhor, D., & Ormrod, R. (2010)

Abstract
BACKGROUND:
Most studies of children's exposure to violence focus on separate, relatively narrow categories of victimization (such as sexual abuse, physical maltreatment, or bullying), paying less attention to exposure to multiple forms of victimization.
PURPOSE:
This study documents children's lifetime exposure to multiple victimization types (i.e., "poly-victimization") and examines the association between poly-victimization and extent of trauma symptomatology.
METHODS:
Analyses were based on telephone interviews conducted between January 2008 and May 2008 with a nationally representative sample of 4053 children aged 2-17 years and their caregivers.
RESULTS:
Exposure to multiple forms of victimization was common. Almost 66% of the sample was exposed to more than one type of victimization, 30% experienced five or more types, and 10% experienced 11 or more different forms of victimization in their lifetimes. Poly-victims comprise a substantial portion of the children who would be identified by screening for an individual victimization type, such as sexual assault or witnessing parental violence. Poly-victimization is more highly related to trauma symptoms than experiencing repeated victimizations of a single type and explains a large part of the associations between individual forms of victimization and symptom levels.
CONCLUSIONS:
Studies focusing on single forms of victimization are likely to underestimate the full burden of victimization that children experience and to incorrectly specify the risk profiles of victims. Research, clinical practice, and intervention strategies are likely to improve with more comprehensive assessments of victimization exposure.

Positive and negative evaluation of caregiving among three different types of informal care relationships

Broese, M., et al. (2013)

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research

Santini, S. Socci, M. D’Amen, B Di Rosa, M Casu, G. Hlebec, V. Lewis, F. Leu, A. Hoefman, R. Brolin, R. Magnusson; L. Hanson, E. (2020)

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

Positive and negative symptom behaviors and caregiver burden in the relatives of persons with schizophrenia

Provencher, H. L., & Mueser, K. T. (1997)

Objective: The relationships of perceived severity and responsibility attribution for positive and negative symptom behaviors to caregiver burden were investigated. Two types of burden were studied: objective burden (i.e., negative consequences such as physical problems, financial difficulties, and household tension), and subjective burden (i.e., emotional distress about disturbing behaviors). Method: Self-report measures were completed by 70 primary caregivers of persons with schizophrenia. Results: Subjective burden was related to both the severity of positive and negative symptom behaviors, whereas objective burden was related only to the severity of negative symptom behaviors. Responsibility attribution for negative symptom behaviors was related only to objective burden. Caregivers who perceived patients as being less responsible for their negative symptom behaviors reported higher levels of objective burden. The relationship between responsibility attribution for negative symptom behaviors and objective burden remained significant, even after controlling for the severity of negative symptom behaviors. Caregivers' perceptions of patients' responsibility for positive symptom behaviors were not related to objective burden. Conclusions: As expected, perceived severity of negative symptom behaviors was related to objective caregiver burden, whereas severity of positive symptom behaviors was not. These findings suggest that negative symptoms may have a greater impact on role functioning that positive symptoms, leading to greater burden. However, contrary to expectations, less responsibility attribution for negative symptom behaviors was related to higher levels of objective caregiver burden. Caregivers who perceive patients as incapable of altering their negative symptom behaviors and meeting certain role obligations may assume extra responsibilities, leading to higher levels of objective burden. The results indicate that there may be disadvantages for caregivers associated with assuming that patients have no control over their negative symptom behaviors.

Positive family environment predicts improvement in symptoms and social functioning among adolescents at imminent risk for onset of psychosis

O'Brien MP, Gordon JL, Bearden CE, Lopez SR, Kopelowicz A, Cannon TD. (2006)

This study investigated whether family factors, such as criticism, emotional over-involvement (EOI), warmth, and positive remarks, as measured by the Camberwell Family Interview (CFI), predict symptom change and social outcome for individuals identified as at imminent risk for conversion to psychosis. Twenty-six adolescent patients were administered the Structured Interview for Prodromal Syndromes and the Strauss-Carpenter Outcome Scale at baseline and follow-up assessment approximately three months later. Patients' primary caregivers were administered the CFI at baseline. After controlling for symptom severity at baseline, there were significant associations between caregivers' EOI at baseline and improvement in high-risk youths' negative symptoms and social functioning at follow-up. Similarly, caregivers' positive remarks at baseline were associated with improvement in negative and disorganized symptoms at follow-up, and warmth expressed by caregivers was associated with improved social functioning at follow-up. Although family members' critical comments were not related to patients' symptoms, the majority of critical remarks were focused on patients' negative symptoms and irritability/aggression, which may be important targets for early intervention. These preliminary results provide a first glimpse into the relationship between family factors and symptom development during the prodrome and suggest that positive family involvement predicts decreased symptoms and enhanced social functioning at this early stage. The finding that four-fifths of the youth enrolled in this early intervention clinical research program have shown symptomatic improvement by the three-month assessment point is very encouraging from an early detection/early intervention standpoint.

Positive parenting as a mediator of the relations between parental psychological distress and mental health problems of parentally bereaved children

Kwok, O., Haine, R.A., Sandler, I.N., Ayers, T.S., Wolchik, S.A. & Tein, J. (2005)

This study investigated a positive parenting composite of multiple measures of warmth and consistent discipline as a mediator of the relations between surviving parents' psychological distress and parentally bereaved children's mental health problems using both cross-sectional and prospective longitudinal models. The study included 214 bereaved children ages 7 to 16 and their surviving parent or current caregiver. A multirater, multimethod measurement model of positive parenting was developed. Although the mediational model was supported by analysis of the cross-sectional data, it was not supported in the 3-wave longitudinal model. However, the longitudinal model did find a significant path from positive parenting at Wave 2 to child mental health problems 11 months later at Wave 3, controlling for stability in child mental health problems. Implications for understanding the development of mental health problems of parentally bereaved children are discussed.

Positivt beteendestöd i omsorg och skola – en introduktion

Peter Karlsson (2018)

Den här boken ger en introduktion till positivt beteendestöd (PBS), med huvudfokus på de två områden där PBS fått störst genomslag: för individer med svåra problemskapande beteenden och som förebyggande och verksamhetsövergripande förhållningssätt, framför allt inom skolan.

Posttraumatic growth among children and adolescents: a systematic review

Meyerson, D., Grant, K., Carter, J., & Kilmer, R. (2011)

Stress and trauma research has traditionally focused on negative sequelae of adversity. Recently, research has begun to focus on positive outcomes, specifically posttraumatic growth (PTG) - "positive change experienced as a result of the struggle with trauma" - which emphasizes the transformative potential of one's experiences with highly stressful events and circumstances. The positive changes of PTG are generally thought to occur in five domains: new possibilities, relating to others, personal strength, appreciation of life, and spiritual change. The study of PTG has, for the most part, been centered on adults, and not until very recently has there been sufficient research on PTG among children and adolescents to justify a review. The current systematic review of the literature on PTG among children and adolescents included 25 studies that tested associations between PTG and conceptually-relevant variables found to be associated with PTG in adults and hypothesized to play similar roles in young people, including environmental characteristics, distress responses, social processes, psychological processes, positive outcomes, and demographic variables. Links were made between a theoretical model of PTG among youth and findings of the current review. Limitations and recommendations for future research are discussed.

Posttraumatic stress disorder across two generations of Cambodian refugees

Sack, W. H., Clarke, G. N., & Seeley, J. (1995)

OBJECTIVE:
To examine the expression of war-related trauma as manifested by DSM-III-R rates of posttraumatic stress disorder (PTSD) and major depressive disorder in two generations of Cambodian refugees living in the western United States.

METHOD:
A probability sample of 209 Khmer adolescents and one of their parents were interviewed using portions of the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Epidemiologic Version and the PTSD section of the Diagnostic Interview for Children and Adolescents. Interviews were conducted in English by a master's-level clinician with a Khmer interpreter.

RESULTS:
PTSD was found to be significantly related across parent-child generations. A nonsignificant generational trend was also found for depressive disorders. A number of environmental variables measured in the study (amount of reported war trauma, loss, living arrangements, treatment received, socioeconomic status) were not related to these findings. Parents were more likely to report an earlier onset of PTSD symptoms.

CONCLUSIONS:
This study suggests that PTSD in refugees may cluster in families. Whether this phenomenon is caused by a genetic susceptibility to trauma awaits further research. PTSD and depressive disorders in refugee populations, while often comorbid, appear to follow different courses over time.

Posttraumatic stress disorder among preschoolers exposed to ongoing missile attacks in the Gaza war

Kaufman-Shriqui, V., Webeloff, N., Faroy, M., Meiri, G., Shahar, D. R., Fraser, D., Harpaz-Rotem, I. (2013)

BACKGROUND:
The prevalence and manifestation of posttraumatic stress symptoms in young children may differ from that observed in adults. This study examined sociodemographic, familial, and psychosomatic correlates of posttraumatic stress disorder (PTSD) among preschool children and their mothers who had been exposed to ongoing missile attacks in the Gaza war.

METHODS:
One hundred and sixty-seven mothers of preschoolers (aged 4.0-6.5 years) were interviewed regarding PTSD and psychosomatic symptomatology of their children, as well as their own reactions to trauma.

RESULTS:
Fourteen mothers (8.4%) and 35 children (21.0%) screened positive for PTSD. Sociodemographic characteristics were not associated with PTSD among mothers or children. Among children, the only significant risk factor was having a mother with PTSD (OR = 12.22, 95% CI 2.75-54.28). Compared to children who did not screen positive for PTSD, those who did screen positive displayed significantly higher rates of psychosomatic reactions to trauma, most notably constipation or diarrhea (OR = 4.36, 95% CI 1.64-11.60) and headaches (OR = 2.91, 95% CI 1.07-7.94).

CONCLUSIONS:
Results of this study add to the burgeoning literature on child PTSD, emphasizing the important role of maternal anxiety and the psychosomatic reactions associated with exposure to ongoing traumatic experiences in young children.

Post-traumatic stress disorder, depression, and anxiety among Gaza Strip adolescents in the wake of the second Uprising (Intifada).

Elbedour, S., Onwuegbuzie, A. J., Ghannam, J., Whitcome, J. A., & Hein, F. A. (2007)

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

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

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

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

Post-traumatic stress disorder, depression, and anxiety among Gaza Strip adolescents in the wake of the second Uprising (Intifada).

Elbedour, S., Onwuegbuzie, A. J., Ghannam, J., Whitcome, J. A., & Hein, F. A. (2007)

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

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

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

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

Practice standards to improve the quality of family and carer participation in adult mental health care: An overview and evaluation

Lakeman, R. (2008)

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

Practitioner Review: Computerized assessment of neuropsychological function in children: clinical and research applications of the Cambridge Neuropsychological Testing Automated Battery (CANTAB)

Luciana M. (2003)

BACKGROUND:
Computers have been used for a number of years in neuropsychological assessment to facilitate the scoring, interpretation, and administration of a variety of commonly used tests. There has been recent interest in applying computerized technology to pediatric neuropsychological assessment, which poses unique demands based on the need to interpret performance relative to the child's developmental level.
FINDINGS:
However, pediatric neuropsychologists have tended to implement computers in the scoring, but not administration, of tests. This trend is changing based on the work of experimental neuropsychologists who frequently combine data obtained from test batteries with lesion or neuroimaging data allowing descriptions of brain-behavior relations to be made with increasing confidence. One such battery is the Cambridge Neuropsychological Testing Automated Battery (CANTAB), and current studies in which the CANTAB has been used to measure executive functions in children are reviewed.
CONCLUSIONS:
Computerized batteries of this type can record aspects of performance that are difficult for psychometrists to achieve, and these may reflect activity in developing neural networks with more sensitivity than can be achieved with traditional tests. However, before computerized test administration becomes a routine part of pediatric neuropsychological assessment, several obstacles must be overcome. Despite these limitations, it is concluded that computerized assessment can improve the field by facilitating the collection of normative and clinical data.

Prata med ditt barn om autism : en handbok för föräldrar

Dundon Raelene (2019)

Att berätta för ditt barn om autism Att berätta för ditt barn om autismdiagnosen kan kännas skrämmande. Är det bra för barnet att veta? Hur berättar man det? Bör man informera andra? Boken Att berätta för ditt barn om autism ger dig råd, tips, exempel och material för att kunna ha bra samtal om ditt barns autism.

Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study

Lethin Connie, Leino-Kilpi Helena, Bleijlevens Michel HC, Stephan Astrid (2018)

Abstract [en]

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

Stress- and allostasis-induced brain plasticity

McEwen, B. S., & Gianaros, P. J. (2011)

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

Stress and well-being among parents of children with rare diseases: a prospective interventions study.

Dellve, Lotta, Samuelsson, Lena, Tallborn, Andreas, Fasth, Anders & Hallberg, Lillemor (2006)

This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.
BACKGROUND:
Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders.
METHOD:
We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability.
RESULTS:
We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.
CONCLUSION:
Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.

Stress in caregivers of aphasic stroke patients: A randomized controlled trial.

Draper B, Bowring G, Thompson C, Van Heyst J, Conroy P, Thompson J. (2007)

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

Stress, Anxiety and Depression Among Parents of Children With Autism Spectrum Disorder.

Bitsika V, Sharpley CF. (2004)

In a replication of a previous study of the incidence and contributing factors in anxiety, depression and stress in Victorian parents of a child with autism spectrum disorder (ASD), a sample of 107 Gold Coast parents completed a questionnaire that assessed their demographic backgrounds, anxiety and depression scores on standardised inventories, and also tapped several aspects of those factors that may have contributed to their wellbeing. Over 90% of parents reported that they were sometimes unable to deal effectively with their child's behaviour. Nearly half of the participants were severely anxious and nearly two thirds were clinically depressed. Factors that emerged as significant in differentiating between parents with high versus low levels of anxiety and depression included access to family support, parents' estimation of family caregivers' expertise in dealing with the behavioural difficulties of a child with ASD, and parental health. Parents' suggestions for personal support services are reported, and some comparisons across the data from the two states are made, with suggestions for further research into parent support mechanisms.

Stressors, quality of the child-caregiver relationship, and children’s mental health problems after parental death: the mediating role of self-system beliefs

Wolchik, S.A., Tein, J., Sandler, I.N. & Ayers, T.S. (2006)

Abstract
Investigated whether three self-system beliefs, fear of abandonment, coping efficacy, and self-esteem, mediated the relations of stressors and caregiver-child relationship quality with concurrent and prospective internalizing and externalizing problems in a sample of children who had experienced parental death in the previous 2.5 years. The cross-sectional sample consisted of 340 children ages 7-16 and their surviving parent/current caregiver; the longitudinal analyses employed a subset of this sample that consisted of 100 children and their parents/caregivers who were assessed at three time points. A multirater, multimethod measure of caregiver-child relationship quality and a multirater measure of children's mental health problems were used. The cross-sectional model supported a mediational relation for fear of abandonment, coping efficacy, and self-esteem. The three-wave longitudinal model showed that fear of abandonment at Time 2 mediated the relation between stressors at Time 1 and internalizing and externalizing problems at Time 3. Implications of these findings for understanding the development of mental health problems in parentally bereaved children and designing interventions for this at-risk group are discussed.

Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden.

Wallerstedt B., Behm L., Alftberg Å., Sandgren A., Benzein E., Nilsen P.,Ahlström G. (2018)

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

Striving to become familiar with life with traumatic brain injury:experiences of people with traumatic brain injury and their close relatives

Jumisko, Eija (2007)

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

Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK).

Bakas T, Farran CJ, Austin JK, Given BA, Johnson EA, Williams LS. (2009)

Purpose: Stroke caregivers often express the need for information about stroke and assistance with stroke-related care in the early discharge period. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week program that addresses caregiver needs. This study explored the efficacy of the TASK program in improving stroke caregiver outcomes. Method: Guided by a conceptual model, 6 outcomes (optimism, task difficulty, threat appraisal, depressive symptoms, life changes, general health perceptions) were measured in 40 caregivers randomized to the TASK (n = 21) or an attention control group (n = 19). Data were analyzed using analysis of covariance (ANCOVA), controlling for baseline scores and minutes spent with the nurse. Results: Significant increases in optimism at 4 weeks, 8 weeks, and 12 weeks were found, with medium effect sizes for the TASK group relative to the control group (p < .05). Significant improvements in task difficulty at 4 weeks, and threat appraisal at both 8 weeks and 12 weeks were also found (p < .05). Conclusion: Caregivers receiving the TASK intervention improved in optimism, task difficulty, and threat appraisal. Further testing of an enhanced version of the TASK program is warranted, with attention directed toward more distal stroke caregiver outcomes.

Stroke i C-län

Landstinget i Uppsala län (2002)

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

Stroke incidence and survival in the beginning of the 21st century in southern Sweden: comparisons with the late 20th century and projection into the future

Hallström, Jönsson, Nerbrand, Norrving, Lindgren (2008)

BACKGROUND AND PURPOSE:
We report trends of stroke incidence and survival up to year 2001/2002 in Lund-Orup, Sweden, and projections of future stroke incidence in Sweden.
METHODS:
Lund Stroke Register, a prospective population-based study, included all first-ever stroke patients, between March 1, 2001 and February 28, 2002, in the Lund-Orup health care district. Institution-based studies for 1983 to 1985 and 1993 to 1995 were used for comparison. We calculated age-standardized incidence and Cox proportional hazards analysis of survival (stroke subtype, sex, age group, and study period in the analysis). Minimum follow-up was 46 months. Based on our register's stroke incidence and the official Swedish population projection, a projection for future stroke incidence on a national basis was calculated.
RESULTS:
We included 456 patients with first-ever stroke in 2001/2002. The age-standardized incidence (to the European population) was 144 per 100 000 person-years (95%CI 130 to 158) in 2001/2002, 158 (95%CI 149 to 168) in 1993 to 1995, and 134 (95%CI 126 to 143) in 1983 to 1985. Cox proportional hazard analysis indicated decreased risk of death after stroke in 2001/2002 (hazard ratio 0.80; 95%CI 0.67 to 0.94) compared with 1993 to 1995. Up to year 2050, the annual number of new stroke patients in Sweden may increase by 59% based solely on demographic changes.
CONCLUSIONS:
Despite possible underestimation of stroke incidence during the previous institution-based studies, the increased stroke incidence between 1983 to 1985 and 1993 to 1995 did not continue in 2001/2002. The long-term survival after stroke continues to improve. As the elderly population is growing in Sweden, stable incidence and increasing survival will result in a rapidly increasing prevalence of stroke patients in Sweden.

Structural Ecosystems Therapy for recovering HIV-positive women: Child, mother and parenting outcomes

Mitrani, V.B., McCabe, B.E., Robinson, C., Weiss-Laxer, N.M., & Feaster, D.J. (2010)

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

Structural Ecosystems Therapy for recovering HIV-positive women: child, mother, and parenting outcomes

Mitrani VB, McCabe BE, Robinson C, Weiss-Laxer NS, Feaster DJ (2010)

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

Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding

Bjuresäter, K., Larsson, M., & Athlin, E. (2011)

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

Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding

Bjuresäter, K., Larsson, M., & Athlin, E. (2011)

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

Student-Environment Fit for Students with Physical Disabilities

Hemmingsson, Helena (2002)

The overall aim of the research presented here was to identify and explore aspects of the school environment that influence the participation of students with physical disabilities. The first study examined the reliability and validity of the School Setting Interview (SSI), which is a new assessment still under development. The results showed that the inter-rater reliability was good or very good and that the SSI was able to accurately identify those students who needed to have adjustments made for them. An examination of the content validity indicated that the items included were adequate for the assessment's intended purpose. In a continuation of this research, the SSI was used to identify adjustment needs for students with severe physical disabilities attending a specially adapted upper secondary school. The results showed that most unmet needs were connected to writing, examinations and reading. Overall, 39 % of the needs for adjustments that had been identified were unmet by the school. It is suggested that one describes adjustments at three different levels in relation to the students who have access to them: a general one, a group one, and an individual one.

The SSI was then used to investigate environmental barriers in regular schools. Simultaneously, an investigation was made of how gender, diagnosis, academic grade, the availability of an assistant and the level of locomotion were related to how well the environment suited the students. It was demonstrated that the way in which activities are organised and carried out in school is the area in need of most improvement to promote the participation of students with physical disabilities. The findings also suggest that the older students with disabilities and those who do not have access to an assistant should be prioritised when adjustments are being made.

The next stage of the study was to investigate how temporal structures in the school setting influenced the schoolwork of students with disabilities. It was found that the teaching style determined the pace and defined the temporal pattern in the classroom. Four teaching styles were identified with different influences on the students' opportunities to participate. An educational dilemma was discovered regarding how best to provide equal learning opportunities for students with physical disabilities; this is discussed. Finally, research was conducted to increase the understanding of how the presence of an assistant in school influences the participation of students with physical disabilities. It was revealed that assistance was arranged to promote participation in learning, while the students themselves often prioritised social participation with peers. The pupils had limited influence over the assistance provided and little control over when and how support was given. In turn, these diverging priorities and the lack of influence sometimes precluded appropriate assistance being given to the students with disabilities, thereby affecting their overall opportunities to participate in class.

In summary, this thesis revealed that the organisation of activities, teaching styles and the provision of assistance were aspects of the social environment that especially influenced students' opportunities to participate. The ambiguity and complexity of facilitating participation also created dilemmas where the provision of support intended to facilitate participation might threaten another aspect of participation. On the basis of the results, a definition of participation is suggested that incorporates performance and the students' feeling of involvement and belonging, as well as the students' opportunities for decision-making.

Studier om hälsa för personer med utvecklingsstörning

Umb-Carlsson, Öie (2008)

Av redovisningen i denna rapport framgår att personer med utvecklingsstörning i Sverige
har en ökad sårbarhet för många sjukdomar jämfört med befolkningen i övrigt.
Forskning om levnadsförhållanden visar samstämmiga resultat inom flertalet livsområden.
Vuxna personer med utvecklingsstörning bor och lever sitt liv i samhället där andra
medborgare bor och lever. Likafullt visar jämförelser med den övriga befolkningen tydliga
skillnader i levnadsförhållanden på i stort sett alla livsområden framför allt när det gäller
arbete, inkomst och socialt umgänge.
Personer med utvecklingsstörning har sällan en traditionell anställning på den öppna
arbetsmarknaden. En del har anställning inom Samhall, men många försörjer sig inte
genom arbete utan har sin främsta inkomst via socialförsäkringssystemet. De har litet
inflytande över sin ekonomi. Majoriteten lever ett begränsat socialt liv och umgås mest
med anhöriga och personal. Få har vänner som de själva har valt.
En ljuspunkt finns. Yngre personer i åldern 21–40 år har inte sämre tandstatus än den
övriga befolkningen.

Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties

Emms, L., & Gardner, H. (2010)

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

Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties

Emms, L., & Gardner, H. (2010)

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

Stärkt stöd till barn som anhöriga Slutrapport från regeringsuppdrag 2017–2020

Socialstyrelsen (2020)

Sammanfattning
En hög andel barn har någon gång under sin uppväxt i sin familj missbruk/beroende, psykisk ohälsa eller funktionsnedsättning, våld, allvarlig sjukdom eller skada eller någon som avlider. Ofta är svårigheterna överlappande. Det är ett grundläggande folkhälsoarbete att genom adekvat stöd förebygga de väl dokumenterade riskerna för negativa konsekvenser av en sådan uppväxt, i barnens vardag här och nu och för deras framtid. Ett omfattande utvecklingsarbete har utifrån regeringsuppdragen bedrivits under hela perioden 2011–2020, i nära samarbete med andra nationella och regionala aktörer. Steg har tagits närmare målet att barn inte ska skadas av föräldrars missbruk och beroende och att psykisk ohälsa av familjerelaterade orsaker minskar hos barn och unga. Detta har skett bland annat genom att stödja både hälso- och sjukvård och socialtjänst i att genom ökad kunskap och skapandet av hållbara strukturer tillämpa ett barn-, föräldraskaps- och familjeperspektiv i arbetet med dessa familjer. Stödet har bestått i framtagande och publicering av kunskapssammanfattningar och olika former av webbstöd, spridande av verksamma arbetssätt, stöd till utvecklingsarbeten samt anordnande av konferenser och lärande nätverk. Detta påverkans- och utvecklingsarbete är viktiga insatser för att minska de påverkbara hälsoklyftorna i samhället. Arbetet är också en utmaning som kräver långsiktighet och kontinuerligt stöd för implementering. Fortsatta kontinuerliga insatser behövs för att alla som i sitt arbete möter föräldrar med egna svårigheter uppmärksammar barnens situation och ger dem information, råd och stöd efter behov. Medvetenheten om professionens ansvar att förhålla sig till patienter, brukare och klienter som föräldrar, och till deras barn som anhöriga och rättighetsbärare, behöver öka inom såväl hälso- och sjukvården som socialtjänsten. Barnkonventionen som lag stärker arbetet, men kräver fortsatta insatser för efterlevnad i praktiken. I denna redovisning lyfts därför behovet av att ett fortsatt nationellt stöd inom området behövs. Det stödet omfattar fortsatt arbete med uppföljning, utveckling av ett samordnat familjeorienterat arbetssätt inom socialtjänsten och hälso- och sjukvården, stödstrukturer för barn i akuta situationer, samlad kompetens och ansvar för barn som föds med skador till följd av exponering av alkohol under fosterlivet samt nationellt samordning inom flera områden, exempelvis i arbetet med våld mot barn. Det är angeläget att den kommande ANDT-strategin från 2021 och framåt fortsatt särskilt lyfter behovet av satsningar på barn och stöd i föräldraskap för att se till barns behov av en trygg uppväxt här och nu samt förebygga missbruk och psykisk ohälsa i nästa generation.

Stöd för anhöriga till personer med demenssjukdom. Fokusrapport.

Stål Söderberg, E. (2010)

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

Stöd och samverkan kring föräldrar med intellektuella begränsningar – föräldrars och yrkesverksammas perspektiv.

Olson, Lena & Springer, Lydia (2005)

Magisteruppsats

Syftet med föreliggande studie var att skaffa fram ett underlag för att från habiliteringens sida
kunna vara ett adekvat stöd till professionella, när det gäller bemötande av föräldrar, särskilt
mammor, med intellektuella begränsningar.
För detta syfte behövde vi kartlägga de professionellas inställning och attityder till föräldrar
med intellektuella begränsningar, men också förmedla den bild som mammorna/föräldrarna
har på det stöd de får. I en kvalitativ studie intervjuades åtta mammor med intellektuella
begränsningar om deras syn på det stöd de får. En enkätstudie ställd till professionella gav
kännedom om olika verksamheters arbetssätt och utbud av stöd till familjer där en eller båda
föräldrarna har intellektuella begräsningar. I resultatdelen speglades informationen från
mammorna mot enkätsvaren.
Samverkansaspekter beaktades särskilt noga. Studien utgick från följande frågor:
Vilka erfarenheter och vilken inställning har de professionella till föräldrar med intellektuella
begränsningar? Hur kan mammornas egna synpunkter på den hjälp de får bidra till förståelse
för familjernas behov? Vilket stöd finns idag, hur skulle det eventuellt behöva förstärkas och
vilken roll kan habiliteringen ha?
De båda undersökningarna gav samstämmiga resultat när det gäller att beskriva
stödinsatsernas omfattning och mångfald. En annan aspekt som belystes från ömse håll var
behovet av utökat tidsutrymme för kontakt. Denna samstämmighet kunde utgöra grund för
fortsatt arbetsallians. Vi konstaterade vidare att det fanns behov av ett kunskapscenter som
kunde bidra till lättillgänglig information för både professionella och familjer. Professionella
uttryckte önskan om att lära mer avseende funktionshinder och dess konsekvenser särskilt i
kombination med föräldraskap. Behov av utökad och rutinmässig samverkan framkom mellan
de instanser som möter föräldrar med intellektuella begränsningar och deras barn. Slutligen
konstaterades en naturlig roll för habiliteringen, framför allt avseende fyra aspekter. Det
gällde förmedling av kunskap om funktionshinder, liksom insatser av preventiv art,
nätverksbyggande och samordnarfunktion.

Preschool Israeli Children Exposed to Rocket Attacks: Assessment, Risk, and Resilience

Wolmer, L., Hamiel, D., Versano-Eisman, T., Slone, M., Margalit, N., & Laor, N. (2015)

Preschool children are among the most vulnerable populations to adversity. This study described the effects of 4 weeks of daily exposure to rocket attacks on children living on Israel's southern border. Participants enrolled in this study were 122 preschool children (50% boys) between the ages 3 and 6 years from 10 kindergartens. We assessed mothers' report of children's symptoms according to the DSM-IV and alternative criteria resembling the DSM-5 criteria for posttraumatic stress disorder (PTSD), general adaptation, traumatic exposure, and stressful life events 3 months after the war. The prevalence of PTSD was lower when the diagnosis was derived from the DSM-IV (4%) than from the DSM-5 criteria (14%). Mothers of children with 4 or more stressful life events reported more functional impairment in social, occupational, and other important areas of functioning compared to children with 0 or 1 stressful life event. Children with more severe exposure showed more severe symptoms and mothers had more concerns about the child's functioning (η(p)(2) = .09-.25). Stressful life events and exposure to traumatic experiences accounted for 32% of the variance in PTSD and 19% of the variance in the adaptation scale. Results were explored in terms of risk and resilience factors.

Pre‐school teachers’, other professionals’, and parental concerns on cooperation in pre‐school – all around children in need of special support: the Swedish perspective

Sandberg, Anette & Ottosson, Lisbeth (2010)

The aim of this study was to discover and describe parents', pre‐school teachers', and other professionals' experiences of cooperation regarding children in need of special support. It is a topic that arouses many different feelings and experiences. This study has a qualitative procedure with a phenomenological approach. The data collection in this study consists of interviews from 20 participants. It becomes apparent that pre‐school teachers lack training in cooperation, as well as that further education has not been available to any mentionable extent. In this study it becomes clear that there is a large difference between various pre‐schools regarding knowledge and motivation to provide the extra support that many children need. This study also shows that accessibility to and information from other professionals to parents is basic for them to feel safety and support. Different aspects of cooperation are highlighted and discussed.

Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention

Mittelman MS, Roth DL, Clay OJ, Haley WE. (2007)

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

Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010

Socialstyrelsen (2010)

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

Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010

Socialstyrelsen (2010)

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

Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey

Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A. (2010)

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Prevalence and characteristics of child physical abuse in Sweden – findings from a population-based youth survey

Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A. (2010)

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies

May PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M, Hoyme HE. (2009)

Researching the epidemiology and estimating the prevalence of fetal alcohol syndrome (FAS) and other fetal alcohol spectrum disorders (FASD) for mainstream populations anywhere in the world has presented a challenge to researchers. Three major approaches have been used in the past: surveillance and record review systems, clinic-based studies, and active case ascertainment methods. The literature on each of these methods is reviewed citing the strengths, weaknesses, prevalence results, and other practical considerations for each method. Previous conclusions about the prevalence of FAS and total FASD in the United States (US) population are summarized. Active approaches which provide clinical outreach, recruitment, and diagnostic services in specific populations have been demonstrated to produce the highest prevalence estimates. We then describe and review studies utilizing in-school screening and diagnosis, a special type of active case ascertainment. Selected results from a number of in-school studies in South Africa, Italy, and the US are highlighted. The particular focus of the review is on the nature of the data produced from in-school methods and the specific prevalence rates of FAS and total FASD which have emanated from them. We conclude that FAS and other FASD are more prevalent in school populations, and therefore the general population, than previously estimated. We believe that the prevalence of FAS in typical, mixed-racial, and mixed-socioeconomic populations of the US is at least 2 to 7 per 1,000. Regarding all levels of FASD, we estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries.

Prevalence of adolescents who perceive their parents to have alcohol problems: A Swedish national survey using a web-panel

Elgán, TH., & Leifman, H. (2013)

The primary aim is to estimate the prevalence of Swedish adolescents who perceive their parent(s) to have alcohol problems. Additional research questions pertain to the prevalence of adolescents who think someone close to them drinks too much alcohol and if this has hurt them or caused them problems.
A cross-sectional design was employed using a web-based survey targeted to 1000 Swedish 16-19-year-olds randomly selected from a web panel. The questionnaire included the CAST-6 scale, used to assess whether or not participants perceived their parents' alcohol consumption as problematic, and questions relating to whether or not they think someone close to them drinks too much and if this has caused them problems. Data was weighted using a post-stratification procedure.
The proportion of adolescents classified as having parents with alcohol problems was 20.1%. Further, 44.0% reported that they think someone close to them drinks too much alcohol and 9.6% that this has hurt them or caused them problems.
These results indicate that the problem is widespread. Our findings are similar to previous research where a more indirect methodology has been adopted, using either psychiatric interviews or self-reported alcohol consumption of adults, to estimate the magnitude of the problem.

Prevalence of alcohol use before and during pregnancy and predictors of drinking during pregancy: a cross sectional study in Sweden.

Skagerström, J., Alehagen, S., Häggström-Nordin, E., Årestedt, K., & Nilsen, P. (2013)

Background

There is a paucity of research on predictors for drinking during pregnancy among women in Sweden and reported prevalence rates differ considerably between studies conducted at different antenatal care centres. Since this knowledge is relevant for preventive work the aim of this study was to investigate these issues using a multicenter approach.

Methods

The study was conducted at 30 antenatal care centers across Sweden from November 2009 to December 2010. All women in pregnancy week 18 or more with a scheduled visit were asked to participate in the study. The questionnaire included questions on sociodemographic data, alcohol consumption prior to and during the pregnancy, tobacco use before and during pregnancy, and social support.

Results

Questionnaires from 1594 women were included in the study. A majority, 84%, of the women reported alcohol consumption the year prior to pregnancy; about 14% were categorized as having hazardous consumption, here defined as a weekly consumption of > 9 standard drinks containing 12 grams of pure alcohol or drinking more than 4 standard drinks at the same occasion. Approximately 6% of the women consumed alcohol at least once after pregnancy recognition, of which 92% never drank more than 1 standard drink at a time. Of the women who were hazardous drinkers before pregnancy, 19% reduced their alcohol consumption when planning their pregnancy compared with 33% of the women with moderate alcohol consumption prior to pregnancy. Factors predicting alcohol consumption during pregnancy were older age, living in a large city, using tobacco during pregnancy, lower score for social support, stronger alcohol habit before pregnancy and higher score for social drinking motives.

Conclusions

The prevalence of drinking during pregnancy is relatively low in Sweden. However, 84% of the women report drinking in the year preceding pregnancy and most of these women continue to drink until pregnancy recognition, which means that they might have consumed alcohol in early pregnancy. Six factors were found to predict alcohol consumption during pregnancy. These factors should be addressed in the work to prevent alcohol-exposed pregnancies.

Stöd till anhöriga till personer under 65 år. Fokus på anhöriga, nr 15

Lindgren, Karin (2009)

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

Prevalence of parental mental illness in Australian families

Maybery, D.J., Reupert, A., Patrick, K., Goodyear, M., & Crase, L. (2009)

AIMS AND METHOD

To provide multiple estimates of the numbers of Australian and Victorian families and children living in families where a parent has had a mental illness. We used the Australian Bureau of Statistics Victorian Mental Health Branch service usage and data collected from 701 community participants to triangulate prevalence information.

RESULTS

According to population estimates, 23.3% of all children in Australia have a parent with a non-substance mental illness, 20.4% of mental health service users have dependent children and 14.4% of the community study participants report having at least one parent with a mental illness.

CLINICAL IMPLICATIONS

The multiple prevalence estimates of the numbers of children in families with parental mental illness provide fundamental information for psychiatric policy, planning and programming.

Prevalence of serious mental disorder in 7000 refugees resettled in western countries: a systematic review

Fazel. (2005)

BACKGROUND:
About 13 million people are classified as refugees worldwide, and many more former refugees have been granted citizenship in their new countries. However, the prevalence of post-traumatic stress disorder, major depression, or psychotic illnesses in these individuals is not known. We did a systematic review of surveys about these disorders in general refugee populations in western countries.

METHODS:
We searched for psychiatric surveys that were based on interviews of unselected refugee populations and that included current diagnoses of post-traumatic stress disorder, major depression, psychotic illnesses, or generalised anxiety disorder. We did computer-assisted searches, scanned reference lists, searched journals, and corresponded with authors to determine prevalence rates of these mental disorders and to explore potential sources of heterogeneity, such as diagnostic criteria, sampling methods, and other characteristics.

FINDINGS:
20 eligible surveys provided results for 6743 adult refugees from seven countries, with substantial variation in assessment and sampling methods. In the larger studies, 9% (99% CI 8-10%) were diagnosed with post-traumatic stress disorder and 5% (4-6%) with major depression, with evidence of much psychiatric comorbidity. Five surveys of 260 refugee children from three countries yielded a prevalence of 11% (7-17%) for post-traumatic stress disorder. Larger and more rigorous surveys reported lower prevalence rates than did studies with less optimum designs, but heterogeneity persisted even in findings from the larger studies.

INTERPRETATION:
Refugees resettled in western countries could be about ten times more likely to have post-traumatic stress disorder than age-matched general populations in those countries. Worldwide, tens of thousands of refugees and former refugees resettled in western countries probably have post-traumatic stress disorder.

Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice

Dore MM, Doris JM. (1998)

The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.

Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice.

Dore MM, Doris JM. (1998)

The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.

Stöd till barn som bevittnat våld mot mamma. Resultat från en nationell utvärdering

Broberg, A., Almqvist, L., Axberg, U., Grip, K., Almqvist, K., Sharifi, U., Cater, Å., Forssell, A., Eriksson, M., & Iversen, C. (2011)

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

Stöd till barn som upplevt våld : Utvecklingen på fältet 2006-2010

Eriksson, M. (2010)

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

Prevention programmes for children of problem drinkers: A review.

Cuijpers P. (2005)

It is well established that children of problem drinkers have an increased risk of developing mental health problems, including drinking and drug misuse problems, depression, eating disorders, conduct disorders, and delinquency. However, compared to the hundreds of studies that have examined the effects of parental problem drinking on their children, the genetics of problem drinking, and the physical and mental problems of these children, it is disappointing that so few studies have explored the possibilities of prevention. Despite all the research on children of problem drinkers, we have no usable operationalizations of what problem drinking is, or when a child can be defined as a child of a problem drinker. Furthermore, no valid screening or severity assessment instruments are available; there is no solution for the ethical dilemma of the need to involve parents while these parents are at the same time the problem; very few theory-driven prevention programmes have been developed; very little is known about protective factors that could be the focus of prevention programmes; and we have no programmes that can be considered to be 'evidence based'. This paper describes these problems, presents an overview of the prevention research in this area, and gives some directions for future research.

Preventive interventions and sustained attachment security in maltreated children

STRONACH, E. P., TOTH, S. L., ROGOSCH, F. & CICCHETTI, D. (2013)

Thirteen-month-old maltreated infants (n = 137) and their mothers were randomly assigned to one of three conditions: child-parent psychotherapy (CPP), psychoeducational parenting intervention (PPI), or community standard (CS). A fourth group of nonmaltreated infants (n = 52) and their mothers served as a nonmaltreated comparison (NC) group. A prior investigation found that the CPP and the PPI groups demonstrated substantial increases in secure attachment at postintervention, whereas this change was not found in the CS and the NC groups. The current investigation involved the analysis of data obtained at a follow-up assessment that occurred 12 months after the completion of treatment. At follow-up, children in the CPP group had higher rates of secure and lower rates of disorganized attachment than did children in the PPI or the CS group. Rates of disorganized attachment did not differ between the CPP and the NC groups. Intention to treat analyses also showed higher rates of secure attachment at follow-up in the CPP group relative to the PPI and the CS groups. However, groups did not differ on disorganized attachment. Both primary and intention to treat analyses demonstrated that maternal-reported child behavior problems did not differ among the four groups at the follow-up assessment. This is the first investigation to demonstrate sustained attachment security in maltreated children 12 months after the completion of an attachment theory informed intervention. The findings also suggest that, although effective in the short term, parenting interventions alone may not be effective in maintaining secure attachment in children over time.

Primary caregivers´ satisfaction with clinicians´ response to them as informal carers of young people with first-episode psychosis: a qualitative study

McCann T, Lubman D, Clark E. (2011)

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

Prior participation in the strange situation and overstress jointly facilitate disorganized behaviours: implications for theory, research and practice

GRANQVIST, P., HESSE, E., FRANSSON, M., MAIN, M., HAGEKULL, B. & BOHLIN, G. (2016)

We seek to understand why a relatively high percentage (39%; vs the meta-analytic average, 15-18%) of disorganized/disoriented (D) classifications has accrued in the low-risk Uppsala Longitudinal Study (ULS) study, using experienced D coders. Prior research indicates that D behaviours do not always indicate attachment disorganization stemming from a history of frightening caregiving. We examined the role of two other presumed factors: participation in a previous strange situation and overstress. Our findings indicate that both factors were highly prevalent in the ULS sample and that they jointly predicted higher rates of D. First, participation in a previous strange situation was associated with significantly higher distress displays during the second visit than occurred among previously untested children, suggesting that prior participation in the strange situation had a sensitizing effect on child distress during the second visit. Second, unless separations were cut short in lieu of high distress during the second visit, re-tested children were disproportionately likely (ca 60%) to be classified D. We argue that these findings have important implications for theory, research, and practice. In particular, we conclude that practitioners must refrain from misattributing the appearance of any D behaviors observed to a history of maltreatment.

Stöd till personer som vårdar eller stödjer närstående, Lägesbeskrivning 2013

Socialstyrelsen (2013)

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

ProFamilies-Dementia: A programme for elderly people with Dementia and their families

Guerra SR, Mendes AF, Figueiredo DM, Sousa LX. (2012)

In this paper we describe the development and pilot implementation, in a primary care context, of a programme for helping families adapt to living with a person with Dementia (proFamilies-Dementia). This programme aims to promote the healthy adaptation of the family to the presence of an elderly member with Dementia living in their homes. It comprises three components: a psycho-educational, multi-family discussion group for the families; cognitive stimulation for the elderly person with Dementia; and a mediation service to support the families after participation in the first two components. proFamilies-Dementia was implemented with one group involving five families. The main benefits mentioned by families include: an opportunity to share experiences with others who are living through similar circumstances; the development of an improved sense of competency; and the improvement of family relationships. proFamilies-Dementia reveals potential for promoting the provision of integrated support from health and social services, which usually function as independent and parallel support structures.

ProFamilies-Dementia: A programme for elderly people with Dementia and their families

Guerra SR, Mendes AF, Figueiredo DM, Sousa LX (2012)

In this paper we describe the development and pilot implementation, in a primary care context, of a programme for helping families adapt to living with a person with Dementia (proFamilies-Dementia). This programme aims to promote the healthy adaptation of the family to the presence of an elderly member with Dementia living in their homes. It comprises three components: a psycho-educational, multi-family discussion group for the families; cognitive stimulation for the elderly person with Dementia; and a mediation service to support the families after participation in the first two components. proFamilies-Dementia was implemented with one group involving five families. The main benefits mentioned by families include: an opportunity to share experiences with others who are living through similar circumstances; the development of an improved sense of competency; and the improvement of family relationships. proFamilies-Dementia reveals potential for promoting the provision of integrated support from health and social services, which usually function as independent and parallel support structures.

Professionals’ and parents’ shared learning in blended learning networks related to communication and augmentative and alternative communication for people with severe disabilities

Wilder Jenny, Magnusson Lennart, Hanson Elizabeth (2015)

People with severe disabilities (SD) communicate in complex ways, and their
teachers, parents and other involved professionals find it difficult to gain knowledge
and share their experiences regarding the person with SD's communication
methods. The purpose of this study is to contribute to our understanding of how
parents and professionals share learning about communication and augmentative
and alternative communication (AAC) for people with SD by participating in
blended learning networks (BLNs). Thirty-six parents and professionals participated
in online web-based BLNs according to a prepared format; four groups
were formed, and all of the groups participated in four discussion sessions and
an evaluation session. Detailed minutes from the 16 BLN sessions, an evaluation
session and course evaluation data were thematically analysed. The theoretical
frameworks were different perspectives on disability within communication
research and special education research, and theories about shared learning in
networks. The analyses revealed themes that focused on communication partners'
knowledge, attitudes and strategies regarding communicating with people
with SD; the importance and power of using multimodal AAC; and the universality,
user-friendliness and empowering aspects of iPads and apps. The findings
suggest that participants perceive communication and AAC with people with SD
from relational, dialogical and interactional perspectives, whereas the categorical
perspective was less pronounced. In accordance with other professional competence
research, the use of online web-based BLNs with mixed groups that was
described in this paper yielded positive evaluations from the participants. The
opportunity for meeting others involved in caring for people with SD, the actual
blended groups and the sharing of technology and AAC experiences in particular
were highlighted.

Prognoser i tvångsvårdsärenden om omsorgssvikt

Alexius, K. (2013)

This study set out to analyze how background-context, prognoses and evidence-based facts are referred to in child welfare investigations and judgments concerning coercive care of neglected children. The texts of social investigations and court judgments in 16 cases concerning parents (30) and their children (29) in two counties in Sweden were analyzed by a hermeneutic case study. All cases concerns section 2 in The Care of Young Persons (Special Provisions) Act (1990:52), which states that coercive care shall be decided if, due to neglect or some other situations, there is a "palpable risk of detriment" to the child's health or development. Theoretical framework of sociology of law and of normative legalism were used. The study shows that background-context, prognoses and evidence-based facts seldom are connected in the texts. Background-contexts quantitively dominates, while prognoses are vestigial and rarely enunciates as emanating from evidence-based facts. Instead of describing risk-assessments a plurality of the descriptions in the texts pictures the children as already harmed by neglect. The conclusion of the study is that the sociological conceptions of "a palpable risk" differ a great deal from the legal-theoretical interpretation of the concept.

Substance exposure in utero and developmental consequences in adolescence: A systematic review

Birk Irner, T. (2013)

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

Substance-Abusing Parents in the Criminal Justice System: Does Substance Abuse Treatment Improve Their Children's Outcomes?

Phillips SD, Gleeson JP, Waites-Garrett M. (2009)

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

Promoting preparedness for family caregiving – a randomized controlled intervention in palliative care

Holm, M. (2016)

Background: Patients with incurable illness are increasingly being cared for in their homes with the help of palliative home care. However, in this system family caregivers also play an important role and often take a great responsibility for the patient's care. Family caregivers often lack preparedness for the situation, which could have negative consequences on their health and wellbeing.

Methods: The overall aim of this thesis was to develop and test a psycho-educational intervention for family caregivers in specialised palliative home care and to study processes and effects of the intervention. The psycho-educational intervention was developed based on the theoretical framework of Andershed and Ternestedt with focus on family caregivers' need for education and practical and emotional support. The intervention was delivered by health professionals and tested as a randomised controlled trial (RCT) at 10 specialised palliative home care settings, including an intervention arm and a control arm with standard support. The thesis includes four studies of which two (I, II) had a qualitative design and focused on processes involved in or considered relevant for the intervention. Two studies (III, IV) had a quantitative approach and focused on the effects of the intervention. The overall aim of the intervention was to improve family caregivers' feelings of preparedness for caregiving. In total, 194 family caregivers participated in the RCT with 96 family caregivers in the control arm and 98 in the intervention arm.

Aim and results of studies: The aim of Study I was to study how family caregivers' experienced their preparedness for caregiving in palliative care. The results showed that preparing for caregiving was viewed as an ongoing process by family caregivers and that it was related to the process of preparing for the patient's death.

The aim of Study II was to explore the experiences of delivering and participating in the intervention from the perspectives of health professionals and family caregivers. The intervention was generally perceived as a positive experience and both groups highlighted that it could be used a tool to support family caregivers to become better prepared.

The aim of Study III was to investigate the effects of the intervention compared to standard support in short- term and long-term. The results showed that the intervention had significantly improved family caregivers' feelings of preparedness for caregiving both in short-term and long-term.

The aim of Study IV was to investigate the characteristics of family caregivers who did not benefit from the intervention. The results indicated that family caregivers who did not benefit were significantly less vulnerable at baseline than those who did. Hence, they might not have had the same need for the intervention to become better prepared.

Conclusion: In conclusion of the four studies, the psycho-educational intervention could be valuable as a part of the health professional work to support family caregivers and increase their chances to become better prepared for caregiving. For the development of future interventions, it is important that family caregivers who are perceived as vulnerable are not excluded from participating, because they could be in most need of them.

Promoting self-determination in students with developmental disabilities

Wehmeyer ML. (2007)

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

Prostitution i Sverige. Huvudrapport. Kartläggning och utvärdering av prostitutionsgruppernas insatser samt erfarenheter och attityder i befolkningen

Svedin, C. G., Jonsson, L., Kjellgren, C., Priebe, G., & Åkerman, I. (2012)

Denna rapport är huvudrapporten "Prostitution i Sverige – Kartläggning och utvärdering av prostitutionsgruppernas insatser samt erfarenheter och attityder i befolkningen" och den kan läsas separat som en sammanfattning. Vill man ha mer detaljerad information hänvisas till respektive delrapport. I den första delrapporten "Sälja och köpa sex i Sverige 2011. Förekomst, hälsa och attityder" redovisas en webbaserad epidemiologisk undersökning vars avsikt var att kartlägga erfarenheter av att köpa och sälja sex i befolkningen 18-65 år. I rapporten läggs en bakgrund till det kontext i vilket prostitutionsgruppernas arbete bedrivs. I del 2-4 beskrivs prostitutionsgruppernas organisation och arbetssätt "Kartläggning av insatser mot prostitutionen i Stockholm, Göteborg och Malmö" (delrapport 2) samt de klienter verksamheterna mött under ett år inom programmen för Försäljare av Sexuella Tjänster (FAST) "Ett års kontakter med prostitutionsenheterna och beskrivning av insatser till personer med prostitutionserfarenhet (FAST)"(delrapport 3) och Köpare av Sexuella Tjänster (KAST) "Ett års kontakter med prostitutionsenheterna. En beskrivning av insatser till personer med erfarenhet av att köpa sex/problematiskt sexuellt beteende (KAST)" (delrapport 4). Det centrala fokus för regeringens och Socialstyrelsens uppdrag har varit att göra en utvärdering av det behandlingsarbete som bedrivs av prostitutionsgrupperna för stöd och hjälp till försäljare av sexuella tjänster och köpare av sexuella tjänster. Dessa studier "Utvärdering av samtalsbehandling med försäljare av sexuella tjänster (FAST)" och "Utvärdering av samtalsbehandling med köpare av sexuella tjänster (KAST)" kompletteras med en kvalitativ studie om tidigare klienters erfarenhet av given behandling "Intervjuer med personer som tidigare fått behandling vid FAST". Rapporten avslutas med en intervjustudie med 11 unga kvinnor som sålt sex via Internet, "Online är jag någon annan.......Unga kvinnor med erfarenhet av att sälja sexuella tjänster online".

Protection against perceptions of powerlessness and helplessness during palliative care: the family members' perspective

Milberg, A. and P. Strang (2011)

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

Protection against perceptions of powerlessness and helplessness during palliative care: the family members' perspective

Milberg, A., & Strang, P. (2011)

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

Providing Support at Time of Death From Cancer: Results of a 5-Year Post-Bereavement Group Study

Clark PG, Brethwaite DS, Gnesdiloff S. (2011)

Despite advances in the quality and availability of hospice and palliative care for people with end stage cancers, research addressing the psychosocial needs of family members and concerned others during the dying process has been limited primarily to caregivers. In addition, many of these studies focused on the recently bereaved. In this study, the authors sought to broaden that perspective by examining the psychosocial needs of secondary survivors, a term that applies to caregivers, family members, and others who felt a caring bond with a dying person. A qualitative exploration of needs expressed by secondary survivors following the conclusion of a structured 8-week psychoeducational grief group experience revealed that secondary cancer survivors experience a sense of isolation and powerlessness that is often unrecognized by physicians, nurses, oncology social workers, or other health care professionals. Furthermore, these secondary survivors needed support that extends well beyond activities that are traditionally associated with the physical and emotional care of the dying. Social work intervention strategies directed toward helping secondary survivors assert personal needs, develop greater proximity with the health care team, and prepare for the processes associated with end-of-life may be helpful later during bereavement.

Psychiatric disorders among children of parents with cancer: A Swedish register-based matched cohort study

Chen R., Regodón Wallin A., Norén Selinus E., Sjölander A., Fall K., Valdimarsdóttir U., Czene K., Fang F. (2018)

Abstract
OBJECTIVE: To investigate the risk of psychiatric disorders among children of parents with cancer in a nationwide population-based setting. METHODS:
Based on Swedish national registers, the study included 101 339 children with parental cancer diagnosed either during pregnancy (N = 1047) or after birth (N = 100 292) that were born during 1983 to 2000. For each exposed child, we randomly selected 10 unexposed children from the general population after individual matching by year of birth and sex. The matched cohort was followed during 2001 to 2010. Clinical diagnoses of psychiatric disorders and use of prescribed psychiatric medications were identified for all children. Cox regression and logistic regression were used to evaluate the associations of parental cancer with psychiatric disorder diagnosis and psychiatric medication use, respectively. RESULTS: Parental cancer during pregnancy was not associated with the risk of psychiatric disorders overall, although paternal cancer during pregnancy was associated with a higher risk of psychiatric medication use among females. Parental cancer after birth was associated with higher risks of psychiatric disorder diagnoses, particularly stress reaction and adjustment disorders (males: hazard ratio [HR]: 1.24, 95% confidence interval [CI], 1.08-1.43; females: HR: 1.27, 95% CI, 1.14-1.41), and use of psychiatric medication (males: odds ratio [OR]: 1.09, 95% CI, 1.04-1.13; females: OR: 1.14, 95% CI, 1.10-1.18). The positive associations were stronger for parental cancer with poor expected survival and for parental death after cancer diagnosis.
CONCLUSIONS: Parental cancer, primarily the life-threatening cancer, might confer a higher risk of psychiatric disorders among children. These findings have potential implications for health care professionals in providing targeted support to children living with a parent with cancer.

Psychoeducational multi-family group treatment with adolescents at high risk for developing psychosis

O'Brien MP, Zinberg JL, Bearden CE, Daley M, Niendam TA, Kopelowicz A, et al. (2007)

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

Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers

Holm M1, Alvariza A, Fürst CJ, Öhlen J, Årestedt K (2018)

Abstract
The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (α > 0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.

Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analy

Jervaeus, A., Kottorp, A., & Wettergren, L. (2013)

There is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from persons without this experience, to fully understand the impact and complexity of childhood cancer in regard to different aspects of quality of life. The aim of this study was to evaluate the psychometric properties of KIDCSREEN-27 for use with survivors of childhood cancer.

Methods
KIDSCREEN-27 consists of five dimensions measuring health-related quality of life (HRQoL) in children and adolescents; 63 survivors, (4–6 years post- diagnosis) aged 12–22 and 257 from a comparison group were assessed. KIDSCREEN-27 was evaluated using a Rasch Partial Credit Model (PCM). The aspects studied were the properties of the rating scale including threshold values, internal scale validity, unidimensionality, person response validity, and differential item functioning (DIF) comparing the survivors with peers.

Results
The rating scales revealed almost expected patterns of responses, and the threshold ordering for two of three rating scales displayed acceptable results. The items demonstrated acceptable goodness-of-fit MnSq values in 23 of 27 items (85.2%). The explained variance within each dimension was above the set criterion (50%) for all dimensions except Autonomy & Parent Relations (39.8%). Person goodness-of-fit showed acceptable results in four of five dimensions. No DIF was detected with regard to cancer experience (survivors/comparison group).

Conclusions
Based on the performed Rasch analysis, KIDSCREEN-27 is recommended, with the exception of Autonomy & Parent Relations, due to non-satisfactory unidimensionality, for use among adolescents and young adults who have survived childhood cancer. Still, it is recommended that future research should include a larger sample of childhood cancer survivors in order to monitor some items more thoroughly and explore different levels and patterns of HRQoL in KIDSCREEN-27.

Support/services and family carers of persons with stroke impairment: Perceived importance and services received

Krevers, B. and B. Öberg (2011)

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

Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder

Chronis, A. M., Lahey, B. B., Pelham, W. E., Kipp, H. L., Baumann, B. L., & Lee, S. S. (2003)

OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.

Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

Gall, Sheena Helen, Atkinson, Jacqueline, Elliott, Lawrence, Johansen,Ron (2003)

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

Psychosocial effects on siblings of children with autism and mental retardation: a population-based study

Bågenholm, A. and C. Gillberg (1991)

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more 'stressful events'. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.

Supporting hospice volunteers and caregivers through community-based participatory research

MacLeod A, Skinner MW, Low E. (2012)

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

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson