Bibliotek

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.

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.

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.

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.

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, 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.

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.

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.

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.

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.

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.

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.

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].

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.

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.

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.

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

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.

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.

En arbetstagare har rätt till ledighet från sin anställning av trängande familjeskäl som har samband med sjukdom eller olycksfall och som gör arbetstagarens omedelbara närvaro absolut nödvändig

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.

Akademisk avhandling

The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Interviews with six couples, persons with Parkinson's disease and their partners, were tape-recorded, transcribed and analysed using manifest and latent content analysis. The couples' experiences could be interpreted as Being in the light and Being in the shade of support, with internal variations for the patients and their partners. The narratives also revealed that the disease meant a transition of roles in their relation seen in different patterns: From unity towards unity, From unity towards distance and From distance towards unity. The results indicate that there is a need for more specialised and individually adjusted support.

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

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.

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.

Freedom, dignity and equality - the core values of the South African Constitution (1996) - provide the foundation for developing inclusive societies.

Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300

En bok för barn som handlar om att leva med en förälder som har MS. Boken Benjamin ger föräldrar och barn möjlighet att läsa och diskutera tillsammans. Den berättar om hur det är att leva med en mamma som har MS och tar upp de många oförutsägbara sidorna av sjukdomen. Boken förklarar på ett enkelt sätt vad som händer med mamman och stöttar Benjamin känslomässigt. Detta skapar insikt och trygghet för Benjamin och han blir stolt över hur hans mamma övervinner de svårigheter hon ställs inför.

This book contains a selection of papers presented at the 10th International Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions, held in Dublin in 1982. Developments currently taking place in child psychiatry and clinical child psychology are represented, and in particular, the two themes of processes within families and evaluation of intervention reflect important aspects of research activities that have emerged recently.

Guided by theory, empirical research, and clinical experience, this demonstration tested a 12-session group intervention for 38 inner-city children who had lost a caregiver. The design of the group intervention was guided by the psychodynamic tradition of the sponsoring agency, themes from the bereavement literature, and findings from intervention research on bereaved children and adults. Attendance for the group intervention was high among those 29 children who completed posttests. The loss of the parent figure often had an impact on caregiving and living arrangements. Children rated themselves as significantly more depressed at pretest than their caregivers rated them, but at posttest this difference diminished. However, the majority of children remained depressed throughout the study. Pretest and posttest comparisons suggest that the treatment intervention may have enabled children to develop a more mature concept of death. Mixed outcomes and the methodological limitations of the study allow for multiple interpretations. Nevertheless, modest results reported here may encourage other clinical researchers to build on this early effort. Better understanding of how to treat bereaved children must await controlled, longitudinal research.

Abstract
PURPOSE:
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adultsfollowing the loss of a parent to cancer. METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss

medicinsk avhandling

Sammanfattning
Den här skriften handlar om hur anhöriga till barn och unga med flerfunktionsnedsättning har gjort för att ta vara på livets möjligheter. Du möter Ellen, 8 månader, Elvira, 3 år, Miles, 5 år, Diamanda, 6 år, Hannes, 13 år, Liv, 14 år och Kim, 21 år. Deras anhöriga berättar bland annat om vikten av att träffa andra i liknande situation, att våga skaffa syskon och att ta vara på sig själv som förälder för att förebygga psykisk och fysisk ohälsa. Men de berättar också om barnets behov av att förebygga andningsproblem och att som förälder behöva möta okunskap och fördomar om barnets livskvalitet. Vi får också veta hur de gått till väga för att skapa ett bra liv för hela familjen med hjälp av personlig assistans och särskilt boende.

Foto: Anna Pella

Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the perceived need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay 'citizen-carers'. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship.

In an ageing society, families may have an important role in the caretaking and well-being of the elderly. Demographic changes have an impact on the size and structure of families; one aspect is how intergenerational support is distributed when there is a need for support to both older and younger generations at the same time. Another vital aspect of the provision of care for the elderly is geographic proximity. This study is oriented towards the potential "both-end carers" i.e. persons who have grandchildren in potential need of care while still having living ageing parents. The incidence of having grandchildren and having living parents at age 55 and the proximity between generations is described using Swedish register data. The results show that the share of 55-year-olds who are grandparents decreased dramatically from 70% to 35% between 1990 and 2005. As expected, more 55-year-olds have living parents—a proportion that increased from 37% to 47% during this period. As a result of delayed childbearing among the children of these cohorts, the likelihood of belonging to a four-generation family among 55-year-olds has not increased, despite increased longevity. Furthermore, most individuals live within daily reach of their kin and no evidence was found of a trend of increasing geographic distances between generations.

OBJECTIVE:
The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den Heuvel's previous effect study showed positive effects of the same intervention program, but unlike our present study differences between the two support variants could not be measured.
METHODS:
Of 257 family caregivers who were included and randomly assigned to an intervention variant or a control group, 127 family caregivers completed the intervention in either the group program or the home visiting program.
RESULTS:
Evaluation data showed that both intervention variants had been helpful and feasible, but home visit participants missed peer contact and follow-up contacts were missed in both intervention programs. In comparison to the home visiting program, the group program participants showed more benefit especially with respect to informational and emotional components. Caregivers' preference for type of intervention revealed that both types of intervention had its supporters. Those that preferred the group program could be clearly characterised: they were burdened, lived with a more psychologically handicapped relative, were using active coping strategies more frequently or lived in a region which is considered to be more sociable.
CONCLUSION:
The present study adds extensively to van den Heuvel's effect study with respect to discriminative aspects of group and home intervention programs and their respective benefits for specific family caregiver groups.
PRACTICE IMPLICATIONS:
In order to suitably match an intervention type with specific caregiver characteristics the intervention provider should utilize caregiver self-selection or undertake professional screening of caregiver burden. Telephone contacts should be offered in addition to the interventions.

Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.

Abstract
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.

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

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

Man kan urskilja två ursprung till bildsemiotiken, dels ur försöker att avleda en modell ur studiet av enskilda bilder, som växer fram ur kritiken av Barthes första, enligt allakompetenta bedömare ganska misslyckade försök med utgångspunkt i en reklambild; och dels ur kritiken av Peirces ikonicitetsbegrepp hos Bierman, Lindekens och Eco och av det vardagliga bildbegreppet grundat på likhet hos Goodman, som också bygger påmånga missförstånd. I denna artikel diskuteras i viss mån den första traditionen, men huvuddelen ägnas åt den andra. En ny teori på fenomenologisk grundval angående den speciella form av ikonicitet som förekommer i bilder lägges fram, och denna ikonicitetkontrasteras med andra typer. En allmän indelning i primär och sekundär ikonicitet föreslages.

Man kan urskilja två ursprung till bildsemiotiken, dels ur försöker att avleda en modell ur studiet av enskilda bilder, som växer fram ur kritiken av Barthes första, enligt allakompetenta bedömare ganska misslyckade försök med utgångspunkt i en reklambild; och dels ur kritiken av Peirces ikonicitetsbegrepp hos Bierman, Lindekens och Eco och av det vardagliga bildbegreppet grundat på likhet hos Goodman, som också bygger påmånga missförstånd. I denna artikel diskuteras i viss mån den första traditionen, men huvuddelen ägnas åt den andra. En ny teori på fenomenologisk grundval angående den speciella form av ikonicitet som förekommer i bilder lägges fram, och denna ikonicitetkontrasteras med andra typer. En allmän indelning i primär och sekundär ikonicitet föreslages.

Aim: The overall aim was to create knowledge about what it means to live with bipolar
disorder from an existential perspective, both for individuals with the diagnosis and for
their close relatives.
Method: An existential perspective in this context entails that it is explored and
described from a lifeworld perspective of individuals who in various ways experience
that which is termed as bipolar disorder. The lifeworld phenomenological approach
Reflective Lifeworld Research (RLR) was used in the four empirical studies. Meaningoriented
interviews and analysis were conducted following the leading methodological
principles of the chosen scientific approach. A synthesis, based on lifeworld
hermeneutic existential philosophy, then presents how it is possible to understand the
perspective of individuals with bipolar disorder and their close relatives as a coherent
whole.
Findings and conclusions: A magnitude and complexity of experiencing, which means
that life with bipolar disorder is characterized by extra dimensions, specific tension and
contradictions, has been elucidated. Knowledge of the meaning of these aspects
enables for the persons with the illness and for their close relatives to understand, to
put words to, and to communicate how their life is and what they need, which in turn
enhances their ability to influence their lives. It also increases the opportunities for
professional caregivers to develop care, both in content and organization, so that it can
meet the actual needs of those concerned in an adequate way.
Living with bipolar disorder means so much more than the usual description with
changes between episodes of depression and mania. The diagnosis "bipolar disorder"
thus appears to be an inadequate label that only reflects the more obvious and visible
dimensions of the illness, while those that characterize life in its entirety remain
hidden.
The thesis also shows that the importance of the common everyday life of persons with
bipolar disorder and their close relatives should be highlighted as the most important
factor in a liveable existence. A change in the view of mental health care is thus
needed; a change that is characterized by consensus, collaboration and transparent
communication between the person with the illness, their close relatives and mental
health care. The common goal should be about meeting actual needs, and to
strengthen a profound connectedness in order to make everyday life more liveable.

Metoden blandade lärande nätverk har provats och utvärderats inom Nationellt kompetenscentrum Anhöriga. Rapport från Teknik för äldre.

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