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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.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson