Families of Adults with Autism

book review

Improved prognosis for congenital nephrotic syndrome of the Finnish type in Irish families

Congenital nephrotic syndrome of the Finnish type is a rare autosomal recessive disease with a high infant mortality without aggressive treatment. The biochemical basis of the disease is not understood fully but the disease locus has been mapped recently to chromosome 19q12-q13.1 in Finnish families. This paper describes the clinical features and outcome of 20 patients in Ireland with congenital nephrotic syndrome of the Finnish type who have presented since 1980. Before 1987, all infants died by the age of 3 years. After the introduction of daily intravenous albumin infusion, nutritional support, elective bilateral nephrectomy, and renal transplantation, mortality in the past decade has fallen to 30%, with no deaths in the past five years. Genetic linkage analysis was performed in six families in whom DNA was available and the locus responsible was mapped to the same region on chromosome 19 as in Finnish families, suggesting that Irish families share the same disease locus.

Constrained adoptive parenthood and family transition: Adopters' experience of unplanned birth family contact in adolescence

Adoption policy in the UK emphasizes its role in providing secure, permanent relationships to children in care who are unable to live with their birth families. Adoptive parents are crucial in providing this life-long, stable experience of family for these vulnerable children. This paper explores the experience of adoptive parenthood in the context of changes to adoptive kinship relationships brought about by new, unplanned contact with birth family during their child's middle adolescence. This contact was initiated via informal social networks and/or social media, with older birth siblings instrumental in negotiating renewed relationships. The contact precipitated a transition in adoptive family life resulting in emotional challenges and changes in parent/child relationships, which were experienced as additional to the normative transitions expected during adolescence. Parental concern as a dominant theme was founded in the child and birth sibling's stage of adolescence, coupled with constraints on adoptive parenthood imposed by the use of social media, by perceived professional attitudes and by parental social cognitions about the importance of birth ties. Adoptive parents' accounts are interpreted with reference to family life-cycle theory and implications are suggested for professional support of adoptive kinship relationships.

Identifying Economically Vulnerable Groups as the Economic Crisis Emerged

A frequent refrain during recent debates on welfare cuts and tax increases has related to the need to "protect the vulnerable". However, it is far from clear that a consensus exists on which individuals or groups are to be included under this heading with a consequent lack of clarity for the policy implications of pursuing this goal. In this paper, operating with a conception of social exclusion that incorporates notions of dynamics and multidimensionality, we make use of EU-SILC 2008 data for Ireland to clarify the distinction between income poverty and economic vulnerability. We then proceed to consider the relationship between these outcomes and multiple deprivation, financial pressures and perceptions of recent and future economic prospects. Our analysis is then extended to compare patterns of risk for poverty and vulnerability in relation to key socio-economic groups. Finally, we will consider the relationship between poverty and vulnerability and the distribution of welfare dependence. Our analysis suggests that the vulnerable but non-poor group may need to be a key focus of policy attention in the future.

Caregiving and its impact on families of the terminally ill

Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101 (67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipient's life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.

Identifying educational needs in end-of-life care for staff and families of residents in care facilities.

AIM: the purpose of this article is to describe educational needs in end-of-life (EoL) care for staff and families of residents in long-term care (LTC) facilities in the province of Ontario, Canada. Barriers to providing end-of-life care education in LTC facilities are also identified. DESIGN, SETTING AND PARTICIPANTS: cross-sectional survey of directors of care in all licensed LTC facilities in the province of Ontario, Canada. RESULTS: directors of care from 426 (76.9% response rate) licensed LTC facilities completed a postal-survey questionnaire. Topics identified as very important for staff education included pain and symptom management and communication with family members about EoL care. Priorities for family education included respecting the residents' expressed wishes for care and communication about EoL care. Having sufficient institutional resources was identified as a major barrier to providing continuing education to both staff and families. CONCLUSION: through examining educational needs in EoL care this study identified an environment of inadequate staffing and over-burdened care providers. The importance of increased staffing concomitant with education is a priority for LTC facilities.

Educating families about end-of-life care in advanced dementia:Acceptability of a Canadian family booklet to nurses from Canada, France, and Japan

Background: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/ palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. Methods: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). Results: Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. Conclusion: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

A Randomized Controlled Trial of Interventions to Promote Adjustment in Children With Congenital Heart Disease Entering School and Their Families

Objective: To report on a randomized controlled trial of psychological interventions to promote adjustment in children with congenital heart disease and their families.
Method: Following baseline assessment, 90 children (aged 4–5 years) and their families were randomly assigned to an Intervention or Control group before entering school. 68 (76%) were retained at 10-month follow-up.
Results: Gains were observed on measures of maternal mental health and family functioning. Although no differences were found on measures of child behavior at home or school, children in the intervention group were perceived as “sick” less often by their mother and missed fewer days from school. A regression model, using baseline measures as predictors, highlighted the importance of maternal mental health, worry and child neurodevelopmental functioning for child behavioral outcomes almost a year later.
Conclusions: The intervention promoted clinically significant gains for the child and family. The program is of generalizable significance.