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The impact of having a sibling with an intellectual disability: parental perspectives in two disorders
- Authors:
- MULROY S., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 52(3), March 2008, pp.216-229.
- Publisher:
- Wiley
The potential effects on other children when there is a child with intellectual disability (ID) in the family are being increasingly recognized. This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents. The parents of 186 Western Australian children with Down syndrome and 141 Australian girls and women with Rett syndrome participated in the study. Patterns of reporting disadvantages and/or benefits were compared across a number of child and family variables (age, functional ability and birth order of the affected child, number of siblings and number of parents in the family home) and by socio-economic status as measured by the index of relative socio-economic disadvantage and by area of residence. Parents' responses to open-ended questions about the benefits and/or disadvantages for siblings of their child were analysed for themes. The majority of parents in the Rett syndrome and Down syndrome groups reported both disadvantages and benefits for siblings. In the Rett syndrome group, families from outer regional areas were the least likely to mention disadvantages and those with a smaller family more likely to note disadvantages. In both groups, more socio-economically advantaged families were more likely to report disadvantages. In the Down syndrome group, benefits were also more commonly reported by parents who were socio-economically advantaged, and by larger and two-parent families. Major disadvantages for siblings centred around parental and personal time constraints, relationships and socializing, restrictions, parental emotion and burden of helping. Major benefits were related to personality characteristics.
Adult siblings of individuals with Down syndrome versus with autism: findings from a large-scale US survey
- Authors:
- HODAPP R. M., URBANO R. C
- Journal article citation:
- Journal of Intellectual Disability Research, 51(12), December 2007, p.1018–1029.
- Publisher:
- Wiley
Using a national, web-based survey, in the United States this study compared adult siblings of individuals with Down syndrome to siblings of individuals with autism in terms of a potential ‘Down syndrome advantage’ and changes across age of the brother/sister with disabilities. Two groups were examined, siblings of persons with Down syndrome (n = 284) and with autism (n = 176). The Adult Sibling Questionnaire measured the number and length of contacts between siblings and their brothers/sisters with disabilities; the warmth, closeness and positiveness of the sibling relationship; and the sibling's overall levels of perceived health, depression and rewards of being a sibling. Compared with siblings of brothers/sisters with autism, siblings of brothers/sisters with Down syndrome showed closer, warmer sibling relationships, along with slightly better health, lower levels of depressive symptoms and more contacts. Across age groups of the brother/sister with disabilities, both groups showed lessened contacts, with less close sibling relationships occurring when brothers/sisters with disabilities were aged 30-44 years and 45 years and older (in Down syndrome) and 45 years and older (in autism). Within both groups, closer sibling relationships were associated with more frequent and lengthy contacts, brothers/sisters with disabilities who were better at maintaining friendships and had lower levels of behavioural/emotional problems, and siblings who felt themselves more rewarded by being a sibling to a brother/sister with disabilities. In line with earlier work on families of children with disabilities, this study shows an advantage for siblings of adults with Down syndrome, in terms of both sibling relationships and of slightly better health and lessened depressive symptoms. Both joint contacts and close sibling relationships do, however, differ when the brother/sister with disabilities is older. As the first generation of probable caregivers, siblings of persons with Down syndrome who are in their forties, fifties and sixties require increased research attention.
Telling children that they have a brother or sister with Down's Syndrome
- Author:
- HAMES Annette
- Journal article citation:
- British Journal of Learning Disabilities, 22(2), 1994, pp.62-65.
- Publisher:
- Wiley
The parents of 20 children with Down's Syndrome were interviewed to find out if, and how, they had told older siblings the diagnosis. The majority of parents agreed that other children should be told immediately, or as soon as they begin to ask questions about their younger brother or sister. This paper includes some quotes from parents, recalling how they had told siblings.
Siblings of individuals with autism or Down syndrome: effects on adult lives
- Authors:
- ORSMOND G.I., SELTZER M.M.
- Journal article citation:
- Journal of Intellectual Disability Research, 51(9), September 2007, pp.682-696.
- Publisher:
- Wiley
This study asks three research questions: (1) How do adult siblings of individuals with autism spectrum disorder (ASD) differ from siblings of individuals with Down syndrome (DS) in their assessment of the quality of the sibling relationship and their experience of growing up with a brother or sister with a disability? (2) Are there gender effects on the sibling relationship and sibling experience in these two groups? (3) Which factors are predictive of variation in the sibling relationship for siblings of adults with ASD or DS? Data from 154 siblings who participated in two linked longitudinal studies were used. Seventy-seven siblings with a brother or sister with ASD were matched by age and gender to 77 siblings with a brother or sister with DS. The siblings in each group were between 21 and 56 years of age and over half were sisters. Siblings completed questionnaires on instrumental and affective involvement with their brother or sister with ASD or DS, the impact of growing up with a brother or sister with a disability on their lives, and their coping skills and feelings of pessimism. Compared with the siblings of adults with DS, siblings of adults with ASD had less contact with their brother or sister, reported lower levels of positive affect in the relationship, felt more pessimistic about their brother or sister's future, and were more likely to report that their relationships with their parents had been affected. For siblings of adults with ASD, a closer sibling relationship was observed when the sibling had lower educational levels, lived closer to the brother or sister with ASD, used more problem-focused coping strategies, and when his or her brother or sister with ASD had higher levels of functional independence. In contrast, for siblings of adults with DS, a closer sibling relationship was observed when the sibling did not have children, had lower levels of education, lived closer to the brother or sister with DS, when he or she used more problem-focused coping, was less pessimistic about the brother or sister's future, and when his or her life had been impacted to a greater extent by growing up with a brother or sister with DS. The implications of these findings are discussed for future caregiving roles for siblings.
Eating behaviour and food choices in children with Down’s syndrome, autistic spectrum disorder or cri du chat syndrome and comparison groups of siblings: diet and preventive dentistry
- Authors:
- COLLINS Margaret S. R., et al
- Journal article citation:
- Journal of Learning Disabilities, 8(4), December 2004, pp.331-350.
- Publisher:
- Sage
High sugar foods and beverages consumed frequently are associated with increased dental caries and periodontal disease. Based on parental survey responses, the diets of children with Down’s syndrome, autistic spectrum disorder (ASD) and cri du chat syndrome and comparison groups of siblings were considered from an oral health perspective. In each group children who were frequent consumers of one high sugar food or beverage were likely to be high consumers of others, whilst other children were low consumers of high sugar foods and beverages. Children in middle and late childhood tended to consume more cariogenic foods and beverages than preschool children. For most children frequency of meal and snack consumption would allow little opportunity for remineralization of teeth.
Caring for Kathleen: a sister's story about Down's Syndrome and dementia
- Author:
- FRAY Margaret T
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2000
- Pagination:
- 44p.
- Place of publication:
- Plymouth
Biographical monograph on the aging and eventual decline and death of a woman with Down syndrome as told by her sister. Provides many insights in service barriers and successes, while also providing a vivid case example of how Alzheimer's disease affects a family carer of a person with an intellectual disability.
Family caregiving of aging adults with Down syndrome
- Authors:
- HODAPP Robert M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.181–189.
- Publisher:
- Wiley
Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, ageing adults with Down syndrome may present earlier—and possibly more severe and more health-related—caregiving challenges to their parents and siblings. As a field and as a society, the authors note that there is a need to promote revisions of family support policies and interventions; recognise the inter-relations of aeging-related changes and their effects; and anticipate how aeging-related changes in the brother–sister with Down syndrome and the parent(s) might affect sibling caregivers. (Edited publisher abstract)
Coping with the usual family diet : eating behaviour and food choices of children with Down's syndrome, autistic spectrum disorders or cri du chat syndrome and comparison groups of siblings
- Authors:
- COLLINS Margaret S. R., et al
- Journal article citation:
- Journal of Learning Disabilities, 7(2), June 2003, pp.137-155.
- Publisher:
- Sage
Children with learning disabilities have increased risk of delayed development of oral-motor, feeding and social skills. Questionnaires on the eating behaviour of children 2 to 18 years of age with Down's syndrome, autistic spectrum disorders (ASD) and cri du chat syndrome and their siblings were completed by their parents. Most children including the preschool children were reported to have some level of self-feeding skills. Chewing problems were reported for some children in all age groups, including not only children with a syndrome but also siblings of children with Down's syndrome and ASD. The lack of chewing skills resulted in parents feeding pureed or mashed food to their children. As no child in the study was under 2 years, the reported feeding skills were at best delayed and at worst deviant. Behavioural problems at meals and with diet were common, particularly in children with syndromes and especially in early childhood.
Down Syndrome: a resource handbook
- Editor:
- TINGEY Carol
- Publisher:
- Taylor and Francis
- Publication year:
- 1988
- Pagination:
- 209p., tables, bibliogs.
- Place of publication:
- London