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Life and death of a child with down syndrome and a congenital heart condition : experiences of six couples
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Reilly, Deirdre, Huws, Jaci, Hastings, Richard P. and Vaughan, Frances (2010) Life and death of a child with down syndrome and a congenital heart condition : experiences of six couples. Intellectual and Developmental Disabilities, Volume 48 (Number 6). pp. 403-416. doi:10.1352/1934-9556-48.6.403
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Official URL: http://dx.doi.org/10.1352/1934-9556-48.6.403
Abstract
Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child (“We had to make a decision”); ways couples coped when bereaved (“We weren't really going through it together”); and ripples from the child's life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships.
| Item Type: | Journal Article | ||||
|---|---|---|---|---|---|
| Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||
| Journal or Publication Title: | Intellectual and Developmental Disabilities | ||||
| Publisher: | American Association on Intellectual and Developmental Disabilities | ||||
| ISSN: | 1934-9491 | ||||
| Official Date: | December 2010 | ||||
| Dates: |
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| Volume: | Volume 48 | ||||
| Number: | Number 6 | ||||
| Page Range: | pp. 403-416 | ||||
| DOI: | 10.1352/1934-9556-48.6.403 | ||||
| Status: | Peer Reviewed | ||||
| Publication Status: | Published | ||||
| Access rights to Published version: | Restricted or Subscription Access |
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