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ERIC Number: EJ911878
Record Type: Journal
Publication Date: 2010-Dec
Pages: 14
Abstractor: As Provided
Reference Count: 0
ISSN: ISSN-1934-9556
Life and Death of a Child with Down Syndrome and a Congenital Heart Condition: Experiences of Six Couples
Reilly, Deirdre; Huws, Jaci; Hastings, Richard; Vaughan, Frances
Intellectual and Developmental Disabilities, v48 n6 p403-416 Dec 2010
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.
American Association on Intellectual and Developmental Disabilities. P.O. Box 7065, Lawrence, KS 66044-7065. Tel: 785-843-1235; Fax: 785-843-1274; e-mail:; Web site:
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A