Family experiences associated with a child's diagnosis of fragile X or down syndrome: Evidence for disruption and resilience

Julie Poehlmann, Melissa Clements, Leonard J Abbeduto, Venous Farsad

Research output: Contribution to journalArticle

69 Scopus citations

Abstract

Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.

Original languageEnglish (US)
Pages (from-to)255-267
Number of pages13
JournalMental Retardation
Volume43
Issue number4
DOIs
StatePublished - Aug 2005
Externally publishedYes

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ASJC Scopus subject areas

  • Rehabilitation
  • Health Professions(all)
  • Education

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