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J Pediatr Nurs. 2007 Apr;22(2):116-28.

Families of children with Down syndrome: responding to "a change in plans" with resilience.

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Carolina Center for Genome Sciences, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.


The purpose of the present investigation, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to describe maternal perceptions of parental and family adaptation in families raising a child with Down syndrome, and (b) to examine linkages between family demands, family resources, family problem solving and coping, and family adaptation in families of children with Down syndrome. Seventy-six mothers completed mailed questionnaires. Seventy percent of the mothers rated their family's overall functioning as either a 4 or a 5 on a 5-point scale (1 = poor; 5 = excellent). In their written comments, most mothers reported that their family was doing well or very well. Three family variables (i.e., family demands, family resources, and family problem-solving communication) were significantly associated with family adaptation. These results provide support for the belief that many families of children with Down syndrome respond to "a change of plans" with resilience. That is, they are able to endure, survive, and even thrive in the face of ongoing challenges associated with raising a child with Down syndrome.

[Indexed for MEDLINE]

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