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Am J Intellect Dev Disabil. 2014 Jan;119(1):33-48. doi: 10.1352/1944-7558-119.1.33.

Modeling family adaptation to fragile X syndrome.


Using data from a survey of 1,099 families who have a child with Fragile X syndrome, we examined adaptation across 7 dimensions of family life: parenting knowledge, social support, social life, financial impact, well-being, quality of life, and overall impact. Results illustrate that although families report a high quality of life, they struggle with areas such as social support, social life, and parenting knowledge. Path analysis revealed that child and family factors play a role in adaptation, but family resources and social supports moderated their effect on quality of life, well-being, and overall impact. The interrelationship among multiple aspects of family life should be examined to improve family resiliency.

[Indexed for MEDLINE]

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