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Raspa, M., Bailey, D., Bann, C., & Bishop, E. (2014). Modeling Family Adaptation to Fragile X Syndrome. American Journal on Intellectual and Developmental Disabilities, 119(1), 33-48. https://doi.org/10.1352/1944-7558-119.1.33
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
