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.
Melissa
M
Raspa
Donald B
DB
Bailey
Carla
C
Bann
Ellen
E
Bishop
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003625:Data Collection; D005192:Family Health; D005260:Female; D005600:Fragile X Syndrome / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D016487:Parenting / Q000523:psychology; D010290:Parents / Q000523:psychology*; D011594:Psychometrics; D011788:Quality of Life; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*