Modeling Family Adaptation to Fragile X Syndrome

被引:21
作者
Raspa, Melissa [1 ]
Bailey, Donald B., Jr. [1 ]
Bann, Carla [1 ]
Bishop, Ellen [1 ]
机构
[1] RTI Int, Res Triangle Pk, NC 27709 USA
来源
AJIDD-AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES | 2014年 / 119卷 / 01期
关键词
Fragile 'X syndrome; quality of life; social support; well-being; EARLY INTERVENTION; ABERRANT BEHAVIOR; NATIONAL PROFILE; YOUNG-CHILDREN; DOWN-SYNDROME; MOTHERS; DISABILITIES; PARENTS; STRESS; AUTISM;
D O I
10.1352/1944-7558-119.1.33
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
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.
引用
收藏
页码:33 / 48
页数:16
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