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
相关论文
共 70 条
[1]  
Abbeduto L, 2004, AM J MENT RETARD, V109, P237, DOI 10.1352/0895-8017(2004)109<237:PWACIM>2.0.CO
[2]  
2
[3]  
[Anonymous], 2007, International Journal of Disability, Development and Education, DOI DOI 10.1080/10349120701488848
[4]  
[Anonymous], MONOGRAPHS SOC RES C
[5]   Thirty-six-month outcomes for families of children who have disabilities and participated in early intervention [J].
Bailey, DB ;
Hebbeler, K ;
Spiker, D ;
Scarborough, A ;
Mallik, S ;
Nelson, L .
PEDIATRICS, 2005, 116 (06) :1346-1352
[6]   Family outcomes in early intervention: A framework for program evaluation and efficacy research [J].
Bailey, DB ;
McWilliam, RA ;
Darkes, LA ;
Hebbeler, K ;
Simeonsson, RJ ;
Spiker, D ;
Wagner, M .
EXCEPTIONAL CHILDREN, 1998, 64 (03) :313-328
[7]   Discovering fragile X syndrome: Family experiences and perceptions [J].
Bailey, DB ;
Skinner, D ;
Sparkman, KL .
PEDIATRICS, 2003, 111 (02) :407-416
[8]   Co-occurring conditions associated with FMR1 gene variations:: Findings from a national parent survey [J].
Bailey, Donald B., Jr. ;
Raspa, Melissa ;
Olmsted, Murrey ;
Holiday, David B. .
AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2008, 146A (16) :2060-2069
[9]   Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis [J].
Bailey, Donald B., Jr. ;
Sideris, John ;
Roberts, Jane ;
Ieiatton, Deborah .
AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2008, 146A (06) :720-729
[10]   Maternal depression and developmental disability: Research critique [J].
Bailey, Donald B., Jr. ;
Golden, Robert N. ;
Roberts, Jane ;
Ford, Amy .
MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS, 2007, 13 (04) :321-329