ERIC Number: EJ852964
Record Type: Journal
Publication Date: 2009-Oct
Abstractor: As Provided
Reference Count: N/A
Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families
Grosse, Scott D.; Flores, Alina L.; Ouyang, Lijing; Robbins, James M.; Tilford, John M.
Journal of Child and Family Studies, v18 n5 p574-581 Oct 2009
The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared between the groups and by level of lesion (sacral, lower lumbar, and upper lumbar/thoracic). We performed linear and logistic regression analysis to test the associations controlling for other characteristics. Among caregivers of children with spina bifida, the average number of hours of sleep was significantly less than reported by other caregivers and was associated with lesion level among children less than 7 years of age. Significant associations, often varying by child age, were also found for the caregiver's reports of lower Quality of Well-Being (QWB) score, often feeling blue, rarely feeling happy, fair or poor health, lack of leisure days, and not hosting friends, but no significant association was found with not visiting friends. The intensive long-term care required by children with spina bifida, particularly by those with higher lesions, can negatively impact caregiver health and well-being. Support for these caregivers is needed.
Descriptors: Caregivers, Congenital Impairments, Child Rearing, Well Being, Parents, Parent Attitudes, Parent Child Relationship, Interviews, Comparative Analysis, Sleep, Family Environment, Age Differences, Quality of Life, Psychological Patterns, Physical Health, Leisure Time, Friendship
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Publication Type: Journal Articles; Reports - Evaluative
Education Level: N/A
Authoring Institution: N/A
Identifiers - Location: Arkansas