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01-10-2009 | Original Paper

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

Auteurs: Scott D. Grosse, Alina L. Flores, Lijing Ouyang, James M. Robbins, John M. Tilford

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 5/2009

Abstract

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.

vorige artikel Feasibility of Adapting Multisystemic Therapy to Improve Illness Management Behaviors and Reduce Asthma Morbidity in High Risk African American Youth: A Case Series

volgende artikel Media Use and Adolescent Psychological Adjustment: An Examination of Gender Differences

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Titel: Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families
Auteurs: Scott D. Grosse
Alina L. Flores
Lijing Ouyang
James M. Robbins
John M. Tilford
Publicatiedatum: 01-10-2009
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 5/2009
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-009-9260-3

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