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

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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.

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Acknowledgments

We appreciate helpful comments received from Christine Prue and Kevin Moran as well as two anonymous reviewers. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

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Authors and Affiliations

  1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Rd, MS E-88, Atlanta, GA, 30333, USA

    Scott D. Grosse, Alina L. Flores & Lijing Ouyang

  2. Center for Applied Research and Evaluation, College of Medicine, University of Arkansas for Medical Sciences and Arkansas Children’s Hospital, Little Rock, AR, USA

    James M. Robbins & John M. Tilford

Authors
  1. Scott D. Grosse
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  2. Alina L. Flores
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  3. Lijing Ouyang
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  4. James M. Robbins
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  5. John M. Tilford
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Correspondence to Scott D. Grosse.

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Grosse, S.D., Flores, A.L., Ouyang, L. et al. Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families. J Child Fam Stud 18, 574–581 (2009). https://doi.org/10.1007/s10826-009-9260-3

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  • DOI: https://doi.org/10.1007/s10826-009-9260-3

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