Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families
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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.
KeywordsCaregiving Disability Quality of life Parental stress Time use
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.
- Joosten, J. (1979). Accounting for changes in family life of families with spina bifida children. Zeitschrift fur Kinderchirurgie, 28, 412–417.Google Scholar
- Maes, B., Broekman, T. G., Dosen, A., & Nauts, J. (2003). Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research, 47, 447–455. doi: 10.1046/j.1365-2788.2003.00513.x.PubMedCrossRefGoogle Scholar
- McHorney, C. A., Ware, J. E., Jr, & Raczek, A. E. (1993). The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31, 247–263. doi: 10.1097/00005650-199303000-00006.PubMedCrossRefGoogle Scholar
- Mulvihill, B. A., Wingate, M. S., Altarac, M., Mulvihill, F. X., Redden, D. T., Telfair, J., et al. (2005). The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama. Maternal and Child Health Journal, 9, S87–S97. doi: 10.1007/s10995-005-3860-3.PubMedCrossRefGoogle Scholar
- Oppenheimer, S. (2008). What is spina bifida? In M. Lutkenhoff (Ed.), Children with spina bifida: A parent’s guide (2nd ed., pp. 2–10). Washington, DC: American Psychological Association.Google Scholar
- Verhoef, M., Barf, H. A., Post, M. W. M., Van Asbeck, F. W. A., Gooskens, R. H. J. M., & Prevo, A. J. H. (2006). Functional independence among young adults with spina bifida, in relation to hydrocephalus and level of lesion. Developmental Medicine and Child Neurology, 48, 114–119. doi: 10.1017/S0012162206000259.PubMedCrossRefGoogle Scholar
- Walker, M., & Peterson, P. (2008). Why is neurosurgery necessary? In M. Lutkenhoff (Ed.), Children with spina bifida: A parent’s guide (2nd ed., pp. 49–67). Washington, DC: American Psychological Association.Google Scholar