Advertisement

Journal of Child and Family Studies

, Volume 18, Issue 5, pp 574–581 | Cite as

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

  • Scott D. Grosse
  • Alina L. Flores
  • Lijing Ouyang
  • James M. Robbins
  • John M. Tilford
Original Paper

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.

Keywords

Caregiving Disability Quality of life Parental stress Time use 

Notes

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.

References

  1. Barnett, W. S., & Boyce, G. C. (1995). Effects of children with Down syndrome on parents’ activities. American Journal of Mental Retardation, 100, 115–127.PubMedGoogle Scholar
  2. Busch, S. H., & Barry, C. L. (2007). Mental health disorders in childhood: Assessing the burden on families. Health Affairs, 26, 1088–1095. doi: 10.1377/hlthaff.26.4.1088.PubMedCrossRefGoogle Scholar
  3. Cameron, J. I., Herridge, M. S., Tansey, C. M., McAndrews, M. P., & Cheung, A. M. (2006). Well-being in informal caregivers of survivors of acute respiratory distress syndrome. Critical Care Medicine, 34, 81–86. doi: 10.1097/01.CCM.0000190428.71765.31.PubMedCrossRefGoogle Scholar
  4. Carr, J., Pearson, A., & Halliwell, M. (1983). The effect of disability on family life. Zeitschrift fur Kinderchirurgie, 38(Suppl.), 103–106.PubMedGoogle Scholar
  5. Crowe, T. K., & Florez, S. I. (2006). Time use of mothers with school-age children: A continuing impact of a child’s disability. The American Journal of Occupational Therapy, 60, 194–203.PubMedGoogle Scholar
  6. Groessl, E. J., Kaplan, R. M., Rejeski, W. J., Katula, J. A., King, A. C., Frierson, G., et al. (2007). Health-related quality of life in older adults at risk for disability. American Journal of Preventive Medicine, 33, 214–218. doi: 10.1016/j.amepre.2007.04.031.PubMedCrossRefGoogle Scholar
  7. Herman, S. E., & Marcenko, M. O. (1997). Perceptions of services and resources as mediators of depression among parents of children with developmental disabilities. Mental Retardation, 35, 458–467. doi: 10.1352/0047-6765(1997)035<0458:POSARA>2.0.CO;2.PubMedCrossRefGoogle Scholar
  8. Hughes, C. B., & Caliandro, G. (1996). Effects of social support, stress, and level of illness on caregiving of children with AIDS. Journal of Pediatric Nursing, 11, 347–358. doi: 10.1016/S0882-5963(96)80079-0.PubMedCrossRefGoogle Scholar
  9. Joosten, J. (1979). Accounting for changes in family life of families with spina bifida children. Zeitschrift fur Kinderchirurgie, 28, 412–417.Google Scholar
  10. Joseph, S., & Linley, P. A. (2006). Growth following adversity: Theoretical perspectives and implications for clinical practice. Clinical Psychology Review, 26, 1041–1053. doi: 10.1016/j.cpr.2005.12.006.PubMedCrossRefGoogle Scholar
  11. Kaplan, R. M., Ganiats, T. G., Sieber, W. J., & Anderson, J. P. (1998). The quality of well-being scale: Critical similarities and differences with SF-36. International Journal for Quality in Health Care, 10, 509–520. doi: 10.1093/intqhc/10.6.509.PubMedCrossRefGoogle Scholar
  12. Kolin, I., Scherzer, A., New, B., & Garfield, M. (1971). Studies of the school-age child with meningomyelocele: Social and emotional adaptation. The Journal of Pediatrics, 78, 1013–1019. doi: 10.1016/S0022-3476(71)80432-8.PubMedCrossRefGoogle Scholar
  13. Kronenberger, W. G., & Thompson, R. J., Jr. (1992). Medical stress, appraised stress, and the psychological adjustment of mothers of children with myelomeningocele. Journal of Developmental and Behavioral Pediatrics, 13, 405–411. doi: 10.1097/00004703-199212000-00004.PubMedCrossRefGoogle Scholar
  14. Kuster, P. A., & Merkle, C. J. (2004). Caregiving stress, immune function, and health: Implications for research with parents of medically fragile children. Issues in Comprehensive Pediatric Nursing, 27, 257–276. doi: 10.1080/01460860490884165.PubMedCrossRefGoogle Scholar
  15. Loebig, M. (1990). Mothers’ assessments of the impact of children with spina bifida on the family. Maternal-Child Nursing Journal, 19, 251–264.PubMedGoogle Scholar
  16. Macias, M. M., Saylor, C. F., Rowe, B. P., & Bell, N. L. (2003). Age-related parenting stress differences in mothers of children with spina bifida. Psychological Reports, 93, 1223–1232.PubMedGoogle Scholar
  17. 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
  18. Manuel, J., Naughton, M. J., Balkrishnan, R., Paterson Smith, B., & Koman, L. A. (2003). Stress and adaptation in mothers of children with cerebral palsy. Journal of Pediatric Psychology, 28, 197–201. doi: 10.1093/jpepsy/jsg007.PubMedCrossRefGoogle Scholar
  19. Martin, P. (1975). Marital breakdown in families of patients with spina bifida cystica. Developmental Medicine and Child Neurology, 17, 757–764.PubMedGoogle Scholar
  20. 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
  21. Meltzer, L. J., & Mindell, J. A. (2006). Impact of a child’s chronic illness on maternal sleep and daytime functioning. Archives of Internal Medicine, 166, 1749–1755. doi: 10.1001/archinte.166.16.1749.PubMedCrossRefGoogle Scholar
  22. 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
  23. 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
  24. Preis, K., Swiatkowska-Freund, M., & Janczewska, I. (2005). Spina bifida-a follow-up study of neonates born from 1991 to 2001. Journal of Perinatal Medicine, 33, 353–356. doi: 10.1515/JPM.2005.062.PubMedCrossRefGoogle Scholar
  25. Pyne, J. M., French, M., McCollister, K., Tripathi, S., Rapp, R., & Booth, B. (2008). Preference-weighted health-related quality of life measures and substance use disorder severity. Addiction (Abingdon, England), 103, 1320–1329. doi: 10.1111/j.1360-0443.2008.02153.x.Google Scholar
  26. Pyne, J. M., Sullivan, G., Kaplan, R., & Williams, D. K. (2003). Comparing the sensitivity of generic effectiveness measures with symptom improvement in persons with schizophrenia. Medical Care, 41, 208–217. doi: 10.1097/00005650-200302000-00003.PubMedCrossRefGoogle Scholar
  27. Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626–e636. doi: 10.1542/peds.2004-1689.PubMedCrossRefGoogle Scholar
  28. Stewart, M. J., Ritchie, J. A., McGrath, P., Thompson, D., & Bruce, B. (1994). Mothers of children with chronic conditions: Supportive and stressful interactions with partners and professionals regarding caregiving burdens. Canadian Journal of Nursing Research, 26, 61–82.PubMedGoogle Scholar
  29. Taanila, A., Kokkonen, J., & Jarvelin, M. R. (1996). The long-term effects of children’s early-onset disability on marital relationships. Developmental Medicine and Child Neurology, 38, 567–577.PubMedCrossRefGoogle Scholar
  30. Tew, B. J., Laurence, K. M., Payne, H., & Rawnsley, K. (1977). Marital stability following the birth of a child with spina bifida. The British Journal of Psychiatry, 131, 79–82. doi: 10.1192/bjp.131.1.79.PubMedCrossRefGoogle Scholar
  31. Tilford, J. M., Grosse, S. D., Robbins, J. M., Pyne, J. M., Cleves, M. A., & Hobbs, C. A. (2005). Health state preference scores of children with spina bifida and their caregivers. Quality of Life Research, 14, 1087–1098. doi: 10.1007/s11136-004-3305-2.PubMedCrossRefGoogle Scholar
  32. Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal of Mental Retardation, 112, 261–274. doi: 10.1352/0895-8017(2007)112[261:DIFOCW]2.0.CO;2.PubMedCrossRefGoogle Scholar
  33. 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
  34. Vermaes, I. P. R., Janssens, J. M. A. M., Bosman, A. M. T., & Gerris, J. R. M. (2005). Parents’ psychological adjustment in families of children with spina bifida: A meta-analysis. Biomed Central Pediatrics, 5, 32–54.PubMedGoogle Scholar
  35. 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

Copyright information

© US Government 2009

Authors and Affiliations

  • Scott D. Grosse
    • 1
  • Alina L. Flores
    • 1
  • Lijing Ouyang
    • 1
  • James M. Robbins
    • 2
  • John M. Tilford
    • 2
  1. 1.National Center on Birth Defects and Developmental DisabilitiesCenters for Disease Control and PreventionAtlantaUSA
  2. 2.Center for Applied Research and Evaluation, College of MedicineUniversity of Arkansas for Medical Sciences and Arkansas Children’s HospitalLittle RockUSA

Personalised recommendations