Swipe om te navigeren naar een ander artikel
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.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
Barnett, W. S., & Boyce, G. C. (1995). Effects of children with Down syndrome on parents’ activities. American Journal of Mental Retardation, 100, 115–127. PubMed
Carr, J., Pearson, A., & Halliwell, M. (1983). The effect of disability on family life. Zeitschrift fur Kinderchirurgie, 38(Suppl.), 103–106. PubMed
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. PubMed
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. PubMedCrossRef
Joosten, J. (1979). Accounting for changes in family life of families with spina bifida children. Zeitschrift fur Kinderchirurgie, 28, 412–417.
Loebig, M. (1990). Mothers’ assessments of the impact of children with spina bifida on the family. Maternal-Child Nursing Journal, 19, 251–264. PubMed
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. PubMed
Martin, P. (1975). Marital breakdown in families of patients with spina bifida cystica. Developmental Medicine and Child Neurology, 17, 757–764. PubMed
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. PubMedCrossRef
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.
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.
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. PubMed
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. PubMedCrossRef
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. PubMedCrossRef
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. PubMed
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.
- Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families
Scott D. Grosse
Alina L. Flores
James M. Robbins
John M. Tilford
- Springer US