Kathleen Sawin is professor and research chair for the Nursing of Children, a position jointly sponsored by the University of Wisconsin-Milwaukee and Children's Hospital of Wisconsin. At the time this research was conducted, she was an associate professor at the School of Nursing, Virginia Commonwealth University and pediatric nurse practitioner in the Spina Bifida Program at Children's Hospital in Richmond, VA.
The Experience of Parenting an Adolescent with Spina Bifida
Version of Record online: 10 JUL 2012
2003 Association of Rehabilitation Nurses
Volume 28, Issue 6, pages 173–185, November-December 2003
How to Cite
Sawin, K. J., Bellin, M. H., Roux, G., Buran, C., Brei, T. J. and Fastenau, P. S. (2003), The Experience of Parenting an Adolescent with Spina Bifida. Rehabilitation Nursing, 28: 173–185. doi: 10.1002/j.2048-7940.2003.tb02057.x
- Issue online: 10 JUL 2012
- Version of Record online: 10 JUL 2012
- spina bifida;
Parents of adolescents with spina bifida (SB) face unique challenges of which they may not be aware. The purpose of this study was to heighten awareness of the challenge of parenting such adolescents. This enhanced understanding can help rehabilitation professionals optimize their interventions with families. In this qualitative study, which was part of a larger mixed-method descriptive investigation exploring adaptation by adolescents with SB, we used content analysis to evaluate 20 parent interviews for common domain, themes, and subthemes. The analysis yielded four major domains: (a) daily life experiences, (b) the dance of individuation, (c) reflections on parenting, and (d) practice suggestions for healthcare professionals. Overall, experiences of the parents were positive. Parents described meeting daily demands and balancing independence-dependence needs with the adolescent as major challenges. Rehabilitation professionals must provide guidance to foster autonomy, decision making, cognitive skill building, and coping skills to help parents and adolescents manage independence-dependence issues and multiple life demands.