Having spina bifida requires considerable self-management. For example, it is essential for youth with the disorder develop self-management skills to combat vulnerability, achieve self-sufficiency, and make the transition to adulthood. The purpose of a qualitative study by Sawin and coworkers was to describe the experience of self-management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self-management activities--knowledge, skills, and aspirations; (2) dance of individuation--parental impact on self-management; and (3) advocacy within self-management--confronting discrimination and stigma.

WHAT THE STUDY MAY MEAN TO YOU AS A HEALTH CARE PROVIDER: The findings indicate that assessment and interventions to enhance self-management in adolescent women with SB are critical for supporting the range of condition-related and life skills needed for a transition to adulthood and independent living.

WHAT THE STUDY MAY MEAN TO YOU AS A PATIENT: Spina Bifida, a spinal neural defect, often requires lifetime attention. Others may help a child with the disorder, but it becomes imperative that as the youngster’s approaches adolescent, every effort be made to teach the individual self-management skills that he or she can perform. The result will not only be greater independence, but a higher quality of life for that patient.

KJ Sawin et al. The experience of self-management in adolescent women with spina bifida. Rehabilitation Nursing, 2009;34:26-38.