The Experience of Self-Management in Adolescent Women with Spina Bifida

It is essential for youth with chronic health conditions like spina bifida (SB) to develop self‐management skills to combat vulnerability, achieve self‐sufficiency, and transition to adulthood. The purpose of this qualitative study 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. 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.