The Experience of Adolescent Women Living with Spina Bifida Part I: Self-Concept and Family Relationships

Adolescent women with spina bifida (SB) face unique and diverse challenges. The purpose of this qualitative component of a larger mixed‐method study on adaptation was to heighten rehabilitation nurses' understanding of self‐concept and family relationships during adolescence. Interviews were conducted with 31 adolescent women and analyzed for themes. The women described a range of experiences, including challenges of typical adolescence, specific concerns about living with SB, school‐based stressors, and incidences of teasing and bullying. The overall self‐concept was primarily positive, despite the diverse stressors encountered. A significant source of strength was the close relationships with parents, although an undercurrent of tension related to independence was also expressed. Results from this study support the need for rehabilitation nurses to address not only the functional status but also the well‐being and psychosocial challenges of adolescent women with SB.