Condition self-management in pediatric spina bifida: A longitudinal investigation of medical adherence, responsibility-sharing, and independence skills

Objective: This study aimed to evaluate rates of medical adherence, responsibility, and independence skills across late childhood and adolescence in youth with spina bifida (SB) and to explore associations among these disease self-management variables. Method: 111 youth with SB, their parents, and a health professional participated at two time points. Informants completed questionnaires regarding medical adherence, responsibility-sharing, and child independence skills. Results: Youth gained more responsibility and independence skills across time, although adherence rates did not follow a similar trajectory. Increased child medical responsibility was related to poorer adherence, and father-reported independence skills were associated with increased child responsibility. Conclusions: This study highlights medical domains that are the most difficult for families to manage (e.g., skin checks). Although youth appear to gain more autonomy across time, ongoing parental involvement in medical care may be necessary to achieve optimal adherence across adolescence.