Development and clinical implementation of a care guideline to support self-management and responsibility transition in adolescents and young adults with biliary atresia.

OBJECTIVE: This study developed, refined, and implemented a care guideline for adolescents and young adults (AYAs) with biliary atresia surviving with their native livers and their parents, based on a responsibility transition process model. We evaluated its clinical usefulness and identified challenges related to sustainable implementation. This study extends a previously developed responsibility transition model by translating it into a clinically implemented guideline and examining its real-world applicability. METHODS: An implementation-focused, multiphase mixed-methods design was used. Phase 1 involved drafting a care guideline addressing developmental stages, daily life adjustment, parental role changes, and potential future liver transplantation. Phase 2 comprised expert reviews by five pediatric nursing professionals. In Phase 3, three experienced outpatient nurses implemented the guideline with six AYA-parent dyads (AYAs aged 15-22 years) over 12 months. Nurse group interviews were qualitatively analyzed, and transition readiness was assessed before and after the intervention. RESULTS: Qualitative analysis identified four categories, revealing usefulness and challenges as intertwined in daily practice. Descriptive questionnaire findings showed relatively stable knowledge scores, whereas behavior scores tended to decline among both AYAs and parents over the 12-month period. Guideline usefulness was perceived as a dynamic implementation process shaped by facilitating and constraining factors operating at individual, team, and organizational levels. CONCLUSION: This study translated a responsibility transition process model into an implementable care guideline and demonstrated its feasibility within routine pediatric outpatient care. Contextual barriers to sustained use, including workload, role clarity, and organizational integration, were identified, providing directions for future refinement and broader application to AYAs with other childhood-onset chronic conditions.