Process Model for Transitioning Care Responsibility to Adolescents and Young Adults with Biliary Atresia: A Secondary and Integrative Analysis.

Abstract

Background/Objectives: This study conducted a secondary and integrative analysis of qualitative data on adolescents and young adults (AYAs) with biliary atresia who survive with their native livers. These individuals struggle with independence and self-care due to prolonged parental involvement. Prior studies have insufficiently clarified how AYAs and parents jointly navigate daily responsibility transitions during this period. Therefore, we aimed to elucidate this process and develop a practical model to support nursing care. Methods: Semi-structured interview data from eight adolescent-parent dyads (one male and seven females, aged 17-25; one father and seven mothers, aged 40-60) were reanalyzed using the modified grounded theory approach. By reframing the analytical focus on dyadic interactions, four transition phases were identified, which were then integrated with the findings of two prior studies to construct an integrative process model. Results: The transition comprised four phases: (1) parent-led recuperation, (2) a vicious cycle of control and rebellion, (3) passing the axis of responsibility, and (4) aligning the parent-child rhythm to create a patient-centered life. The transition processes were shaped by changes in cognition and behavior. The model illustrates mutual adaptation through communication, negotiation, and reflection, identifying opportunities for nursing intervention. Conclusions: This process model offers a practical framework for nurses to assess readiness for care transitions, support transitional role shifts, and co-develop care strategies. The model provides insights into relationship-based communication and shared decision-making in transitional care by capturing the relational dynamics between AYAs and their parents.