Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease.

BACKGROUND Transition to adult health care is a critical time for adolescents and young adults (AYAs) with sickle cell disease, and preparation for transition is important to reducing morbidity and mortality risks associated with transition. OBJECTIVE We explored the relationships between decision-making involvement, self-efficacy, health care responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition. METHODS This cross-sectional, correlational study was conducted with 50 family caregivers-AYAs dyads receiving care from a large comprehensive sickle cell clinic between October 2019 and February 2020. Participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire. Multiple linear regression was used to assess the relationships between decision-making involvement, self-efficacy, health care responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult health care. RESULTS Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA health care responsibility, those behaviors were inversely associated with feelings of overall transition readiness. Self-efficacy was positively associated with overall transition readiness but inversely related to AYA health care responsibility. Parent involvement was negatively associated with AYA health care responsibility and overall transition readiness. DISCUSSION While increasing AYAs' decision-making involvement may improve AYAs' health care responsibility, it may not reduce barriers of feeling unprepared for the transition to adult health care. Facilitating active AYA involvement in decision-making regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.