Decision-making involvement, self-efficacy, and the relationship to transition readiness in youth with sickle cell disease

Abstract

Transition from pediatric to adult healthcare settings poses significant risks to morbidity and mortality for adolescents and young adults with sickle cell disease. Increasing transition readiness, the acquisition of disease-specific knowledge and self-management skills, has been proposed as strategy to improve health outcomes for adolescents and young adults (AYA) after transition. To date, few studies have looked at factors that may influence transition readiness, a measure of disease-specific knowledge and self-management, in AYAs with sickle cell disease. This limits healthcare providers' and researchers' abilities to develop interventions specific to the unique needs of the population. This dissertation study examined the relationships between decision-making involvement, self-efficacy of sickle cell disease self-management, and transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare settings. This study found that higher levels of expressive behaviors such as sharing opinions and ideas in decision-making were associated with higher levels of AYA healthcare responsibility. Self-efficacy was positively associated with transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility. Future research interventions that increase AYA involvement in decision-making regarding disease management, increase self-efficacy, and safely reduce parent involvement may positively influence their capacity for self-management.