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

Abstract

Background: Transition to adult healthcare 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, healthcare 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, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare.Results: Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA healthcare 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 healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility and overall transition readiness.Discussion: While increasing AYAs' decision-making involvement may improve AYAs' healthcare responsibility, it may not reduce barriers of feeling unprepared for the transition to adult healthcare. Facilitating active AYA involvement in decisionmaking regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.

Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention

“…However, this is the first study, to our knowledge, that examines the perspectives of AYA-SCD and their clinicians on the role of video games in optimizing the successful transition from pediatric to adult care. In addition, this study identified several key determinants to effective self-efficacy and SDM, which are key to AYA-SCD transition success and taking responsibility for their health care 36,37 . Understanding the role of SDM in AYA-SCD is essential in developing interventions that appropriately address the unique challenges that AYA-SCD face, particularly related to stigma and inablilty to engage due to disease complications like pain.…”

“…The transition from pediatric to adult care in children with chronic diseases is well-recognized as a critical window because it represents the intersection of normal adolescent development, change in health care access and increased clinical manifestations of disease 4–6 . Hallmarks of transition readiness among AYA-SCD include self-efficacy, that is, patients’ belief in their ability to manage their disease, active participation in shared decision-making (SDM), and adequate disease-specific knowledge 7–9 . However, there is limited data on core determinants of the successful engagement of AYA-SCD in decision-making.…”

“…[4][5][6] Hallmarks of transition readiness among AYA-SCD include self-efficacy, that is, patients' belief in their ability to manage their disease, active participation in shared decision-making (SDM), and adequate disease-specific knowledge. [7][8][9] However, there is limited data on core determinants of the successful engagement of AYA-SCD in decision-making. In addition, despite the evidence that the transition period is a high-risk time for AYA-SCD, there is a paucity of interventions that target skills necessary to optimize the transition for AYA-SCD.…”

The genogram as a recruitment tool for identifying primary caregivers of youth living with sickle cell disease preparing for transition

“…The original study from which these data were collected used a convenience sample of AYA living with sickle cell disease and their family caregivers who were recruited from a large, comprehensive sickle cell disease clinic at an academic hospital in Washington, DC. There were 25 adolescents, 25 young adults and 50 family caregivers recruited for the original study (Varty et al, 2022). A power analysis was conducted for the original study, but it was not conducted for this secondary analysis due to the design.…”

“…The original study's purpose was to explore the relationships between decision‐making involvement, self‐efficacy, healthcare responsibility and overall transition readiness from both the perspective of the AYA living with sickle cell disease and their family caregiver (Varty et al, 2022). It was conducted between October 2019 and February 2020 and was guided by the Individual and Family Self‐Management Theory.…”