A successful transition from pediatric to adult care is crucial for adolescents and young adults (AYAs) living with sickle cell disease. Preparation for this transition is key to reducing the morbidity and mortality risks they could potentially face later in life.
Researchers at the University of Missouri conducted a cross-sectional, correlational study to explore the relationship among decision-making involvement, health care responsibility, self-efficacy, and how ready overall AYAs with sickle cell disease feel before transitioning to adult care.
The researchers identified 50 family caregivers-AYAs dyads who received care from a large sickle cell clinic between October 2019 and February 2020. All study participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire.
Ultimately, the researchers found that AYAs who were more likely to share ideas and opinions in decision-making had higher levels of AYA health care responsibility but felt less ready overall to transition to adult care. In contrast, AYAs with greater self-efficacy felt more ready overall to transition to adult care but had lower levels of AYA health care responsibility. Finally, AYAs with greater parental involvement felt less ready overall to transition to adult care and also had lower levels of AYA health care responsibility.
This study demonstrates the complex relationship among decision-making involvement, health care responsibility, self-efficacy, and how ready overall AYAs with sickle cell disease feel before transitioning to adult care. Improving AYA self-efficacy, reducing parental involvement safely, and ensuring active AYA involvement in decisions about managing their sickle cell disease may improve their confidence and self-management ability [1].
Source:
[1] Varty, M., Speller-Brown, B., Wakefield, B. J., Ravert, R. D., Kelly, K. P., & Popejoy, L. L. (2021). Decision-making involvement, self-efficacy, and transition readiness in youth with sickle cell disease. Nursing Research, 71(1), 12–20. https://doi.org/10.1097/nnr.0000000000000550
