Sickle cell disease and adolescents' perspectives on self-care management resources

Adolescents with sickle cell disease (SCD) face unique challenges, especially during the critical health care transition from pediatric to adult care. The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their move into the adult health care system.

Guided by the Theory of Self-Care Management for Sickle Cell Disease, this qualitative descriptive study used semi-structured interviews with 11 adolescents with SCD (M = 16.63 years, SD = 1.15). In addition to a demographic survey, adolescents answered interview questions about their perceptions of their self-care management, health care transition readiness, support, and spiritual well-being. Data were analyzed using a template analysis style.

Four major themes were identified: attaining vocational aspirations, maintaining effective self-care management strategies, managing and maintaining social support, and building resilience through spirituality and religion. Maintaining, effective self-care management strategies had three threads: coping behaviors, health care transition needs, and self-care management strengths.

Identifying self-care management resources and areas where further attention is needed can be helpful for health care providers when developing age specific plans. A tailored approach to care during this critical health care transition period can also build capacity for a successful transition for adolescents.