Moving on Up: Shifting Sickle Cell Disease Management During Adolescence in Preparation for Adulthood

Sickle cell disease (SCD) is a progressive, life-limiting disease that begins in childhood. Effective SCD management is critical during the transition from pediatric to adult care when morbidity and mortality risks increase. Yet, this transition often coincides with disease-management responsibilities shifting from parents to adolescents, raising questions about adolescents' preparedness. The current qualitative study examines adolescents' (ages 13-17) and their parents' experiences with shifting disease-management responsibilities in preparation for transitioning to adult care.

Adolescents with SCD (n = 21; ages 13-17) and their parents (n = 18) participated in individual semi-structured interviews exploring when and how disease-management responsibilities shift during adolescence and concerns regarding transitioning from pediatric to adult care. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis.

Adolescents primarily identified as Black/African American or Afro-Latino (91%) and male (62%). Parents were primarily mothers (82%), publicly insured (52%), and Black/African American (94%). Adolescents and parents emphasized feeling unprepared to transition from pediatric to adult care. Gradually shifting SCD management responsibilities from adolescents to parents fostered adolescents' self-efficacy. Yet, both adolescents and parents described how insufficient knowledge of the transition process and adolescents' underdeveloped self-advocacy skills fueled their concerns about eventually transitioning to adult care.

Understanding how and when adolescents assume more disease-management responsibilities may inform ways to mitigate morbidity and mortality during adolescence and emerging adulthood. Findings inform potential approaches for supporting adolescents' acquisition of disease-management skills necessary for transition readiness and that could ultimately reduce risk of premature morbidity and mortality in adulthood.