Challenges in Shifting Management Responsibility From Parents to Adolescents With Sickle Cell Disease

This study explored the challenges faced by adolescents with sickle cell disease (SCD) and their parents and the work they engage in to progressively shift from parent management to independent adolescent self-management.

A qualitative descriptive focus-group design with semi-structured interviews was used with adolescents (11-18 years) with SCD (HbSS genotype) and their parents/primary caregivers. Interviews were analyzed using content analysis.

Two adolescent focus groups, with a total of 14 adolescents, and two parent focus groups, with a total of 15 parents, described adaptive challenges. Adolescents' adaptive challenges included mastering complex symptom management, communicating about SCD and symptoms, and maintaining control. Parents' adaptive challenges included giving over the complex management, communicating the management with the adolescent, balancing protection against risk with fostering independence, changing a comfortable rhythm, and releasing the adolescent into an "SCD-naive" world. Adolescents' adaptive work included pushing back at parents, defaulting back to parental care, stepping up with time, learning how SCD affects them, and educating friends about SCD. Parents' adaptive work included engaging the adolescent in open dialogue and co-managing with the adolescent.

Shifting management responsibility from parents to adolescents imposes adaptive challenges for both. Future research is needed to develop and test interventions that improve adaptive capacity in adolescents and parents.

Health care providers need to assess the parent-child relationship and their progress in shifting the management responsibility, facilitate discussions to arrive at a shared understanding of the challenges, and collaborate on adaptive work to address these challenges.