Perceptions of a Self-Management Intervention for Adolescents With Sickle Cell Disease

Objective: Individuals with sickle cell disease (SCD) are at increased risk for complications from their disease during their adolescent and young adult (AYA) years. The risk of morbidity in AYAs with SCD can be decreased with improved self-management. Existing self-management interventions typically focus on one aspect of self-management (e.g., adherence) and do not address factors that activate patients (knowledge, motivation, self-efficacy, and social support) to self-manage. Sickle Cell Thrive (SCThrive) is a mixed in-person/online, technology-enhanced (use of a mobile app), group self-management intervention that targets patient activation. To determine the most clinically significant intervention components, a qualitative study was conducted. Method: Participants were 19 AYAs (M-age = 17.05) with SCD who participated in individual semistructured phone interviews after completing SCThrive. Interview content was coded using a grounded-theory approach to generate themes related to SCThrive's feasibility, acceptability, and motivation for and impact on self-management. Results: SCThrive was reported to be highly feasible due to the mixed in-person/online format and acceptable because they learned skills to manage SCD in a group of AYAs with SCD. Action planning and pain/mood tracking appeared to be key factors in motivating AYAs for self-management. Participants reported continuing to use self-management skills post-SCThrive (self-efficacy) including applying them to other domains of their lives (e.g., educational/vocational). Conclusions: Study results provide data that can be leveraged to enhance the feasibility, acceptability, and impact of SCThrive and other self-management interventions. Findings can also inform clinical and mobile health interventions to increase self-management in this population. Implications and Impact Statement Adolescents and young adults with sickle cell disease are a particularly vulnerable group at risk for serious disease complications that could be minimized or prevented with effective self-management. This study showed a self-management intervention delivered in a group format in-vivo and online was acceptable, feasible, and motivating for self-management. Participants perceived the peer support component and app as highly beneficial.