Using a Community-Engaged Research Approach to Prioritize Self-Management Needs of Adults with Sickle Cell Disease

Abstract: Background: Sickle cell disease (SCD) is the most common blood disorder in the United States. Self-management is vital for mitigating sickle cell symptoms. However, limited research has presented self-identified priorities and needs for self-management among adults living with SCD, and few researchers have used a community-engaged research approach. Objectives: We conducted community-engaged, qualitative research to learn about self-management needs among adults living with SCD. Methods: Focus groups were conducted among adults with SCD and stakeholders in the SCD community (parents of adults with SCD and health care providers). A qualitative descriptive design and thematic analysis were used. Results: Four focus groups were conducted with 23 adults living with SCD and one was conducted with four community stakeholders. Of the adults with SCD (ages 20–34), 69.6% ( n = 16) were ages 25 to 34, and 87% ( n = 20) had sickle cell anemia. All (100%, n = 23) identified as Black and most (69.6%, n = 16) identified as female. All four community stakeholders identified as Black females and were ages 50 to 55. Thematic analysis generated three themes: (1) unsafe health care, (2) mental health needs and psychosocial support, and (3) successfully transitioning from pediatric care to adult care. Conclusions: Health care gaps and health care providers’ biases are barriers to successful SCD self-management. Therefore, for individuals with SCD, interventions should be developed to anticipate the transition from pediatric care to adult care, improve health care, and support self-management strategies and skills.