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

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.

We conducted community-engaged, qualitative research to learn about self-management needs among adults living with SCD.

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.

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.

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.