Understanding the Self-Management Practices of Young Adults with Sickle Cell Disease.

Because self-management is central to sickle cell disease (SCD) management, this descriptive study of 18 young adults with SCD, ages 19-39, was conducted to understand their pain experience and to identify the specific home activities they use for pain prevention and management prior to care-seeking. Participants completed two baseline surveys and one semi-structured, individual interview. Content analysis of the interview transcripts yielded two themes: difficulty in describing pain and living with pain. Participants used pharmacological and non-pharmacological strategies to alleviate pain and avoid disease complications but report barriers to using these strategies. Healthcare providers should use study findings to provide appropriate care to and improve pain outcomes for young adults with SCD. In addition, interventions aimed at addressing barriers and optimizing self-management are needed.