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

• Type of Material: Article
• Authors: Nadine Matthie, Emory University; Coretta Jenerette, University of North Carolina
• Language: English
• Date: 2017-05
• Publisher: Foundation for Sickle Cell Research
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: 2017
• Title of Journal or Parent Work: Journal of Sickle Cell Disease Hemoglobinopathies
• Volume: 2017
• Start Page: 76
• End Page: 87
• Grant/Funding Information: This work was supported by grants from the National Institutes of Health (National Institute of Nursing Research, T32NR007091) and the Alpha Alpha Chapter of Sigma Theta Tau International Honor Society of Nursing to the first author.
• Keywords: pain prevention; activity; pain experience; sickle cell disease; young adult; self-management; care-seeking
• Research Categories: Health Sciences, Medicine and Surgery

Abstract

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.