Background Effective self-management is critical to improve outcomes in individuals with systemic lupus erythematosus (SLE). African Americans with SLE face formidable barriers to accessing self-management education. We qualitatively explored the perceived processes through which the Chronic Disease Self-Management Program (CDSMP), an evidence-based, worldwide disseminated educational intervention for people with chronic conditions, affects self-management behaviors among African American women with SLE.
Methods Participants were recruited from the WELL (Women Empowered to Live with Lupus) Study, a behavioral trial of the effectiveness of the CDSMP on African American women with SLE. The CDSMP is a community-based, small-group program designed to enhance self-efficacy and self-management skills in people with chronic conditions. The CDSMP addresses self-management challenges that are universal across chronic conditions (e.g. pain and fatigue management, healthy eating, physical activity, communication with providers). Using a longitudinal pre-/post-intervention design, we conducted one-on-one, semi-structured interviews among a purposive sample of WELL participants. Pre-intervention interviews explored self-management behaviors at baseline; post-intervention interviews focused on changes in these behaviors after the CDSMP. Transcripts were analyzed using thematic methods.
Results Twenty-four and 23 women participated in the pre- and post-intervention interviews, respectively. Mean age and disease duration were 48.6 (SD=13.5) and 14.1 years (SD=8.1), respectively. Most women (91.7%) were employed and 1/3 reported an annual income of $10,000-$19 000. The sample was balanced with regard to education, depression, and SLE activity.
Participants perceived the CDSMP to be a valuable resource that helped them to improve fundamental self-management behaviors, including exercise, relaxation, diet, and medication-taking. With few exceptions, womens reported changes in self-management behaviors were not dependent on age, education, SLE activity or depression status. Womens most widespread perceived effects of the CDSMP were on relaxation and exercise. Strategies that generated improvements in those behaviors included goal setting, action planning, encouragement to pursue low-impact physical activity, and introduction of mindfulness techniques to better manage SLE symptoms.
Conclusions African American women living with SLE, a population vulnerable to high rates of SLE morbidity and mortality, perceived benefits from CDSMP participation. The programs potential to catalyze improvements in self-management behaviors was independent of womens demographic or disease characteristics. Because the CDSMP is widely disseminated
Funding Source(s): Research reported in this publication was supported by the National Institute On Minority Health And Health Disparities of the National Institutes of Health under Award Number R01MD010455. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
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