Objective To qualitatively explore the processes through which the Chronic Disease Self‐Management Program (CDSMP)—a peer‐led, group‐based educational intervention for people with chronic conditions—affects self‐management behaviors among African American women with systemic lupus erythematosus (SLE). Methods Using a longitudinal pre‐ and postintervention design, we conducted two waves of one‐on‐one, semistructured interviews with 24 purposefully sampled participants. Wave 1 interviews explored self‐management behaviors at baseline; wave 2 interviews focused on changes in these behaviors postintervention. Transcripts were analyzed using thematic analysis methods. Results Study participants perceived the CDSMP to be a valuable resource that helped them improve fundamental self‐management behaviors, including exercise, relaxation, diet, and medication adherence. We found, with few exceptions, that in this sample, women's reported changes in self‐management behaviors did not vary by participant age, education, SLE disease severity, or depression status. Our analysis suggests that the CDSMP had the most widespread perceived effects on relaxation and exercise. Strategies that generated improvements in relaxation and exercise included goal setting, action planning, encouragement to pursue low‐impact physical activity, and introduction of mindfulness techniques to better manage SLE symptoms. Conclusion Our findings suggest that African American women with SLE perceived the CDSMP as an effective educational self‐management intervention. The program can potentially catalyze improvements in self‐management behaviors in this population, regardless of demographic or disease characteristics.
Background Healthcare access, utilization, and quality play critical roles in shaping mortality and morbidity among patients diagnosed with systemic lupus erythematosus (SLE), and yet healthcare access, utilization, and quality can be suboptimal for many people living with SLE. The aim of this qualitative study was to explore the perceived impact of a peer-led, group-based educational intervention (the Chronic Disease Self-Management Program [CDSMP]) on healthcare engagement 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 diagnosed with SLE. We conducted two waves of qualitative, one-on-one, semi-structured interviews with 24 purposively sampled WELL participants; one interview was conducted before CDSMP participation and one after. Wave 1 interviews explored health service use behaviors at baseline; Wave 2 interviews focused on changes in these behaviors post-intervention and women’s perceptions of whether and how the CDSMP shaped these changes. Transcripts were analyzed using thematic analysis methods. Results Study participants perceived the CDSMP to be a valuable resource for supporting two distinct health service use behaviors: communicating with doctors ( N = 16 [88.9%]) and managing medication side effects ( N = 17 [41.2%]). Women perceived that the CDSMP had the most potent and widespread effects on patients’ communication with doctors. Strategies that women believed generated improvements in patient-doctor communication included enhancing preparation for appointments and boosting patient participation during doctor’s visits. Women’s reported post-CDSMP improvements in health service use behaviors varied by disease severity and depression. Insurance coverage, while not probed directly during baseline interviews, emerged organically as a key factor affecting health service use behaviors; the CDSMP did not seem to improve participants’ ability to circumvent insurance-related barriers to accessing care. Conclusions Our findings suggest that the CDSMP may help enhance healthcare service utilization among African American women with SLE by improving doctor/patient communication and medication side effect management. If future research confirms this conclusion, African American women living with SLE should be encouraged to participate in CDSMP workshops to enhance health service use behaviors. Trial registration NCT02988661 . Registered 12/07/2016 Electronic supplementary material The online version of this article (10.1186/s13075-019-1942-7) contains supplementary material, which is available to authorized users.
BackgroundEffective 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.MethodsParticipants 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.ResultsTwenty-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.ConclusionsAfrican 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 disseminatedFunding 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...
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