Exploring the Perceived Impact of the Chronic Disease Self‐Management Program on Self‐Management Behaviors among African American Women with Lupus: A Qualitative Study

Abstract

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.

Suitability for e-health of non-pharmacological interventions in connective tissue diseases: scoping review with a descriptive analysis

“…After exclusion of duplicates and title/abstract screening, 226 studies were analysed in full text. One hundred and nineteen papers comprising 113 studies (six studies were published in two articles each [29][30][31][32][33][34][35][36][37][38][39][40] ) were used for this scoping review. The PRISMA flow chart of the study selection is depicted in figure 1.…”

“You Just Have to Keep Going, You Can’t Give Up”: Coping mechanisms among young adults with lupus transferring to adult care

“…45 Programs such as the well-known Chronic Disease Self-Management Program, which focus on strategies to enhance self-efficacy through goal setting, action planning, problem-solving, and mindfulness techniques while utilizing peer support to do so, lead to improved self-management behaviors and health-related quality of life among women with SLE. 46 Social networks and types of social support may change over time depending on disease status and the young person's developmental stage. 47 Young adults in our study cited events such as lupus camps as providing social connectedness; future studies are warranted to determine whether similar programs or other peer-support groups can be implemented to improve coping strategies and transition outcomes.…”

Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus

“…To address these deficiencies in social support, chronic disease interventions have incorporated information, activities, and tools to enhance patients’ abilities to maintain or obtain social support (10–14). These interventions have had a positive impact in improving disease self‐management behaviors and HRQoL, specifically in SLE (15). The Chronic Disease Self‐Management Program (CDSMP) has helped improve 4 areas of disease self‐management (relaxation, exercise, medication adherence, and diet) in patients with SLE, who perceived CDSMP to be valuable in developing and improving fundamental self‐management behaviors (15).…”

“…These interventions have had a positive impact in improving disease self‐management behaviors and HRQoL, specifically in SLE (15). The Chronic Disease Self‐Management Program (CDSMP) has helped improve 4 areas of disease self‐management (relaxation, exercise, medication adherence, and diet) in patients with SLE, who perceived CDSMP to be valuable in developing and improving fundamental self‐management behaviors (15). However, most of these interventions have used in‐person approaches, failing to reach those who cannot physically or reliably attend these meetings.…”