Study Identifies Ways to Improve Retention among African American Women in Lupus Self-Management Programs
In order to effectively recruit and retain African American women with lupus in a Chronic Disease Self-Management Program (CDSMP), researchers find it’s essential to have a culturally competent research team to identify participant barriers and develop proactive solutions to address those barriers. Through tailored tactics, CDSMP completion rate rose from 64.7% in the first 6 months of the program to 80% in the second 6 months – higher than the national CDSMP completion rate of 75%.The key learnings come from the Women Empowered to Live with Lupus (WELL) study, a trial designed to examine the effectiveness of CDSMPs among African American women with lupus. CDSMPs are educational programs that provide training in disease self-management skills like diet, exercise, medication management and stress reduction.
While the WELL study did not observe significant difficulties to enrolling African American women with lupus into CDSMPs, participants encountered several challenges when trying to register for and/or complete the program’s workshops. Major barriers were unanticipated personal issues (e.g., childcare needs, job demands), health-related problems (e.g., lupus flares, hospitalizations), misunderstanding of the program’s scope and benefits, transportation issues and forgetfulness about upcoming classes.
Employing several tailored strategies early in the program helped to minimize these barriers:
- Offering more flexible and additional CDSMP sessions, including afternoon and Saturday classes
- Scheduling workshops at convenient/familiar facilities
- Providing transportation services
- Sending reminder messages about upcoming workshops
- Giving non-monetary gifts part-way through the program to increase engagement
Lead study author, Cristina Drenkard, MD/PhD, Associate Professor of Medicine and Epidemiology, Emory University, notes, “African American women are among the most-affected subpopulation with lupus. Although participation of high-risk groups in intervention trials is a public health priority for reducing lupus health disparities, African American women have been historically underrepresented. This work provides new insights about barriers and successful strategies in the recruitment of nearly 170 African American women with lupus into the CDSMP.”
Self-management skills are key to living your best life with lupus. Explore the Lupus Foundation of America’s resources for living with lupus.