Table 3

Summary of recruitment and retention of African–American women with SLE into the CDSMP: challenges, barriers, strategies and outcomes

ChallengeIdentified barrierImplemented strategyOutcome
Low registration into a CDSMP workshop.

  • CDSMP locations and scheduled not matching participants’ needs.

  • Collaborative Emory-ARC efforts to coordinate CDSMP workshops that would meet study participants’ needs.

  • Support ARC community recruitment efforts.

  • Increased the number of CDSMP workshops at convenient locations and schedules.

    • CDSMP at libraries, health centres, churches, Grady and Emory facilities.

    • CDSMP delivered on Saturdays.

  • Increased the number of study participants registered per workshop (to prevent need to cancel workshops due to low registration).

  • 42 CDSMP WS scheduled in 2 years.

    • 28 in community centres.

    • 14 in Grady and Emory facilities.

    • 14 CDSMP scheduled on Saturdays.

  • Of 228 participants consented, 203 (89%) registered into a CDSMP.

Participant no-shows or cancellation, after being registered into a CDSMP workshop.

  • Competing health and life-related demands.

  • Unclear understanding of the CDSMP scope and objectives.

  • CDSMP demonstration (1-hour ‘Session Zero’).

  • Reinvited to register for a different CDSMP workshop.

  • CDSMP workshops on Saturdays.

  • Provided information about the CDSMP at multiple points of the recruitment process.

  • Culturally relevant recruitment material including a short informative/testimonial video with messages highlighting alignment of lupus patients’ self-management needs with the intervention goals and benefits.

  • 6 ‘Sessions Zero’; 28 attendees.

  • Of 203 participants registered into a CDSMP, 168 (82.8%) attended ≥1 class.

  • Attendance increased from 45 participants in the first half of the recruitment period to 123 participants in the second half.

  • 64 of 168 (38%) attended a Saturday-delivered CDSMP workshop.

Low CDSMP completion rate (less than four classes attendance).

  • Health and life-related demands.

  • Variable transportation needs.

  • Forgetfulness.

  • Option to attend future CDSMP workshops.

  • Flexible transportation options across the 6-week CDSMP.

  • Weekly reminder via phone call/text message.

  • Non-monetary incentive at class 3.

  • The completion rate increased from 64.7% in the first 6 months since the intervention started to 80.0% in the second 6 months.

  • The cumulative completion rate was 75.0% for the 2-year study period.

Low rate of 6-month survey response.

  • Competing demands.

  • Forgetfulness.

  • Frequent, personalised contact by study staff.

  • Survey reminders.

  • Implemented a ±3-month window to complete the survey.

  • Flexible survey delivery.

  • Monetary and non-monetary incentives.

  • The 6-month response rate was 80.9% for year 1 CDSMP participants and 98.9% for year 2 CDSMP participants.

  • By 30 September 2019, the overall 6-month response rate was 92.3%.

  • ARC, Atlanta Regional Commission, an Atlanta-based organisation that owns the CDSMP licence; CDSMP, Chronic Disease Self-Management Program; WS, workshop.