Establishing peer support groups for diabetic retinopathy in India: Lessons learned and way ahead

Complications of diabetes mellitus (DM) are a public health problem globally. DM management entails medication and self-management. Peer support groups (PSGs) can improve self-management and promote healthy behavior. The objectives of this study were to design, establish, and evaluate two PSG models for people who had been screened for diabetic retinopathy to assess self-reported lifestyle changes, satisfaction with meetings and barriers to attendance.

Peer groups were established using a pre-tested facilitator's guide in 11 locations in 3 states. Group members were oriented on diabetes management and lifestyle changes to improve control. Attendees' experiences were ascertained through semi-structured interviews and self-report. Data were analyzed using MS Excel 2017.

Eleven PSGs were established in 3 states, in 10 community health centers and one eye hospital. 53 sessions were held and 195 people attended on 740 occasions. Lifestyle changes most frequently reported between first and second visits were taking medication regularly and dietary modification. Attendance declined in the eye hospital group. 83% of CHCs members were satisfied or very satisfied compared with 37% of eye hospital (EH) members. The barriers included distance and lack of family support.

PSGs held in CHCs were more sustainable than those in an eye hospital, and group members were more satisfied and more likely to report positive lifestyle changes. Findings were self-reported and hence a major limitation for the study. Further studies should focus on obtaining objective measures of control of diabetes and risk factors for diabetic retinopathy from members attending peer support groups in CHCs.