Understanding the perceived impact of a peer-led epilepsy self-management intervention in Uganda: a qualitative study

To examine how adults with epilepsy in Uganda experienced epilepsy self-management, stigma, and care following participation in a peer-led intervention (SMART-U) compared to enhanced treatment as usual (ETAU).

This qualitative study was embedded within an ongoing randomized controlled trial at two university neurology clinics. A purposive subsample from both study arms completed semi-structured interviews at 13 (n = 16) and 24 weeks post-intervention (n = 16). Interviews explored perceived benefits and challenges of care, self-management behaviors, stigma and recommendations for improvement. Transcripts were analyzed using thematic analysis.

Four themes emerged: barriers to self-management, self-management behaviors and attitudes, participant perspectives on care, and facilitators of self-management. Participants in both groups described significant structural and social barriers, including stigma, limited support, and challenges accessing care. However, SMART-U participants more frequently reported increased confidence, engagement in proactive self-management (e.g., stress management, planning around seizures), improved communication with providers, and greater ability to cope with stigma. In contrast, ETAU participants more often characterized epilepsy care as provider-driven, with fewer changes in attitudes or behaviors. Over time, SMART-U participants demonstrated clearer shifts toward self-efficacy and a more reflective understanding of epilepsy.

Peer-led self-management support may enhance engagement, coping, and self-efficacy among people with epilepsy in resource-limited settings. Addressing stigma and strengthening social and healthcare support may be critical for improving outcomes in low-middle income countries.