Understanding Participant-Perceived growth and misalignment in an online epilepsy stigma Self-Management Program: A...

Internalized stigma is a prevalent source of distress among people with epilepsy (PWE), with deleterious effects on psychosocial well-being. RISE ABOVE is a self-paced, online, self-management program designed to help PWE recognize and cope with internalized stigma. This qualitative study explored participant perceptions of growth and misalignment associated with completing RISE ABOVE.

Twenty adults with epilepsy (age 47.30 ± 14.25 years; 50% female; 30% BIPOC) who reported internalized stigma participated in one-hour, semi-structured Zoom interviews following program completion. Transcripts were double-coded in NVivo 14 and analyzed using a hybrid exploratory and thematic analysis approach to identify factors influencing participant experience.

Reported areas of growth included increased awareness of stigma and its manifestations, gaining validation and connection by seeing their experiences reflected in the content, enhanced emotional awareness and stress management, empowerment to express oneself authentically, greater emotional resilience, and learning to think more flexibly and methodically when handling stigma-related challenges. Areas of misalignment included limited readiness for change, difficulty relating to the program's content, discomfort with stigma-focused or introspective exercises, beliefs that societal stigma cannot be modified through individual coping alone, and dissatisfaction with program length and complexity.

Participants viewed RISE ABOVE as a beneficial stigma self-management resource and described several factors that facilitated positive change. They also identified key programmatic limitations to target for refinement and further evaluation. Understanding the factors that shape engagement and utilization will increase RISE ABOVE's acceptability and prepare it for larger-scale efficacy testing.