Abstracts

Rationale: People with epilepsy (PWE) are at risk of health-related stigma, augmenting psychosocial disability and lowering quality of life. Anti-discrimination campaigns have been implemented on a public health scale to reduce enacted discrimination, but little has been done to address stigma felt by PWE. The few treatment approaches previously trialed were ineffective, in part due to poor acceptance of in-person treatment formats and failure to teach stigma-specific education informed by community stakeholders. Community Engagement Studios (CES) are valuable forums for acquiring feedback from stakeholders. The CES is a consultative model used in patient-centered research and program development. We utilized CES methodology to solicit input from PWE who experience stigma to help inform development of an online, modular stigma self-management program, RISE ABOVE (Reducing Internalized Stigma in Epilepsy: A Behavioral Online Video Education).

Methods: In preparation for the CES, a facilitator discussion guide with key questions for participants and a power point presentation with context about stigma and the RISE ABOVE program were developed. Seventeen adults with epilepsy were screened for participation using Jacoby’s 3-item Epilepsy Stigma Scale. People who reported experiencing stigma were invited to participate as “community experts” in a 90-minute virtual CES. Eight community experts varying in age (24-55 years), household income (< $25,000 to > $75,000 per year), educational attainment (high school to master’s), and gender (2 male, 6 female) were enrolled to participate. A neutral facilitator led participants in sharing lived stigma experiences, and their views on stigma education, tools for reducing epilepsy stigma and RISE ABOVE’s usability and design were collected.

Results: Participant experiences highlighted the commonality of stress and frustration encountered when navigating stigma. A need for skills to manage feelings of social rejection and to learn techniques to overcome isolation was expressed.  Program content recommendations included emphasizing ways for PWE to manage stress, navigate social situations, and set manageable goals to overcome social challenges. Feedback around site design included suggestions for both smartphone and desktop-accessible versions, a notification system to remind users to revisit the program website, participant status updates to bolster user engagement, and maximizing user interactivity within education modules. 

Conclusions: The CES provided insights from a diverse group of PWE about stigma experiences, stakeholder needs, and content and design features for RISE ABOVE. Participants were enthusiastic about the prospect of an online stigma self-management program co-produced by PWE. They specifically endorsed the need for participant directed education that would help PWE to build skills to recognize and adaptively manage stigma. CES participants’ feedback will be incorporated into a prototype of RISE ABOVE in preparation for beta testing with a larger sample of diverse PWE.  

Funding: HOBSCOTCH Institute for Cognitive Health and Well-Being