Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations

Abstract

A growing body of research supports self-management approaches that can improve outcomes in people living with epilepsy (PLWE). An evidence-based remotely delivered self-management program (SMART) that was successfully delivered in an urban/suburban setting has the potential to be particularly helpful to PLWE who live in rural communities, where heavy stigma burden and limited access to healthcare is common. In this Phase 1 exploratory study, focus groups of key rural stakeholders (PLWE, family members, care providers) were used to: (1) gather information on factors that may impede or facilitate participation in SMART and (2) elicit overall perceptions of the program, as well as suggestions and feedback for refining it for implementation in Phase 2 of the randomized controlled study (RCT). Qualitative data analysis revealed that focus group participants identified geographic and social isolation, and the more limited access to epilepsy care, as the major barriers to epilepsy self-management for rural populations. However, they felt strongly that SMART could fill an epilepsy care gap in rural communities, and provided suggestions for recruitment and retention strategies of subjects, as well as improvement/modifications to the program curriculum for the Phase 2 RCT.