Feasibility and acceptability of an online epilepsy stigma self-management program

Stigma is a prevalent source of distress in people with epilepsy. We developed a self-paced online stigma self-management program for adults with epilepsy (Reducing Internalized Stigma in Epilepsy: A Behavioral Online Video Education, RISE ABOVE^TM).

Twenty socio-demographically diverse participants completed RISE ABOVE over an average of 3.5 weeks. Acceptability was determined by whether ≥ 80 % responded favorably to the Credibility and Expectancy Questionnaire and tailored surveys. Treatment Satisfaction was determined by whether mean Client Satisfaction Questionnaire responses was ≥ 80 %. Epilepsy Stigma, Perceived Stress, Perceived Rejection, Loneliness, Self-Efficacy, and Satisfaction with Social Roles and Activities were rated pre-post-intervention. Paired sample t-tests and Hedges' g effect sizes gauged improvements.

Most participants (≥ 80 %) thought the intervention was logical and content was easy to understand/navigate, interesting/helpful, and planned on using learned skills. Mean satisfaction was 85.41 % ± 14.43 %. There were large improvements in Epilepsy Stigma (p < 0.001; Hedge's g = 1.052), Perceived Stress (p < 0.001; Hedge's g = 0.887) and Satisfaction with Social Roles and Activities (p < 0.001; Hedge's g = -1.010), and medium improvements in Perceived Rejection (p = 0.004; Hedge's g = 0.634) and Self-Efficacy (p = 0.008; Hedge's g = -0.568). No significant differences were observed 6-months post-program completion, despite some attenuation.

RISE ABOVE is a feasible and acceptable anti-stigma intervention. Markers of acceptability were evident in high rates of credibility and satisfaction. Sizable improvements in stigma and other psychosocial outcomes were seen. Future studies will establish RISE ABOVE's efficacy via a randomized controlled trial.