Feasibility and Acceptability of an Online Epilepsy Stigma Self-management Program
Abstract number :
2.243
Submission category :
4. Clinical Epilepsy / 4C. Clinical Treatments
Year :
2024
Submission ID :
1110
Source :
www.aesnet.org
Presentation date :
12/8/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Seth Margolis, PhD – Alpert Medical School of Brown University
Sarah Prieto, PhD – Alpert Medical School of Brown University
Allyson Goldstein, BS – University of Maine
Sarah Kaden, BA – Dartmouth-Hitchcock Medical Center
Elijah Castillo, BS – University of Rhode Island
Shehjar Sadhu, BS – University of Rhode Island
Geoffrey Tremont, PhD – Alpert Medical School of Brown University
Kunal Mankodiya, PhD – University of Rhode Island
Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth-Hitchcock Medical Center
Rationale: Stigma is a prevalent source of distress in people with epilepsy (PWE), with limited treatment options. We developed and tested a codesigned online stigma self-management program for adults (Reducing Internalized Stigma in Epilepsy: A Behavioral Online Video Education, RISE ABOVETM). RISE ABOVE includes self-paced modules on stress management, recognizing stigma, cognitive restructuring, and problem-solving to be completed on home devices.
Methods: Using purposive sampling from online and clinic sources, we aimed to recruit 20 PWE who felt stigmatized. Module Acceptability was determined by whether ≥80% responded favorably to representative items on the Credibility and Expectancy Questionnaire and tailored surveys. Overall treatment Satisfaction was determined by whether the mean of Client Satisfaction Questionnaire responses was ≥80%. Stigma (Epilepsy Stigma Scale), Perceived Stress, Perceived Rejection, Loneliness, Self-Efficacy (NIH Toolbox Emotion Battery), Satisfaction with Social Roles and Activities (Neuro-QOL), and Quality of life (QOLIE-10-P), were rated pre-post-intervention. Due to the intentionally small sample and hypothesis-driven approach, one-tailed paired sample t-tests and Hedges’ g effect sizes gauged pre-post improvement.
Results: Thirty-nine PWE were screened, 24 of whom qualified/enrolled. Three withdrew early due to unforeseen scheduling conflicts, and 1 completed the program but had unusable data due to using an incompatible device. The remaining 20 participants (83.3% retention) included equal numbers of women and men with controlled and uncontrolled seizures from 13 U.S. states. All had at least a high school degree and were sociodemographically diverse (Age: 47.3±14.3 years; BIPOC: 30%; Unemployed: 30%). Median completion time was 3 weeks (IQR: 1, 3.25). After viewing orientation videos explaining each module, ≥80% thought the content was logical. After completing each module, ≥80% thought the content was easy to understand/navigate, interesting/helpful, and planned on using what they learned in everyday life. Mean treatment satisfaction was 82.81%±18.85%. Paired sample t tests revealed large improvements in Stigma (p < .001; Hedge’s g = 1.052), Perceived Stress (p < 0.001; Hedge’s g = 1.009) and Satisfaction with Social Roles and Activities (p < 0.001; Hedge’s g = -.937), with medium improvements in Perceived Rejection (p = 0.005; Hedge’s g = .610) and Self-Efficacy (p = .007; Hedge’s g = -.587). Improvements in Loneliness and Quality of Life trended toward significance (p’s = 0.065 and 0.070, respectively).
Conclusions: RISE ABOVE is a feasible and acceptable anti-stigma intervention for PWE. In this diverse national sample, participants completed the program with relative ease/efficiency. Markers of acceptability were evident in high rates of treatment retention, credibility, and satisfaction. Sizable improvements in stigma and other psychosocial outcomes were seen. Future studies will seek to understand facilitators and barriers of RISE ABOVE’s benefits before undertaking a larger, randomized controlled, efficacy trial.
Funding: Epilepsy Foundation of New England
Clinical Epilepsy