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Related Experiment Video

Updated: Feb 24, 2026

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

Elaine T Kiriakopoulos1, Allyson Goldstein2, Sarah J Kaden3

  • 1The Dartmouth Institute, Geisel School of Medicine, Dartmouth College, Hanover, NH, USA; Department of Neurology, Dartmouth Health, Lebanon, NH, USA.

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|February 22, 2026
PubMed
Summary

The RISE ABOVE program helped people with epilepsy (PWE) manage internalized stigma, fostering growth in awareness and resilience. However, some participants experienced misalignment due to readiness, content relevance, and program design, indicating areas for improvement.

Keywords:
Behavioral InterventionsDiscriminationPerson-Based ApproachRISE ABOVEStigma

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Area of Science:

  • Neuroscience and Psychology
  • Public Health and Social Sciences

Background:

  • Internalized stigma significantly impacts the psychosocial well-being of people with epilepsy (PWE).
  • The RISE ABOVE program offers a self-paced, online solution for PWE to address internalized stigma.

Purpose of the Study:

  • To explore participant perceptions of growth and misalignment after completing the RISE ABOVE online self-management program.
  • To identify facilitators and barriers to effective stigma self-management among PWE.

Main Methods:

  • Qualitative study involving 20 adults with epilepsy who reported internalized stigma.
  • Semi-structured interviews were conducted post-program completion and analyzed thematically.

Main Results:

  • Participants reported increased stigma awareness, validation, emotional regulation, resilience, and flexible thinking.
  • Identified challenges included readiness for change, content relevance, discomfort with introspection, and beliefs about societal stigma.

Conclusions:

  • RISE ABOVE is perceived as a beneficial resource for stigma self-management in PWE.
  • Programmatic limitations were identified, suggesting areas for refinement to enhance acceptability and prepare for efficacy testing.