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Related Experiment Video

Updated: Sep 9, 2025

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Stigma intersectionality and its impact on an epilepsy stigma self-management program.

Sarah Prieto1, Elaine T Kiriakopoulos2, Allyson Goldstein3

  • 1Memory and Aging Program, Butler Hospital, Providence, RI, USA; Warren Alpert Medical School of Brown University, Department of Psychiatry and Human Behavior, Providence, RI, USA.

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Summary
This summary is machine-generated.

The RISE ABOVE program showed benefits for people with epilepsy (PWE) experiencing stigma. However, those with multiple intersecting stigmas had fewer improvements, suggesting a need for tailored interventions.

Keywords:
Behavioral InterventionsIntersectionalityInterventionRISE ABOVESelf-managementStigmaStress management

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Area of Science:

  • Psychology
  • Public Health
  • Neurology

Background:

  • Perceived stigma significantly distresses people with epilepsy (PWE), especially those with intersecting marginalized identities.
  • The RISE ABOVE program was developed as a self-paced online intervention to mitigate stigma-related distress in PWE.
  • This study analyzed pilot data to understand how intersecting stigmas affect the perception and outcomes of the RISE ABOVE program.

Purpose of the Study:

  • To examine how intersecting stigmas influence perceptions of the RISE ABOVE program's credibility and user expectations.
  • To assess the impact of intersecting stigmas on user satisfaction with the RISE ABOVE program.
  • To investigate the relationship between intersecting stigmas and psychosocial outcomes in PWE using the RISE ABOVE program.

Main Methods:

  • A secondary analysis of pilot data from 20 diverse participants with epilepsy (PWE) across 13 U.S. states.
  • Participants reported a median of 2.5 additional stigmas beyond epilepsy.
  • Data collected included program credibility, expectations, satisfaction, and psychosocial outcomes (stress, self-efficacy, rejection, loneliness, epilepsy stigma, social role satisfaction) assessed at baseline, post-intervention, and six-month follow-up.

Main Results:

  • Program credibility was consistent across groups, but higher expectations for change were reported by individuals with fewer intersecting stigmas.
  • Significant improvements were observed in stress, social satisfaction, rejection, and epilepsy stigma (Hedges' g = 0.57-1.15).
  • Self-efficacy gains and sustained improvements in loneliness and social role satisfaction were primarily observed in participants with fewer intersecting stigmas.

Conclusions:

  • The RISE ABOVE program demonstrates promise as an intervention for reducing stigma-related distress in people with epilepsy (PWE).
  • Tailored adaptations of the RISE ABOVE program may be necessary to optimize its effectiveness for PWE facing multiple stigmatized identities.
  • Further research is warranted to refine interventions for PWE with complex intersecting stigmas.