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

Abstract

Introduction

Perceived stigma is a common and distressing experience among people with epilepsy (PWE), particularly those with additional marginalized identities. Our team developed RISE ABOVE, a self-paced online stigma self-management program, to reduce stigma-related distress. This secondary analysis of pilot data examined how intersecting stigmas (i.e., additional stigmas beyond epilepsy) influence perceptions of RISE ABOVE’s credibility, expectations for change, user satisfaction, and psychosocial outcomes.

Materials and Methods

Twenty PWE from 13 U.S. states completed RISE ABOVE. Participants were diverse (Mean age = 47.3 ± 14.3 years; BIPOC = 30 %; bilingual = 30 %; unemployed = 30 %; female = 50 %; seizures uncontrolled = 50 %), with 12–18 years of education. All but one reported stigma beyond epilepsy (Median = 2.5 additional stigmas, IQR = 1–3.75). Credibility and expectations were assessed with each module; satisfaction was measured post-program. Psychosocial outcomes—including perceived stress, self-efficacy, rejection, loneliness, epilepsy stigma, and social role satisfaction—were assessed at baseline, post-intervention, and six-months. Analyses included Pearson correlations and paired t-tests.

Results

Credibility ratings were similar across groups, though expectations for change were higher among those with fewer intersecting stigmas. Medium-to-large improvements (Hedges’ g = 0.57–1.15) were observed in stress, social satisfaction, rejection, and epilepsy stigma. Self-efficacy only improved among those with lower stigma intersectionality. At follow-up, most gains were maintained, but reduced loneliness and improved social role satisfaction were limited to those with fewer intersecting stigma.

Conclusions

RISE ABOVE is a promising intervention. However, tailored adaptations may enhance its utility for PWE confronting multiple stigmatized identities.