Abstracts

Rationale: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy and their immediate families. More understanding of the stigma and discrimination experienced by people living with epilepsy (PLWE) in sub-Saharan Africa is needed. Methods: This was a mixed methods study involving 48 PLWE. Using thematic analytic procedures emphasizing the dominant themes the qualitative responses were analyzed and we described the associated factors. Results: The median age in years (IQR) was 25 (19-34) years in PLWE and majority (79%) of the participants were not married (38/48). Seizure frequency was significantly associated with high levels of perceived stigma with p-values of 0.038. Five main themes regarding epilepsy associated stigma in PLWE emerged in our study were: (1) psychological abuse, (2) rejection, (3) infringements on personal rights 4) poor relationships or intimacy, and 5) unmet engagements in social activities. Conclusions: Epilepsy associated stigma remains a big challenge in our settings. Understanding how PLWE feel regarding epilepsy associated stigma is crucial in designing interventions to potentially reduce these negative beliefs about self. Funding: The study was supported by a grant from the National Institutes Health (K43TW010401 - NINDS and Fogarty International Center (FIC) to Mark Kaddumukasa. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official views of the NIH.