Living with medicine resistant epilepsy: Perspectives of a sample of Black Americans.

Background

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Purpose

Black Americans with epilepsy bear a disproportionate burden of disease yet are underrepresented in research. The aim of the study was to understand what living with uncontrolled epilepsy meant to a sample of Black individuals living in- and- around Richmond, Virginia.

Methods

This qualitative study incorporated a community-based approach that included a collaborative partnership with a community advisory board. Semi-structured interviews were undertaken with 20 Black adults, with a mean age of 38y and mean duration of epilepsy of 17y. By means of a reflexive thematic analysis the experiences of these 10 men and 10 women lent depth to what it means to live with medicine resistant epilepsy (MRE) while receiving care in Richmond, Virginia, USA.

Results

Beyond seizure frequency, profound disruptions to life trajectories, relationships, and self-concept were described. Three interrelated themes evolved: setbacks (unpredictability and cumulative losses), identity disruption (existential burden), and the process of adapting (pragmatic meaning-making). These three themes highlight the intersectional burden of disease. Culture specific insights included that being Black and having epilepsy was a dual burden underpinned by structural inequities and general mistrust of institutions.

Conclusions

The burden of MRE extends beyond seizure control to include emotional, social, and racialized dimensions. Establishing trust in clinical encounters requires integrating social and structural contexts into the planning of treatment and is essential for the delivery of equitable epilepsy care.