The impact of socioeconomic status on the management of epilepsy: a qualitative study

Abstract

Introduction

Socioeconomic status (SES) is a recognised determinant of epilepsy outcome, yet it remains unclear whether epilepsy management is effectively contextualised to meet the needs of individuals across different SES backgrounds. This study explored how adults with epilepsy perceive the influence of SES on their care and self-management.

Methods

In-depth, semi-structured videoconference or telephone interviews were conducted until data saturation with fifteen adults (11 women, 18–75  years) recruited through national epilepsy charities. SES was classified with the “MacArthur Subjective Social Status ladder” and “Social Determinants of Health” indicators, yielding eight low/lower‑middle (“lower‑SES”) and seven upper‑middle/high (“higher‑SES”) participants. Two researchers analysed transcripts inductively using reflexive thematic analysis. Member checking confirmed analytic credibility.

Results

Eight interrelated themes emerged: support networks and relationships; financial implications and access to care; employment and economic stability; transportation and independence; treatment and medication adherence; interactions with the healthcare system; perceived power imbalance and stigma; and trust and future care decisions. In every theme, lower–SES participants reported a more significant number of – and more disruptive – barriers than higher–SES participants. They described issues regarding obtaining transport and medicines, navigating opaque benefit systems, lacking dependable social support, limited access to specialist care, and feeling dismissed or stigmatised by clinicians, which eroded trust and prompted disengagement from care. Higher–SES participants, while not immune to challenges, more often mobilised resources to buffer their impact.

Conclusion

Lower socioeconomic status intensifies financial, informational, and relational barriers to managing epilepsy effectively, undermining adherence and care consistency. Routine SES assessment, tailored education, and integrated social–support interventions are crucial to reduce these inequities and improve outcomes for socioeconomically disadvantaged people with epilepsy.