Perceiving Beyond the Seizures: “A Study on Epilepsy Stigma in the General Population of Karachi”

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Abstract

Background: Epilepsy is commonly associated with significant stigma, which can be particularly pronounced among individuals at high risk due to frequent seizures or other related health challenges. The study aims to explore the clinical and socio-demographic factors contributing to the stigma experienced by people living with epilepsy. Methods: A prospective cross-sectional study was conducted from March 2024 to November 2024, enrolling 385 patients from Star general hospital and Muslim khatri hospital in Karachi. Participants, age 15-65 years, with a self-reported epilepsy diagnosis and at least one hemorrhagic event in the past six months, were included and individuals with chronic illnesses like cancer, kidney failure, dementia, pregnancy or mental instable excluded from study. Data were collected using a structured questionnaire, assessing socio-demographic characteristics, seizure severity, mental health comorbidities, self-efficacy, self-management, health literacy, depression symptoms, social support, and quality of life was analysis using STATA version 16. 1and SPSS version 26.0. Results: Stigma in people with epilepsy (PLWE) was strongly linked to more severe seizures, higher AED use and mental health issues, particularly depression. Factors like lower self-efficacy, poorer health literacy, and reduced quality if life were associated with higher stigma. Regression models showed that better self-efficacy, health literacy, and social support helped reduce stigma, while depression and poor quality of life increased it. Conclusion: Seizure severity, mental health issues, and self-management skills all influenced stigma in epilepsy. Reducing stigma and improving quality of life can be achieved by addressing these variables through social support, health literacy, self-management programs, and mental health screening.

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