Factors Associated with Internalized Stigma in People with Epilepsy: A Hospital-based Study in Medan, Indonesia

Epilepsy is a neurological disorder that can affect individuals of diverse ages, races, social backgrounds, and geographical locations. 1The disease exerts a significant impact on the global disease burden, with approximately 50 million people worldwide experiencing epilepsy.Annually, approximately 5 million new cases are diagnosed, and an estimated 4-10 out of a thousand individuals live with persistent epilepsy, necessitating ongoing therapy.Notably, the prevalence of epilepsy is highest in low-and middle-income countries, accounting for approximately 80% of cases, particularly affecting 12.7 out of 1000 people in developing countries. 2,3In Indonesia, a developing country with a population of around 260 million, the incidence of epilepsy ranges from 1.1 to 1.8 million individuals.Research conducted in 15 Indonesian cities in 2013 identified 2,288 cases of epilepsy, including 487 new cases. 3,4ilepsy is a neurological disorder characterized by either two or more unprovoked or reflex seizures occurring more than 24 hours apart, a single unprovoked or reflex seizure in an individual with a 60% risk of another seizure within the next 10 years, or an epilepsy syndrome. 5Epileptic seizures often induce anxiety and fear in individuals and those around them, leading to social exclusion.Consequently, individuals with epilepsy frequently encounter challenges in education, at home, and in the workplace. 6igma encompasses societal perceptions marked by labeling, stereotyping, and discrimination that arises from discrediting differences.It is typically categorized into "enacted stigma", involving real instances of discrimination by the public, and "self-stigma", representing internalized stigma experienced by individuals with feelings of inferiority, shame, secrecy, or withdrawal. 4,7,8Self-stigma significantly impacts the treatment of epilepsy patients, influencing treatment adherence and potentially delaying diagnosis, leading to heightened risks of uncontrolled seizures.Stigma is also a risk factor for somatic disorders and mental health issues in patients with epilepsy, influencing therapy outcomes, prognosis, and quality of life.Several studies have identified factors contributing to stigma in patients with epilepsy, AbstractObjective: Stigma toward epilepsy is associated with a negative self-concept and has a negative impact on people with epilepsy (PWE) and their families, especially in low-to middle-income countries in which the majority of PWE live.This study aimed to assess and identify factors associated with internalized stigma in PWE.Methods: A cross-sectional study was conducted among patients with epilepsy at two university teaching hospitals in Medan, North Sumatra, Indonesia, from December 2022 to May 2023.Participants (n=81) with generalized or focal epilepsy, aged >18 years, literate in Bahasa Indonesia, and without psychiatric comorbidities were included.We used Internalized Stigma of Epilepsy (ISEP), which was validated in Bahasa Indonesia, to measure stigma across five subscales. Results: The mean age was 34.714.5 years with an approximately equal gender distribution.Most participants (79%) demonstrated moderate internalized stigma, with a mean ISEP score of 57.969.90.Males exhibited higher ISEP scores than females [62.5 (36.0-71.0) vs. 59.0 (36.0-79.0)].A statistically significant difference in stigma scores was noted between males and females (p=0.039,p<0.05).Additionally, patients with generalized tonic-clonic seizures displayed lower stigma scores than those with absence seizures [59.5 (36.0-71.0) vs. 71.0(65.0-79.0)].Conclusion: This study highlights the need to improve knowledge and raise awareness regarding epilepsy to decrease the stigma associated with the condition.