Evaluating felt stigma among people with epilepsy: Insights from Saudi Arabia

Epilepsy is a chronic neurological disorder. Stigma significantly contributes to the disease burden and delays in medical management. Enacted stigma involves discrimination against people with epilepsy, while felt stigma, or internalized stigma, is the shame associated with epilepsy. In Saudi Arabia, enacted stigma has been extensively studied, revealing misconceptions about epilepsy. This study aims to determine the severity of felt stigma, its association with sociodemographic characteristics, and its relation to epilepsy features.

This cross-sectional study was conducted among people with epilepsy at a tertiary university hospital. The Internalized Stigma of Mental Illness (ISMI) scale, adapted for epilepsy, was used. The validated and translated questionnaire was self-administered electronically in Arabic. It consists of three sections: sociodemographic data, 29 items assessing internalized stigma using a 4-point Likert scale, and 6 items assessing epilepsy features. An average score of > 2 indicates stigma: ≥2, mild; ≥2.5, moderate; and ≥ 3, severe.

Of 112 participants, 19.6 % had mild internalized stigma, and 5.4 % had moderate internalized stigma, totalling 25 % with internalized stigma. No participant was found to have severe internalized stigma. Higher levels of internalized stigma were found among those who are single, have only school-level education, and low income. Epilepsy features associated with high internalized stigma include a history of status epilepticus and the use of ≥ 2 antiseizure medications.

Felt stigma is prevalent in Saudi Arabia in mild to moderate severity. Controlling seizures and educating patients and their families about stigma can help reduce its prevalence.