Stigmatization and social impacts of epilepsy in Turkey

Stigma associated with epilepsy has negative effects on psychosocial outcomes, affecting the lives of people with epilepsy (PWE). Obtaining basic social rights can be difficult compared to the general population. The aim of our study was to evaluate the perceived stigma among PWE and social attitude towards the disease and to compare the social measures with the general population in Turkey.

A self-completed questionnaire consisting of demographic details and items about attitudes and perceived stigmatization was developed. Participants consisted of patients with various types of seizures who were randomly chosen from the epilepsy outpatient clinic. They were requested to complete the questionnaire.

Questionnaires were obtained from 330 PWE. One hundred forty individuals (43.3%) out of 323 reported feeling stigmatized. The marriage and total fertility rates were below the national rates of Turkey. Keeping their epilepsy as a secret from society was prevalent. Although the education rate was not below the national rate, unemployment rate was high, and the average monthly wage was significantly lower than that of the general population. The majority thought that their families were protective towards them. Only 2 of the 330 participants were living alone.

The present study supports the perception of stigma associated with epilepsy and its negative impact on the lives of PWE in Turkey. Clearly, more research is needed to understand the reasons for stigma and how to decrease its impact.