Internalised stigma of epilepsy in Indonesian social media communities : an observational study

The prevalence of epilepsy cases in developing countries is currently more than 10 per 1000 population. Stigma plays a role in the successful treatment of epilepsy. Demographic and clinical information, along with an internal stigma surrounding PWE (people with epilepsy), is necessary to perform optimal treatment for epilepsy. This study applied a descriptive observational design with a cross-sectional approach. The data were collected from an online questionnaire from PWE who are members of the social media community for PWE. A total of 64.65% of the total 99 respondents were PWE themselves, 57.57% were 20–40 years old; 56,57% were females; 42.42% were university graduates; 51.52% were single; 47.47% were employed; and 43.43% reported an above-average income. Furthermore, 86.87% had seizure onset before 20 years old; 72.73% had generalised seizure type; and 41.41% used polytherapy anti-epileptic drugs (AED). A total of 88.89% of the respondents felt helped by the PWE social media community they were part of; 66 people reported moderate stigmas; and 33 people reported low stigmas. The demographic data, clinical characteristics and perceptions of internal stigmas of PWE were also obtained. Therefore, internal stigmas are still present amongst Indonesian PWE.