Epilepsy patients’ perceptions about stigma, education, and awareness: Preliminary responses based on a community participatory approach

As individuals directly impacted by their experience of epilepsy and others’ responses to it, epilepsy patients’ opinions about education and awareness issues are needed. A community-based participatory approach was used to develop a survey of public and patient attitudes and perceptions about epilepsy, which was administered to persons with epilepsy. The majority of the 165 respondents (34% response rate) indicated they perceive misperceptions and stigma related to epilepsy in the general public, which they thought could be ameliorated through educational interventions. Respondents indicated potential avenues of educational intervention for the general public as well as for those with epilepsy, with recommended content and intervention type depending on target audience. The community-based participatory research process and the patients’ perceptions gathered through the resulting survey indicate potential activities for overcoming stigma and increasing education and awareness related to epilepsy.