Abstracts

Rationale: To develop a basic understanding of the epilepsy patients' subjective and objective experiences with stigma in family, vocational and social relationships. We wanted to understand the stigma that patients perceive about themselves and others with epilepsy and how they believe they are perceived by those people with whom they interact. Methods: We administered an 84 question survey which included demographic and subjective multiple choice, likert scale and open-ended questions to 50 consecutive adult patients attending epilepsy clinic at Ohio State University Hospitals in May- June 2013. All surveys were administered by one of the researchers (CBW) who read the questionnaires and recorded the responses. Results: A total of 50 surveys were collected and analyzed, 19 male and 31 female respondants with an average age of 43 years with a range of 18-70. Approximately half reported being from rural setting and half from urban. Approximatley 50% of repondents were married. Approximately half completed high school. All patients reported feeling stigmatized irrespective of their level of employment, religious affiliation, maritial status, age or gender. Eighty-seven percent of unemployed men and 50% of employed men agree or strongly agree epilepsy influences ability to work, and 87.5% of unemployed men and 37.5% of employed men believe epilepsy influenced their ability to support themselves and their families. Ninety one percent of unemployed women believe epilepsy played a large part in their decision to not work outside the home. Eighty-three percent of those men and women who work have disclosed their epilepsy at work of those, 37.5% experienced demeanor change from bosses and coworkers. Of those that noticed a change in demeanor, 44% are now looked at as less capable, incompetent or suspicious while 44% experience support, understanding, and general concern for their well-being from their boss and coworkers. When asked about social relationships, 52% believe a person with epilepsy should never have to compromise on a prospective partner's status, most patients (60%) find that only sometimes a healthy, normal man would be willing to marry a woman with epilepsy, and 62% find that only sometimes a healthy, normal woman would be willing to marry a man with epilepsy. Fifty percent of respondents report that they feel their epilepsy is a shortcoming to those around them, and that their epilepsy is a nuisance to those around them. Conclusions: All patients report feeling stigmatized and most felt that their employment was affected by the diagnosis of epilepsy. The vast majority of unemployed women reported that their decisicion not to work was largely due to epilepsy. Many working patients report feeling that they were treated differently after the diagnosis was disclosed. Just under half of respondendents reported that they felt that people wtih epilepsy were less likely to be worthy of a healthy partner and that half felt that their epilepsy was a shortcoming. The social cost of stigma is likely under appreciated by healthcare workers as epilepsy patients tend to devalue themselves and others like themselves.