Abstracts

Rationale: Social adjustment, an individual’s ability to adapt to and derive satisfaction from his or her social roles has been a particular focus of psychosocial research on epilepsy. Previous studies have found that epilepsy adversely affects educational attainment, marital and employment status, and overall quality of life. A variety of factors have been suggested as contributing to the decreased social adjustment of persons with epilepsy, such as seizure control, age at onset, perceived illness severity, and the associated stigma. This research examines how perceptions of one’s epilepsy (stigma and seizure-severity) mediate the influence of epilepsy-related factors on social adjustment and life goals such as educational attainment, marriage, and employment. This research study is unique in that it takes a more comprehensive view of how social adjustment is influenced by epilepsy. Methods: Data for this study include 150 non-surgical adult epilepsy patients at the Cleveland Clinic. The sample consisted of 54% females, 81% whites between the ages of 18 to 80 (mean=39.2, SD=13.6). Patients were asked to complete a self-administered questionnaire consisting of: 1) demographics; 2) epilepsy-related factors (i.e., childhood versus adult onset, duration of seizures in years, seizure type, and frequency) and perceptions of epilepsy, including a modified version of the Child Stigma Scale developed for children with epilepsy (Austin, et al., 2004); 3) the Social Adjustment Scale-Self Report (SAS-SR), a standardized psychological instrument assessing relationships (Weissman, 1999). Three sets of bivariate analyses were conducted examining relationships between: 1) epilepsy-related factors and perceptions of epilepsy (stigma and seizure severity); 2) perceptions of epilepsy and social adjustment; and 3) perceptions of epilepsy, social adjustment, and life goals such as education, marriage, and employment. Results: Younger respondents reported more epilepsy-related stigma and perceived their seizures to be more severe. Patients who experienced at least one partial seizure in the past 3 months reported more stigma, and those who had a grand mal seizure within the same time frame perceived their seizures as being more severe. Respondents who reported more epilepsy-related stigma were significantly less satisfied with their social situation overall. Stigma was also found to be related to 4 of the 6 sub-scales on the SAS-SR including less satisfaction with work, social leisure, extended family, and family unit. Greater stigma was also associated with being divorced/separated compared to married/widowed. There was no relationship between perceived seizure severity and overall social adjustment. Conclusions: The results suggest that perceptions of one’s epilepsy play an important role in shaping social adjustment and the satisfaction gained from relationships. The specific role of stigma in this process suggests the need to identify and implement effective strategies for reducing stigma among people with epilepsy and the general public.