Abstracts

RATIONALE: The purpose of the present study, part of a larger study of self-management in people with epilepsy was to examine the perception of stigma and depression among adults with epilepsy.
METHODS: Participants for the study are being recruited from two epilepsy centers-Atlanta and Boston. Individuals who agree to participate in the study are asked to complete three assessments each three months apart. The assessments include background information, questions about managing epilepsy and factors associated with self-management, and questions about feelings of depression and the perception of stigma. Currently 231 adult men and women with epilepsy are enrolled in the study. The study will enroll an additional 100 participants prior to the annual meeting. Data analysis will be conducted and presented for the total sample.
RESULTS: Participants range in age from 19-75 with a mean of 42 years. The sample is 57% female and 82% white. The mean age when seizures began was 22 years, and 77% of participants had a seizure within the past year. Preliminary analysis suggests that participants reporting higher levels of perceived stigma also report higher levels of depressed feelings (r = .386), more negative outcome expectancies related to medication effects (r = -.204) and seizures (r = .598), and lower levels of confidence to manage epilepsy (r = -.419). Levels of perceived stigma are similar for men and women and across racial/ethnic and age groups. In regression analysis, negative outcome expectancies for seizures, lower levels of social support, and lower levels of self-management explained the greatest amount of variance in perceived stigma. Participants reporting higher levels of depression are more likely to report higher levels of perceived stigma (r = .386), more negative outcome expectancies related to medication effects (r = -.430) and seizures (r = .474), lower levels of confidence (r = -.450) and self-management practices (r = -.226). Levels of depression are similar for men and women and across racial/ethnic and age groups. In a regression analysis, 65% of variance in depression was explained by negative outcome expectancies, lower levels of social support and self-management practices.
CONCLUSIONS: The results of the study suggest that both perceived stigma and depression are significant for people with epilepsy and affect factors that are known to be important in the self-management of epilepsy. Understanding who is at greatest risk for depression or feeling the effects of stigma could lead to the development of preventive measures.
Support: National Institute of Nursing Research R01 NR04770