Abstracts

Rationale: Epilepsy is associated with a significant burden, not only of social stigma, but also self-stigma, which has a negative effect on the health of people with epilepsy (PWE). For example, stigma negatively affects the quality of life of individuals with epilepsy. This study used questionnaires to investigate the factors which affect self-stigma among PWE. Methods: Twenty PWE (12 females, aged 22-60 years) were recruited for the study. All participants completed a set of questions about attitudes/stigma toward PWE that were adapted from previously published studies; each question was rated on a 5-point Likert scale. The questions, or items, were grouped into three factors based on the results of a previous factor analysis: PWE' s ISOLATION, SELF-STIGMA toward PWE, and SOCIAL ABILITY of PWE. Only SELF-STIGMA and SOCIAL ABILITY were examined in this study. We used two types of items about social ability. Half of the items concerned the participants' own opinion, such as "I think PWE can work as well as others can". The other half concerned the opinions of the general public, such as, "Many people think PWE can work as well as others can". We named the former items "personal opinion" and the latter items "general opinion". Higher scores on SELF-STIGMA reflected stronger stigma and higher scores on SOCIAL ABILITY reflected more positive attitudes about (i.e., confidence in) the social ability of PWE. We used repeated-measures analysis of variance (ANOVA) and Spearman's rank correlation to compare factors which affected the scores. Results: The age at epilepsy onset showed a negative correlation with SELF-STIGMA and a positive correlation with SOCIAL ABILITY. In other words, people who were older at the onset of epilepsy reported less SELF-STIGMA and more confidence in the SOCIAL ABILITY of PWE. The duration of epilepsy was negatively correlated with SOCIAL ABILITY, which means PWE who had a longer history of epilepsy were less confident in the SOCIAL ABILITY of PWE. There were no significant correlations between the factors and the age of the participants, the number of seizures they had in the past year, or the number of anti-epileptic drugs they used. The "personal opinion" scores on the SOCIAL ABILITY of PWE were significantly higher than the "general opinion" scores. This result showed that PWE thought they participated well in social activity, but they felt that the general public might have a lower estimate of the social ability of PWE. Conclusions: We found younger age at the onset of epilepsy and longer duration of epilepsy adversely affected self-stigma and attitudes about the social ability of PWE. This study also revealed that PWE feel that the general public may have a lower estimate of the social ability of PWE than PWE's own self-assessment.