Sociocultural and psychological features of perceived stigma reported by people with epilepsy in Benin

Summary Purpose: Stigma is a major burden of epilepsy. In sub-Saharan Africa the few studies that addressed epilepsy stigma emphasize enacted, rather than perceived, stigma. This inattention may compromise clinical management and delay help seeking, thereby contributing to the treatment gap. We assessed perceived stigma and identified sociocultural and psychological factors explaining greater stigma among people with epilepsy (PWE) in Benin. Methods: PWE included in this study were ascertained using a door-to-door survey in the general population in a Beninese rural area. We applied both qualitative and quantitative research methods to assess stigma and patient's experience and beliefs. An Explanatory Model Interview Catalogue (EMIC) and verbally administered questionnaires provided data for demographic, clinical, and sociocultural features. Sociocultural features were evaluated in terms of illness-related experience and sociocultural representations of epilepsy. Depression and anxiety were also screened. Results: Eighty PWE were included. About 68.7% reported feeling stigmatized. Multivariate regression revealed that factors independently associated with perceived stigma were experience of social isolation (p > 0.001), experience of marital problems (p > 0.01), and presence of anxiety disorder (p > 0.01). Discussion: Perceived stigma is an important issue in epilepsy in Benin. Social factors seem to be more influential than sociocultural representation of epilepsy. Insofar as research is needed in other African countries to determine the nature and relevant features of stigma to improve treatment and control