Epilepsy-associated stigma in Zambia: What factors predict greater felt stigma in a highly stigmatized population?

Epilepsy-associated stigma in Africa has been described largely in terms of enacted stigma or discrimination. We conducted a study of 169 adults with epilepsy attending epilepsy clinics in Zambia's Lusaka or Southern province using a three-item instrument (maximum score = 3). Potential determinants of felt stigma including age, gender, education, wealth, disclosure status (meaning whether or how their community members knew of their condition), seizure type (generalized vs partial), seizure frequency, the presence of visible epilepsy-associated stigmata, personal contagion beliefs, and community contagion beliefs. The median stigma score was 2.5, suggesting some ceiling effect in the instrument. People with epilepsy who believed their condition to be contagious, who thought their community believed epilepsy to be contagious, and whose condition had been revealed to their community against their wishes reported more felt stigma. Community and clinic-based educational campaigns to dispel contagion beliefs are needed.

Research Highlights
► People with epilepsy in Zambia rarely disclose their condition voluntarily. Seizures that occur in public generally force disclosure.
► Felt stigma was less for people who were able to conceal their epilepsy from their communities.
► If only a single message or “sound bite” can be conveyed, addressing contagion beliefs and debunking these may be the most effective.