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

Abstract

Epilepsy-associated stigma in Africa has been largely described 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 3-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 were also assessed. 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.

Stigma of Epilepsy among Patients and their Relatives Attending Charity Clinic, Omdurman-Sudan, June, 2012

“…However, it differed from what was mentioned by Paula T [10], in which they found gender to be a contributing factor for perception of stigma; females were more prone to develop felt stigma. This is perhaps due to the large sample size of that study [1850 samples] that may have given the association between gender and felt score which this study and many other studies failed to confirm [3,9,10]. Type of seizure didn't affect the felt score outcome in this study, which is similar to what was mentioned by Masharip Atadzhanov AH and by Paula T [3,9], but unlike what was reported by MARJU RA [8].…”

“…Age and gender didn't show marked difference on perception of felt stigma similar to study done by Masharip Atadzhanov AH, and another one done by Sang-Ahm Lee H-JY [3,9]. However, it differed from what was mentioned by Paula T [10], in which they found gender to be a contributing factor for perception of stigma; females were more prone to develop felt stigma.…”

“…This percentage is considered to be low compared to other developed communities like Netherlands (30%), Poland (56%) and France (62%) [3], lower than what was mentioned by MARJU R A and Sang-Ahm Lee [8,9] but nearly similar to results reported by Jacoby A. [1,8,9] Although these communities have a higher education level that can prevent stigmatizing actions and relieves fear and sense of shame from PWE, still the attitude didn't change.…”

“…The biomedical impact includes the characteristics of seizure, side effect of anti-epileptic drugs (AEDs), cognitive, behavioral and emotional co-morbidities [2]. Stigma has been defined by Link and Phalen as a status which exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that's allows them to unfold [3]. In other words, stigma is the carriage of the heaviness of the disease and the burden of being labeled as inferior or infected by others who are healthier and in a better (power) situation to label the diseased person, causing them the loss of and their status in the community [3].…”

“…Stigma has been defined by Link and Phalen as a status which exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that's allows them to unfold [3]. In other words, stigma is the carriage of the heaviness of the disease and the burden of being labeled as inferior or infected by others who are healthier and in a better (power) situation to label the diseased person, causing them the loss of and their status in the community [3]. Stigma passivity and hence its importance occur due to the impact on quality of life (QOL) and psychological status [4].…”