Sociocultural representations of epilepsy in the Central African Republic: A door-to-door survey

Abstract

Purpose: To describe sociocultural representations of epilepsy in a sub-Saharan Africa rural community using a population-based approach. Method: A cross-sectional door-to-door survey was underway on a rural community of the Central African Republic in 2015. A two-stage stratified sampling was performed. Trained care personnel performed individual face-to-face interviews. A standardized questionnaire was used to assess epilepsy. We collected sociodemographic data and cultural representations toward epilepsy in general population. Results: Overall, 1023 participants were interviewed. Epilepsy prevalence was 11.7 (95%CI 6.7-20.4) per 1000 people. In the rural community, epilepsy was identified as a supernatural disease related to bad luck (40.4%), witchcraft (31.3%) or a curse (28.3%). Epilepsy was confused with a mental disorder in 75.9% of subjects. Three quarters of participants (75.3%) considered epilepsy as a contagious disease. Saliva was mainly mentioned as a means of transmission in 63.8%. More than half of participants preferred or recommended traditional treatments. Only 24.8% believed in the efficacy of medical treatment for epilepsy. Conclusions: Epilepsy misconceptions are highly prevalent in rural sub-Saharan Africa. Understanding misrepresentations is an essential phase to develop culturally appropriate interventional programs in order to improve medical treatment adherence, quality of life, and to decrease stigma. Campaigns to raise awareness are needed in urban and rural population to reduce misconception and combat stigmatization.

How Much Do We Know? Assessing Public Knowledge, Awareness, Impact, and Awareness Guidelines for Epilepsy: A Systematic Review

“…Epilepsy is believed to be a disease that is contagious and can be transmitted through saliva [16,20]. Besides, there are reports that it is suggested to be a blood pressure disease [16,20]. While, others believe it to be a psychiatric disorder.…”

“…Another perception of the nature of epilepsy is that it is understood solemnly as a sickness that is characterized by falling [13]. In addition to this, 75.3% of people confuse epilepsy to be a contagious mental disorder and view it as associated with witchcraft, an evil curse, or pure bad luck [16]. People generally view epilepsy to be hereditary and contagious [11,13,21].…”

Epidemiological features of epilepsy in the countries of the African continent

“…По опросам людей в сельских общинах эпилепсия была определена как сверхъестественное заболевание, связанное с невезением (40,4%), колдовством (31,3%) или проклятием (28,3%). Три четверти участников (75,3%) рассматривали эпилепсию как инфекционное заболевание, а слюна воспринималась как средство передачи инфекции у 63,8% опрошенных [26].…”

The abbreviation “PWE” may carry a negative connotation compared with the labels “person with epilepsy” and “epileptic”

“…Something similar happens with the topics of contagiousness and supranatural possession. Other studies have demonstrated that these beliefs are still a major concern contributing to stigmatization, isolation and loss of social opportunities [31][32][33][34]. Saudi Arabian teachers would not approve a son/ daughter marriage to a PWE (67.9 %).…”