Differences in Personal Versus Community Perceptions of Epilepsy Etiology and Prognosis in the Republic of Guinea
Alexander Junxiang Chen1, Chieck Ousmane Soumah2, Male Dore2, Gysèle Naitormbaide2, Oumar Mara2, Desiré Neldje2, Seungwon Lee3, Nomin Enkhtsetseg4, Siddharth Satish3, Maya Mastick3, Isabella Gomez Hjerthen3, Farrah Mateen4, Fodé Abass Cissé2
1School of Medicine, University of California, San Francisco, 2Department of Neurology, Ignace Deen Hospital, 3Department of Neurology, Massachusetts General Hospital, 4Department of Neurology, Northwestern University
Objective:
As part of a broader study on people with epilepsy (PwE) in the Republic of Guinea, we aimed to characterize personal and community attitudes toward the etiology and prognosis of epilepsy.
Background:
Epilepsy represents a significant public health burden in Guinea, a low-income country in West Africa where epilepsy-related mortality and morbidity are high.
Design/Methods:

A mixed methods study was conducted in the outpatient neurology clinic of a large public hospital in Conakry, Guinea, between 2024–2025. Standardized survey-based interviews were administered to PwE in their preferred language by trained study staff. PwE ≥18 years with ≥2 unprovoked lifetime seizures were included. PwE who had a seizure in the preceding 24 hours were excluded. 


Results:

Of 101 PwE interviewed (mean age 30.4 ± 12.0 (SD) years; 57% men; mean duration of epilepsy: 16.3 ± 12.2 years), n=64 reported that community members attributed their epilepsy to supernatural causes such as “devils” or “spirits,” but only 15/64 personally endorsed a supernatural etiology. Conversely, n=24 personally believed in a biological cause, but only 5/24 reported congruent views from the community. PwE with 7–11 years of formal education (n=23) were the most likely to report community endorsement of a supernatural cause (19/23). Prognostic attitudes were largely positive; however, belief in the possibility of cure was highest among those who personally endorsed a supernatural etiology (12/15), exceeding that of participants without such beliefs. Likewise, a greater proportion of those whose community attributed their epilepsy to supernatural causes believed in a cure (46/64), relative to peers whose communities held non-supernatural explanations.


Conclusions:

Among PwE in Guinea, differences between personal and community beliefs regarding the etiology of epilepsy were evident and corresponded with differences in prognostic attitudes. Further research will help better characterize the sociocultural factors underlying these findings.

10.1212/WNL.0000000000217199
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