Patients’ understandings of disease play a critical role in treatment adherence. Ethnomedical research provides insight to these understandings by exploring causal explanations and disease conceptualizations, elucidating how patients make sense of and cope with their diagnoses. Understanding the global distribution and themes of this kind of research could improve care for diverse PWE in high-income countries (HIC).

A scoping review of PubMed, Embase, Web of Science, PsycINFO, CENTRAL, and Cochrane databases identified studies investigating beliefs about epilepsy. From 9226 de-duplicated studies published since 2000, 50 studies focusing exclusively on PWE met the inclusion criteria. 

The 50 studies involved 7303 patients across 31 countries. Sub-Saharan Africa contributed 12 studies, followed by Southern Asia (10), Western Asia (7), Northern Europe (6), South-Eastern Asia (3), Northern America (3), Latin America and the Caribbean (3), Eastern Asia (3), Northern Africa (2), and Western Europe (1). HICs published 17 studies (34%) – two studies surveyed participants of similar ethnicities, but only four studies reported participants’ countries of origin. Among all studies, three (6%) focused solely on children, while 33 (66%) focused on adults. 38 studies (76%) investigated beliefs about epilepsy as a brain disease, and 33 studies (66%) explored beliefs about supernatural causes of epilepsy. Beliefs about epilepsy being untreatable were examined in 31 studies (62%), and beliefs about epilepsy being contagious were analyzed in 28 studies (56%). Thematic coding and descriptive analysis of responses by PWE demonstrated high variation in beliefs about epilepsy.

Patients' beliefs about epilepsy are varied and overlapping. Most research originates from low- and middle-income countries, with limited studies in HICs addressing beliefs of PWE and involving diverse populations. Future research in HICs should explore beliefs of PWE to inform culturally sensitive care and enhance patient outcomes.