Purpose: In Mali, epilepsy affects 15 individuals per thousand. Perceptions and attitudes have not seemingly evolved with advancing medical knowledge. The objective of this study was to assess parental beliefs and attitudes in families with and without affected children.
Methods: We enrolled 720 pediatric patients, half of whom had epilepsy, at Mali's largest hospital. We conducted semistructured interviews with the accompanying parent. Control families with unaffected patients and also had affected children were excluded.
Results: In total, 67% and 24% of families with and without epilepsy, respectively, lived in rural environments. Interviewees were mostly mothers in their 30s; 80% had not completed high school. About 22% of parents without an affected child had witnessed a seizure. During a seizure, 94% of parents with an affected child and 49% of parents without an affected child, respectively, would intervene; 7.5% and 21%, respectively, would wet the patient's face with cool water. Although parents with an affected child had more intimate knowledge of seizures, misconceptions prevailed, perhaps more so than in families without epilepsy: 79% and 66% of parents, respectively, considered epilepsy contagious; 43% vs. 69% thought that it inevitably led to psychosis; and 53% vs. 29% attributed epilepsy to supernatural causes. Finally, 63% of parents with an affected child reported consulting a traditional healer as first-line management for epilepsy.
Conclusions: Our study demonstrates widespread misconceptions in Mali regarding epilepsy. Our findings argue for more education initiatives focused on the entire population, including traditional healers, to provide knowledge, reduce stigma, and improve quality of life for individuals living with epilepsy.
Keywords: Africa; Attitude; Belief; Education; Epilepsy; Mali; Seizures; Stigma.
Copyright © 2014. Published by Elsevier Inc.