Neurology Department, Gabriel Touré Teaching Hospital, PO Box 267, Bamako, Mali.
Neurology Department, Gabriel Touré Teaching Hospital, PO Box 267, Bamako, Mali; Neurology Department, Ibn Tofail Hospital, BP 7010, Sidi Abbad, Marrakesh 40000, Morocco.
Epilepsy Behav. 2014 Apr;33:115-21. doi: 10.1016/j.yebeh.2014.02.031. Epub 2014 Mar 19.
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.
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.
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.
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.
在马里，每千名居民中有 15 人患有癫痫。尽管医学知识不断进步，但人们对癫痫的认知和态度似乎并未改变。本研究旨在评估癫痫患儿家庭与非癫痫患儿家庭的父母信念和态度。
我们在马里最大的医院招募了 720 名儿科患者，其中一半患有癫痫。我们对陪同的家长进行了半结构化访谈。排除了有未患病子女的对照组家庭和有患病子女的家庭。
患有癫痫和未患有癫痫的家庭中，分别有 67%和 24%居住在农村环境。受访者大多是 30 多岁的母亲；80%没有完成高中学业。大约 22%的没有子女患有癫痫的父母曾目睹过癫痫发作。在癫痫发作期间，94%有患病子女的父母和 49%没有患病子女的父母会进行干预；分别有 7.5%和 21%会用冷水弄湿患者的脸。尽管有患病子女的父母对癫痫有更深入的了解，但仍存在误解，尤其是在没有癫痫的家庭中：分别有 79%和 66%的父母认为癫痫具有传染性；43%和 69%的父母认为癫痫会不可避免地导致精神错乱；53%和 29%的父母认为癫痫是由超自然原因引起的。最后，63%有患病子女的父母表示会在首次治疗癫痫时咨询传统治疗师。
我们的研究表明，马里对癫痫存在广泛的误解。我们的研究结果表明，需要开展更多的教育计划，覆盖整个人群，包括传统治疗师，以提供知识，减少污名化，并改善癫痫患者的生活质量。
