02932nas a2200265 4500000000100000008004100001260001600042653002800058653002500086653001400111653001300125100001500138700001400153700001500167700001300182700001300195700001400208700001300222700001800235245019000253300001100443490000800454520219000462022001402652 2022 d bElsevier BV10aBehavioral Neuroscience10aNeurology (clinical)10aNeurology10aEpilepsy1 aMmbando BP1 aBhwana DK1 aMassawe IS1 aMagili P1 aMahone S1 aMakunde W1 aMushi AK1 aColebunders R00aCommunity knowledge, attitudes, and practices regarding epilepsy in Mahenge, Tanzania: A socio-anthropological study in an onchocerciasis-endemic area with a high prevalence of epilepsy a1085680 v1283 a

Background: Throughout Africa, epilepsy is a highly stigmatized condition. It is often considered to be contagious. This study aimed to assess community knowledge, attitude, and practices toward epilepsy in four villages namely Mdindo, Msogezi, Mzelezi, and Sali within Mahenge division, in Morogoro region, Tanzania. These villages are located in an onchocerciasis-endemic area with a high prevalence of epilepsy.

Methods: A qualitative cross-sectional study was conducted between June and July 2019 within the framework of a multi-disciplinary research project investigating the association between onchocerciasis and epilepsy. Focus group discussions (FGDs) and in-depth interviews (IDIs) were held with persons with epilepsy (PWE) and their caretakers, community resource persons, and program coordinators of the neglected tropical diseases program.

Results: The main symptoms of epilepsy were well described by all participants in all villages. PWE and caretakers in all villages considered epilepsy to be a major health problem and some participants ranked it second in importance after malaria. The reported perceived causes of epilepsy included febrile seizures during childhood (locally known as degedege), heredity, evil spirits, and inhaling flatus or touching secretions from PWE, especially during seizures. Knowledge about the association between epilepsy and onchocerciasis was low. People with epilepsy are disregarded, stigmatized, and marginalized from various opportunities such as conjugal rights, schooling, leadership roles, and property inheritance. Traditional healers are often the first contact when seeking care after a person develops epilepsy.

Conclusion: Epilepsy is a major health burden and public health concern in the Mahenge area. The negative attitudes toward PWE and misconceptions about the causes of epilepsy contribute to delays in seeking care at health facilities. Findings from this study will be used to optimize the comprehensive community-based epilepsy treatment program that was recently initiated in the area.

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