Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania: a mixed approach to determine the magnitude and driving factors

Background: Epilepsy remains a significant public health concern in Tanzania, with affected individuals enduring stigma, whether through actions or perceptions. Myths, misunderstandings, and misconceptions about epilepsy have persisted due to a multitude of factors. Here, we assessed attitudes and perceptions toward epilepsy in Mahenge. Methods: A cross-sectional study utilising a mixed-methods approach was undertaken in eight villages in the Ulanga district of Mahenge, integrating a semi-structured questionnaire and focus group discussions (FGDs). The questionnaire involved 778 community members, and 15 FGDs were conducted (seven groups with people with epilepsy and eight without). Descriptive statistics, chi-square, and logistic regression were used for quantitative analysis, while we used NVivo version 14 for thematic analysis of qualitative data. Results: Of 778 participants, over half were women (425, 54.6%) with a median age of 41 years (IQR: 30–55) and most had completed primary education (79.9%). The majority of participants were aware of epilepsy (96.8%), yet they displayed low knowledge (51%), negative attitudes (45.5%), and perceptions (42.1%) towards the disorder. A low level of understanding was significantly associated with negative attitudes (Adjusted Odds Ratio [AOR] = 1.89, 95%CI: 1.41–2.53) and perceptions (AOR = 3.22, 95%CI: 2.05–5.04) towards epilepsy. In the qualitative analysis, often hereditary factors and infections were named as causes of epilepsy, along with misconceptions involving witchcraft and divine punishment. There was also a misconception about the contagiousness of epilepsy. Traditional healers were often the initial point of treatment. Epilepsy-related stigma was evident, with individuals with epilepsy facing derogatory labels, social isolation, and barriers to education. Lastly, there was a lack of understanding regarding a possible association between epilepsy and onchocerciasis. Conclusions: Despite high awareness of epilepsy, there is insufficient understanding, negative attitudes, and perceptions, including misconceptions and stigma about this neurologic condition. Community-based education programmes are essential for promoting proper healthcare-seeking behaviour and dispelling myths

Community knowledge, attitudes, and practices regarding epilepsy in Mahenge, Tanzania: A socio-anthropological study in an onchocerciasis-endemic area with a high prevalence of epilepsy

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

Accessibility to formal education among persons with epilepsy in Mahenge, Tanzania

Abstract: Background: Epilepsy is estimated to affect 50 million people globally, with 80% living in sub-Saharan Africa (SSA). Children with epilepsy (CWE) in SSA are often socially isolated, and many do not get access to school. This study aimed to explore the barriers hindering accessibility to formal education among CWE in Mahenge, Tanzania. Methods: The study was conducted in June 2022 in four villages (Mdindo, Msogezi, Mzelezi and Sali) using quantitative and qualitative methods. The quantitative included 203 persons with epilepsy (PWE), while the qualitative involved six focus group discussions and 17 in-depth interviews. Quantitative and qualitative data were analyzed using Stata and Nvivo software, respectively. Results: Of the 203 PWE, 62 (30.5%) had never enrolled in school, while 77 (54.6%) of those enrolled dropped-out before completing it. The perceived barriers to accessing education were categorized as indi-vidual barriers (such as frequent seizures, learning difficulties, anti-seizure medication side effects and perceived stigma), Community barriers (such as stigma and discrimination, negative beliefs and misconceptions, relocation to farms and poor socio-economic status), and Institutional barriers (including lack of knowledge about epilepsy among stake-holders, topography and distance to schools).Conclusion: There is a high rate of dropouts and non-enrolment of CWE in schools within the Mahenge area. Negative beliefs and low awareness of the community about epilepsy and formal education con-tribute to this issue. This calls for more advocacy to raise community awareness on epilepsy. The government should enforce an inclusive education policy and provide free and uninterrupted anti-seizure medication for seizure control.(c) 2023 Elsevier Inc. All rights reserved