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

Mushi, Vivian P; Kidima, Winifrida; Massawe, Isolide S; Magili, Pendo F; Bhwana, Dan; Kaaya, Rahel Elishilia; Kimambo, Henrika; ... EPInA Study Group, .; + view all (2024) Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania: a mixed approach to determine the magnitude and driving factors. BMC Public Health , 24 , Article 2608. 10.1186/s12889-024-20108-5. Green open access

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Abstract

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.

Type: Article
Title: Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania: a mixed approach to determine the magnitude and driving factors
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12889-024-20108-5
Publisher version: https://doi.org/10.1186/s12889-024-20108-5
Language: English
Keywords: Attitudes, Perceptions, Epilepsy, Stigma, Onchocerciasis, Mahenge, Tanzania
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Experimental Epilepsy
URI: https://discovery.ucl.ac.uk/id/eprint/10198123
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