{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,2]],"date-time":"2026-06-02T15:22:30Z","timestamp":1780413750970,"version":"3.54.1"},"reference-count":43,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2023,3,20]],"date-time":"2023-03-20T00:00:00Z","timestamp":1679270400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002347","name":"Bundesministerium f\u00fcr Bildung und Forschung","doi-asserted-by":"publisher","award":["81203618"],"award-info":[{"award-number":["81203618"]}],"id":[{"id":"10.13039\/501100002347","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p><jats:italic>Taenia solium<\/jats:italic> (<jats:italic>T<\/jats:italic>.\u00a0<jats:italic>solium<\/jats:italic>) neurocysticercosis (NCC) affects the central nervous system and is associated with 30% of acquired epilepsy in some endemic areas. Epilepsy is a stigmatizing disease in many societies and people with epilepsy (PWE) and their families experience discrimination. This study aimed to explore the knowledge, perceptions, and experiences of epilepsy among PWE and their caregivers attending mental health clinics.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>In <jats:italic>T<\/jats:italic>.\u00a0<jats:italic>solium<\/jats:italic> endemic areas of Tanzania, PWE and their caregivers attending mental health clinics were identified and their informed consent was sought prior to study participation. In\u2010depth interviews were conducted in Swahili language and analyzed thematically. The coding was undertaken by two independent researchers using NVivo (Version 12, QSR International).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty\u2010eight participants were interviewed. Three themes were identified during the analysis, namely, knowledge about epilepsy; perception of epilepsy; and experience with epilepsy among PWE and their caregivers. Participants commonly defined epilepsy as a \u201cfalling disease,\u201d perceived to be caused by witchcraft, and were unaware of the association between <jats:italic>T<\/jats:italic>.\u00a0<jats:italic>solium<\/jats:italic> and epilepsy. Stigmatization of epilepsy was reported as a problem. Reported treatment patterns after the initial onset of epilepsy varied widely; however, patients usually began treatment with traditional healing methods, and only later opted for biomedical treatment. Patients had generally poor adherence to antiseizure medication, which could be caused by inadequate knowledge or irregular supply.<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>Level of knowledge about epilepsy was low, and NCC was not mentioned as a cause of epilepsy among participants. Epilepsy was generally perceived to be the result of witchcraft, evil spirits, or curses. Health education is needed, including an explanation of the model of <jats:italic>T<\/jats:italic>.\u00a0<jats:italic>solium<\/jats:italic> transmission and the insistence on hygiene measures. This could reduce the number of new infections with <jats:italic>T<\/jats:italic>.\u00a0<jats:italic>solium<\/jats:italic>, improve access to prompt biomedical treatment, and improve the lives of PWE.<\/jats:p><\/jats:sec>","DOI":"10.1002\/epi4.12720","type":"journal-article","created":{"date-parts":[[2023,3,10]],"date-time":"2023-03-10T09:12:28Z","timestamp":1678439548000},"page":"487-496","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in <i>Taenia solium<\/i> endemic pig\u2010keeping communities in Tanzania"],"prefix":"10.1002","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2484-617X","authenticated-orcid":false,"given":"Charles E","family":"Makasi","sequence":"first","affiliation":[{"name":"National Institute for Medical Research Muhimbili Research Centre  Dar es Salaam Tanzania"},{"name":"Kilimanjaro Christian Medical University College of Tumaini University  Moshi Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew M","family":"Kilale","sequence":"additional","affiliation":[{"name":"National Institute for Medical Research Muhimbili Research Centre  Dar es Salaam Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernard J","family":"Ngowi","sequence":"additional","affiliation":[{"name":"National Institute for Medical Research Muhimbili Research Centre  Dar es Salaam Tanzania"},{"name":"Mbeya College of Health and Allied Sciences University of Dar es Salaam  Mbeya Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yakobo","family":"Lema","sequence":"additional","affiliation":[{"name":"National Institute for Medical Research Muhimbili Research Centre  Dar es Salaam Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victor","family":"Katiti","sequence":"additional","affiliation":[{"name":"Department of Epidemiology and Biostatistics, Institute of Public Health Kilimanjaro Christian Medical University College  Moshi Tanzania"},{"name":"Kilimanjaro Clinical Research Institute Kilimanjaro Christian Medical Centre  Moshi Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael J","family":"Mahande","sequence":"additional","affiliation":[{"name":"Kilimanjaro Christian Medical University College of Tumaini University  Moshi Tanzania"},{"name":"Department of Epidemiology and Biostatistics, Institute of Public Health Kilimanjaro Christian Medical University College  Moshi Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth F.","family":"Msoka","sequence":"additional","affiliation":[{"name":"Kilimanjaro Christian Medical University College of Tumaini University  Moshi Tanzania"},{"name":"Kilimanjaro Clinical Research Institute Kilimanjaro Christian Medical Centre  Moshi Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6743-2818","authenticated-orcid":false,"given":"Dominik","family":"Stelzle","sequence":"additional","affiliation":[{"name":"Center for Global Health, Department of Neurology, Faculty of Medicine Technical University Munich  Munich Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea S","family":"Winkler","sequence":"additional","affiliation":[{"name":"Center for Global Health, Department of Neurology, Faculty of Medicine Technical University Munich  Munich Germany"},{"name":"Centre for Global Health, Institute of Health and Society University of Oslo  Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Blandina T.","family":"Mmbaga","sequence":"additional","affiliation":[{"name":"Kilimanjaro Christian Medical University College of Tumaini University  Moshi Tanzania"},{"name":"Kilimanjaro Clinical Research Institute Kilimanjaro Christian Medical Centre  Moshi Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,3,20]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ncl.2021.04.002"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.4103\/0972-2327.85873"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(19)30392-8"},{"key":"e_1_2_9_5_1","unstructured":"IBE.What is epilepsy?2022. 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