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© 2023. This work is published under http://creativecommons.org/licenses/by-nc-nd/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.

Abstract

Objective

Taenia solium (Tsolium) 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.

Methods

In Tsolium 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-depth interviews were conducted in Swahili language and analyzed thematically. The coding was undertaken by two independent researchers using NVivo (Version 12, QSR International).

Results

Thirty-eight 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 “falling disease,” perceived to be caused by witchcraft, and were unaware of the association between Tsolium 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.

Significance

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 Tsolium transmission and the insistence on hygiene measures. This could reduce the number of new infections with Tsolium, improve access to prompt biomedical treatment, and improve the lives of PWE.

Details

Title
Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig-keeping communities in Tanzania
Author
Makasi, Charles E 1   VIAFID ORCID Logo  ; Kilale, Andrew M 2 ; Ngowi, Bernard J 3 ; Lema, Yakobo 2 ; Katiti, Victor 4 ; Mahande, Michael J 5 ; Msoka, Elizabeth F 6 ; Stelzle, Dominik 7   VIAFID ORCID Logo  ; Winkler, Andrea S 8 ; Mmbaga, Blandina T 6 

 National Institute for Medical Research, Muhimbili Research Centre, Dar es Salaam, Tanzania; Kilimanjaro Christian Medical University College of Tumaini University, Moshi, Tanzania 
 National Institute for Medical Research, Muhimbili Research Centre, Dar es Salaam, Tanzania 
 National Institute for Medical Research, Muhimbili Research Centre, Dar es Salaam, Tanzania; Mbeya College of Health and Allied Sciences, University of Dar es Salaam, Mbeya, Tanzania 
 Department of Epidemiology and Biostatistics, Institute of Public Health, Kilimanjaro Christian Medical University College, Moshi, Tanzania; Kilimanjaro Clinical Research Institute, Kilimanjaro Christian Medical Centre, Moshi, Tanzania 
 Kilimanjaro Christian Medical University College of Tumaini University, Moshi, Tanzania; Department of Epidemiology and Biostatistics, Institute of Public Health, Kilimanjaro Christian Medical University College, Moshi, Tanzania 
 Kilimanjaro Christian Medical University College of Tumaini University, Moshi, Tanzania; Kilimanjaro Clinical Research Institute, Kilimanjaro Christian Medical Centre, Moshi, Tanzania 
 Center for Global Health, Department of Neurology, Faculty of Medicine, Technical University Munich, Munich, Germany 
 Center for Global Health, Department of Neurology, Faculty of Medicine, Technical University Munich, Munich, Germany; Centre for Global Health, Institute of Health and Society, University of Oslo, Oslo, Norway 
Pages
487-496
Section
ORIGINAL ARTICLES
Publication year
2023
Publication date
Jun 2023
Publisher
John Wiley & Sons, Inc.
e-ISSN
24709239
Source type
Scholarly Journal
Language of publication
English
ProQuest document ID
2821480229
Copyright
© 2023. This work is published under http://creativecommons.org/licenses/by-nc-nd/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.