03261nas a2200289   4500000000100000008004100001260001000042653002500052653001400077653001800091653002300109100001400132700001400146700001300160700001100173700001300184700001500197700001300212700001400225700001500239700001400254245024100268856006400509300000900573520236400582022002502946       2023                            d  bWiley10aNeurology (clinical)10aNeurology10aTaenia solium10aNeurocysticercosis1 aMakasi CE1 aKilale AM1 aNgowi BJ1 aLema Y1 aKatiti V1 aMahande MJ1 aMsoka EF1 aStelzle D1 aWinkler AS1 aMmbaga BT00aKnowledge 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‐keeping communities in Tanzania  uhttps://onlinelibrary.wiley.com/doi/epdf/10.1002/epi4.12720  a1-233 a<p id="epi412720-sec-0001-title">Objective:&nbsp;<em>Taenia solium (T. solium)</em>&nbsp;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.</p>

<p id="epi412720-sec-0002-title">Methods: In&nbsp;<em>T. solium</em>&nbsp;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).</p>

<p id="epi412720-sec-0003-title">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 people with epilepsy and their caregivers. Participants commonly defined epilepsy as a ‘falling disease’, perceived to be caused by witchcraft, and were unaware of the association between&nbsp;<em>T. solium</em>&nbsp;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.</p>

<p id="epi412720-sec-0004-title">Significance:&nbsp;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&nbsp;<em>T. solium</em>&nbsp;transmission and the insistence on hygiene measures. This could reduce the number of new infections with&nbsp;<em>T. solium</em>, improve access to prompt biomedical treatment and improve the lives of PWE.</p>
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