TY - JOUR
T1 - Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania
T2 - a mixed approach to determine the magnitude and driving factors
AU - EPInA Study Group
AU - Mushi, Vivian P.
AU - Kidima, Winifrida
AU - Massawe, Isolide S.
AU - Magili, Pendo F.
AU - Bhwana, Dan
AU - Kaaya, Rahel Elishilia
AU - Kimambo, Henrika
AU - Hyera, Herieth F.
AU - Matuja, William
AU - Sen, Arjune
AU - Sander, Josemir W.
AU - Colebunders, Robert
AU - Mahone, Sloan
AU - Newton, Charles R.
AU - Mmbando, Bruno P.
AU - Mushi, Vivian
AU - Denison, Timothy
AU - Kwasa, Thomas
AU - Dua, Tarun
AU - Kariuki, Symon
AU - Waruingi, Stella
AU - Vallentin, Sonia
AU - Grassi, Simone
AU - Iddi, Samuel
AU - Asiamah, Sabina
AU - Wagner, Ryan
AU - Walker, Richard
AU - Otieno, Peter
AU - Faustine, Pendo
AU - Adjei, Patrick
AU - Chowdhary, Neerja
AU - Atieno, Mercy
AU - Bitta, Mary
AU - Sander, Josemir
AU - Sylvester, Isolide
AU - Cross, Helen
AU - Hyera, Herieth
AU - Asiki, Gershim
AU - Manolova, Gergana
AU - Wekesah, Frederick Murunga
AU - Darkwa, Emmanuel
AU - Muli, Dorcas
AU - McDaid, David
AU - Abankwah, Daniel Nana Yaw
AU - Mwanga, Daniel Mtai
AU - Kadengye, Damazo T.
AU - Sottie, Cynthia
AU - Mmbando, Bruno
AU - Godi, Anthony
AU - Akpalu, Albert
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/12
Y1 - 2024/12
N2 - 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.
AB - 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.
KW - Attitudes
KW - Epilepsy
KW - Mahenge
KW - Onchocerciasis
KW - Perceptions
KW - Stigma
KW - Tanzania
UR - http://www.scopus.com/inward/record.url?scp=85205336465&partnerID=8YFLogxK
U2 - 10.1186/s12889-024-20108-5
DO - 10.1186/s12889-024-20108-5
M3 - Article
C2 - 39333993
AN - SCOPUS:85205336465
SN - 1472-698X
VL - 24
JO - BMC Public Health
JF - BMC Public Health
IS - 1
M1 - 2608
ER -