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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

  • Vivian P. Mushi,
  • Winifrida Kidima,
  • Isolide S. Massawe,
  • Pendo F. Magili,
  • Dan Bhwana,
  • Rahel Elishilia Kaaya,
  • Henrika Kimambo,
  • Herieth F. Hyera,
  • William Matuja,
  • Arjune Sen,
  • Josemir W. Sander,
  • Robert Colebunders,
  • Sloan Mahone,
  • Charles R. Newton,
  • Bruno P. Mmbando,
  • Albert Akpalu,
  • Anthony Godi,
  • Bruno Mmbando,
  • Cynthia Sottie,
  • Damazo T. Kadengye,
  • Daniel Mtai Mwanga,
  • Daniel Nana Yaw Abankwah,
  • David McDaid,
  • Dorcas Muli,
  • Emmanuel Darkwa,
  • Frederick Murunga Wekesah,
  • Gergana Manolova,
  • Gershim Asiki,
  • Herieth Hyera,
  • Helen Cross,
  • Isolide Sylvester,
  • Josemir Sander,
  • Mary Bitta,
  • Mercy Atieno,
  • Neerja Chowdhary,
  • Neerja Chowdhary,
  • Patrick Adjei,
  • Pendo Faustine,
  • Peter Otieno,
  • Richard Walker,
  • Ryan Wagner,
  • Sabina Asiamah,
  • Samuel Iddi,
  • Simone Grassi,
  • Sonia Vallentin,
  • Stella Waruingi,
  • Symon Kariuki,
  • Tarun Dua,
  • Thomas Kwasa,
  • Timothy Denison,
  • Vivian Mushi

摘要

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.