Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania: a mixed approach to determine the magnitude and driving factors

Abstract

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.

Keywords: Attitudes; Epilepsy; Mahenge; Onchocerciasis; Perceptions; Stigma; Tanzania.

Fig. 1

Flowchart of sampling procedures

Fig. 2

Venn diagrams showing participants with correct knowledge of the possible causes of epilepsy A and the distribution of overall participants' knowledge of the causes of epilepsy (B). Don’t know represents participants who did not know any of the right causes of epilepsy; witchcraft represents participants who perceived epilepsy to be caused by witchcraft or superstition, while those indicated as one and two or more represent those who knew one or more causes of epilepsy. Colour intensity increases with the count

Fig. 3

Distribution of scores for items used to assess attitudes toward epilepsy. The score distribution was skewed to the right of the x-axis, showing that more participants agreed with the statements rather than disagreed. A score of zero on the x-axis indicated neutrality

Fig. 4

Distribution of scores for items used to assess perception toward epilepsy. The score distribution was skewed to the right of the x-axis, showing that more participants agreed with the statements. A score of zero on the x-axis indicated neutrality

Fig. 5

Socio-demographic characteristics of the study participants in FGDs