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School of Public Health
College of Health Sciences, Makerere University

Epilepsy beliefs and misconceptions among patient and community samples in Uganda

Abstract
Objective
The objective of the study was to characterize and compare the attitudes, beliefs, and perceptions about epilepsy across community and patient cohorts in Uganda.
Methods
This was a descriptive study utilizing two samples: a randomly selected, national survey community sample and a hospital-based patient sample of people with epilepsy (PWE) and their caregivers attending clinic settings in Kampala and Mbarara, Uganda for epilepsy care. Both samples were surveyed about their beliefs about epilepsy, its treatment, and people who have the illness. Multivariate linear regression was used to examine group differences and variables associated with specific beliefs.
Results
Among the 15,818 community survey participants who participated in this study, 435 study participants reported symptoms suggestive of recurrent seizures, and all 626 subjects in the hospital-based sample had confirmed epilepsy. Results revealed significant differences across groups in their endorsement of epilepsy as a contagion; 37% of people in the community unaffected by epilepsy, and 39% of people with suspected epilepsy who did not seek care believed that epilepsy was contagious by touch, in contrast to 8% of PWE or their caregivers attending regular hospital-based care. Higher educational attainment and income, and seeking regular hospital-based medical care were associated with less endorsement of epilepsy as a contagion, while age, education, income, area of residence, and presence of seizure symptoms, were significant predictors of support or belief in the basic rights of PWE. Study participants within the community who screened negative for seizures placed the most restrictions on rights for PWE. To varying degrees, the samples all endorsed the effectiveness of allopathic, traditional, and religious providers, and the use of pharmaceutical drugs, traditional rituals and herbs, and prayer.
Conclusions
People with epilepsy who are attending biomedical care for routine epilepsy care think differently about epilepsy, its treatment, and the rights of those with the disease than the general population. Within the community setting, more erroneous beliefs and negative attitudes about epilepsy and PWE persist, and they not only contribute to stigma but also interfere with the patients' health-seeking behavior. Further confounding the care of PWE, the pluralistic healthcare system in Uganda is evident in endorsements spanning biomedical, traditional, and religious treatment methods. Focused awareness campaigns utilizing local epilepsy societies are needed to promote epilepsy health literacy, to favorably impact acceptance and opportunities for PWE in Uganda, and to facilitate efficient uptake of biomedical care.
This article is part of the Special Issue “The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda"
Keywords
Epilepsy
Beliefs
Misconceptions
Rights
Contagion
Notes
Year of Publication
2021
Journal
Epilepsy & Behavior
Volume
114
Date Published
August 03, 2020
Type of Article
RESEARCH ARTICLE
Publisher
ISBN Number
1525-5050
URL
https://doi.org/10.1016/j.yebeh.2020.107300
DOI
doi: 10.1016/j.yebeh.2020.107300