Main Article Content
Abstract
Purpose: This review synthesizes research on perceptions and misconceptions about epilepsy across various countries, exploring beliefs that attribute epilepsy to supernatural causes, contagion, or mental retardation. It hypothesizes that these misconceptions contribute to the stigmatization and social exclusion of individuals with epilepsy (PwE).
Research Design and Methodology: The review compiles findings from studies conducted in Mali, Nigeria, Pakistan, Saudi Arabia, Egypt, and Ethiopia. These studies focus on teachers, parents, and community members and employ qualitative methods such as surveys and interviews. Sampling methodologies vary but include educational and community-based settings.
Findings and Discussion: The findings indicate that epilepsy-related misconceptions are widespread, leading to stigma and exclusion from education, employment, and social interactions. Many communities view epilepsy as contagious or caused by supernatural forces, reinforcing discrimination. Teachers and parents play a role in perpetuating these beliefs, further marginalizing PwE.
Implications: Addressing epilepsy-related stigma requires targeted education and awareness programs. Healthcare professionals, educators, and community leaders must challenge misconceptions and promote inclusive environments. The review highlights the need for culturally sensitive interventions and further research on effective stigma-reduction strategies.
Keywords
Article Details

This work is licensed under a Creative Commons Attribution 4.0 International License.
References
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- Al-Dossari, K. K., Al-Ghamdi, S., Al-Zahrani, J., Abdulmajeed, I., Alotaibi, M., Almutairi, H., BinSwilim, A., & Alhatlan, O. (2018). Public knowledge, awareness, and attitudes toward epilepsy in Al-Kharj Governorate, Saudi Arabia. Journal of Family Medicine and Primary Care, 7(1), 184-190. https://doi.org/10.4103/jfmpc.jfmpc_281_17
- Al-Hashemi, E., Ashkanani, A., Al-Qattan, H., Mahmoud, A., Al-Kabbani, M., Al-Juhaidli, A., Jaafar, A., & Al-Hashemi, Z. (2016). Knowledge about epilepsy and attitudes toward students with epilepsy among middle and high school teachers in Kuwait. International Journal of Pediatrics, 2016, Article 5138952. https://doi.org/10.1155/2016/5138952
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- Atadzhanov, M., Haworth, A., Chomba, E., Mbewe, E., & Birbeck, G. L. (2010). Epilepsy-associated stigma in Zambia: What factors predict greater felt stigma in a highly stigmatized population? Epilepsy & Behaviour, 19(3), 414-418. https://doi.org/10.1016/j.yebeh.2010.07.004
- Bekiroğlu, N., Özkan, R., Gürses, C., Arpacı, B., & Dervent, A. (2004). A study on awareness and attitude of teachers on epilepsy in Istanbul. Seizure, 13(7), 517-522. https://doi.org/10.1016/j.seizure.2003.12.007
- Bensken, W. P., Alberti, P. M., Khan, O. I., Williams, S. M., Stange, K. C., Fernandez-Baca Vaca, G., Jobst, B. C., Sajatovic, M., & Koroukian, S. M. (2022). A framework for health equity in people living with epilepsy. Epilepsy Research, 188, 107038. https://doi.org/10.1016/j.eplepsyres.2022.107038
- Bhesania, N. H., Rehman, A., Savul, I. S., & Zehra, N. (2014). Knowledge, attitude, and practices of school teachers towards epileptic school children in Karachi, Pakistan. Pakistan Journal of Medical Sciences, 30(1), 220-224. https://doi.org/10.12669/pjms.301.4307
- Brandt, L., Liu, S., Heim, C., & Heinz, A. (2022). The effects of social isolation stress and discrimination on mental health. Translational Psychiatry, 12. https://doi.org/10.1038/s41398-022-02178-4
- Eze, C. N., Ebuehi, O. M., Brigo, F., Otte, W. M., & Igwe, S. C. (2015). Effect of health education on trainee teachers' knowledge, attitudes, and first aid management of epilepsy: An interventional study. Seizure, 33, 46-53. https://doi.org/10.1016/j.seizure.2015.08.006
- Ezeala-Adikaibe, B. A., Achor, J. U., Nwabueze, A. C., Agomoh, A. O., Chikani, M., Ekenze, O. S., Onwuekwe, I. O., & Orakwue, M. (2014). Knowledge, attitude, and practice of epilepsy among community residents in Enugu, Southeast Nigeria. Seizure, 23(10), 882-888. https://doi.org/10.1016/j.seizure.2014.08.003
- Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., ... & Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55(4), 475-482. https://doi.org/10.1111/epi.12550
- Gebrewold, M. A., Enquselassie, F., Teklehaimanot, R., & Gugssa, S. A. (2016). Ethiopian teachers: Their knowledge, attitude, and practice towards epilepsy. BMC Neurology, 16, 167. https://doi.org/10.1186/s12883-016-0665-6
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- Gosain, K., & Samanta, T. (2022). Understanding the role of stigma and misconceptions in the experience of epilepsy in India: Findings from a mixed-methods study. Frontiers in Sociology, 7. https://doi.org/10.3389/fsoc.2022.790145
- Gyaase, D., Gyaase, T. I., Tawiah, R., Atta-Osei, G., Owusu, I., Mprah, W. K., & Enuameh, Y. A. (2023). Perceived causes and management of epilepsy among rural community dwellers in Ghana: A qualitative synthesis. Frontiers in Neurology, 14. https://doi.org/10.3389/fneur.2023.1230336
- Karimi, N., & Akbarian, S. A. (2015). Knowledge and attitude toward epilepsy of close family members of people with epilepsy in North of Iran. Advances in Medicine, 2016, Article 8672853. https://doi.org/10.1155/2016/8672853
- Karimi, N., & Akbarian, S. A. (2016). Knowledge and attitude toward epilepsy of close family members of people with epilepsy in North of Iran. Advances in Medicine, 2016, Article 8672853. https://doi.org/10.1155/2016/8672853
- Kaddumukasa, M., Kaddumukasa, M. N., Buwembo, W., Munabi, I. G., Blixen, C., Lhatoo, S., Sewankambo, N., Katabira, E., & Sajatovic, M. (2018). Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa: A systematic review. Epilepsy & Behavior, 85, 21-31. https://doi.org/10.1016/j.yebeh.2018.04.014
- Lewinski, A. A., Shapiro, A., Gierisch, J. M., Goldstein, K. M., Blalock, D. V., Luedke, M. W., Gordon, A. M., Bosworth, H. B., Drake, C., Lewis, J. D., Sinha, S. R., Husain, A. M., Tran, T. T., & Van Noord, M. G. (2020). Barriers and facilitators to implementation of epilepsy self-management programs: A systematic review using qualitative evidence synthesis methods. Systematic Reviews, 9. https://doi.org/10.1186/s13643-020-01322-9
- Maiga, Y., Albakaye, M., Diallo, L. L., Diop, M. S., Menta, I., Traoré, S., ... & Dème, H. (2014). Community knowledge, attitudes, and practices regarding epilepsy in Mali. Epilepsy & Behavior, 33, 115-121. https://doi.org/10.1016/j.yebeh.2014.02.009
- Makasi, C. E., Kilale, A. M., Ngowi, B. J., Lema, Y., Katiti, V., Mahande, M. J., Msoka, E. F., Stelzle, D., Winkler, A. S., & Mmbaga, B. T. (2023). Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig‐keeping communities in Tanzania. Epilepsy Open, 8(2), 487-496. https://doi.org/10.1002/epi4.12720
- Makhado, T. G., Sepeng, N. V., & Makhado, L. (2024). A systematic review of the effectiveness of epilepsy education programs on knowledge, attitudes, and skills among primary school learners. Frontiers in Neurology, 15. https://doi.org/10.3389/fneur.2024.1356920
- Mayor, R., Gunn, S., Reuber, M., & Simpson, J. (2021). Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence. Seizure, 94, 142-160. https://doi.org/10.1016/j.seizure.2021.11.021
- Nemathaga, M., Maputle, M. S., Makhado, L., & Mashau, N. S. (2023). Diagnosis of epilepsy by traditional healers and its effect on access to care and disease management: A qualitative study. Neuropsychiatric Disease and Treatment, 19, 973-983. https://doi.org/10.2147/NDT.S392479
- Niu, T., Kobau, R., Zack, M. M., & Greenlund, K. J. (2022). Barriers to and disparities in access to health care among adults aged ≥18 years with epilepsy — United States, 2015 and 2017. Morbidity and Mortality Weekly Report (MMWR), 71(21), 697-702.
- Owolabi, L. F., Shehu, N. M., & Owolabi, S. D. (2014). Teachers' perception about epilepsy in Nigerian children. Journal of Pediatric Neurosciences, 9(2), 103-107. https://doi.org/10.4103/1817-1745.139286
- Owolabi, L. F., Shehu, N. M., & Owolabi, S. D. (2014). Epilepsy and education in developing countries: A survey of school teachers' knowledge about epilepsy and their attitude towards students with epilepsy in Northwestern Nigeria. The Pan African Medical Journal, 18. https://doi.org/10.11604/pamj.2014.18.255.3607
- Pellinen, J. (2022). Treatment gaps in epilepsy. Frontiers in Epidemiology, 2. https://doi.org/10.3389/fepid.2022.976039
- Shehata, G. A., & Mahran, D. G. (2011). Knowledge and attitude of epilepsy among secondary school students (epileptic and non-epileptic) in Assiut City, Egypt. Epilepsy Research, 95(1-2), 130-135. https://doi.org/10.1016/j.eplepsyres.2011.03.011
- Thomas, S. V., & Nair, A. (2011). Confronting the stigma of epilepsy. Annals of Indian Academy of Neurology, 14(3), 158-163. https://doi.org/10.4103/0972-2327.85873
- World Health Organization. (2019). Epilepsy: A public health imperative. World Health Organization. https://www.who.int/publications/i/item/epilepsy-a-public-health-imperative
- World Health Organization. (2024, February 7). Epilepsy. Retrieved from https://www.who.int/news-room/fact-sheets/detail/epilepsy
- Yeni, K. (2023). Stigma and psychosocial problems in patients with epilepsy. Exploratory Neuroscience, 2, 251-263. https://doi.org/10.37349/en.2023.00026
References
Abbas, I. M., & Babikar, H. E. (2011). Knowledge, practice, and attitude toward epilepsy among primary and secondary school teachers in South Gezira locality, Gezira State, Sudan. Journal of Family and Community Medicine, 18(1), 17-21. https://doi.org/10.4103/1319-1683.78633
Al-Dossari, K. K., Al-Ghamdi, S., Al-Zahrani, J., Abdulmajeed, I., Alotaibi, M., Almutairi, H., BinSwilim, A., & Alhatlan, O. (2018). Public knowledge, awareness, and attitudes toward epilepsy in Al-Kharj Governorate, Saudi Arabia. Journal of Family Medicine and Primary Care, 7(1), 184-190. https://doi.org/10.4103/jfmpc.jfmpc_281_17
Al-Hashemi, E., Ashkanani, A., Al-Qattan, H., Mahmoud, A., Al-Kabbani, M., Al-Juhaidli, A., Jaafar, A., & Al-Hashemi, Z. (2016). Knowledge about epilepsy and attitudes toward students with epilepsy among middle and high school teachers in Kuwait. International Journal of Pediatrics, 2016, Article 5138952. https://doi.org/10.1155/2016/5138952
Almarwani, B., Alqelaiti, E., Aljohani, A., Abuanq, L., Alhujaili, R., & Aljohani, R. (2023). Knowledge and attitude about epilepsy among school teachers in Madinah, Saudi Arabia. Cureus, 15(9), e44572. https://doi.org/10.7759/cureus.44572
Atadzhanov, M., Haworth, A., Chomba, E., Mbewe, E., & Birbeck, G. L. (2010). Epilepsy-associated stigma in Zambia: What factors predict greater felt stigma in a highly stigmatized population? Epilepsy & Behaviour, 19(3), 414-418. https://doi.org/10.1016/j.yebeh.2010.07.004
Bekiroğlu, N., Özkan, R., Gürses, C., Arpacı, B., & Dervent, A. (2004). A study on awareness and attitude of teachers on epilepsy in Istanbul. Seizure, 13(7), 517-522. https://doi.org/10.1016/j.seizure.2003.12.007
Bensken, W. P., Alberti, P. M., Khan, O. I., Williams, S. M., Stange, K. C., Fernandez-Baca Vaca, G., Jobst, B. C., Sajatovic, M., & Koroukian, S. M. (2022). A framework for health equity in people living with epilepsy. Epilepsy Research, 188, 107038. https://doi.org/10.1016/j.eplepsyres.2022.107038
Bhesania, N. H., Rehman, A., Savul, I. S., & Zehra, N. (2014). Knowledge, attitude, and practices of school teachers towards epileptic school children in Karachi, Pakistan. Pakistan Journal of Medical Sciences, 30(1), 220-224. https://doi.org/10.12669/pjms.301.4307
Brandt, L., Liu, S., Heim, C., & Heinz, A. (2022). The effects of social isolation stress and discrimination on mental health. Translational Psychiatry, 12. https://doi.org/10.1038/s41398-022-02178-4
Eze, C. N., Ebuehi, O. M., Brigo, F., Otte, W. M., & Igwe, S. C. (2015). Effect of health education on trainee teachers' knowledge, attitudes, and first aid management of epilepsy: An interventional study. Seizure, 33, 46-53. https://doi.org/10.1016/j.seizure.2015.08.006
Ezeala-Adikaibe, B. A., Achor, J. U., Nwabueze, A. C., Agomoh, A. O., Chikani, M., Ekenze, O. S., Onwuekwe, I. O., & Orakwue, M. (2014). Knowledge, attitude, and practice of epilepsy among community residents in Enugu, Southeast Nigeria. Seizure, 23(10), 882-888. https://doi.org/10.1016/j.seizure.2014.08.003
Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., ... & Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55(4), 475-482. https://doi.org/10.1111/epi.12550
Gebrewold, M. A., Enquselassie, F., Teklehaimanot, R., & Gugssa, S. A. (2016). Ethiopian teachers: Their knowledge, attitude, and practice towards epilepsy. BMC Neurology, 16, 167. https://doi.org/10.1186/s12883-016-0665-6
Gertie Makhado, T., & Makhado, L. (2024). Perspective chapter: Stigma and its impact on people living with epilepsy in rural communities. IntechOpen. https://doi.org/10.5772/intechopen.112867
Gosain, K., & Samanta, T. (2022). Understanding the role of stigma and misconceptions in the experience of epilepsy in India: Findings from a mixed-methods study. Frontiers in Sociology, 7. https://doi.org/10.3389/fsoc.2022.790145
Gyaase, D., Gyaase, T. I., Tawiah, R., Atta-Osei, G., Owusu, I., Mprah, W. K., & Enuameh, Y. A. (2023). Perceived causes and management of epilepsy among rural community dwellers in Ghana: A qualitative synthesis. Frontiers in Neurology, 14. https://doi.org/10.3389/fneur.2023.1230336
Karimi, N., & Akbarian, S. A. (2015). Knowledge and attitude toward epilepsy of close family members of people with epilepsy in North of Iran. Advances in Medicine, 2016, Article 8672853. https://doi.org/10.1155/2016/8672853
Karimi, N., & Akbarian, S. A. (2016). Knowledge and attitude toward epilepsy of close family members of people with epilepsy in North of Iran. Advances in Medicine, 2016, Article 8672853. https://doi.org/10.1155/2016/8672853
Kaddumukasa, M., Kaddumukasa, M. N., Buwembo, W., Munabi, I. G., Blixen, C., Lhatoo, S., Sewankambo, N., Katabira, E., & Sajatovic, M. (2018). Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa: A systematic review. Epilepsy & Behavior, 85, 21-31. https://doi.org/10.1016/j.yebeh.2018.04.014
Lewinski, A. A., Shapiro, A., Gierisch, J. M., Goldstein, K. M., Blalock, D. V., Luedke, M. W., Gordon, A. M., Bosworth, H. B., Drake, C., Lewis, J. D., Sinha, S. R., Husain, A. M., Tran, T. T., & Van Noord, M. G. (2020). Barriers and facilitators to implementation of epilepsy self-management programs: A systematic review using qualitative evidence synthesis methods. Systematic Reviews, 9. https://doi.org/10.1186/s13643-020-01322-9
Maiga, Y., Albakaye, M., Diallo, L. L., Diop, M. S., Menta, I., Traoré, S., ... & Dème, H. (2014). Community knowledge, attitudes, and practices regarding epilepsy in Mali. Epilepsy & Behavior, 33, 115-121. https://doi.org/10.1016/j.yebeh.2014.02.009
Makasi, C. E., Kilale, A. M., Ngowi, B. J., Lema, Y., Katiti, V., Mahande, M. J., Msoka, E. F., Stelzle, D., Winkler, A. S., & Mmbaga, B. T. (2023). Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig‐keeping communities in Tanzania. Epilepsy Open, 8(2), 487-496. https://doi.org/10.1002/epi4.12720
Makhado, T. G., Sepeng, N. V., & Makhado, L. (2024). A systematic review of the effectiveness of epilepsy education programs on knowledge, attitudes, and skills among primary school learners. Frontiers in Neurology, 15. https://doi.org/10.3389/fneur.2024.1356920
Mayor, R., Gunn, S., Reuber, M., & Simpson, J. (2021). Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence. Seizure, 94, 142-160. https://doi.org/10.1016/j.seizure.2021.11.021
Nemathaga, M., Maputle, M. S., Makhado, L., & Mashau, N. S. (2023). Diagnosis of epilepsy by traditional healers and its effect on access to care and disease management: A qualitative study. Neuropsychiatric Disease and Treatment, 19, 973-983. https://doi.org/10.2147/NDT.S392479
Niu, T., Kobau, R., Zack, M. M., & Greenlund, K. J. (2022). Barriers to and disparities in access to health care among adults aged ≥18 years with epilepsy — United States, 2015 and 2017. Morbidity and Mortality Weekly Report (MMWR), 71(21), 697-702.
Owolabi, L. F., Shehu, N. M., & Owolabi, S. D. (2014). Teachers' perception about epilepsy in Nigerian children. Journal of Pediatric Neurosciences, 9(2), 103-107. https://doi.org/10.4103/1817-1745.139286
Owolabi, L. F., Shehu, N. M., & Owolabi, S. D. (2014). Epilepsy and education in developing countries: A survey of school teachers' knowledge about epilepsy and their attitude towards students with epilepsy in Northwestern Nigeria. The Pan African Medical Journal, 18. https://doi.org/10.11604/pamj.2014.18.255.3607
Pellinen, J. (2022). Treatment gaps in epilepsy. Frontiers in Epidemiology, 2. https://doi.org/10.3389/fepid.2022.976039
Shehata, G. A., & Mahran, D. G. (2011). Knowledge and attitude of epilepsy among secondary school students (epileptic and non-epileptic) in Assiut City, Egypt. Epilepsy Research, 95(1-2), 130-135. https://doi.org/10.1016/j.eplepsyres.2011.03.011
Thomas, S. V., & Nair, A. (2011). Confronting the stigma of epilepsy. Annals of Indian Academy of Neurology, 14(3), 158-163. https://doi.org/10.4103/0972-2327.85873
World Health Organization. (2019). Epilepsy: A public health imperative. World Health Organization. https://www.who.int/publications/i/item/epilepsy-a-public-health-imperative
World Health Organization. (2024, February 7). Epilepsy. Retrieved from https://www.who.int/news-room/fact-sheets/detail/epilepsy
Yeni, K. (2023). Stigma and psychosocial problems in patients with epilepsy. Exploratory Neuroscience, 2, 251-263. https://doi.org/10.37349/en.2023.00026