Volume 79, Issue 2
  • ISSN: 0002-9637
  • E-ISSN: 1476-1645


Epilepsy-associated stigma is a well-recognized phenomenon that adversely impacts the lives of people with epilepsy (PWE). The burden of stigma follows power differentials, with socially and economically disenfranchised groups being particularly susceptible. To guide instrument development for quantitative studies, we conducted a series of focus group discussions among PWE and found that women with epilepsy experienced especially adverse social and economic problems because of epilepsy-associated stigma. The social burden of the disease largely outweighed the medical burden. Women revealed seizure worries related to accidental and intentional injury and the risk of breaking taboos as well as limitations in role fulfillment and extremes of social rejection by family and community. Our findings have implications for access to care and care delivery for vulnerable populations with epilepsy.


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  1. Scambler G, Hopkins A, 1986. Being epileptic: coming to terms with stigma. Social Health Illness 8 : 26–43.
  2. Harden CL, Kossoy A, Vera S, Nikolov B, 2004. Reaction to epilepsy in the workplace. Epilepsia 45 : 1134–1140.
  3. Aziz H, Akhtar SW, Hasan KZ, 1997. Epilepsy in Pakistan: stigma and psychosocial problems. A population-based epidemiologic study. Epilepsia 38 : 1069–1073.
  4. Baker G, Brooks J, Buck D, Jacoby A, 1999. The Stigma of Epilepsy: A European Perspective. Epilepsia 41 : 98–104.
  5. Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C, 1999. Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 40 : 1715–1720.
  6. Herodes M, Oun A, Haldre S, Kaasik AE, 2001. Epilepsy in Estonia: a quality-of-life study. Epilepsia 42 : 1061–1073.
  7. Jacoby A, 1994. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med 38 : 269–274.
  8. Link B, Phelan J, 2001. On Stigma and Its Public Health Implications. Stigma and Global Health: Developing a Research Agenda. Bethesda, MD. Available at: http://www.stigmaconference.nih.gov/LinkPaper.htm. Accessed June 22, 2008.
  9. Diop AG, de Boer HM, Mandlhate C, Prilipko L, Meinardi H, 2003. The global campaign against epilepsy in Africa. Acta Trop 87 : 149–159.
  10. Prpic I, Korotaj Z, Vlasic-Cicvaric I, Paucic-Kirincic E, Valerjev A, Tomac V, 2003. Teachers’ opinions about capabilities and behavior of children with epilepsy. Epilepsy Behav 4 : 142–145.
  11. Jacoby A, Gorry J, Gamble C, Baker GA, 2004. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 45 : 1405–1415.
  12. Baskind R, Birbeck GL, 2005. Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy Behav 7 : 68–73.
  13. Diamantopoulos N, Kaleyias J, Tzoufi M, Kotsalis C, 2006. A survey of public awareness, understanding, and attitudes toward epilepsy in Greece. Epilepsia 47 : 2154–2164.
  14. Adewuya AO, Oseni SB, Okeniyi JA, 2006. School performance of Nigerian adolescents with epilepsy. Epilepsia 47 : 415–420.
  15. Birbeck GL, Kalichi EM, 2004. Epilepsy prevalence in rural Zambia: a door-to-door survey. Trop Med Int Health 9 : 92–95.
  16. Kaiser C, Asaba G, Leichsenring M, Kabagambe G, 1998. High incidence of epilepsy related to onchocerciasis in West Uganda. Epilepsy Res 30 : 247–251.
  17. Longe AC, Osuntokun BO, 1989. Prevalence of neurological disorders in Udo, a rural community in southern Nigeria. Trop Geogr Med 41 : 36–40.
  18. Osuntokun BO, Adeuja AO, Nottidge VA, Bademosi O, Olumide A, Ige O, Yaria F, Bolis CL, Schoenberg BS, 1987. Prevalence of the epilepsies in Nigerian Africans: a community-based study. Epilepsia 28 : 272–279.
  19. Jilek-Aall L, Rwiza HT, 1992. Prognosis of epilepsy in a rural African community: a 30-year follow-up of 164 patients in an outpatient clinic in rural Tanzania. Epilepsia 33 : 645–650.
  20. Meyer A, Birbeck G, 2006. Determinants of the epilepsy treatment gap in developing countries. Neurology 66 : A343.
  21. Baskind R, Birbeck G, 2005. Epilepsy care in Zambia: a study of traditional healers. Epilepsia 46 : 1121–1126.
  22. Goffman E, 1963. Notes on the Management of Spoiled Identity. Englewood Cliffs: Penguin, Harmondsworth.
  23. 2004. Report of the Research Workshop on Health-Related Stigma and Discrimination. Available at: http://www.kit.nl/smartsite.shtml?ch=&id=2546. Accessed June 22, 2008.
  24. Atadzhanov M, Chomba E, Haworth A, Mbewe E, Birbeck GL, 2006. Knowledge, attitudes, behaviors, and practices regarding epilepsy among Zambian clerics. Epilepsy Behav 9 : 83–88.
  25. Birbeck GL, Chomba E, Atadzhanov M, Mbewe E, Haworth A, 2006. Zambian teachers: what do they know about epilepsy and how can we work with them to decrease stigma? Epilepsy Behav 9 : 275–280.
  26. Chomba EN, Haworth A, Atadzhanov M, Mbewe E, Birbeck GL, 2007. Zambian health care workers’ knowledge, attitudes, beliefs, and practices regarding epilepsy. Epilepsy Behav 10 : 111–119.
  27. Mbewe E, Haworth A, Atadzhanov M, Chomba E, Birbeck GL, 2007. Epilepsy-related knowledge, attitudes, and practices among Zambian police officers. Epilepsy Behav 10 : 456–462.
  28. Birbeck G, Chomba E, Atadzhanov M, Mbewe E, Haworth A, 2007. The social and economic impact of epilepsy in Zambia: a cross-sectional study. Lancet Neurol 6 : 39–44.
  29. Birbeck GL, 2000. Seizures in rural Zambia. Epilepsia 41 : 277–281.
  30. Parker R, Aggleton P, 2003. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med 57 : 13–24.
  • Received : 12 Mar 2008
  • Accepted : 26 May 2008

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