Sociocultural aspects and different types of stigmatization in epilepsy
https://doi.org/10.14412/2074-2711-2018-1S-89-95
Abstract
This literature review deals with knowledge and beliefs about epilepsy and with the attitude of patients, relatives, and society as a whole towards epilepsy. It discusses the stigma that is associated with the disease and has a strong impact on patients with epilepsy and their families. The problems of stigma or related concepts in different countries are analyzed.
About the Authors
E. V. Parfenova
Z.P. Solovyev Research and Practical Center of Psychoneurology, Moscow Healthcare Department
Russian Federation
43, Donskaya St., Moscow 115419
Russian Federation
43, Donskaya St., Moscow 115419
F. K. Rider
Z.P. Solovyev Research and Practical Center of Psychoneurology, Moscow Healthcare Department
Russian Federation
43, Donskaya St., Moscow 115419
Russian Federation
43, Donskaya St., Moscow 115419
A. G. Gersamia
Z.P. Solovyev Research and Practical Center of Psychoneurology, Moscow Healthcare Department
Russian Federation
43, Donskaya St., Moscow 115419
Russian Federation
43, Donskaya St., Moscow 115419
References
1. World Health Organization. Epilepsy. Fact Sheet No. 999. Geneva: World Health Organization; 2015.
2. Shorvon SD. The etiologic classification of epilepsy. Epilepsia. 2011;52(6):1052-7. doi: 10.1111/j.1528-1167.2011.03041.x
3. Reynolds EH. The ILAE/IBE/WHO Global Campaign against Epilepsy: Bringing Epilepsy «Out of the Shadows». Epilepsy Behav. 2000;1:S3-8.
4. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: PrenticeHall; 1963.
5. Stafford MC, Scott RR. Stigma deviance and social control: some conceptual issues. In: Ainlay SC, Becker G, Coleman LM, editors. The Dilemma of Difference. New York: Plenum; 1986.
6. Crocker J, Major B, Steele C. Social stigma. In: Gilbert DT, Fiske ST, editors. The Handbook of Social Psychology. Boston, MA: McGraw-Hill; 1998. Vol. 2. P. 504-53.
7. Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia. 1999;41:98-104. doi: 10.1111/j.1528-1157.2000.tb01512.x
8. Lee SA, Yoo HJ, Lee BI. Factors contributing to the stigma of epilepsy. Seizure. 2005;14:157-63. doi: 10.1016/j.seizure.2005.01.001
9. Li LM, Sander JW. [National demonstration project on epilepsy in Brazil]. Arq Neuropsiquiatr. 2003;61(1):153-6 (In Portug.). doi: 10.1590/S0004-282X2003000100033
10. Ratsepp M, Oun A, Haldre S, Kaasik A-E. Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study. Seizure. 2000;9:394-401. doi: 10.1053/seiz.2000.0439
11. Teshome S, Atalay A, Redda T, et al. Perception of stigma in people wity epilepsy and their relatives in Butajira, Ethiopia. Ethiop J Health Dev. 2006;20(3):170-6.
12. Kanner AM, Palac S. Depression in epilepsy: a common but often unrecognized comorbid malady. Epilepsy Behav. 2000;1(1):37-51. doi: 10.1006/ebeh.2000.003
13. Chesaniuk M, Choi H, Wicks P, et al. Perceived stigma and adherence in epilepsy: evidence for a link and mediating processes. Epilepsy Behav. 2014;41:227-31. doi: 10.1016/j.yebeh.2014.10.004
14. Sabatello M, Phelan JS. Genetic causal attribution of epilepsy and its implications for felt stigma. Epilepsia. 2015 Oct;56(10):1542-50. doi: 10.1111/epi.13113
15. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol. 1992;17(5):633-49. doi: 10.1093/jpepsy/17.5.633
16. Scambler G, Hopkins A. Generating a model of epileptic stigma: the role of qualitative analysis. Soc Sci Med. 1990;30(11):1187-94. doi: 10.1016/0277-9536(90)90258-T
17. Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illn. 1986;8:26-43. doi: 10.1111/1467-9566.ep11346455
18. Goldstein J, Seidenberg M, Peterson R. Fear of seizures and behavioural functioning in adults with epilepsy. J Epilepsy. 1990;3(2):101-6. doi: 10.1016/0896-6974(90)90158-U
19. Long L, Reeves AL, Moore JL, et al. An assessment of epilepsy patients’ knowledge of their disorder. Epilepsia. 2000;41:727-31. doi: 10.1111/j.1528-1157.2000.tb00235.x
20. Doughty J, Baker GA, Jacoby A, Lavaud V. Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia. 2003;44:115-23. doi: 10.1046/j.1528-1157.2003.34402.x
21. Choi-Kwon S, Kim EK, Youn SM, et al. Common misconceptions in people with epilepsy. J Clin Neurol. 2006 Sep;2(3):186-93. doi: 10.3988/jcn.2006.2.3.186
22. Elliott J, Shneker B. Patient, caregiver, and health care practitioner knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav. 2008;12:547-56. doi: 10.1016/j.yebeh.2007.11.008
23. Guo W, Wu J. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional level in a specific socio-cultural context: findings from an ethnographic study in Korea. Epilepsy Behav. 2012 Oct;25(2):282-8. doi: 10.1016/j.yebeh.2012.08.013
24. Viteva E. Stigmatization of patients with epilepsy: a review of the current problem and assessment of the perceived stigma in Bulgarian patients. Epilepsy Behav. 2012;25:239-43. doi: 10.1016/j.yebeh.2012.07.018
25. MacLeod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav. 2003;4:112-7. doi: 10.1016/S1525-5050(03)00007-6
26. Choi EJ, Lee SA, Jo KD, et al. Factors contributing to concerns of persons living with epilepsy. Seizure. 2011;20(1):14-7. doi: 10.1016/j.seizure.2010.09.010
27. Kurzban R, Leary MR. Evolutionary origins of stigmatization: the functions of social exclusion. Psychol Bull. 2001;127:187-208. doi: 10.1037/0033-2909.127.2.187
28. Kerr MP, Mensah S, Besag F, et al. International consensus clinical practice statements for the treatment of neuropsychiatric conditions associated with epilepsy. Epilepsia. 2011;52:2133-8. doi: 10.1111/j.1528-1167.2011.03276.x
29. Bielen I, Zobic I, Sruk A, et al. Changes of attitudes toward epilepsy in college- preparatory high school students population: an indicator of global campaign successfulness? Seizure. 2012;21:775-9. doi: 10.1016/j.seizure.2012.09.002
30. Friedrich L, Taslak M, Tomasovic S, Bielen I. How does the label «epileptic» influence attitudes toward epilepsy? Seizure. 2015;33:54-9. doi: 10.1016/j.seizure.2015.10.012
31. Saburi GL, Mapanga KG, Mapanga MB. Perceived family reactions and quality of life of adults with epilepsy. J Neurosci Nurs. 2006;38(3):156-65. doi: 10.1097/01376517-200606000-00004
32. Kobau R, Zahran H, Grant D, et al. Prevalence of active epilepsy and health-related quality of life among adults with selfreported epilepsy in California: California Health Interview Survey, 2003. Epilepsia. 2007;48(10):1904-13. doi: 10.1111/j.1528-1167.2007.01161.x
33. Grant I. The social environment and neurological disease. Adv Psychosom Med. 1985;13:26-48. doi: 10.1159/000411298
34. Elafros MA, Sakubita-Simasiku C, Atadzhanov M, et al. Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia. Int Health. 2013;5:288-94. doi: 10.1093/inthealth/iht028
35. Семакина НВ, Михайлов ВА, Багаев ВИ. Оценка качества жизни в семьях детей, страдающих эпилепсией. Обозрение психиатрии и медицинской психологии. 2012; (4):73 [Semakina NV, Mikhailov VA, Bagaev VI. Assessment of the quality of life in the families of children with epilepsy. Obozrenie Psikhiatrii i Meditsinskoi Psikhologii. 2012; (4):73 (In Russ.)].
36. Fisher RS, Vickery BG, Gibson P, et al. The impact of epilepsy from the patient's perspective. I. Description and subjective perceptions. Epilepsy Res. 2000;41:39-51. doi: 10.1016/S0920-1211(00)00126-1
37. Ak PD, Atakli D, Yuksel B, et al. Stigmatization and social impacts of epilepsy in Turkey. Epilepsy Behav. 2015;50:50-4. doi: 10.1016/j.yebeh.2015.05.014
38. Austin JK, Perkins SM, Dunn DW. Model for internalized stigma in children and adolescents with epilepsy. Epilepsy Behav. 2014 Jul;36:74-9. doi: 10.1016/j.yebeh.2014.04.020
39. Guekht AB, Gersamiya A, Kaimovskiy I, et al. Attitudes towards people with epilepsy in Moscow. Epilepsy Behav. 2017;70 Pt A:182-6.
40. Cheung C, Wirrell E. Adolescents’ perception of epilepsy compared with other chronic diseases: «through a teenager’s eyes». J Child Neurol. 2006;21(3):214-22. PubMed PMID: 16901423.
41. Schneider JW, Conrad P. In the closet with illness: epilepsy, stigma potential and information control. Social Probl. 1980;28:32-44. doi: 10.2307/800379
42. Turky A, Beavis JM, Thapar AK, Kerr MP. Psychopathology in children and adolescents with epilepsy: an investigation of predictive variables. Epilepsy Behav. 2008;12:136-44. doi: 10.1016/j.yebeh.2007.08.003
43. Dunn DW. Neuropsychiatric aspects of epilepsy in children. Epilepsy Behav. 2003;4:101- 6. doi: 10.1016/S1525-5050(03)00022-2
44. Wang W, Zhao D, Wu J, et al. Changes in knowledge, attitude, and practice of people with epilepsy and their families after an intervention in rural China. Epilepsy Behav. 2009;16:76-9. doi: 10.1016/j.yebeh.2009.06.027
45. Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy Behav. 2002;3:10-20. doi: 10.1016/S1525-5050(02)00545-0
46. Phelan JC. Geneticization of deviant behavior and consequences for stigma: the case of mental illness. J Health Soc Behav. 2005;46:307-22. doi: 10.1177/002214650504600401
47. Phelan JC. Genetic bases of mental illness – a cure for stigma? Trends Neurosci. 2002;25:430-1. doi: 10.1016/S0166-2236(02)02209-9
48. Tuft M, Nakken KO. Epilepsy and stigma in popular music. Tidsskr Nor Laegeforen. 2014 Dec 9;134(23-24):2290-3. doi: 10.4045/tidsskr.14.0873
49. Fernandes PT, de Barros NF, Li LM. Stop saying epileptic. Epilepsia. 2009;50:1280-3. doi: 10.1111/j.1528-1167.2008.01899.x
50. Герсамия АГ, Ридер ФК и др. Эпилепсия и стигматизация. В кн.: Гусев ЕИ, Гехт АБ, редакторы. Болезни мозга: от изучения механизмов к диагностике и лечению. Москва: Буки-Веди; 2018. 568 с. [Gersamiya AG, Rider FK, et al. Epilepsy and stigmatization. In: Gusev EI, Gekht AB, editors. Bolezni mozga: ot izucheniya mekhanizmov k diagnostike i lecheniyu [Diseases of the brain: from the study of mechanisms to diagnosis and treatment]. Moscow: Buki-Vedi; 2018. 568 p. (In Russ.)].
51. Njamnshi AK, Bissek AC, Yepnjio FN, et al. A community survey of knowledge, perceptions, and practice with respect to epilepsy among traditional healers in the Batibo Health District, Cameroon. Epilepsy Behav. 2010;17:95-102. doi: 10.1016/j.yebeh.2009.10.018
52. Snape D, Wang W, Wu J, et al. Knowledge gaps and uncertainties about epilepsy: Findings from an ethnographic study in China. Epilepsy Behav. 2009;14:172-8. doi: 10.1016/j.yebeh.2008.09.031
53. Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171-8. doi: 10.1016/S1474-4422(05)70020-X
54. Walker AE. Current status of epilepsy in some developing countries. Epilepsia. 1972; I3:99-106. doi: 10.1111/j.1528-1157.1972.tb04556.x
55. Van Ree F. Epilepsy in Varanasi (India). Epilepsia. 1972;13:113-8. doi: 10.1111/j.1528-1157.1972.tb04558.x
56. Meiser B, Mitchell PB, Kasparian NA, et al. Attitudes towards childbearing, causal attributions for bipolar disorder and psychological distress: a study of families with multiple cases of bipolar disorder. Psychol Med. 2007;37:1601- 11. doi: 10.1017/S0033291707000852
57. Rafael F, Dubreuil C-M, Burbaud F, et al. Knowledge of epilepsy in the general population based on two French cities: Implications for stigma. Epilepsy Behav. 2010;17:82- 6. doi: 10.1016/j.yebeh.2009.10.014
58. Diamantopoulos N, Kaleyias J, et al. A Survey of Public Awareness, Understanding, and Attitudes toward Epilepsy in Greece. Epilepsia. 2006;47(12):2154-64. doi: 10.1111/j.1528-1167.2006.00891.x
59. Ghanean H, Nojomi M, Jacobsson L. Public awareness and attitudes towards epilepsy in Tehran, Iran. Glob Health Action. 2013;6:21618. doi: 10.3402/gha.v6i0.21618
60. Spatt J, Bauer G, Feucht M, et al. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia. 2005;46:736-42. doi: 10.1111/j.1528-1167.2005.52404.x
61. Shibre T, Alem A, Tekle-Haimanot R. Community attitudes towards epilepsy in a rural Ethiopian setting: a re-visit after 15 years. Ethiop Med J. 2008;46:251-9.
62. Bagic A, Bagic D, Zivkovic I. First population study of the general public awareness and perception of epilepsy in Croatia. Epilepsy Behav. 2009;15:170-8. doi: 10.1016/j.yebeh.2009.02.044
63. Gambhir SK, Kumar V, Singhi PD, Goel RC. Public awareness, understanding and attitudes toward epilepsy. Ind J Med Res. 1995;102:34-8.
64. Novotna I, Rektor I. The trend in public attitudes in the Czech Republic towards persons with epilepsy. Eur J Neurol. 2002;9:535-40. doi: 10.1046/j.1468-1331.2002.00466.x
65. Kramer G. Einstellung der Bevolkerung zur Epilepsie in der Schweiz 2003. Epileptologie. 2003;20:145-8.
66. Caveness W, Gallup G. A survey of public attitudes toward epilepsy in 1979 with an indication of trends over the past 30 years. Epilepsia. 1980;21:509-18. doi: 10.1111/j.1528-1157.1980.tb04302.x
67. Mirnics Z, Czikora G, Zavecz T, Halasz P. Changes in public attitudes toward epilepsy in Hungary: results of survey conducted in 1994 and 2000. Epilepsia. 2001;42(1):86-93. doi: 10.1046/j.1528-1157.2001.18000.x
68. Thorbecke R, Rating D. Was denkt man uber Epilepsie? Epilepsie-Blatter. 1996;9:71-5.
69. Canger R, Cornaggia C. Public attitudes toward epilepsy in Italy: results of a survey and comparison with U.S.A. and West German data. Epilepsia. 1985;26:221-6. doi: 10.1111/j.1528-1157.1985.tb05409.x
70. Lai CW, Huang XS, Lai YH, et al. Survey of public awareness, understanding, and attitudes toward epilepsy in Henan province, China. Epilepsia. 1990;31:182-7. doi: 10.1111/j.1528-1167.1990.tb06304.x
71. Chung MY, Chang YC, Lai YH, Lai CW. Survey of public awareness, understanding, and attitudes toward epilepsy in Taiwan. Epilepsia. 1995;36:488-93. doi: 10.1111/j.1528-1157.1995.tb00491.x
72. Hills MD, MacKenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia. 2002;43:1583-9. doi: 10.1046/j.1528-1157.2002.32002.x
73. Kaddumukasa M, Kakooza A. Community knowledge and attitudes of epilepsy in rural and urban Mukono district, Uganda; a cross sectional study. Epilepsy Behav. 2016 Jan;54:7- 11. doi: 10.1016/j.yebeh.2015.10.023
74. Ezeala-Adikaibe BA, Achor JU. Knowledge, attitude and practice of epilepsy among community residents in Enugu, South East Nigeria. Seizure. 2014;23:882-8. doi: 10.1016/j.seizure.2014.08.003
75. LaMartina J. Uncovering public misconceptions about epilepsy. J Epilepsy. 1989;2:45-8. doi: 10.1016/0896-6974(89)90058-3
76. Jensen R, Dam M. Public attitudes toward epilepsy in Denmark. Epilepsia. 1992;33:459-63. doi: 10.1111/j.1528-1157.1992.tb01691.x
77. Bain E, Awah PK, Takougang I, et al. Public awareness, knowledge and practice relating to epilepsy amongst adult residents in rural Cameroon – case study of the Fundong health district Luchuo. Pan Afr Med J. 2013;14:32. doi: 10.11604/pamj.2013.14.32.2284
78. Rwiza HT, Matuja WB, Kilonzo GP, et al. Knowledge, attitude, and practice toward epilepsy among rural Tanzanian residents. Epilepsia. 1993;34:1017-23. doi: 10.1111/j.1528-1157.1993.tb02127.x
79. Choi-Kwon S, Park KA, Lee HJ, et al. Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea. Acta Neurol Scand. 2004;110:39-45. doi: 10.1111/j.1600-0404.2004.00258.x
80. Cuong LQ, Thien DD, Jallon P. Survey of public awareness, attitudes, and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 2003. Epilepsy Behav. 2006;8:176- 80. doi: 10.1016/j.yebeh.2005.09.012
81. Fong CY, Hung A. Public awareness, attitude, and understanding of epilepsy in Hong Kong Special Administrative Region, China. Epilepsia. 2002;43:311-6. doi: 10.1046/j.1528-1157.2002.31901.x
82. Masri AT, Shakhatreh FM, Yasine N, et al. Familiarity, knowledge, and attitudes towards epilepsy among attendees of a family clinic in Amman, Jordan. Neurosciences. 2008;13(1):53-6.
83. Tiamkao S, Sawanyawisuth K. Differences of knowledge, attitudes, and behaviors towards epilepsy between populations in municipal and nonmunicipal areas. Psychol Res Behav Manag. 2013;2013(default):111-6.
84. Henok A, Lamaro T. Knowledge about and Attitude towards Epilepsy among Menit Community, Southwest Ethiopia. Ethiop J Health Sci. 2017;27(1):47-58. doi: 10.4314/ejhs.v27i1.7
85. Жусупова АТ, Турузбекова БД. Осведомленность об эпилепсии среди молодежи города Бишкек. Наука, новые технологии и инновации (Бишкек). 2016;(5):84-5 [Zhusupova AT, Turuzbekova BD. Awareness about epilepsy among the youth of Bishkek city. Nauka, Novye Tekhnologii i Innovatsii (Bishkek). 2016;(5):84-5 (In Russ.)]. УДК: 616.853:616-053.8(575.2)
86. Михайлов ВА. Качество жизни, стигматизация и восстановительная терапия больных эпилепсией: Автореф. дисс. … докт. мед. наук. Санкт-Петербург; 2008. 52 с. [Mikhailov VA. Quality of life, stigmatization and rehabilitation therapy of patients with epilepsy: Author’s abstract. Diss. ... Doct. Med. Sci.]. St. Petersburg; 2008. 52 p. (In Russ.)].
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Parfenova E.V., Rider F.K., Gersamia A.G. Sociocultural aspects and different types of stigmatization in epilepsy. Neurology, Neuropsychiatry, Psychosomatics. 2018;10(1S):89-95. (In Russ.) https://doi.org/10.14412/2074-2711-2018-1S-89-95
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