Preview

Неврология, нейропсихиатрия, психосоматика

Расширенный поиск

Социокультурные аспекты и различные виды стигматизации при эпилепсии

https://doi.org/10.14412/2074-2711-2018-1S-89-95

Аннотация

Обзор литературы посвящен знаниям и предубеждениям об эпилепсии, а также отношению к эпилепсии со стороны пациентов, родственников и общества в целом. Обсуждается стигма,  связанная с этим заболеванием и оказывающая сильное воздействие на пациентов с эпилепсией и их семьи. Анализируются проблемы стигмы или связанных с ней понятий в разных странах.

Об авторах

Е. В. Парфенова
ГБУЗ «Научно-практический психоневрологический центр им. З.П. Соловьева Департамента здравоохранения города Москвы»
Россия
115419 Москва, ул. Донская, 43


Ф. К. Ридер
ГБУЗ «Научно-практический психоневрологический центр им. З.П. Соловьева Департамента здравоохранения города Москвы»
Россия
115419 Москва, ул. Донская, 43


А. Г. Герсамия
ГБУЗ «Научно-практический психоневрологический центр им. З.П. Соловьева Департамента здравоохранения города Москвы»
Россия
115419 Москва, ул. Донская, 43


Список литературы

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.)].


Рецензия

Для цитирования:


Парфенова ЕВ, Ридер ФК, Герсамия АГ. Социокультурные аспекты и различные виды стигматизации при эпилепсии. Неврология, нейропсихиатрия, психосоматика. 2018;10(1S):89-95. https://doi.org/10.14412/2074-2711-2018-1S-89-95

For citation:


Parfenova EV, Rider FK, Gersamia AG. Sociocultural aspects and different types of stigmatization in epilepsy. Nevrologiya, neiropsikhiatriya, psikhosomatika = Neurology, Neuropsychiatry, Psychosomatics. 2018;10(1S):89-95. (In Russ.) https://doi.org/10.14412/2074-2711-2018-1S-89-95

Просмотров: 1052


Creative Commons License
Контент доступен под лицензией Creative Commons Attribution 4.0 License.


ISSN 2074-2711 (Print)
ISSN 2310-1342 (Online)