Confronting the stigma of epilepsy

Annals of Indian Academy of Neurology

Volumn 14, Issue 3, 2011, Pages 158-163

  Thomas, Sanjeev V ^a   Nair, Aparna ^b  

^a SREE CHITRA TIRUNAL INSTITUTE FOR MEDICAL SCIENCES AND TECHNOLOGY   (India)

^b Center for Development Studies   (India)

Author keywords

Epilepsy; gender issues; quality of life; stigma; treatment gap

Indexed keywords

DISCRIMINATION LEARNING; EPILEPSY; HEALTH CARE PERSONNEL; HUMAN; PERCEPTION; REVIEW; SOCIAL PSYCHOLOGY; SOCIAL WORKER; SOCIOLOGY; STEREOTYPY; STIGMA; SUPPORT GROUP; SYSTEMATIC REVIEW;

EID: 80054119605     PISSN: 09722327     EISSN: 19983549     Source Type: Journal    
DOI: 10.4103/0972-2327.85873     Document Type: Review

References (56)

1. de Boer HM, Mula M, Sander JW. The Global Burden and Stigma of Epilepsy. Epilepsy Behav 2008;12:540-6.
2. Sridharan R, Murthy BN. Prevalence and Pattern of Epilepsy in India. Epilepsia 1999;40:631-6.
3. Wolf P. Sociocultural History of Epilepsy. In: C. P, Panayiotopoulos, editor. Atlas of Epilepsies. London: Springer-Verlag; 2010.
4. Pahl K, de Boer HM. Epilepsy and rights. In: Atlas: Epilepsy care in the world. Geneva: WHO; 2005. p. 72-3.
5. DiIorio C, Shafer OP, Letz R, Henry T, Schomer DL, Yeager K. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav 2003;4:259-67.
6. Hosseini N, Sharif F, Ahmadi F, Zareh M. Struggle with stigma of Iranians with epilepsy Epilepsy Behav 2010;17:600.
7. Tekle-Haimanot R, Abebe M, Forsgren L, Gebre-Mariam A, Heijbel J, Holmgren G, et al. Attitutes of rural people in central Ethiopia toward epilepsy. Soc Sci Med 1991;32:203-9.
8. Atadzhanov M, Haworth A, Chomba EN, Mbewe EK, Birbeck GL. Epilepsy associated stigma in Zambia: What factors predict greater felt stigma in a highly stigmatized population. Epilepsy Behav 2010;19:414-8.
9. Aydemir N, Trung DV, Snape D, Baker GA, Jacoby A. Multiple impacts of epilepsy and contributing factors findings from an ethnographic study of Vietnam. Epilepsy Behav 2009;16:512-20.
10. Li S, Wu J, Wang W, Jacoby A, deBoer H, Sander JW. Stigma and epilepsy: The Chinese perspective. Epilepsy Behav 2010;17:242-5.
11. Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: A European perspective. Epilepsia 1999;41:98-104.
12. Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V. Quality of life of people with epilepsy in Iran, the Gulf, and Near East. Epilepsia 2005;46:132-40.
13. Baker GA. The psychosocial burden of epilepsy. Epilepsia 2002;43. Suppl 6:26-30;
14. Collings JA. Psychosocial well-being and epilepsy: An empirical study. Epilepsia 1990;31:418-26.
15. Ismail H, Wright J, Rhodes P, Small N, Jacoby A. South Asians and epilepsy: Exploring health experiences, needs and beliefs of communities in the north of England. Seizure 2005;14:497-503.
16. Link BG, Struening EL, Neese-Todd S, Asmussen S, Phelan JC. Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses. Psychiatr Serv 2001;52:1621-7.
17. Thomas SV, Bindu VB. Psychosocial and economic problems of parents of children with epilepsy. Seizure 1999;8:66-9.
18. Goffman E. Stigma: Notes on the management of spoiled identity. Englewood Cliffs NJ: Prentice-Hall; 1963.
19. Jones EE, Farina A, Hastorf AH, Markus H, Miller DT, Scott RA. Social stigma: The psychology of marked relationships. New York: Freeman; 1994;
20. Crocker J, Quinn DM, Steele C. Social stigma. In: Gilbert DT, Fiske ST, Lindzey G, editors. Handbook of social psychology: Vol. 2. Boston: McGraw-Hill; 1998. p. 504-53.
21. Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol 2001;27:363-85.
22. Tempkin O. The falling sickness: A history of epilepsy from the Greeks to the beginnings of modern neurology. Baltimore: Johns Hopkins University Press, 1945, Revised 1971.
23. Scambler G, Hopkins A. Being epileptic: Coming to terms with stigma. Sociol Health Illn 1986;8:26-43.
24. Schneider J, Conrad P. In the closet with illness: Epilepsy, stigma potential and information control. Soc Probl 1980;28:3-45.
25. Murray CJ, Lopez AD. editors. The Global burden of diseases: A comprehensive assessment of mortality and disability from diseases, injuries and risk factors in 1990 and projected to 2020. Cambridge, MA: Harvard School of Public Health on Behalf of the WHO and the World Bank; 1996;
26. Leonardi MT, Ustun TB. The Global Burden of Epilepsy. Epilepsia 2002;43:21-5.
27. Fife BL, Wright ER. The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. J Health Soc Behav 2000;41:50-67.
28. Pal DK, Chaudhury G, Sengupta S, Das T. Social integration of children with epilepsy in rural India. Soc Sci Med 2002;54:1867-74.
29. Hill RB. Structural discrimination: The unintended consequences of institutional processes, in surveying social life, Papers in Honor of Hyman HH, O'Gorma HJ, editors. Middletown, Conn, Wesleyan UP incus FL: From individual to structural discrimination, in race and ethnic conflict: Contending views on prejudice, discrimination, and ethnoviolence. In: Pincus FL, Ehrlich HJ, editors. Boulder, Colo: Westview Press; 1999, Uuniversity Press; 1988;
30. Link BG, Phelan JC: Conceptualizing stigma. Annu Rev Sociol 2001;27:363-85.
31. Burris S. Stigma and the Law. Lancet 2006;367:529-31.
32. Corrigan PW, Watson AC, Heyrman ML, Warpinski A, Gracia G, Slopen N, et al. Structural stigma in state legislation. Psychiatr Serv 2005;56:557-64.
33. Legal issues related to epilepsy: The SEARO. Available from: http://www.searo.who.int/LinkFiles/Information-and-Documents-legal.pdf. [Last accessed on 2011 Apr. 13].
34. D'Souza C. Epilepsy and discrimination in India. Neur Asia 2004;9:53-4.
35. Haji Ahmad v. Abdul Gani AIR 1937 Nag 270; Fraveen Kumarivs Man Mohan Kumar on 26 May, 1983;
36. Punjab-Harayana High Court, Sudha Mehta vs Ravinder Mehta on 28 March 1990.
37. Richard KC. The risk of fatal car crashes in people with epilepsy. Neurology 2004;63:E12.
38. Beghi E, Sander JW. Epilepsy and Driving: Regulations in the European Union need harmonization as well as greater flexibility. BMJ 2005;331:60-1.
39. US Department of Justice Civil Rights Division A guide to disability rights laws http://www.ada.gov/cguide.pdf [Last accessed on 2011 Sep. 16].
40. The Equality Act, 2010 Home Office, UK. Available from: http://www.homeoffice.gov.uk/equalities/equality-act/ [Accessed on 2011 Sep. 16].
41. Jacoby A. Felt versus enacted stigma: A concept revisited: Evidence from a study of people with epilepsy in remission. Social Sci Med 1994;38:269-74.
42. Fernandes PT, Salgado PC, Noronha AL, Sanders JW. Stima scale for epilepsy: Validation process. Arq Neuropsiquiatr 2007;65(Suppl 1):35-42.
43. Canger R, Cornaggia C. Public attitudes towards epilepsy in Italy: Results of a survey and comparison with USA and West Germandata. Epilepsia 1985;26:221-6.
44. Weiss MG, Doongaji DR, Siddhartha S, Wypij D, Pathare S, Bhatawdekar M, et al. The explanatory model interview catalogue (EMIC). contribution to cross-cultural research methods from a study of leprosy and mental health. Br J Psychiatry 1992;160:819-30.
45. Jacoby A. Epilepsy and the quality of everyday life: Findings from a study of people with well - controlled epilepsy. Soc Sci Med 1992;34:657-66.
46. Baker GA. People with epilepsy: What do they know and understand and how does this contribute to their perceived level of stigma? Epilepsy Behav 2002;3:S26-32.
47. Suurimeijer TP, Feuvekamp MF, Aldenkamp B P. Social functioning, psychological functioning and quality of life in epilepsy. Epilepsia 2001;42:1160-8.
48. DiIorio C, Osborne Shafer P, Letz R, Henry T, Schomer DL, Yeager K; Project EASE Study Group. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav 2003;4:259-67.
49. Aziz H, Akhtar SW, Hasan KZ. Epilepsy in Pakistan: Stigma and psychosocial problems. A populationbased epidemiologic study. Epilepsia 1997;38:1069-73.
50. Joseph N, Ray A, BK R, Bhat S, Herady M, Kumar A, Kiran K. Assessment of quality of life, stigma associated and selfmanagement practices among patients suffering from epileptic seizures: A cross sectional study. J Neurosc Behav Health 2011;3:91-8.
51. Troster H. Disclose or Conceal? Strategies of information management of persons with epilepsy. Epilepsia 1997;38:1227-37.
52. Baker GA, Jacoby A. The stigma of epilepsy: Implications for clinical management. In: Mason T, Carlisle C, Watkins C, Whitehead E, editors. Stigma and social exclusion in healthcare. London: Routledge; 2001. p. 126-36.
53. Snape D, Wang W, Wu J, Jacoby A, Baker GA. Knowledge gaps and uncertainties about epilepsy: Findings from an ethnographic study in China. Epilepsy Behav 2009;14:172-8.
54. Li LM, Sander JW, Fernandes PT, deBoer HM, Prilipko L. (eds) Demonstration project on epilepsy in Brazil: WHO/ILAE/IBE global campaign against epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1).
55. Hills MD, Baker PG. Relationships between epilepsy, social stigma, self esteem and social support. J Epilepsy 1992;5.4:231-8.
56. Keutsch GT, Wilentz J, Kleinman A. Stigma and global health: Developing a research agenda. Lancet 2006;367:525-7.