Skip to main content
Top
Published in: Current Neurology and Neuroscience Reports 5/2014

01-05-2014 | Epilepsy (CW Bazil, Section Editor)

Stigma in Epilepsy

Authors: Kirsten M. Fiest, Gretchen L. Birbeck, Ann Jacoby, Nathalie Jette

Published in: Current Neurology and Neuroscience Reports | Issue 5/2014

Login to get access

Abstract

Stigma remains a weight those with epilepsy have to carry and a defining feature of their identity. This article highlights recent studies published in the area of stigma, knowledge, attitudes, and practices regarding epilepsy. First, recent studies addressing the frequency of stigma and factors associated with stigma are discussed. Second, tools developed to ascertain stigma in epilepsy, or knowledge, attitudes, and practices, are examined. Lastly, we discuss interventions recently studied to reduce stigma in epilepsy.
Literature
1.
go back to reference Fisher RS, van Emde BW, Blume W, Elger C, Genton P, Lee P, et al. Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia. 2005;46:470–2.PubMedCrossRef Fisher RS, van Emde BW, Blume W, Elger C, Genton P, Lee P, et al. Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia. 2005;46:470–2.PubMedCrossRef
2.
go back to reference Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohamed M, Chaudhuri AR, Zalutsky R. How common are the “common” neurologic disorders? Neurology. 2007;68:326–37.PubMedCrossRef Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohamed M, Chaudhuri AR, Zalutsky R. How common are the “common” neurologic disorders? Neurology. 2007;68:326–37.PubMedCrossRef
3.
go back to reference Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia. 2010;51:883–90.PubMedCentralPubMedCrossRef Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia. 2010;51:883–90.PubMedCentralPubMedCrossRef
5.
6.
go back to reference Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963. Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963.
7.
go back to reference Baskind R, Birbeck GL. Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy Behav. 2005;7:68–73.PubMedCrossRef Baskind R, Birbeck GL. Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy Behav. 2005;7:68–73.PubMedCrossRef
8.
go back to reference Birbeck G. Medical treatment of epilepsy in situations with limited resources. In: Shorvon SD, Perucca E, Engel J, editors. The treatment of epilepsy. Hoboken: Wiley-Blackwell; 2009. p. 379–83.CrossRef Birbeck G. Medical treatment of epilepsy in situations with limited resources. In: Shorvon SD, Perucca E, Engel J, editors. The treatment of epilepsy. Hoboken: Wiley-Blackwell; 2009. p. 379–83.CrossRef
9.
go back to reference Jacoby A. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med. 1994;38:269–74.PubMedCrossRef Jacoby A. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med. 1994;38:269–74.PubMedCrossRef
10.
go back to reference Jacoby A, Baker GA. Quality-of-life trajectories in epilepsy: a review of the literature. Epilepsy Behav. 2008;12:557–71.PubMedCrossRef Jacoby A, Baker GA. Quality-of-life trajectories in epilepsy: a review of the literature. Epilepsy Behav. 2008;12:557–71.PubMedCrossRef
11.
go back to reference Fernandes PT, Snape DA, Beran RG, Jacoby A. Epilepsy stigma: what do we know and where next? Epilepsy Behav. 2011;22:55–62.PubMedCrossRef Fernandes PT, Snape DA, Beran RG, Jacoby A. Epilepsy stigma: what do we know and where next? Epilepsy Behav. 2011;22:55–62.PubMedCrossRef
12.
go back to reference Jacoby A, Austin JK. Social stigma for adults and children with epilepsy. Epilepsia. 2007;48 Suppl 9:6–9.PubMedCrossRef Jacoby A, Austin JK. Social stigma for adults and children with epilepsy. Epilepsia. 2007;48 Suppl 9:6–9.PubMedCrossRef
13.
go back to reference Muhlbauer SA. Experience of stigma by families with mentally ill members. J Am Psychiatr Nurses Assoc. 2002;8:76–83.CrossRef Muhlbauer SA. Experience of stigma by families with mentally ill members. J Am Psychiatr Nurses Assoc. 2002;8:76–83.CrossRef
14.
go back to reference Chomba EN, Haworth A, Atadzhanov M, Mbewe E, Birbeck GL. Zambian health care workers’ knowledge, attitudes, beliefs, and practices regarding epilepsy. Epilepsy Behav. 2007;10:111–9.PubMedCentralPubMedCrossRef Chomba EN, Haworth A, Atadzhanov M, Mbewe E, Birbeck GL. Zambian health care workers’ knowledge, attitudes, beliefs, and practices regarding epilepsy. Epilepsy Behav. 2007;10:111–9.PubMedCentralPubMedCrossRef
15.
go back to reference Elafros MA, Sakubita-Simasiku C, Atadzhanov M, Haworth A, Chomba E, Birbeck GL. Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia. Int Health. 2013;5:288–94.PubMedCrossRef Elafros MA, Sakubita-Simasiku C, Atadzhanov M, Haworth A, Chomba E, Birbeck GL. Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia. Int Health. 2013;5:288–94.PubMedCrossRef
16.
go back to reference De Boer HM. “Out of the shadows”: a global campaign against epilepsy. Epilepsia. 2002;43 Suppl 6:7–8.PubMedCrossRef De Boer HM. “Out of the shadows”: a global campaign against epilepsy. Epilepsia. 2002;43 Suppl 6:7–8.PubMedCrossRef
18.
go back to reference Reynolds EH. The ILAE/IBE/WHO Global Campaign against Epilepsy: bringing epilepsy “out of the shadows”. Epilepsy Behav. 2000;1:S3–8.PubMedCrossRef Reynolds EH. The ILAE/IBE/WHO Global Campaign against Epilepsy: bringing epilepsy “out of the shadows”. Epilepsy Behav. 2000;1:S3–8.PubMedCrossRef
19.
go back to reference Institute of Medicine. Epilepsy across the spectrum: promoting health and understanding. Washington: National Academies Press; 2012. Institute of Medicine. Epilepsy across the spectrum: promoting health and understanding. Washington: National Academies Press; 2012.
20.
go back to reference Lim KS, Hills MD, Choo WY, Wong MH, Wu C, Tan CT. Attitudes toward epilepsy among the primary and secondary school teachers in Malaysia, using the Public Attitudes Toward Epilepsy (PATE) scale. Epilepsy Res. 2013;106:433–9.PubMedCrossRef Lim KS, Hills MD, Choo WY, Wong MH, Wu C, Tan CT. Attitudes toward epilepsy among the primary and secondary school teachers in Malaysia, using the Public Attitudes Toward Epilepsy (PATE) scale. Epilepsy Res. 2013;106:433–9.PubMedCrossRef
21.
go back to reference Lim KS, Hills MD, Choo WY, Wong MH, Wu C, Tan CT. A web-based survey of attitudes toward epilepsy in secondary and tertiary students in Malaysia, using the Public Attitudes Toward Epilepsy (PATE) scale. Epilepsy Behav. 2013;26:158–61.PubMedCrossRef Lim KS, Hills MD, Choo WY, Wong MH, Wu C, Tan CT. A web-based survey of attitudes toward epilepsy in secondary and tertiary students in Malaysia, using the Public Attitudes Toward Epilepsy (PATE) scale. Epilepsy Behav. 2013;26:158–61.PubMedCrossRef
22.
go back to reference Alkhamra H, Tannous A, Hadidi M, Alkhateeb J. Knowledge and attitudes toward epilepsy among school teachers and counselors in Jordan. Epilepsy Behav. 2012;24:430–4.PubMedCrossRef Alkhamra H, Tannous A, Hadidi M, Alkhateeb J. Knowledge and attitudes toward epilepsy among school teachers and counselors in Jordan. Epilepsy Behav. 2012;24:430–4.PubMedCrossRef
23.
go back to reference Alaqeel A, Alebdi F, Sabbagh AJ. Epilepsy: what do health-care professionals in Riyadh know? Epilepsy Behav. 2013;29:234–7.PubMedCrossRef Alaqeel A, Alebdi F, Sabbagh AJ. Epilepsy: what do health-care professionals in Riyadh know? Epilepsy Behav. 2013;29:234–7.PubMedCrossRef
24.
go back to reference Gzirishvili N, Kasradze S, Lomidze G, Okujava N, Toidze O, de Boer HM, et al. Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia. Epilepsy Behav. 2013;27:315–8.PubMedCrossRef Gzirishvili N, Kasradze S, Lomidze G, Okujava N, Toidze O, de Boer HM, et al. Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia. Epilepsy Behav. 2013;27:315–8.PubMedCrossRef
25.
go back to reference Ekenze OS, Ndukuba AC. Perception of epilepsy among public workers: perspectives from a developing country. Epilepsy Behav. 2013;26:87–90.PubMedCrossRef Ekenze OS, Ndukuba AC. Perception of epilepsy among public workers: perspectives from a developing country. Epilepsy Behav. 2013;26:87–90.PubMedCrossRef
26.
go back to reference Majkowska-Zwolinska B, Jedrzejczak J, Owczarek K. Employment in people with epilepsy from the perspectives of patients, neurologists, and the general population. Epilepsy Behav. 2012;25:489–94.PubMedCrossRef Majkowska-Zwolinska B, Jedrzejczak J, Owczarek K. Employment in people with epilepsy from the perspectives of patients, neurologists, and the general population. Epilepsy Behav. 2012;25:489–94.PubMedCrossRef
27.
go back to reference Bielen I, Zobic I, Sruk A, Ivakovic A, Dogan D. Changes of attitudes toward epilepsy in college-preparatory high school students population: an indicator of global campaign successfulness? Seizure. 2012;21:775–9.PubMedCrossRef Bielen I, Zobic I, Sruk A, Ivakovic A, Dogan D. Changes of attitudes toward epilepsy in college-preparatory high school students population: an indicator of global campaign successfulness? Seizure. 2012;21:775–9.PubMedCrossRef
28.•
go back to reference Bagic D, Mastilica M, Bagic A. A five-year follow-up study of the general public awareness and perception of epilepsy in Croatia. Epilepsy Behav. 2012;25:200–7. Bagic et al. followed 1,000 adults over 5 years to assess awareness and perceptions of epilepsy. Although a validated questionnaire was not used, it is one of the few studies providing valuable information about trends in epilepsy attitudes and perceptions over time.PubMedCrossRef Bagic D, Mastilica M, Bagic A. A five-year follow-up study of the general public awareness and perception of epilepsy in Croatia. Epilepsy Behav. 2012;25:200–7. Bagic et al. followed 1,000 adults over 5 years to assess awareness and perceptions of epilepsy. Although a validated questionnaire was not used, it is one of the few studies providing valuable information about trends in epilepsy attitudes and perceptions over time.PubMedCrossRef
29.
go back to reference Zanni KP, Matsukura TS, Filho M, de Sousa H. Beliefs and attitudes about childhood epilepsy among school teachers in two cities of southeast Brazil. Epilepsy Res Treat. 2012;2012, 819859.PubMedCentralPubMed Zanni KP, Matsukura TS, Filho M, de Sousa H. Beliefs and attitudes about childhood epilepsy among school teachers in two cities of southeast Brazil. Epilepsy Res Treat. 2012;2012, 819859.PubMedCentralPubMed
30.
go back to reference McNeil K, Brna PM, Gordon KE. Epilepsy in the Twitter era: a need to re-tweet the way we think about seizures. Epilepsy Behav. 2012;23:127–30.PubMedCrossRef McNeil K, Brna PM, Gordon KE. Epilepsy in the Twitter era: a need to re-tweet the way we think about seizures. Epilepsy Behav. 2012;23:127–30.PubMedCrossRef
31.
go back to reference Wong VSS, Stevenson M, Selwa L. The presentation of seizures and epilepsy in YouTube videos. Epilepsy Behav. 2013;27:247–50.PubMedCrossRef Wong VSS, Stevenson M, Selwa L. The presentation of seizures and epilepsy in YouTube videos. Epilepsy Behav. 2013;27:247–50.PubMedCrossRef
32.
go back to reference Viteva Е. 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.PubMedCrossRef Viteva Е. 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.PubMedCrossRef
33.
go back to reference Aydemir N, Jacoby A, Özkara Ç. Predictors of positive and negative attitudes toward their condition in Turkish individuals with epilepsy. Seizure. 2012;21:385–90.PubMedCrossRef Aydemir N, Jacoby A, Özkara Ç. Predictors of positive and negative attitudes toward their condition in Turkish individuals with epilepsy. Seizure. 2012;21:385–90.PubMedCrossRef
34.
go back to reference Kwon O-Y, Park S-P. Frequency of affective symptoms and their psychosocial impact in Korean people with epilepsy: a survey at two tertiary care hospitals. Epilepsy Behav. 2013;26:51–6.PubMedCrossRef Kwon O-Y, Park S-P. Frequency of affective symptoms and their psychosocial impact in Korean people with epilepsy: a survey at two tertiary care hospitals. Epilepsy Behav. 2013;26:51–6.PubMedCrossRef
35.
go back to reference Mbewe EK, Uys LR, Nkwanyana NM, Birbeck GL. A primary healthcare screening tool to identify depression and anxiety disorders among people with epilepsy in Zambia. Epilepsy Behav. 2013;27:296–300.PubMedCrossRef Mbewe EK, Uys LR, Nkwanyana NM, Birbeck GL. A primary healthcare screening tool to identify depression and anxiety disorders among people with epilepsy in Zambia. Epilepsy Behav. 2013;27:296–300.PubMedCrossRef
36.
go back to reference Mbewe EK, Uys LR, Birbeck GL. Detection and management of depression and/or anxiety for people with epilepsy in primary health care settings in Zambia. Seizure. 2013;22:401–2.PubMedCrossRef Mbewe EK, Uys LR, Birbeck GL. Detection and management of depression and/or anxiety for people with epilepsy in primary health care settings in Zambia. Seizure. 2013;22:401–2.PubMedCrossRef
37.
go back to reference Mbewe EK, Uys LR, Birbeck GL. The impact of a short depression and anxiety screening tool in epilepsy care in primary health care settings in Zambia. Am J Trop Med Hyg. 2013;89:873–4.PubMedCrossRef Mbewe EK, Uys LR, Birbeck GL. The impact of a short depression and anxiety screening tool in epilepsy care in primary health care settings in Zambia. Am J Trop Med Hyg. 2013;89:873–4.PubMedCrossRef
38.•
go back to reference Bellon M, Walker C, Peterson C, Cookson P. The “E” word: epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy Behav. 2013;27:251–6. This study of 343 Australians with epilepsy is one of the only recent studies examining unfair treatment towards people with epilepsy over time in regard to employment, education, and community participation.PubMedCrossRef Bellon M, Walker C, Peterson C, Cookson P. The “E” word: epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy Behav. 2013;27:251–6. This study of 343 Australians with epilepsy is one of the only recent studies examining unfair treatment towards people with epilepsy over time in regard to employment, education, and community participation.PubMedCrossRef
39.
go back to reference Ghanean H, Jacobsson L, Nojomy M. Self-perception of stigma in persons with epilepsy in Tehran, Iran. Epilepsy Behav. 2013;28:163–7.PubMedCrossRef Ghanean H, Jacobsson L, Nojomy M. Self-perception of stigma in persons with epilepsy in Tehran, Iran. Epilepsy Behav. 2013;28:163–7.PubMedCrossRef
40.
go back to reference Fernandes PT, Salgado PC, Noronha AL, Sander JW, Li LM. Stigma Scale of Epilepsy: validation process. Arq Neuropsiquiatr. 2007;65 Suppl 1:35–42.PubMedCrossRef Fernandes PT, Salgado PC, Noronha AL, Sander JW, Li LM. Stigma Scale of Epilepsy: validation process. Arq Neuropsiquiatr. 2007;65 Suppl 1:35–42.PubMedCrossRef
41.
go back to reference Fernandes PT, Salgado PC, Noronha ALA, Barbosa FD, Souza EA, Li LM. Stigma scale of epilepsy: conceptual issues. J Epilepsy Clin Neurophysiol. 2004;10:213–8. Fernandes PT, Salgado PC, Noronha ALA, Barbosa FD, Souza EA, Li LM. Stigma scale of epilepsy: conceptual issues. J Epilepsy Clin Neurophysiol. 2004;10:213–8.
42.
go back to reference Salgado PC, Fernandes PT, Noronha AL, Barbosa FD, Souza EA, Li LM. The second step in the construction of a stigma scale of epilepsy. Arq Neuropsiquiatr. 2005;63:395–8.PubMedCrossRef Salgado PC, Fernandes PT, Noronha AL, Barbosa FD, Souza EA, Li LM. The second step in the construction of a stigma scale of epilepsy. Arq Neuropsiquiatr. 2005;63:395–8.PubMedCrossRef
43.
go back to reference Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav. 2004;5:472–82.PubMedCrossRef Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav. 2004;5:472–82.PubMedCrossRef
44.•
go back to reference Lim KS, Wu C, Choo WY, Tan CT. Development and validation of a public attitudes toward epilepsy (PATE) scale. Epilepsy Behav. 2012;24:207–12. Lim et al. developed the PATE scale in 130 Malaysians with epilepsy. It demonstrated good psychometric properties and has been used to assess attitudes in Malaysia.PubMedCrossRef Lim KS, Wu C, Choo WY, Tan CT. Development and validation of a public attitudes toward epilepsy (PATE) scale. Epilepsy Behav. 2012;24:207–12. Lim et al. developed the PATE scale in 130 Malaysians with epilepsy. It demonstrated good psychometric properties and has been used to assess attitudes in Malaysia.PubMedCrossRef
45.
go back to reference Mbuba CK, Abubakar A, Odermatt P, Newton CR, Carter JA. Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya. Epilepsy Behav. 2012;24:81–5.PubMedCentralPubMedCrossRef Mbuba CK, Abubakar A, Odermatt P, Newton CR, Carter JA. Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya. Epilepsy Behav. 2012;24:81–5.PubMedCentralPubMedCrossRef
46.
go back to reference Bandstra NF, Camfield CS, Camfield PR. Stigma of epilepsy. Can J Neurol Sci. 2008;35:436–40.PubMed Bandstra NF, Camfield CS, Camfield PR. Stigma of epilepsy. Can J Neurol Sci. 2008;35:436–40.PubMed
47.
go back to reference Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. 2003;15:49–69.PubMedCrossRef Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. 2003;15:49–69.PubMedCrossRef
48.
go back to reference Martiniuk AL, Speechley KN, Secco M, Campbell MK, Donner A. Evaluation of an epilepsy education program for grade 5 students: a cluster randomized trial. Epilepsy Behav. 2007;10:604–10.PubMedCrossRef Martiniuk AL, Speechley KN, Secco M, Campbell MK, Donner A. Evaluation of an epilepsy education program for grade 5 students: a cluster randomized trial. Epilepsy Behav. 2007;10:604–10.PubMedCrossRef
49.
go back to reference Brabcova D, Lovasova V, Kohout J, Zarubova J, Komarek V. Improving the knowledge of epilepsy and reducing epilepsy-related stigma among children using educational video and educational drama–a comparison of the effectiveness of both interventions. Seizure. 2013;22:179–84.PubMedCrossRef Brabcova D, Lovasova V, Kohout J, Zarubova J, Komarek V. Improving the knowledge of epilepsy and reducing epilepsy-related stigma among children using educational video and educational drama–a comparison of the effectiveness of both interventions. Seizure. 2013;22:179–84.PubMedCrossRef
50.•
go back to reference Elafros MA, Mulenga J, Mbewe E, Haworth A, Chomba E, Atadzhanov M, et al. Peer support groups as an intervention to decrease epilepsy-associated stigma. Epilepsy Behav. 2013;27:188–92. This is a unique and rare prospective study in which 103 people with epilepsy were exposed to monthly peer-support groups, and pre- and postintervention outcomes were assessed at 1 year. The study found that peer support in youths with epilepsy reduced stigma and may be a cost-effective approach in resource-poor regions.PubMedCentralPubMedCrossRef Elafros MA, Mulenga J, Mbewe E, Haworth A, Chomba E, Atadzhanov M, et al. Peer support groups as an intervention to decrease epilepsy-associated stigma. Epilepsy Behav. 2013;27:188–92. This is a unique and rare prospective study in which 103 people with epilepsy were exposed to monthly peer-support groups, and pre- and postintervention outcomes were assessed at 1 year. The study found that peer support in youths with epilepsy reduced stigma and may be a cost-effective approach in resource-poor regions.PubMedCentralPubMedCrossRef
Metadata
Title
Stigma in Epilepsy
Authors
Kirsten M. Fiest
Gretchen L. Birbeck
Ann Jacoby
Nathalie Jette
Publication date
01-05-2014
Publisher
Springer US
Published in
Current Neurology and Neuroscience Reports / Issue 5/2014
Print ISSN: 1528-4042
Electronic ISSN: 1534-6293
DOI
https://doi.org/10.1007/s11910-014-0444-x