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Public knowledge, private grief: a study of public attitudes to epilepsy in the UK and implications for stigma

Jacoby, Ann; Gorry, Joanne; Gamble, Carrol and Baker, Gus A. (2004) Public knowledge, private grief: a study of public attitudes to epilepsy in the UK and implications for stigma. Epilepsia, 45 (11). pp. 1405-1415. ISSN 1528-1167 (Online); 0013-9580 (Print)

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Purpose: For many people with epilepsy, the continuing social reality of their condition is as stigma, thus representing a source of much private grief. To fully understand the nature of epilepsy stigma, it is important to examine attitudes and beliefs of not just the ‘targets’ but also the ‘perceivers’ of stigma. Perceivers may hold erroneous beliefs stereotypes which lead them to have negative expectations of people affected by epilepsy. This study examined levels of knowledge and attitudes among perceivers of epilepsy stigma in the UK. Methods: A random sample of over 1600 members of the general public was interviewed as part of the bi-monthly UK Omnibus Survey. The response rate was 62%. Results: A quarter of informants knew someone with epilepsy and a half had witnessed a seizure. A half agreed that people with epilepsy are treated differently by others and themes of exclusion, restriction and non-normality were commonly cited as reasons for this. Epilepsy ranked second in a range of health conditions, in terms of which would cause them greatest concern if informants had to work with someone so affected. Responses to a series of attitude statements indicated that most held highly favourable attitudes; but a fifth agreed with the statement that people with epilepsy have more personality problems than others. Responses were influenced by informants’ socio-demographic characteristics. Conclusions: The survey revealed attitudes and knowledge gaps which have the potential for discriminatory behaviour. There are implications for how public education campaigns should be implemented, and who should be targeted.

Item Type:Article
Additional Information:Issue: November 2004. Full citation: Ann Jacoby, Joanne Gorry, Carrol Gamble, Gus A. Baker 'Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma', Epilepsia, 45, 11, 1405-1415, 2004, 1528-1167, 0013-9580. Department of Primary Care; Centre for Medical Statistics; Department of Neurosciences, University of Liverpool, Liverpool, United Kingdom DOI: 10.1111/j.0013-9580.2004.02904.x US:
Uncontrolled Keywords:epilepsy; stigma; general public; attitudes; knowledge; ILLNESS; PEOPLE; AWARENESS; MEDIA
Subjects:R Medicine > R Medicine (General)
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments, Research Centres and Related Units:Academic Faculties, Institutes and Research Centres > Faculty of Medicine > School of Clinical Sciences
Academic Faculties, Institutes and Research Centres > Faculty of Medicine > School of Population, Community & Behavioural Sciences
Academic Faculties, Institutes and Research Centres > Research Centres > Medical Statistics and Health Evaluation, Centre for
Publisher's Statement:The definitive version is available at Blackwell Publishing, Inc. © Copyright © 2004 International League Against Epilepsy. This is the author's version of the work. It is posted here by permission of International League Against Epilepsy for personal use, not for redistribution. The definitive version was published in Epilepsia, 'The Journal of the International League Against Epilepsy', 45(11): 1405–1415, 2004.
ID Code:271
Deposited On:12 Aug 2008 15:52
Last Modified:05 Mar 2012 16:01

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