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Stigma of Epilepsy

Published online by Cambridge University Press:  02 December 2014

Nancy F. Bandstra ,
Carol S. Camfield  and
Peter R. Camfield
Nancy F. Bandstra
Affiliation:
Department of Pediatrics & Psychology, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia, Canada
Carol S. Camfield*
Affiliation:
Department of Pediatrics & Psychology, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia, Canada
Peter R. Camfield
Affiliation:
Department of Pediatrics & Psychology, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia, Canada
*
IWK Health Centre, P.O. Box 9700, Halifax, Nova Scotia, B3K 6R8, Canada.
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Abstract

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Epilepsy directly affects 50 million people worldwide.Most can achieve excellent seizure control; however, people living with epilepsy continue to suffer from enacted or perceived stigma that is based on myths, misconceptions and misunderstandings that have persisted for thousands of years. This paper reviews the frequency and nature of stigma toward epilepsy. Significant negative attitudes prevail in the adolescent and adult public worldwide leading to loneliness and social avoidance both in school and in the workplace. People with epilepsy are often wrongly viewed as having mental health and antisocial issues and as being potentially violent toward others. Twenty-five percent of adults having epilepsy describe social stigma as a result of their epilepsy. They fear rejection and often feel shame or loneliness from this diagnosis. The psychosocial and social impact of epilepsy is significant. Yet few specific interventions have been demonstrated to alter this perception. The effect on public education is primarily short-term, while change over the long-term in attitudes and inaccurate beliefs have not presently been proven effective. School education programming demonstrates improved knowledge and attitude a month after a classroom intervention, but persisting change over a longer period of time has not been evaluated. In-depth adult psycho-educational programs for adults with epilepsy improves knowledge, coping skills and level of felt stigma. However these gains have not demonstrated persistence over time. Myths, misconceptions and misunderstandings about epilepsy continue and programs aimed at increasing knowledge and reducing negative public attitudes should be enhanced.

Résumé:

RÉSUMÉ:

L’épilepsie atteint 50 millions d’individus à travers le monde. La plupart des patients obtiennent un excellent contrôle des crises. Cependant, ceux qui vivent avec l’épilepsie souffrent dans les faits ou dans la perception d’un stigmate qui est fondé sur des mythes, des conceptions erronées et de l’ignorance qui perdurent depuis des millénaires. Dans cet article, nous analysons la fréquence et la nature des stigmates attachés à l’épilepsie, Des attitudes négatives significatives prévalent dans le public adolescent et adulte à travers le monde, ce qui mène à l’isolement et à l’évitement social à l’école et dans le milieu du travail. Les individus atteints d’épilepsie sont souvent considérés à tort comme ayant des problèmes de santé mentale et des tendances antisociales et comme étant potentiellement violents envers les autres. Vingt–cinq pour cent des adults atteints d’épilepsie perçoivent une stigmatisation sociale à cause de leur épilepsie. Ils craignent le rejet et ressentent souvent de la honte ou de l’isolement à cause de ce diagnostic. Bien que l’épilepsie ait un impact psychosocial et social important, peu d’interventions spécifiques se sont avérées efficacies pour modifier cette situation. Leur effet sur l’éducation du public est la plupart du temps de courte durée et la persistance des changements d’attitudes et de croyances à long terme n’a pas été démontrée. Les programmes scolaires améliorent les connaissances et les attitudes un mois après l’intervention en classe, mais l’évaluation de la persistance des changements sur une période plus longue n’a pas été faite. Les programmes psychoéducatifs approfondis destinés aux adultes atteints d’épilepsie améliorent les connaissances, les capacités d’adaptation et le niveau de stigmatisation ressenti. Cependant, ces acquis ne persistent pas à long terme. Les mythes, les conceptions erronées et l’ignorance à propos de l’épilepsie persistent et les programmes destinés à améliorer les connaissances et à diminuer les attitudes négatives du public devraient être intensifiés.

Type
Review Article
Information
Canadian Journal of Neurological Sciences , Volume 35 , Issue 4 , September 2008 , pp. 436 - 440
Copyright
Copyright © The Canadian Journal of Neurological 2008

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