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

Abstract

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.