Public knowledge, private grief: A study of public attitudes to epilepsy in the United Kingdom and implications for stigma

Purpose: For many people with epilepsy, the continuing social reality of their condition is as a stigma, thus representing a source of much private grief. To understand fully the nature of epilepsy stigma, it is important to examine attitudes and beliefs of not just the "targets" but also of the "perceivers" of stigma. Perceivers may hold erroneous beliefs and stereotypes that 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 U.K. Methods: A random sample of > 1,600 members of the general public was interviewed as part of the bimonthly UK Omnibus Survey. The response rate was 62%. Results: One fourth of informants knew someone with epilepsy and one half had witnessed a seizure. One half agreed that people with epilepsy are treated differently by others, and themes of exclusion, restriction, and normormality 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 favorable attitudes; but one fifth agreed with the statement that people with epilepsy have more personality problems than do others. Responses were influenced by informants' sociodemographic characteristics. Conclusions: The survey revealed attitudes and knowledge gaps that have the potential for discriminatory behavior. There are implications for how public education campaigns should be implemented, and who should be targeted.