A new UK study has highlighted the need for more research into the way the use of different terminology can affect perceptions of people with epilepsy.
The research, carried out at the University of Liverpool and published in the medical journal Epilepsy & Behavior, indicates that the views of people with epilepsy need to be taken into account when assessing the ways in which stigmatisation can be perpetuated, and calls into question a number of assumptions.
Currently, it is widely recommended that the use of the word “epileptic” as a noun to describe an individual with epilepsy should be avoided in order to avoid generating stigma. A study conducted by the Brazilian Global Campaign Against Epilepsy supported this idea, with experimental evidence showing that the label evoked more negative attitudes in students than the term “person with epilepsy”.
In order to see whether this phenomenon was universal, the team at the University of Liverpool replicated the experiment among 234 students in the UK. All participants were asked to complete a survey to assess their attitudes and beliefs about living with epilepsy, but they were first randomised to one of two groups. Group one received a survey in which patients were referred to as ‘people with epilepsy’, whilst group two received one in which they were referred to as ‘epileptics’. Aside from being translated into English, the design of the survey was very similar to the Brazilian version. Participants were also assessed on their knowledge of epilepsy to see if that had an influence over people’s responses.
After the data had been collated and analysed, the groups were found to be comparable in terms of their responses, with no statistically significant or meaningful differences in beliefs/attitude.
The fact that the word “epileptic” did not provoke more negative attitudes potentially suggests that the effect seen in the Brazilian study might be culturally dependent, or that the methodology of the original research was flawed.
The researchers conclude: “Our results have implications for the global debate about how negative attitudes towards epilepsy might be addressed. Simply not saying ‘epileptic’ may not promote the positive attitudes towards epilepsy that had been expected.
“To know how to best refer to those with epilepsy, evidence on the preferences of those actually living with epilepsy is needed.”
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