A.J. Noble, A.G. Marson. Epilepsy & Behavior 59 (2016) 21-27.

Purpose

Do people have preferences about what term should be used - person with epilepsy or epileptic? Some people feel very strongly about this, expressing concerns that the term “epileptic” is a stigmatizing label. Using a person-centered phrase, such as person with epilepsy is preferred by many in epilepsy and among people with many different conditions.

The current study tried to replicate an earlier study done in Brazil to evaluate attitudes and preferences about the use of these terms. The Brazilian study found that Portuguese speaking students had more negative attitudes when the term “epileptic” was used as compared to “person with epilepsy.”

Description of Study

The study by Noble and Marson was conducted among 234 English speaking students from a university in the United Kingdom studying psychology or medicine.

  • A survey was given to assess attitudes and knowledge about epilepsy.
  • Half of the students received the survey using the term “epileptic” and half completed a survey where “person with epilepsy” was used.

Four questions were used as the main measure of attitudes about epilepsy:

  1. Do you think that people with epilepsy/epileptics are rejected by society?
  2. Do you think that people with epilepsy/epileptics have more difficulty becoming employed?
  3. Do you think that people with epilepsy/epileptics have more difficulties at school?
  4. Are you prejudiced towards people with epilepsy/epileptics?

A standardized measure of attitudes and beliefs, as well as questions about general knowledge and familiarity about epilepsy, were included.

Summary of Study Findings

  • Among the two groups of students in the U.K., the term “epileptic” did not result in more negative attitudes or beliefs than the term “person with epilepsy."
  • One section of the survey found that an increased knowledge of the social aspects of epilepsy was associated with more positive attitudes.

There were no differences between the students in the two groups.

What does this mean?

  • Compared to the prior study, this study suggests that the terms “epileptic” and “person with epilepsy” may have different connotations in different cultures.
  • The effects of age on perceptions of terms is not known since both studies surveyed students. People in the Brazilian study were high school students and the average age in the U.K. study was 20 years old.
  • These studies used surveys which did not allow open ended responses. Open ended questions or interviews could result in different findings.
  • The authors recommended that views of people with epilepsy should be sought to determine their preferences and reasons for those preferences in a standardized way.

What do you think? If you’d like to share your preferences about using the terms “epileptic” or “person with epilepsy,” please write your comments on the bottom of this page.

Article published in Epilepsy & Behavior, June 2016

Authored By: 
Patty Obsorne Shafer RN, MN
MN | Associate Editor/Community Manager
Authored Date: 
06/2016
Reviewed By: 
Christianne N. Heck MD, MMM
on: 
Sunday, June 12, 2016