Results from the 2005 SummerStyles and 2013 FallStyles surveys

By W. Cui, R. Kobau, M.M. Zack, J.M. Buelow, J.K. Austin. Epilepsy & Behavior 52(2015):108-118.

Purpose

Negative attitudes and behaviors towards people with epilepsy have been a longstanding problem for our society, despite many attempts to enhance awareness and decrease fear and misunderstanding of epilepsy.

The Epilepsy Program at the Centers for Disease Control and Prevention (CDC) in 2004 developed a survey to study different attitudes about epilepsy in U.S. adults. This paper shows the development of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale, as well as changes in attitudes over time.

Description of Study

  • Evaluated the areas of work/role expectations and personal fear/social avoidance by collecting data from two large surveys of U.S. adults.
  • Looked at changes in attitudes towards epilepsy from 2005 to 2013.

Summary of Study Findings

  • The study findings showed that the ABLE subscales on work and role expectations, as well as fear and social avoidance, accurately and reliably measured changes in U.S. adults towards epilepsy.
  • Some key points about work and role expectations in 2013:
    • At least 7 out of 10 adults felt that people with epilepsy could be as successful as others, lead normal lives, and cope with daily life.
    • About 1 out of 4 adults were “unsure about work and role expectations” for people with epilepsy.
    • 6 out of 10 adults expressed concerns about persons with epilepsy doing certain types of work.
  • Some key points about personal fear and social avoidance in 2013:
    • Many items suggested that some attitudes and beliefs may be improving. Yet, many people still fear and would avoid people with epilepsy in certain situations.
    • 1 out of 4 people said they “would be nervous around a person with epilepsy because they might have a seizure.”
    • A little more than 1 in 10 adults “would be afraid to be alone with a person with epilepsy,” that they “would avoid a person who has frequent seizures,” “would not date a person with epilepsy,” and “would not want their child to date a person with epilepsy.”
    • When data was adjusted for social and demographic differences (like age, location, gender), more negative attitudes about fear and social issues were noted in 2013.
  • Changes from 2005 to 2013:
    • More adults agreed that “people with epilepsy can do anything” and “can cope with everyday life.”
    • More adults in 2013 than in 2005 were concerned about the whether people with epilepsy can work in certain situations.
    • More negative attitudes were seen in 2013 than in 2005 on issues such as being “nervous around a person with epilepsy because they might have a seizure” or avoiding people with frequent seizures. Yet fewer reported that they would be “embarrassed if someone in the family had epilepsy.”
    • Generally, more negative attitudes were seen in men, younger adults (18 to 34 years old), adults with less education and lower incomes, single people, and non-whites.

What does this mean?

Public perceptions and attitudes towards people with epilepsy have been problematic for many years. This paper describes additional testing of a scale that can be used to measure a variety of attitudes and see what changes over time. This tool can help the epilepsy and public health communities learn what interventions work and where our awareness priorities should be focused.

While a number of negative attitudes were still present in 2013, some improvements were noted. It was concerning that in general more negative attitudes about epilepsy were seen in younger adults. Young adults can be influenced by many people and situations. They also may have a great influence on people with epilepsy, for example in the workplace, social situations, and within families. Targeting young adults in public awareness and education strategies about epilepsy may help change this.

Abstract: November 2015

Article published in Epilepsy & Behavior, November 2015

Authored By: 
Patty Obsorne Shafer RN, MN