A comparative study of public attitudes toward people with epilepsy in Austria, Switzerland and Germany based on web-based surveys

Abstract

Objective

Assessment and comparison of public attitudes toward people with epilepsy (PWE) in Austria (AT), Switzerland (CH) and Germany (DE), including the identification of predictors.

Methods

Web-based surveys were conducted in all three countries using the same method of data collection, data weighting and validated questionnaires: SAPE (Scale of Attitudes toward People with Epilepsy) to assess Social Distance, Stereotypes, Personal Concerns, and Emotional Reactions, and Suitability of Professional and Leisure Activities for PWE, Epilepsy Knowledge, Experience with epilepsy, and Sociodemographic data of the respondents. For comparison with former surveys the Caveness Questions (CQ) were added. Adult respondents (≥ 18 years) who had heard of epilepsy from AT (n = 1017), CH (n = 951), and DE (n = 1001) were included.

Results

About two thirds of the population have known someone with epilepsy, around half have witnessed a seizure but less than half would know what to do during a seizure. Attitudes toward PWE were similar across the three countries and did not differ significantly (presented as mean ± standard deviation in the total group): Concerns (41.9 ± 23.2) and Fears (36.6 ± 23.9) in dealing with PWE being more pronounced than Anger (9.6 ± 17.1), negative Stereotypes (17.7 ± 18.3), and Social Distance (17.0 ± 18.6). One’s own involvement appears to be a key in reducing social distance and improving attitudes toward PWE: Personal contact with PWE, the ability to help during a seizure, and knowledge about treatment of epilepsy were the most important predictors for positive attitudes. Women reported less Social Distance and Anger than men. Only 5–7 % of the respondents considered epilepsy as insanity, but between 22–27 % would agree with at least one distancing item of the CQ. Professional activities involving dangerous situations or weapons and those involving direct responsibility for a helpless person (baby) were considered less suitable for PWE by around 40 % or more of the respondents in all three countries. However, the share of those who were uncertain about the Suitability of Occupational and Leisure Activities was quite high.

Significance

For the first time a common survey was conducted in the three German speaking countries of Austria, Switzerland and Germany with the new tool (SAPE) encompassing adapted scales on Social Distance and Emotional Reactions. The survey laid the foundation for monitoring changes in attitudes in the three countries in the long term and shows which priorities should be set for desirable joint actions by the three Epilepsy Leagues/Societies to positively influence the attitudes of the populations toward PWE.