Does public attitude change by labeling a person as epileptic, person with epilepsy or the acronym PWE? A systematic review

Abstract

Purpose: It is still unknown if attitudinal differences by diverse labeling of persons with epilepsy could be universally accepted with the actual literature evidence. The manner in which questions are constructed could also have an impact in final results. The purpose of this systematic review was to examine the published articles regarding changes in public´s attitude towards epilepsy by labeling a person as epileptic, person with epilepsy or with the acronym PWE.

Methods: We undertook a systematic review of the literature using common databases with specific keywords and combinations searching for original articles, meta-analysis and systematic reviews. Sociodemographic variables, attitude results and questions style were analyzed in included articles.

Results: Four original articles were found. Significant attitudinal changes were described in three studies with the label person with epilepsy. One study failed to demonstrate an attitudinal change by distinct labeling of a person with epilepsy. All questions were formulated in a personal way. Few neutral and mostly induced questions were found in the studies.

Conclusion: By the use of the label "person with epilepsy" there is a trend towards positive changes in public's attitudes, although evidence is scarce to consider this tendency as universally applicable. More studies are needed considering widespread social and cultural backgrounds and patient opinion. Language power by wording type could be a key consideration for future studies.

Keywords: Culture; Epilepsy; Label; Language expression; Stigma.