Epilepsy misconceptions and stigma reduction: Current status in Western countries

Abstract

Objective: This systematized literature review identified reports describing epilepsy misconceptions in the developed Western countries and research interventions focused on reducing these misconceptions. Materials and Methods: English language publications from January 2004 to January 2015 that described original research conducted in Europe, North/Central/South America or Australia on misconceptions about epilepsy among the general public. Results: 81 publications were selected. Most studies were conducted in the Americas (N=30) and Europe (N=31). Misconceptions and attitudes about epilepsy were assessed among clinical providers (N= 9), family members of people with epilepsy (PWE, N=5), teachers (N= 11), students (N=22), and the general public (N= 25). Most studies used structured questionnaires, sometimes adding open-ended questions. Misconceptions reflected socially exclusionary attitudes directed at PWE, ignorance about treatment, and over-generalizations that are stigmatizing when applied to all PWE. Misconceptions were more prevalent in those with less education, lower socioeconomic status, and no exposure to PWE. There were only 12 intervention studies. While intervention studies were generally effective in improving attitudes, many were targeted to healthcare and education settings, were time intensive, and impractical for broad general population implementation. None incorporated newer technology-based strategies regarding effective health communication approaches. Conclusions: Types of epilepsy misconceptions were similar in reports published over the last decade, although most referred to misconceptions that have already been previously described. Existing questionnaires may fail to identify more subtle forms of current misconceptions and negative attitudes. Few interventional studies specifically target epilepsy stigma. Practical and broad scalable approaches to de-stigmatize epilepsy may help reduce misconceptions.

A randomized prospective pilot trial of Web‐delivered epilepsy stigma reduction communications in young adults

“…3 Overall, age was negatively correlated with epilepsy knowledge (younger people had less knowledge, Spearman correlation −.231, p<.01) and positively correlated with stigma levels (younger people had more stigmatizing attitudes, Spearman correlation .522, p<.01).Women had lower levels of stigma compared to men when videos were assessed separately (p<.01), but in the combined sample there were no gender differences in epilepsy knowledge. Individuals who knew someone with epilepsy had more stigmatizing attitudes (p<.01) and a trend for less epilepsy knowledge (p=.079) compared to those who did not know someone with epilepsy.…”

“…The nature and presentation of epilepsy stigma has been widely documented, 3; 24 but evidence-based approaches to reduce epilepsy stigma are limited. Additional novel features of this RCT is that it targeted young people between the ages of 18–29, used stigma-reduction interventions that were informed by a systematic review of the epilepsy stigma literature, 3 considered health communication concepts, and was informed by input from a CAB consisting of key stakeholders that included people with epilepsy, family members and a health professional with expertise in epilepsy. Study findings regarding the association of video format as it relates to epilepsy knowledge and stigma are somewhat mixed.…”

“…3; 12; 13 A local CAB representing people with epilepsy, epilepsy caregivers and providers, and members of the Epilepsy Association of Cleveland provided critical input and oversight to this project. The study team agreed upon two distinct messaging themes that would target and elicit a positive emotional response and hopefully lead to favorable attitudes.…”

Are “Theory of Mind” Skills in People with Epilepsy Related to How Stigmatised They Feel? An Exploratory Study

“…Unfortunately, there continues to be a shortage of empirically evaluated and scalable interventions that can be used to do this [54]. There is a need therefore for continued investment in this area.…”

Epilepsy and Stigmatization: A review

“…Destekleyici, pozitif, sosyal olarak kucaklayýcý bir çevre oluþturmak ve var olan yanlýþ kanýlarý deðiþtirmek için yeni stratejiler geliþtirmek bu damgalanmayý azaltmaya yardýmcý olabilir. Epilepside damgalanmayý azaltacak giriþimler sýnýrlý olduðu için belki baþka hastalýklarda, örneðin ruhsal hastalýklarda damgalanma ile baþa çýkma protokollerine gözatýlabilir ve bunlardan yola çýkýlarak epilepsi konusunda ne yapýlabilecegi planlanabilir (13,39).…”