TY - JOUR
T1 - Epilepsy misconceptions and stigma reduction
T2 - Current status in Western countries
AU - Herrmann, Lynn K.
AU - Welter, Elisabeth
AU - Berg, Anne T.
AU - Perzynski, Adam T.
AU - Van Doren, Jamie R.
AU - Sajatovic, Martha
N1 - Funding Information:
This project was supported by Cooperative Agreement Number U48DP005030 (SIP14-008) under the Health Promotion and Disease Prevention Research Centers Program, funded by the Centers for Disease Control and Prevention . Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services. The authors would like to acknowledge the helpful suggestions of Rosemarie Kobau, Matthew Zack, and Wanjun Cui from the Centers for Disease Control and Prevention (CDC).
Publisher Copyright:
© 2016 Elsevier Inc.
PY - 2016/7/1
Y1 - 2016/7/1
N2 - 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 were used for this review. Results: Eighty-one 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 overgeneralizations 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 destigmatize epilepsy may help reduce misconceptions.
AB - 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 were used for this review. Results: Eighty-one 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 overgeneralizations 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 destigmatize epilepsy may help reduce misconceptions.
KW - Epilepsy
KW - Health communication
KW - Misconceptions
KW - Seizures
KW - Stigma
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U2 - 10.1016/j.yebeh.2016.04.003
DO - 10.1016/j.yebeh.2016.04.003
M3 - Review article
C2 - 27208826
AN - SCOPUS:84968860946
SN - 1525-5050
VL - 60
SP - 165
EP - 173
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
ER -