Background & Objective: Epilepsy has long been associated with stigma and misconceptions. In response, the Korean Epilepsy Society initiated the Epilepsy Renaming project in 2008 to replace the stigmatizing term with a neutral and scientifically grounded name, "cerebroelectric disorder". This study explores the impact of changing terminology on the public discourse surrounding epilepsy.
Methods: Online news articles from distinct time periods (2001-2003, 2011-2014, 2017-2018, and 2020-2022) were analyzed using text data analysis techniques, including Latent Dirichlet Allocation topic modeling, frequency analysis, and sentiment analysis. The inclusion of data from 2017 to 2018 allowed for an examination of discourse trends independent of the COVID-19 pandemic's influence. Correlation of words in each period was visualized via network maps. Migraine was set as control term to highlight changes in perception devoid of significant stigma intervention efforts.
Results: The analysis revealed a significant shift in terminology preference, with cerebroelectric disorder gradually replacing epilepsy in news articles. The discourse surrounding epilepsy evolved over time from focusing on healthcare and economic aspects to patient-centered discussions, emphasizing the daily lives of individuals with epilepsy. This shift towards more empathetic and less stigmatized language was contrasted against the discourse on migraine, highlighting the specific impact of the terminological change on epilepsy's perception.
Conclusion: The adoption of the neutral term "cerebroelectric disorder" in South Korea has influenced the discourse surrounding epilepsy, leading to more patient-centered discussions and a reduction in stigma. This study highlights the importance of terminology in shaping public perceptions of diseases and suggests that changing terminology can positively impact the understanding and destigmatization of epilepsy.
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http://dx.doi.org/10.1016/j.yebeh.2024.109842 | DOI Listing |
Epilepsy Res
December 2024
Department of Neurology, Faculty of Medicine, Cairo University, Cairo, Egypt. Electronic address:
Background: Naming is an important part of human communication. The precision of medical terms greatly influences the patients and their caregivers. "Alsara'الصرع " is the Arabic term defining epilepsy.
View Article and Find Full Text PDFEpilepsy Behav
August 2024
Department of Brain Science, Ajou University School of Medicine, Suwon, South Korea; Department of Neurology, Ajou University School of Medicine, Suwon, South Korea. Electronic address:
Background & Objective: Epilepsy has long been associated with stigma and misconceptions. In response, the Korean Epilepsy Society initiated the Epilepsy Renaming project in 2008 to replace the stigmatizing term with a neutral and scientifically grounded name, "cerebroelectric disorder". This study explores the impact of changing terminology on the public discourse surrounding epilepsy.
View Article and Find Full Text PDFEpilepsy Behav
January 2020
Department of Pediatrics, Pusan National University Yangsan Hospital, Yangsan, Republic of Korea.
Purpose: The purpose of this study was to evaluate differences in stigma, disclosure management of epilepsy, and knowledge about epilepsy between patients with epilepsy who recognized and did not recognize the new Korean term for epilepsy.
Methods: This was a cross-sectional, multicenter study. The Stigma Scale-Revised, the Disclosure Management Scale, the Patient Health Questionnaire-9, and a questionnaire assessing knowledge about epilepsy were used.
Epilepsia
March 2014
Department of Pediatrics, Pediatric Epilepsy Clinic, Severance Children's Hospital, Epilepsy Research Institute, Yonsei University College of Medicine, Seoul, Korea.
Public misconception of epilepsy may lead to significant stigma to the disease itself, thereby causing impaired quality of life in people with epilepsy. Traditionally, epilepsy has been considered to be the consequence of evanescent spiritual forces, and even demonic possession (in many countries). The names of epilepsy in some East Asian countries originated from China, and include madness in their meaning.
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