Department of Brain Science, Ajou University School of Medicine, Suwon, South Korea; Department of Neurology, Ajou University School of Medicine, Suwon, South Korea.
Department of Mathematics, Ajou University, Suwon, South Korea.
Epilepsy Behav. 2024 Aug;157:109842. doi: 10.1016/j.yebeh.2024.109842. Epub 2024 Jun 21.
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.
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.
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.
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.
癫痫长期以来一直与污名和误解联系在一起。为应对这一问题，韩国癫痫学会于 2008 年发起了癫痫更名项目，用一个中立且有科学依据的名称“脑电障碍”来取代带有污名的术语。本研究旨在探讨术语变化对癫痫相关公众话语的影响。
使用文本数据分析技术（包括潜在狄利克雷分配主题建模、频率分析和情感分析）分析来自不同时期（2001-2003 年、2011-2014 年、2017-2018 年和 2020-2022 年）的在线新闻文章。纳入 2017-2018 年的数据可在不考虑 COVID-19 大流行影响的情况下检验话语趋势。通过网络图可视化每个时期的词汇相关性。将偏头痛作为对照术语，突出在没有重大污名干预措施的情况下感知的变化。
分析结果显示，术语偏好发生了显著变化，脑电障碍逐渐取代了新闻文章中的癫痫。癫痫相关话语随着时间的推移从关注医疗保健和经济方面演变为以患者为中心的讨论，强调了癫痫患者的日常生活。这种从更具同理心和更少污名化的语言向偏头痛话语的转变，突出了术语变化对癫痫感知的具体影响。
韩国采用中立术语“脑电障碍”影响了癫痫相关话语，导致更多以患者为中心的讨论，并减少了污名化。本研究强调了术语在塑造公众对疾病的看法方面的重要性，并表明改变术语可以积极影响对癫痫的理解和去污名化。
