Department of Neurology, "Sveti Duh" University Hospital, School of Medicine Josip Juraj Strossmayer, University of Osijek, Sveti Duh 64, Zagreb, Croatia.
Department of Neurology, "Sveti Duh" University Hospital, School of Medicine Josip Juraj Strossmayer, University of Osijek, Sveti Duh 64, Zagreb, Croatia.
Epilepsy Behav. 2019 Mar;92:253-255. doi: 10.1016/j.yebeh.2019.01.015. Epub 2019 Feb 3.
Publications on the topic of appropriate labels for someone with diagnosed epilepsy have so far almost exclusively consisted of views of professionals in this field. We conducted an online study of patients treated for epilepsy and persons close to them with the aim of identifying which label they prefer, whether they oppose the term "epileptic", and which characteristics are related with their preferences. In total, 328 responses were analyzed. Subjects mostly favored "person-first" terminology ("person having epilepsy" and "person with epilepsy"), and 53.9% disapproved of the term "epileptic". Parents of patients are more likely than patients themselves to favor the label "person having epilepsy" and to disapprove of the label "epileptic". These results can help with shaping future terminology recommendations.
关于为被诊断患有癫痫的人选择合适标签的出版物，迄今为止几乎全部来自该领域专业人士的观点。我们针对接受癫痫治疗的患者及其密切接触者进行了一项在线研究，旨在确定他们更喜欢哪种标签，他们是否反对使用“癫痫”一词，以及哪些特征与他们的偏好有关。共分析了 328 份回复。研究对象大多更喜欢“以人为本”的术语（“患有癫痫的人”和“癫痫患者”），53.9%的人不赞成使用“癫痫”一词。与患者本人相比，患者的父母更倾向于使用“患有癫痫的人”这一标签，并反对使用“癫痫”一词。这些结果有助于制定未来的术语推荐。
