Noble Adam J, Marson Anthony G
Department of Psychological Sciences, University of Liverpool, UK.
Department of Molecular and Clinical Pharmacology, University of Liverpool, UK.
Epilepsy Behav. 2016 Jun;59:21-7. doi: 10.1016/j.yebeh.2016.03.016. Epub 2016 Apr 14.
The advantages and disadvantages of using "epileptic" as a noun to describe someone with epilepsy have long been debated. Recent high-profile recommendations have stated that the term should not be used, including in English, as it perpetuates stigma. This decision was largely informed by a Brazilian Global Campaign Against Epilepsy study that reported experimental evidence indicating that, with students, the label evokes more negative attitudes than "person with epilepsy". The generalizability of this effect to different countries/cultures, and thus the justification for the recommendations, has never been tested.
We replicated the Brazilian study in the UK, in English, while also addressing methodological limitations. It was powered to detect the effects reported by the Brazilian study, with 234 students completing a survey regarding epilepsy attitudes. Half were randomized to Group 1 and half to Group 2. In Group 1, patients were referred to as "people/person with epilepsy" within the attitudinal measures, while in Group 2 they were referred to as "epileptic/s". Measures included translations of the questions used in the Brazilian study and the Attitudes and Beliefs about Living with Epilepsy scale. Participants' epilepsy familiarity and knowledge were also assessed.
The two groups were comparable in characteristics. A comparison of their responses to the attitude measures revealed no statistically significant or meaningful differences.
In this English replication, the word "epileptic" did not provoke more negative attitudes. This suggests that the effect reported by the Brazilian study might be culturally dependent. Methodological limitations to that study might also be relevant. Our results have implications for the global debate about how negative attitudes towards epilepsy might be addressed. Simply not saying "epileptic" may not promote the positive attitudes towards epilepsy that had been expected. To know how to best refer to those with epilepsy, evidence on the preferences of those actually living with epilepsy is needed.
长期以来，使用“癫痫患者”作为名词来描述癫痫患者的利弊一直存在争议。最近备受瞩目的建议指出，该术语不应被使用，包括在英语中，因为它会延续污名化。这一决定很大程度上是基于巴西全球抗癫痫运动的一项研究，该研究报告了实验证据，表明对于学生而言，这个标签比“癫痫患者”引发更多负面态度。这种效应在不同国家/文化中的普遍性，以及因此该建议的合理性，从未得到过检验。
我们在英国用英语重复了巴西的研究，同时也解决了方法上的局限性。该研究有足够的能力检测巴西研究报告的效应，234名学生完成了一项关于癫痫态度的调查。一半被随机分配到第1组，一半被随机分配到第2组。在第1组中，在态度测量中患者被称为“癫痫患者”，而在第2组中他们被称为“癫痫患者”。测量包括巴西研究中使用的问题的翻译以及癫痫生活态度和信念量表。还评估了参与者对癫痫的熟悉程度和知识。
两组在特征上具有可比性。对他们态度测量反应的比较显示没有统计学上的显著差异或有意义的差异。
在这项英语重复研究中，“癫痫患者”这个词并没有引发更多负面态度。这表明巴西研究报告的效应可能取决于文化。该研究的方法局限性也可能是相关的。我们的结果对关于如何应对对癫痫的负面态度的全球辩论有影响。仅仅不说“癫痫患者”可能不会促进对癫痫预期的积极态度。要知道如何最好地称呼癫痫患者，需要了解实际患有癫痫的人的偏好证据。
