Novotná I, Rektor I
Brno Epilepsy Centre, Masaryk University First Department of Neurology, St. Anne's Hospital, Brno, Czech Republic.
Centre of Neuroscience, Central European Institute of Technology (CEITEC), Masaryk University, Brno, Czech Republic.
Acta Neurol Scand. 2017 Apr;135(4):454-458. doi: 10.1111/ane.12619. Epub 2016 Jun 8.
The long-term development of public attitudes towards people with epilepsy (PWE) was studied.
Four questions (Q) used in Czech questionnaires for studies in 1981, 1984, 1998 and 2009 concerned: Q1, familiarity with the concept of epilepsy; Q2, tolerance towards children with epilepsy; Q3, whether epilepsy is considered to be a mental disease; and Q4, attitudes towards employment of PWE.
The quality of information about epilepsy increased significantly between 1981 and 1998, 1981 and 2009, and 1998 and 2009. The 1981 and 1984 studies reflected a level of information inferior to the levels seen in Germany and the USA, and the difference had almost disappeared in 1998 and 2009.
The long-term follow-up studies in Czech Republic displayed a permanent increase in knowledge about epilepsy. This may reflect the progress in the spread of information, the efforts of patient associations and specialists and perhaps also a change in general attitudes towards people with disabilities. The dramatic change of information levels in Czech surveys could also reflect the change of the political system in 1989. A question that remains to be answered is the extent to which the positive trend reflects positive attitudes in real life. The answers to questions concerning whether people would be willing to help a person having a seizure remain unsatisfactory. Greater efforts should be made to improve the situation of PWE and to minimize their stigmatization.
研究公众对癫痫患者(PWE)态度的长期发展情况。
1981年、1984年、1998年和2009年捷克问卷调查中使用的四个问题(Q)涉及:问题1,对癫痫概念的熟悉程度;问题2,对癫痫患儿的容忍度;问题3,癫痫是否被视为精神疾病;问题4,对癫痫患者就业的态度。
1981年至1998年、1981年至2009年以及1998年至2009年期间,关于癫痫的信息质量显著提高。1981年和1984年的研究反映出信息水平低于德国和美国,而在1998年和2009年这种差异几乎消失。
捷克共和国的长期随访研究显示,对癫痫的了解持续增加。这可能反映了信息传播的进步、患者协会和专家的努力,或许也反映了对残疾人总体态度的变化。捷克调查中信息水平的巨大变化也可能反映了1989年政治体制的变革。一个有待回答的问题是,这种积极趋势在多大程度上反映了现实生活中的积极态度。关于人们是否愿意帮助癫痫发作患者的问题答案仍不尽人意。应做出更大努力来改善癫痫患者的状况并尽量减少对他们的污名化。