TY - JOUR AU - Koschack, Janka AU - Weibezahl, Lara AU - Friede, Tim AU - Himmel, Wolfgang AU - Makedonski, Philip AU - Grabowski, Jens PY - 2015 DA - 2015/07/01 TI -科学与经验证据:多发性硬化论坛中慢性脑脊髓静脉功能不全辩论的话语分析JO - J医学互联网Res SP - e159 VL - 17 IS - 7 KW -多发性硬化KW -静脉功能不全KW -互联网KW -社交媒体KW -认知失调KW -定性研究AB -背景:多发性硬化症(MS)的血管假说被称为慢性脑脊静脉功能不全(CCSVI)，它的治疗方法(被称为解放疗法)立即被专家们拒绝，但被患者们热情地抓住，他们利用患者在线论坛等社交媒体与世界各地的其他患者分享他们的经历。科学信息和非专业经验之间的矛盾可能是MS患者痛苦的根源，但我们不知道患者如何感知和处理这些矛盾。目的:我们旨在了解在MS患者在线论坛中，科学知识和经验知识是否被认为是矛盾的，如果是这样，这些矛盾是如何解决的，以及患者如何试图调和CCSVI辩论与他们自己的病史和经验。方法:通过批评性话语分析，我们按照时间顺序研究了德国MS学会患者在线论坛中与CCSVI相关的帖子，从第一篇提到CCSVI的帖子到达到饱和的时间点。在此期间，共发现了117个与ccsvi相关的帖子，其中包含1907个帖子。我们分析了个人之间以及个人之间的互动和沟通实践，寻找具体子主题之间的关系以识别更抽象的话语链，并试图揭示解释用户如何参与CCSVI讨论的话语立场。结果:关于CCSVI有一场情绪化的辩论，可以概括为两个话语链:(1)“专业知识提供者的衰落”和(2)“非专业经验宝库的崛起”。话语链表明，讨论偏离了科学知识或经验知识更有证据价值的问题。 Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions “trust in evidence-based knowledge,” “trust in experience-based knowledge,” and “subjectivity” (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement). Conclusions: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information. SN - 1438-8871 UR - //www.mybigtv.com/2015/7/e159/ UR - https://doi.org/10.2196/jmir.4103 UR - http://www.ncbi.nlm.nih.gov/pubmed/26133525 DO - 10.2196/jmir.4103 ID - info:doi/10.2196/jmir.4103 ER -