Engler Jennifer, Adami Sandra, Adam Yvonne, Keller Bettina, Repke Tim, Fügemann Hella, Lucius-Hoene Gabriele, Müller-Nordhorn Jacqueline, Holmberg Christine
Institute of Public Health, Charité-Universitätsmedizin Berlin, Berlin, Germany.
Department of Psychology, University of Freiburg, Freiburg im Breisgau, Germany.
Patient Educ Couns. 2016 Aug;99(8):1325-32. doi: 10.1016/j.pec.2016.03.015. Epub 2016 Mar 17.
To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences").
Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions.
Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website.
Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information.
When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.
了解癌症患者的期望以及他们可能从其他患者的经历中学到什么，这些经历经过分析和整理后在一个名为krankheitserfahrungen.de（意为“疾病经历”）的网站上展示。
采用混合方法，包括日志文件分析、调查数据分析以及焦点小组讨论的主题分析。
用户高度重视网站上呈现的广泛患者经历。krankheitserfahrungen.de的学术领导使他们信任信息质量。阅读、观看和聆听其他癌症患者的经历给用户带来了希望和信心。搜索有相似经历的人是浏览该网站的主要方式。
krankheitserfahrungen.de上呈现的患者叙述提供了一个有用的资源，支持癌症患者应对自身疾病。能够获取这种基于研究的日常癌症经历描述被视为对现有患者信息的一大贡献。
当健康信息网站纳入患者经历时，应遵循定性研究的质量标准并涵盖广泛内容，以便用户能够找到与自己相似的患者。筛选选项是一个有用的工具。文字和视频相结合是有益的，因为用户有不同的偏好。纳入患者照片和视频访谈有助于增强真实性和亲近感。
