在网上呈现基于科学的疾病经历——对德国DIPEx网站使用情况的评估。

Presenting scientifically-derived illness experiences online - Evaluation of the use of the DIPEx Germany website.

作者信息

Schultze Martin, Breuning Martina, von der Heyde Markus, Kaiser Maleen, Müller-Nordhorn Jacqueline, Holmberg Christine

机构信息

Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Public Health, Charité - Universitätsmedizin Berlin, Berlin, Germany.

University of Education Freiburg, Department of Public Health and Health Education, Germany.

出版信息

Patient Educ Couns. 2022 Jul;105(7):2328-2337. doi: 10.1016/j.pec.2021.10.028. Epub 2021 Oct 30.

DOI:10.1016/j.pec.2021.10.028

PMID:34823923

Abstract

OBJECTIVE

To evaluate the real-time usage of krankheitserfahrungen.de, a website providing scientifically collected and analyzed experiences of persons with various chronic illnesses.

METHODS

Web analytics of website use of www.krankheitserfahrungen.de in 2016. Qualitative content analysis of the 150 most and least opened video/audio clip titles in 2018-19.

RESULTS

In 2016, krankheitserfahrungen.de had 19,703 unique visits, of which 3925 were returning visits. Between new and returning visits, the latter were characterized by more actions and more time spent on the website. Thematic pages were clicked more often during new visits and person pages were more frequented during returning visits. In 2018-19, video/audio clip titles related to topics around uncertainties and/or decision making were most often clicked, whereas the least clicked clips dealt with topics like illness management, problem-solving, giving advice to others and emotionally difficult topics such as suffering, death and burden for the family.

CONCLUSION

A website with balanced, scientifically collected and analyzed patient experiences attracts a sufficient number of users and is used for further explorations.

PRACTICE IMPLICATIONS

Using multiple formats, broad topics and diverse personal experiences being accessible through themes or persons is necessary when a scientifically based website on patients' experiences is designed.

摘要

目的

评估krankheitserfahrungen.de网站的实时使用情况，该网站提供了对患有各种慢性病患者的科学收集和分析的经验。

方法

对2016年www.krankheitserfahrungen.de网站的使用情况进行网络分析。对2018 - 19年打开次数最多和最少的150个视频/音频剪辑标题进行定性内容分析。

结果

2016年，krankheitserfahrungen.de网站有19703次独立访问，其中3925次是回访。在新访问和回访之间，回访的特点是有更多的操作以及在网站上花费的时间更多。主题页面在新访问期间被点击的频率更高，而人物页面在回访期间访问更频繁。在2018 - 19年，与不确定性和/或决策相关主题的视频/音频剪辑标题被点击的次数最多，而点击次数最少的剪辑涉及疾病管理、解决问题、给他人建议以及诸如痛苦、死亡和家庭负担等情感上困难的主题。