多发性硬化症患者在网上寻找的基于网络的健康信息:多发性硬化症在线课程的定性调查
William Bevens1,2, Rebekah Davenport3, Sandra Neate1
1Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Carlton, Australia.
Journal of medical Internet research
|February 9, 2024
概括
患有多发性硬化症 (MS) 的人在网上寻找自我管理的信息,其动机是他们的诊断. 值得信赖的来源是首选的,但对网络内容的批判性评估对于有效的MS自我护理至关重要.
科学领域:
- 医疗信息学 医疗信息学
- 数字健康数字健康
- 多发性硬化症管理管理
背景情况:
- 数字技术提高了多发性硬化症 (MS) 患者的远程医疗和监测的机会.
- 互联网是MS信息的关键资源,特别是在COVID-19后,对自我管理内容的需求越来越大.
- 在MS中搜索基于Web的健康信息被低估了,需要研究用户参与度和可访问性.
研究的目的:
- 探索MS患者在网上搜索健康信息时的动机,行为和期望.
- 了解MS患者如何利用在线资源来管理他们的病情.
- 在基于网络的MS教育课程中确定内容和格式的偏好.
主要方法:
- 定性研究涉及对38名MS患者进行半结构面试,这些患者在线课程完成后接受了MS.
- 参与者包括那些完成了干预课程 (n=22) 和标准护理 (n=16) 的人.
- 采用了诱导性主题分析,两位作者独立编码了采访,以建立主题共识.
主要成果:
- 出现了两个主要主题:学习动机和在线访问MS信息.
- 多发性硬化症的诊断通常会触发基于网络的信息,寻求与生活方式相关的自我管理和控制.
- 虽然社交媒体和MS网站提供支持,但批判性评估至关重要;可识别的机构受到信誉的青.
结论:
- 这项研究提供了新的洞察力,了解在网上寻找MS患者的健康信息背后的动机.
- 探索内容,格式和用户在线MS信息的用户体验的偏好.
- 这些发现可以指导MS患者,教育工作者,研究人员和临床医生优化基于网络的健康信息参与.
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