Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Carlton, Australia.
Institute for Clinical and Translational Science, University of California, Irvine, Irvine, CA, United States.
J Med Internet Res. 2024 Feb 9;26:e53372. doi: 10.2196/53372.
Digital technologies have afforded people living with multiple sclerosis (MS) access to telehealth consultations, diagnostic tools, and monitoring. Although health care professionals remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Notably, people living with MS are increasingly seeking educational content for a range of topics related to the self-management of MS; however, web-based information seeking remains largely underevaluated. To address this gap and ensure that web-based health-related information is accessible and engaging, this study used qualitative methods to analyze the reflections from participants of web-based educational programs for people living with MS.
This study aimed to explore the motivations, behaviors, and expectations of web-based health information seeking for people living with MS.
We conducted semistructured interviews for 38 people living with MS 1 month after they completed the novel MS Online Course, which provided information on modifiable lifestyle-related risk factors for people living with MS. Of the 38 participants, 22 (58%) completed the intervention course and 16 (42%) completed the standard care course. Inductive thematic analysis was used within a qualitative paradigm, and 2 authors coded each interview separately and arrived at themes with consensus.
We identified 2 themes: motivation to learn and MS information on the web. The diagnosis of MS was described as a pivotal moment for precipitating web-based information seeking. People living with MS sought lifestyle-related information to facilitate self-management and increase control of their MS. Although social media sites and MS websites were considered useful for providing both support and information, discretion was needed to critically appraise information. Recognizable institutions were frequently accessed because of their trustworthiness.
This study provided novel insights into the motivations of people living with MS for seeking web-based health information. Furthermore, their preferences for the content and format of the web-based information accessed and their experiences and reactions to this information were explored. These findings may guide educators, researchers, and clinicians involved in MS care to optimize the engagement and processing of web-based health information seeking by people living with MS.
数字技术使多发性硬化症（MS）患者能够获得远程医疗咨询、诊断工具和监测服务。尽管医疗保健专业人员仍然是最值得信赖的信息来源，但互联网已成为提供 MS 相关信息的宝贵资源，尤其是在 COVID-19 大流行期间。值得注意的是，MS 患者越来越多地寻求与 MS 自我管理相关的各种主题的教育内容；然而，基于网络的信息搜索在很大程度上仍未得到充分评估。为了解决这一差距，并确保基于网络的健康相关信息易于访问和引人入胜，本研究采用定性方法分析了参与 MS 患者基于网络的教育计划的参与者的反馈。
本研究旨在探讨 MS 患者基于网络的健康信息搜索的动机、行为和期望。
我们对 38 名 MS 患者进行了半结构化访谈，这些患者在完成新颖的 MS 在线课程后 1 个月接受了访谈，该课程提供了与 MS 患者可改变的生活方式相关的风险因素的信息。在 38 名参与者中，22 名（58%）完成了干预课程，16 名（42%）完成了标准护理课程。在定性范式内使用了归纳主题分析，两位作者分别对每个访谈进行编码，并达成共识得出主题。
我们确定了 2 个主题：学习动机和网络上的 MS 信息。MS 的诊断被描述为引发基于网络的信息搜索的关键时刻。MS 患者寻求与生活方式相关的信息，以促进自我管理并增加对 MS 的控制。虽然社交媒体网站和 MS 网站被认为对提供支持和信息很有用，但需要谨慎地评估信息。可识别的机构因其可信度而经常被访问。
本研究深入了解了 MS 患者寻求基于网络的健康信息的动机。此外，还探讨了他们对所访问的基于网络的信息的内容和格式的偏好，以及他们对这些信息的体验和反应。这些发现可能指导参与 MS 护理的教育工作者、研究人员和临床医生优化 MS 患者基于网络的健康信息搜索的参与度和处理效果。
