Centre for HCI Design, School of Mathematics, Computer Science, and Engineering, City, University of London, Northampton Square, London EC1V 0HB, UK.
Centre for HCI Design, School of Mathematics, Computer Science, and Engineering, City, University of London, Northampton Square, London EC1V 0HB, UK.
Int J Med Inform. 2017 Dec;108:64-70. doi: 10.1016/j.ijmedinf.2017.10.001. Epub 2017 Oct 7.
Effective self-management of the human immunodeficiency virus/acquired immune deficiency virus (HIV/AIDS) requires constant vigilance over personal health information. Little is known about the contribution of online communities to this endeavour. This paper reports a study to investigate how people living with HIV/AIDS use an online community to try to understand their personal health information by analysing how health information is shared and asked about, and how the community responds to questions.
A webscraper was used to gather all messages in the 200 most recently active threads in an online forum for people living with HIV/AIDS, resulting in a total of 2455 messages. These were filtered for all instances of individuals sharing their personal health information and asking the community for help in understanding it. Thematic analysis was used to determine the types of questions asked, the personal health information shared and the information that was asked about. Messages from the community aiming to address the questions were analysed using a framework of social support.
Approximately 10% of the 2455 messages were found to be involved in this activity: 60 messages contained questions, and 192 messages responded to address the questions. The most frequent type of question was about causation. While users shared a wide variety of information about their health, they most commonly asked about reactions, lab results, and other conditions. Nearly all the messages from the community that aimed to answer the questions provided informational support, which is a type of social support, and the community shared their own personal experiences in these responses.
This study demonstrates that online forums are used by people living with HIV to ask specific questions as a means of understanding their personal health information. The analysis provides a better understanding of the questions that people living with HIV have about their health information, and the types of support they receive from the community. The results provide a basis for further research into community support and self-management and will enable improved tools to support self-management.
有效的人类免疫缺陷病毒/获得性免疫缺陷综合征（HIV/AIDS）自我管理需要对个人健康信息保持持续警惕。对于在线社区在这方面的作用，人们知之甚少。本文报告了一项研究，通过分析健康信息是如何被分享和询问的，以及社区如何回应这些问题，来调查 HIV/AIDS 患者如何利用在线社区来尝试理解他们的个人健康信息。
使用网络爬虫收集了 HIV/AIDS 患者在线论坛中最近 200 个最活跃主题中的所有信息，共 2455 条消息。这些消息经过过滤，以筛选出个人分享个人健康信息并寻求社区帮助理解信息的所有实例。采用主题分析确定所提出的问题类型、所分享的个人健康信息以及所询问的信息。使用社会支持框架分析社区中旨在解决问题的信息。
约有 10%的 2455 条消息参与了这项活动：60 条消息包含问题，192 条消息回应以解决这些问题。最常见的问题类型是关于病因。虽然用户分享了他们健康状况的各种信息，但他们最常询问的是反应、实验室结果和其他状况。社区中几乎所有旨在回答问题的信息都提供了信息支持，这是一种社会支持，社区在这些回应中分享了自己的个人经历。
本研究表明，HIV/AIDS 患者使用在线论坛来提出具体问题，以了解他们的个人健康信息。分析结果更好地了解了 HIV/AIDS 患者对其健康信息的问题，以及他们从社区获得的支持类型。结果为进一步研究社区支持和自我管理提供了基础，并将能够为支持自我管理提供更好的工具。
