Hargreaves Sarah, Bath Peter A, Duffin Suzanne, Ellis Julie
Health Informatics Research Group, Information School, University of Sheffield, Sheffield, United Kingdom.
Department of Sociological Studies, University of Sheffield, Sheffield, United Kingdom.
J Med Internet Res. 2018 Jun 14;20(6):e222. doi: 10.2196/jmir.9709.
The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums.
The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis.
This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke's six-phase approach and combined to triangulate the analysis.
We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished.
Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support.
越来越多在线健康论坛的出现改变了人们应对健康问题的体验，因为现在更多人能够相互联系和提供支持。同理心是 peer-to-peer 支持的一个重要组成部分，尽管对于同理心在在线健康论坛中如何发展和发挥作用知之甚少。
本文旨在探讨同理心在两个针对不同健康状况的在线健康论坛（乳腺癌和运动神经元病，也称为肌萎缩侧索硬化症）中是如何发展和发挥作用的。
这项定性研究分析了来自两个来源的数据：对论坛用户的访谈和下载的论坛帖子。数据收集自英国慈善机构提供的两个在线健康论坛：乳腺癌关爱组织和运动神经元病协会。我们分析了乳腺癌论坛的84个主题帖和运动神经元病论坛的52个主题帖。主题帖是经过有目的抽样选取的，以反映不同的经历（如疾病阶段、话题和用户特征）。对14名乳腺癌关爱论坛用户和5名运动神经元病论坛用户进行了半结构化访谈。所有数据集都采用布劳恩和克拉克的六阶段方法进行了主题分析，并结合起来进行三角互证分析。
我们发现同理心通过共同经历和联系得以发展和发挥作用。同理心的发展始于论坛之外的疾病发作和诊断经历，产生了情感和信息需求。用户来到论坛，发现他们的经历和需求得到了他人的分享和理解，从而奠定了论坛的同理心基调与支持性氛围。该论坛被视为一个既有用又有意义的空间，在这个充满支持和温暖的氛围中，他们可以分享经历、信息和情感，并获得同理心支持。同理心通过在这个人性化空间中基于相似性、关系和共同感受形成的联系发挥作用。用户感到有必要与他们认为和自己相似的用户建立联系（例如，患有相同特定疾病的人）。他们与其他用户建立了关系。他们基于对健康不佳的情感理解建立联系。在这些联系中, 同理心交流蓬勃发展。
同理心在共同经历和联系中发展和发挥作用，这得益于论坛提供的结构可能性，使用户有机会和途径在公共、受限和更私密的空间内，以及在群体中并通过一对一交流进行互动。两个论坛的氛围、感觉以及感知到的受众都是同理心的重要促进因素，用户们都感受到了一个由关爱和支持他人的人组成的虚拟社区。我们的研究结果对主办健康论坛的组织以及为患者指明其他支持来源的健康专业人员具有参考价值。
