Chronic illness and online social networking: expectations, assumptions, and everyday realities

尽管互联网接入在不同人口群体之间仍然存在差异，但个人和组织使用Facebook、MySpace或Twitter等社交网站的大幅增长，最近重新启动了关于互联网在医疗保健中的作用的政策和学术辩论。然而，尽管关于在线网络和健康的市场营销、临床和从业者文献激增，但社会科学才刚刚开始解决这些问题。考虑到社交网络在健康和福祉方面的重要性，目前在线社交网络的流行提供了一个及时的机会，让我们更多地了解社交网络在与长期疾病相关的自我护理中所扮演的角色。这个项目聚焦于糖尿病作为最紧迫的医疗保健优先事项之一，以及Facebook作为目前最受欢迎的社交网站，将考察围绕社交网站在慢性病管理中使用的政治和职业期望，并将它们与在线体验的实际模式进行比较。利用我们之前研究公众对健康风险的认知和使用新的互动媒体的专业知识，我们的目标是提供对塑造与社交网站和糖尿病相关的知识、态度和做法的背景因素的访问，并准确定位可能导致在政策和实践中设想解决方案的差距的潜在“理解差距”。我们采用跨学科的方法，结合语言学和社会学框架，询问在线网络对糖尿病患者的作用和意义。Facebook网站允许其用户创建文本和可视内容、连接、组织和个人页面以及组，并以此方式促进不同类型的网络的创建和维护(例如，亲戚、合作伙伴、朋友以及更广泛的圈子之间)。因此，我们对糖尿病患者使用Facebook的情景研究将帮助我们理解这些不同的网络以及互联网在塑造和支持正规医疗机构以外的自我护理实践方面所扮演的角色。糖尿病教育部门和更广泛的医疗保健部门的从业者将能够深入了解糖尿病患者如何理解和使用各种社交和内容-创建Facebook的日常功能，他们如何评估他们的体验，以及它对他们的生活和应对方式有什么影响。结果将为制定政策和实践举措提供信息，旨在为Web2.0时代的长期状况提供支持。

Although differences in Internet access still exist among demographic groups, the substantial growth in the use of social networking sites, such as Facebook, MySpace or Twitter, by individuals and organisations has recently revitalised policy and academic debates on the role of the Internet in health care. However, while marketing, clinical and practitioner literature on online networking and health is proliferating, social science has only just begun to address these issues. Given the recognised importance of social networks in health and wellbeing, the current rise in popularity of online networking affords a timely opportunity to learn more about their role in self-care associated with long-term conditions. Focusing on diabetes as one of the most pressing healthcare priorities, and Facebook as currently the most popular social networking site, this project will examine political and professional expectations surrounding the use of social networking sites in chronic illness management, and compare them with actual patterns of online experience. Bringing expertise from our previous research on public perceptions of health risks, and the use of new interactive media, we aim to provide access to the contextual factors that shape knowledge, attitudes and practices in relation to social networking sites and diabetes, and pinpoint potential 'gaps in understanding' which may lead to gaps in envisioning solutions in policy and practice.We adopt an interdisciplinary approach that combines linguistic and sociological frameworks, asking what online networking does and means for people with diabetes. The Facebook site allows its users to create textual and visual content, connections, organisational and individual pages, and groups, and in this way facilitates creation and maintenance of different network types (e.g. between relatives, partners, friends as well as wider circles). Our contextual study of Facebook use by people with diabetes will therefore help us understand the role of these different networks, and of the Internet, in shaping and supporting self-care practices outside formal healthcare organizations.Practitioners in both the diabetes education sector and broader health care sectors will be able to gain insights into how people with diabetes understand and use various networking and content-creating Facebook features in the everyday, how they evaluate their experiences, and what bearing it has on their lives and coping. The results will inform development of policy and practice initiatives aimed at provision of support for long-term conditions in the Web 2.0 age.