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

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.

Findings of this project will be of value to a variety of academic, practitioner and service user groups. With the increasing recognition of the importance of social media among policy makers and managers in the UK and Europe (see, for example, RVZ (2010)*, and the 'High Quality Care for All' review (2008), the proposed research will impact on the decision making of government, industry and the third sectors with an interest in computer mediated health communication. Specifically, this project will deliver insights regarding professional and lay user perspectives on social networking technologies in the context of chronic illness management, and offers methodologies which will be of great use in future analysis and evaluation of the burgeoning discourses around Health 2.0.

How would they benefit from the research?
Schein et al (2010) have recently expressed concern that public health agencies still lag when it comes to adopting social media platforms, pointing to the evidence that 'health information-seeking is migrating to social media sites like Facebook and YouTube, and there are an increasing number of health-related searches taking place on these platforms' (p. 13). At the same time, those UK organisations that already use social networking sites tend to view them as yet another channel through which they can deliver messages to audiences, a tendency that made Craig Lefebvre lament that social media is not just a new way to 'reach' people; rather 'the people we wish to engage with around specific issues need to be understood in the context of how they construct their social media space, not by how we construct it for ourselves' (2011). Only on the basis of a deeper understanding of social media communication about diabetes as being grounded in social, bodily, and cultural experiences of participants, can one then go on to devise diabetes education and social support activities in the online networking domain.

The project addresses these issues on several levels. In particular, the project will:

1. critically examine political and professional expectations surrounding the use of SNSs in relation to chronic illness and compare them with actual patterns of use and experience in order to pinpoint potential 'gaps in understanding' , which may lead to gaps in envisioning policy solutions.
2. empirically examine contextualised meanings of 'social support' in the online social networking environment for people with diabetes; this can inform development of diabetes support initiatives targeted to specific situational needs. We will explore how interaction in SNSs is used by people with diabetes in the everyday; how online activities that go beyond simple health information searches are integrated in their lives; and how social support is made meaningful (or not) through such practices and activities. Following Williams at el (2004) we argue that such qualitative study should be the first step towards quantitative assessment of support interventions in the SNS context.
3. establish online resources used, preferred and trusted by people with diabetes and plot the position of NHS sources in this context.
4. establish participants' preferred modes and ways of interaction which can inform patient-professional communication.

In general, the project will:
1. have a direct impact on the future health and well-being of the nation; as diabetes represents a serious clinical and financial challenge to the UK's health system it is important to understand how new technologies such as social networking tools impact society;
2. have a direct impact on understanding of social media uses and functionality in health communication; we propose a case study of diabetes as a starting point in a field that, it is hoped, will expand to include other conditions in future critical and contextual analyses of SNSs and health.