The Chronic Illness and Online Networking project is comprised of four workpackages. Details of publications and talks arising from these can be found on the publications page.
Work Package 1: Policy and Professional expectations of social networking sites (SNSs) and health
This work package seeks to identify what professional expectations and assumptions have accompanied the introduction and use of SNSs in health care. This investigation has been conducted using a comprehensive dataset comprised of: (a) research articles, reviews and editorials relating to the role and use of social media in relation to health in clinical and practitioner journals; (b) discussions in NHS and Department of Health publications related to social media; (c) documents and consultation submissions of other stakeholders, such as diabetes-related patient or research charities (for example, Diabetes UK).
Additionally, we have sought the views of key professional actors who have participated in these events and discussions, such as senior members of NHS England and the Royal College of General Practitioners, healthcare policy experts, and professionals working in commerical and third sector organisations that deliver informational and therapeutic services through social media.
Work Package 2: Diabetes organisations on Facebook
This Work Package uses a Critical Discourse Analayis framework to examine the Facebook pages of diabetes-related commercial, non-profit and government organisations, focusing on the following questions:
- What lay and professional identities, responsibilities and practices are represented in the Facebook pages and profiles of organisations?
- What are the intended functions of these pages and profiles?
- How do the interactional styles constructed on each page relate to the organisations’ uses of Facebook’s architectural affordances?
Focusing particularly on the most popular ('Liked') pages, we examine whether private, government and voluntary healthcare bodies might foreground or background particular discourses around medicalised and/or experiential understandings of ill health through their Facebook content. The focus on Facebook pages as cultural artefacts will draw attention to how these organisations utilise Facebook's communicative affordances to implement their organisational agendas through the publication of diabetes-related content online.
Work Package 3: Actual uses, users and reported uses of SNS
While there is a growing volume of clinical research into the interfact of healthcare and social media, current literature pays little attention to how online networking is made meaningful in the everyday lives of people with long-term conditions such as diabetes. As such, this work package adopts the framework of online ethnography combining analysis of online content over the period of 4 months with in-depth interviews to explore actual uses of Facebook by people with diabetes. This Work Package addresses two sets of questions:
- What do people with diabetes publish on their Facebook profiles and in interactions in Facebook groups, and what does this tell us about their identities as well as specific social support and informational needs? What visual and verbal resources do they recurrently use in these spaces? How such uses are being shaped by the site features and interface?
- What does their use of Facebook, both via computers and smartphones mean to adults with diabetes and how does it relate to their everyday practices and self-management behaviours? What discursive resources are used to negotiate an understanding of the relationship between coping strategies and social media use? What is the significance of various activities such as commenting, ‘friending’, following or creating
Work Package 4: Synthesis and conclusions
Findings across the first three WPs will be brought together and synthesised in order to (1) provide a comprehensive picture of the professional, policy and third sector organisations expectations concerning the use of SNSs by people with chronic illness (2) examine why and how organisational actors and Facebook users with diabetes actually use these sites 3) explore any gaps between this and the imagined users and uses, and examine resulting implications for policy and practice. We will organise a half-day stakeholders’ workshop to discuss these findings.