Diabetes self-management through social media: an online longitudinal observation of Facebook profiles

Nelya Koteyko n.koteyko@qmul.ac.uk

Abstract

Background: Social networking sites (SNSs) such as Facebook enable information sharing and the co-creation of new knowledge shaped by personal experience. As such, SNSs have been heralded as a new source of ‘patient empowerment’ that fosters democratisation of healthcare and self-management expertise through social media use. Critics, on the other hand, point out that this promissory view of an active, responsible ‘e-patient’ further extends the reach and power of medicine and marketisation of healthcare. 

However, in advocating SNSs, academic and policy communities have neglected to consider how individuals already employ social media to perform and negotiate health and illness identities. In contrast, in this study we approach SNSs as an important source of data on discursive practices and situated experience in relation to diabetes self-management. Our study examines the role of social media in the lives of users with type 1 and type 2 diabetes and the written and visual resources they employ to represent their ongoing lives with a long-term condition.

Methods: Methodologically, we employ a discourse-centred online ethnography (Androutsopoulos, 2008) that combines the longitudinal observation of 19 individual profiles on Facebook with 40 semi-structured interviews with Facebook users. Our observation was particularly concerned with the dynamics of our participants’ Facebook interactions, the activities they performed on Facebook, and the linguistic and visual resources they used to achieve these. Focusing specifically on individual status updates, we inductively coded Facebook contributions to identify recurrent themes that account for the function of our participants’ status updates and the written and visual resources they used to construct them.

Results: We observed and recorded activities in the categories of individual contributions (14 posts on average for all participants), group contributions (average - 12.82 posts), and likes (22) over 4 months. Salient activities performed by status updates include constructing personal expertise in relation to diabetes management, displaying the individuals’ integration into wider diabetes-related networks, presenting mundane aspects of self-management verbally and visually, and adopting an ironic position in relation to the norms of diabetes control. Although the frequency of these different themes varied greatly between the participants, our data reveals Facebook users’ consistent sensitivity to the diverse audiences in their Facebook networks as well as the strategies they employ to perform a publically acceptable diabetic identity.

Conclusions: These activities demonstrate that online social networking is a locus of different concurrent health practices; not only empowering, but also both resistant and compliant. Articulating and performing the optimistic discourses of active self-management and lay expertise, some Facebook users with diabetes actively construct identities as active, responsible patients. Some Facebook users also seek and provide mutual support through building or maintaining social networks, which indeed points to empowering practices in these online spaces. At the same time, however, instances of humour indicate a reflexive stance where participants challenge existing social expectations of self-management and negotiate the social meanings of the physical and mental demands of diabetes. These varied practices highlight the complex existing relationships between social media and chronic illness and problematize optimistic professional rhetoric that anticipates a Health 2.0 revolution.

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