Maude Frances

Postgraduate Research

Graduation Year: 2014

Research Areas: Viral Hepatitis, Injecting Drug Use & Harm Reduction, Living with and Treatment of Serious & Chronic Conditions

Research Topic: Consuming information about hepatitis C: Reflexivity, sociality and practice
Supervisors: Prof Carla Treloar, Dr Joanne Bryant

Health consumers increasingly turn to the internet to understand diagnoses and symptoms of disease, to investigate treatment options, and to communicate with others about experiences of illness. This transdisciplinary Australian study explores internet practices of people with hepatitis C, a stigmatised blood borne virus. Data were collected during 2003–2005 from an online survey and face-to-face interviews. Quantitative data were analysed using descriptive frequency statistics and Multiple Correspondence Analysis (MCA), and thematic analysis was applied to qualitative data. A Bourdieuian theoretical framework positions information practices in relation to dispositions of people with hepatitis C, and the sociotechnical and cultural contexts of health-related internet use, which included responsibilities of citizenship in a neoliberal healthcare system. Online resources were used to make sense of uncertainties about the disease, to clarify information from health practitioners, to understand options for treatment and care, and to support decisions about treatment uptake. The internet’s capacity for anonymous communication was leveraged to reduce the impact of hepatitis C-related stigma and discrimination in both online and offline settings. Although participants’ constructions of meaning and decisions about managing their illness were supported by their internet-derived understandings of hepatitis C, perceived attitudes of medical practitioners to internet information, as well as structural features of medical services, often hindered incorporation of internet resources in clinical discussions. Community-based organisations were particularly important for mediating information from medical and consumer-based sources and for providing online spaces where people collectively developed understandings of hepatitis C. The MCA revealed that internet activities varied according to the frequency of internet use for hepatitis C purposes, and that online and offline connections with peers, experience with internet technologies, gender, and the amount of information received at diagnosis shaped participants’ levels of engagement with online content and the strategies they adopted to evaluate information. Study conclusions include that while a reflexive habitus enabled people to critically engage with online resources, the benefits they derive from hepatitis C-related internet use could increase if there were more opportunities to incorporate their understandings of illness in clinical encounters.

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