Vital Signs: Paper Session 6b
Thursday 11 September, 11.30-1pm, Room G33
6b. Real lives online and off
‘The ‘virtual’ reality of life with a long-term condition: Exploring online discussion boards as a reflection of self-management policy in practice’ – Caroline Sanders, Anne Kennedy, Caroline Gardner and Anne Rogers (NPCRDC University of Manchester)
We discuss the degree to which online discussion boards can be viewed as a reflection of 'real life' for people with long term conditions and what online interactions indicate about the potential benefits and limitations of self-management policy in practice. The Expert Patients Programme (EPP) is a self-management training programme for people with long-term conditions (LTCs) and implemented as part of a policy drive to enhance self-management capacity. It was initially developed for 'face-to-face' delivery and adapted for delivery online. This paper reports a qualitative evaluation of the online version of EPP that allows open discussions in addition to structured discussions around all aspects of the course. Data comprised free text postings to online discussion boards for 218 online EPP participants divided into 11 groups. Data was entered into Access databases and ATLAS.ti enabling exploration of common themes and online interaction between participants. Entries to the board indicated that the 'reality of life' was in contradistinction to some of the assumptions inherent in the course. Whilst close personal relationships between family members are often assumed to be supportive for people living with LTCs, online discussions provide insights into some difficulties and tensions in these 'real life' relationships when managing illness alongside other aspects of daily life. Analysis also indicates valuable support can be gained from 'virtual' relationships formed online that might fill needs that had been largely unmet in 'real life'. However, participants in this study were predominantly white and highly educated women highlighting the limited coverage of the course.
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‘Testing powers of engagement: Eco-appliances, home experiments and object-centred research’ – Noortje Marres (Goldsmiths College, University of London)
This paper explores a particular approach to studying the affective capacities of green domestic appliances, their ability to engage people, and also, to keep them disengaged. It suggests that, in order to account for these capacities, it could help to study a particular form of “public demonstration”: the reporting of domestic experiments with eco-technologies, as for instance in accounts of “living with smart energy meters,” on the Web and in the press. Recent studies of public demonstrations have focused on the articulation of objects of concern in in situ locations (roads, institutional settings). A study of domestic demonstrations may complicate and enrich such “object-centred” accounts of publicity practices, in two ways. Firstly, I would like to consider web logs, which report on green home experiments, as an information format that allows the extension of the modern formula of “being intimate in public” to “being with things.” Thus, using basic web-based tools of textual and visual analysis, in combination with the study of domestic settings, I would like to explore how “engagement” may be co-produced by objects in the home, experimental protocols and publicity formats. Such an exercise might also shed some light on the features of one particular “object” articulated in these demonstrations, CO2. Thus, I would like to end by asking how green home experiments deploy the domestic setting to establish the reality of CO2 above and beyond that of a “nominal” unit of accounting and trade.
‘Risk, trust and lesbian conception: Reflections on recruiting ‘face-to-face’ interview research participants online’ – Petra Nordqvist (University of York)
Ethnography has been described as involving the negotiation of access to social organisations or groups located in time and place, raising particular issues of gaining access, negotiating with gatekeepers and sampling processes (Bryman 2004, Burgess 1984). Online recruitment for research participation ‘in real life’, raises issues of authenticity and therefore has methodological implications for risk and trust. While Internet research has been explored in relation to conducting online surveys and collecting online data (eg. Dicks et al. 2005, Bert and Krueger 2004, Whitehead 2007), there appears to be limited existing research into using online communities for recruiting participants for face-to-face interviews.
For the community of lesbian couples who conceive together using ‘self arranged’ or clinical donor conception, no social space, defined in time and place, exists. The research process and recruitment are dependent on, and reflect, the very conditions and material practices of 'hidden' lesbian conception. This paper reflects on a research process of recruiting lesbian couples for participation in narrative qualitative interviews about their experiences of donor conception, having used the Internet and existing online communities as gateways of recruitment. It explores how far ethical practices and methodological assumptions of social research need to be revised for research and recruitment through online communities for ‘real life’ research participation. The paper suggests that this form of online recruitment raises particular, and previously neglected, issues of risk, trust and authenticity with regards to access, sampling process and researcher’s safety. It also suggests that online recruitment and the risks associated with it, can be understood as direct consequences of the cultural and social marginalisation of lesbian conception.
