This presentation discusses an unusual research setting which was chosen to study the experiences of people with kidney failure.  Treatments for kidney failure are an exhausting schedule often involving pain, fear, fainting and nausea.  Patients deal with stigma associated with needle wounds or permanent tubes in the abdomen.  In addition, renal failure is often associated with serious co-morbidities.  Therefore, a sensitive approach to the research was needed, all the more so since the longitudinal research proposed requires repeated intrusions into the lives of participants.  A potentially ideal data source was found in a collection of active renal discussion boards.  Intrusion into the lives of contributors is minimised because posts are “naturally occurring data” made only when contributors choose to post.   Contributors post from a space of their choosing, for example their home computer.  Renal discussion boards emerged as a relatively unobtrusive source of rich, ongoing data. 

However, discussion boards come with their own particular ethical dilemmas.  A range of established approaches to research in online spaces will be discussed:  (1) viewing them as texts in the public domain, not requiring consent; (2) treating online content as intellectual property mandating acknowledgement of the identity of the content creator(s), and (3) the approach taken for my project, in which participants provide informed consent.  Surprisingly, each of these approaches had potential relevance for the sensitive research proposed, which will be discussed in the presentation.

The approach taken to studying interactions in the discussion groups is a form of online participant observation, in which the researcher is a known member of the forum – a relatively uncommon but tested approach to research in online spaces.  Rather than disturbing the dynamic, online ethnographers may become a familiar presence in a community.  Recommended by the moderators of the three boards I am studying, this approach also fitted with the focus of my PhD project which is to explore how people make sense of dialysis.  My husband is a renal patient who received a transplant 19 years ago.  As such, my own processes of sense making are a secondary focus of my research, and I wished to develop that theme by entering the field as a participant-contributor. 

Having been “in the field” now for six months, some emerging experiences will be described.  For example, reactions of discussion group members who exhibited a range of attitudes to the presence of the researcher on the boards.  Implications of my approach to consent will also be discussed, including reactions of contributors to written work which I have presented to them.  Meanwhile, “posts” to the boards can be very moving, often describe disturbing experiences, and from time to time, contributors die.   The effects on the researcher of “living” within the space for that period of time will be discussed, including changes in my attitude to my own health and that of my  husband, and the changing roles I appear to play on the boards, as “newbie”, colleague, advocate or spokesperson, but rarely, as “insider”.