Centering Diversity: An ethnographic dessection of hemophilia care

Abstract

In this paper, I describe my entry as a 'change agent' in the dynamic site of a hemophilia care center (HCC) in a Dutch university hospital. I discuss the importance of using participant observation to create insight into the interpretative flexibility of the site, by showing the presence of diverse interpretations by various actors on different moments of "what the HCC is" and what it means to 'make it work'. This reality contributed to a variety of roles that were ascribed to the researcher - a process which I took as a valuable source of information on the site. I conclude that, for interventionist research in a complex setting, it is of utmost importance to use a methodology that sensitizes the researcher for the different and changing views that exist on that setting. This allows one to become aware of the various roles that one is asked to play, and the solutions one is expected to come up with. With this sensitivity, a researcher can choose to intervene by giving voice to a certain interpretation, or at least avoid suggesting solutions that are bound to fail because they are contradictory to interpretations of strong actors on the nature ofthe setting.