This chapter examines waiting in liver transplant medicine, a field characterized by immediacy, urgency and delay. By taking a close look at waiting lists, allocating algorithms and mobile phones, it engages with the technological and material features that generate, shape and mediate waiting and hope when livers fail. Based on ethnographic research in Germany, I analyse the powerful workings of ephemeral waiting lists and discuss how these lists in flux put the lives of those looking for an organ on hold. By doing so, I contribute to understandings of how immobilities are produced and their affective dimensions. I approach waiting lists for liver transplants as part of transplant medicine’s invisible digital infrastructure and contend that the mobile phone becomes a critical feature therein, significantly affecting those waiting for a transplant. Firstly, I discuss the wait list as bureaucratic technology, marker of eligibility and symbol for patients’ chances to receive live-saving treatment. I then show, secondly, how complex algorithms create these ephemeral lists. Thirdly, I turn in more detail to the experiences of a patient listed for a transplant. I demonstrate how, in this time of waiting-in-uncertainty, the mobile phone becomes an extension and tangible manifestation of this ephemeral list as well as a reminder of one’s dependency on medical care. I show how the mobile phone transforms from a mere communication tool to an ambivalent marker of people’s simultaneous mobility and immobility during their wait.
BackgroundThe pandemic has made public health communication even more daunting because acceptance and implementation of official guidelines and recommendations hinge on this. The situation becomes even more precarious when children are involved. Our child-specific COVID-19 online forward triage tool (OFTT) revealed some of the public health communication challenges. We aimed to explore attitudes, experiences, and challenges faced by OFTT users and their families, in regard to public health recommendations.MethodsWe selected key informants (n = 20) from a population of parents, teachers, guardians, as well as doctors who had used the child-specific COVID-19 OFTT and had consented to a further study. Videos rather than face-face interviews were held. Convenience and quota sampling were performed to include a variety of key informants. Interviews were recorded, transcribed verbatim, and analyzed for themes.ResultsSeveral themes emerged, namely; (1) definition and expectations of high-risk persons, (2) quarantine instructions and challenges, (3) blurred division of responsibility between authorities and parents, (4) a novel condition and the evolution of knowledge, (5) definition and implications of socioeconomic status, (6) new normal and societal divisions, and (7) the interconnectedness of these factors-systems thinking.ConclusionAs the virus is evolving and circumstances are changing rapidly, the communication of public health to the different interest groups becomes, both an art and science, even more so when using a new technological communication channel: an OFTT. A myriad of interconnected factors seems to influence attitudes toward public health recommendations, which calls for systems thinking in public health communication.
This article sheds light on the experiences of people waiting for a liver transplant. I argue that waiting lists serve as a technological tool to deal with the uncertainties inherent in medicine, but like Hercules fi ghting Hydra, one tamed uncertainty is merely replaced by two new ones. Drawing on ethnographic material from Germany, I argue that these lists retain those waiting in a temporal limbo of uncertain duration and outcome, making them spatially, temporally and existentially immobile.
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