Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease

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CSCW has previously investigated the “information work” that patients do in relation to their health, illnesses, and treatments. Our study contributes to this ongoing stream of work by investigating the information work that chronically ill patients do in relation to their physical bodily experiences. We use an interpretivist approach and qualitative methods (semi-structured interviews and observations) to examine how patients in a midwestern U.S. city carry out information work related to their bodily experiences of Chronic Kidney Disease (CKD). Our findings highlight four themes related to such work: bodily experiences of CKD; making meaning of bodily experiences through experiential learning; communicating bodily experiences; and attuning daily life around bodily experiences. In so doing, we show how patients continuously engage in information work in relation to their bodily experiences. For example, we found participants experienced physical sensations such as pain, cramping, and extreme fatigue, which elicited complex labor, yet most patients received little education from health care professionals about what bodily sensations they might have and what these physical experiences might mean. While patients and clinicians worked collaboratively to adjust treatment based on bodily information, such collaborative adjustment often did not occur until patients learned to interpret and communicate bodily experiences through a difficult and physically painful “trial and error” learning process. Our empirical insights extend on the literature of information work that chronically ill patients do and inform design of information technologies and care processes for patients with chronic disease.