Listening To Bodies And Watching Machines: Developing Health Information Skills, Tools And Services For People Living With Chronic Kidney Disease

Australian Library & Information Assoc Ltd
Publication Type:
Journal Article
Australian Academic and Research Libraries, 2013, 44 (1), pp. 14 - 28
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When patients need information, they may visit a doctor, ask a nurse, or look online. But these are not the only sources of information used by patients. This paper examines discussion threads in online renal support groups to describe how people living with kidney failure conceive of help, information and support. I use Actor Network Theory to locate unexpected sources of information and authority such as information obtained from lived experiences, from bodies or from the machinery used to maintain health. By virtue of being embedded in networks of interrelating elements, the patient emerged as a potential information locus: potentially able to confirm information such as medical measurements, make measurements themselves, generate information related to their own sensations, and summarise information about the trajectory of their illness. Implications for practice include an expanded conception of health information literacy for patients, and expanded possibilities for health information service provision
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