Journal
JOURNAL OF HEALTH PSYCHOLOGY
Volume 26, Issue 6, Pages 843-859Publisher
SAGE PUBLICATIONS LTD
DOI: 10.1177/1359105319847255
Keywords
chronic illness; communication; coping; epistemology; experience; information; norms; self-presentation; social interaction; social media
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Funding
- Netherlands National Institute for Public Health and the Environment (RIVM)
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Patients' understanding of being informed varies for different diseases, depending on how they make sense of the responsibilities unique to their illness. Patients from different disease groups also have different preferences in terms of accessing and using information.
This article reports a discursive psychological study of online conversations among patients with ADHD, diabetes, or ALS on what constitutes an informed patient. Being informed means different things for different patient groups. Whether patients prioritize experiential or certified expert knowledge is not indicative of patients' preferences per se but depends on how they give meaning to the responsibilities particular to their disease. ADHD patients hold each other accountable for demonstrating the seriousness of their disease. ALS patients use expert information to orient to a norm of thinking positive. Diabetes patients challenge experts to carve out independence from the diabetes regimen.
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