Supporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury

TitleSupporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury
Publication TypeConference Paper
Year of Publication2018
AuthorsBüyüktür, AG, Hung, P-Y, Ackerman, MS, Newman, MW
Conference NameProceedings of the ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW’18)
Keywordshealthcare; articulation work; information work; chronic illness; collaboration; patient help; patient information; caregiving; temporality; temporal misalignment; information overload; health informatics; medical informatics.

Patients are often overwhelmed in their efforts to understand their illnesses and determine what actions to take. In this paper, we want to show why care is sometimes not co-managed well between clinicians and patients, and the necessary information is often not well coordinated. Through a 2.5-year field study of an adult bone marrow transplant (BMT) clinic, we show there are different experiences of temporal ordering, or temporalities, between clinicians and patients (and their caregivers). We also show that misalignments between these temporalities can seriously affect the articulation (coordination) and information work that must go on for people to co-manage their conditions with clinicians. As one example, information flows can be misaligned, as a result of differing temporalities, causing sometimes an overwhelming amount of information to be presented and sometimes a lack of properly contextualized information. We also argue that these misalignments in temporalities, important in medicine, are a general coordination problem. Author Keywords