|Institution:||University of Michigan|
|Keywords:||chronic illness; temporality; information work; scaffolding; bone marrow transplant; Information and Library Science; Social Sciences|
|Full text PDF:||http://hdl.handle.net/2027.42/111491|
Time is a defining feature of chronic illness. In the context of allogeneic bone marrow transplant (BMT), which involves a long-term process that requires close monitoring of patients by BMT specialists for at least one year, this ethnographic study investigates the ways in which the illness trajectory is experienced and envisioned by the patients, caregivers, and clinicians from a temporal perspective. In addition, the study examines the effects of temporal perspectives on how the patients and caregivers gain new knowledge and skills through scaffolding ??? co-constructed information work where the learning process involves the guidance of clinicians ??? to effectively and comfortably manage care as the illness trajectory unfolds. Findings indicate that misalignments exist between the temporal perspectives of the different participants in the care process, with implications for the information work. There are four key areas in which scaffolding is essential, and in part amenable to temporal organization: disease and treatment scaffolding, institutional scaffolding, scaffolding on managing social interactions, and emotional scaffolding. A key factor has to do with the patients, caregivers, and clinicians providing, receiving, processing, and responding to information when it is practically germane, that is information-in-time.