Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers
|Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers
|Year of Publication
|Kaziunas, E, Büyüktür, AG, Jones, J, Choi, SW, Hanauer, DA, Ackerman, MS
|Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15)
|caregiver, caregiving, emotional work, health and wellness, health informatics, health information, healthcare technology, interactional work, medication informatics, patient information, patients, pediatric, reflection, reflecton work, social worlds, work
The impact of health information on caregivers is of increasing interest to HCI/CSCW in designing systems to support the social and emotional dimensions of managing health. Drawing on an interview study, as well as corroborating data including a multi-year ethnography, we detail the practices of caregivers (particularly parents) in a bone marrow transplant (BMT) center. We examine the interconnections between information and emotion work performed by caregivers through a liminal lens, highlighting the BMT experience as a time of transition and reflection in which caregivers must quickly adapt to the new social world of the hospital and learn to manage a wide range of patient needs. The transition from parent to 'caregiver' is challenging, placing additional emotional burdens on the intensive information work for managing BMT. As a time of reflection, the BMT experience also provides an occasion for generative thinking and alternative approaches to health management. Our study findings call for health systems that reflect a design paradigm focused on 'transforming lives' rather than 'transferring information.'