TY - CONF T1 - Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers T2 - Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15) Y1 - 2015 A1 - Elizabeth Kaziunas A1 - Ayse G Büyüktür A1 - Jones, Jasmine A1 - Choi, Sung W A1 - David A Hanauer A1 - Mark S. Ackerman KW - caregiver KW - caregiving KW - emotional work KW - health and wellness KW - health informatics KW - health information KW - healthcare technology KW - interactional work KW - medication informatics KW - patient information KW - patients KW - pediatric KW - reflection KW - reflecton work KW - social worlds KW - work AB -

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.'

JF - Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15) PB - ACM UR - Complete ER -