Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers
|Title||Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers|
|Publication Type||Conference Paper|
|Year of Publication||2015|
|Authors||Kaziunas, E, Büyüktür, AG, Jones, J, Choi, SW, Hanauer, DA, Ackerman, MS|
|Conference Name||Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15)|
|Keywords||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.'