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.'.
|Original language||English (US)|
|Title of host publication||CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing|
|Publisher||Association for Computing Machinery, Inc|
|Number of pages||12|
|State||Published - Feb 28 2015|
|Event||18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015 - BC, Canada|
Duration: Mar 14 2015 → Mar 18 2015
|Name||CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing|
|Other||18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015|
|Period||3/14/15 → 3/18/15|
Bibliographical noteFunding Information:
This work was funded in part by a fellowship by the National Science Foundation IGERT 0903629 (OpenData)
© 2015 ACM.
- health and wellness
- health informatics
- health information
- healthcare technology
- medical informatics
- social worlds.