Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers

Elizabeth Kaziunas, Ayse G. Buyuktur, Jasmine Jones, Sung W. Choi, David A. Hanauer, Mark S. Ackerman

Research output: Chapter in Book/Report/Conference proceedingConference contribution

58 Scopus citations

Abstract

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 languageEnglish (US)
Title of host publicationCSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing
PublisherAssociation for Computing Machinery, Inc
Pages1763-1774
Number of pages12
ISBN (Electronic)9781450329224
DOIs
StatePublished - Feb 28 2015
Event18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015 - BC, Canada
Duration: Mar 14 2015Mar 18 2015

Publication series

NameCSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing

Other

Other18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015
Country/TerritoryCanada
CityBC
Period3/14/153/18/15

Bibliographical note

Funding Information:
This work was funded in part by a fellowship by the National Science Foundation IGERT 0903629 (OpenData)

Publisher Copyright:
© 2015 ACM.

Keywords

  • CSCW
  • caregiver
  • caregiving
  • health and wellness
  • health informatics
  • health information
  • healthcare technology
  • medical informatics
  • pediatric
  • reflection
  • social worlds.

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