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

doi:10.1145/2675133.2675276

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

Computer Science and Engineering

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

62 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 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
Pages	1763-1774
Number of pages	12
ISBN (Electronic)	9781450329224
DOIs	https://doi.org/10.1145/2675133.2675276
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

Publication series

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

Other

Other	18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015
Country/Territory	Canada
City	BC
Period	3/14/15 → 3/18/15

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.

Publisher link

10.1145/2675133.2675276

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Cite this

Kaziunas, E., Buyuktur, A. G., Jones, J., Choi, S. W., Hanauer, D. A., & Ackerman, M. S. (2015). Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers. In CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing (pp. 1763-1774). (CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing). Association for Computing Machinery, Inc. https://doi.org/10.1145/2675133.2675276

Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers. / Kaziunas, Elizabeth; Buyuktur, Ayse G.; Jones, Jasmine et al.
CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing. Association for Computing Machinery, Inc, 2015. p. 1763-1774 (CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing).

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

Kaziunas, E, Buyuktur, AG, Jones, J, Choi, SW, Hanauer, DA & Ackerman, MS 2015, Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers. in CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing. CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing, Association for Computing Machinery, Inc, pp. 1763-1774, 18th ACM International Conference on Computer-Supported Cooperative Work and Social Computing, CSCW 2015, BC, Canada, 3/14/15. https://doi.org/10.1145/2675133.2675276

Kaziunas E, Buyuktur AG, Jones J, Choi SW, Hanauer DA, Ackerman MS. Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers. In CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing. Association for Computing Machinery, Inc. 2015. p. 1763-1774. (CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing). doi: 10.1145/2675133.2675276

Kaziunas, Elizabeth ; Buyuktur, Ayse G. ; Jones, Jasmine et al. / Transition and reflection in the use of health information : The case of pediatric bone marrow transplant caregivers. CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing. Association for Computing Machinery, Inc, 2015. pp. 1763-1774 (CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing).

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

Abstract

Publication series

Other

Bibliographical note

Keywords

Publisher link

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