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| Content Provider | ACM Digital Library |
|---|---|
| Author | Choi, Sung W. Buyuktur, Ayse G. Jones, Jasmine Hanauer, David A. Ackerman, Mark S. Kaziunas, Elizabeth |
| 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.'. |
| Starting Page | 1763 |
| Ending Page | 1774 |
| Page Count | 12 |
| File Format | |
| ISBN | 9781450329224 |
| DOI | 10.1145/2675133.2675276 |
| Language | English |
| Publisher | Association for Computing Machinery (ACM) |
| Publisher Date | 2015-02-28 |
| Publisher Place | New York |
| Access Restriction | Subscribed |
| Subject Keyword | Medication informatics Cscw Caregiver Health and wellness Reflection Caregiving Healthcare technology Pediatric Social worlds Health informatics Health information |
| Content Type | Text |
| Resource Type | Article |
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