Name
Abstract | ||
|---|---|---|
Independence is a central concern for people in the care of many chronic conditions. It is often viewed as a goal that can be facilitated with the use of patient data. It is also viewed, especially from the medical side, as something an individual achieves. However, in the lived experience, independence is often a set of collaborative practices. In this paper, we unpack findings from an interview-based study of Spinal Cord Injury (SCI) self-care. We found that independence - both functional and in the form of effecting agency - must be co-constructed by the choices and activities of the care network, including the person with disability, caregivers, and clinicians. This collaboratively shaped independence also affects potential collection and use of data in support of self-care. We describe how collaboratively shaped independence informs requirements and constraints for the design of sensor-based networks for self-care in long-term chronic disability.
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Year | DOI | Venue |
|---|---|---|
2018 | 10.1145/3274295 | Proceedings of the ACM on Human-Computer Interaction |
Keywords | DocType | Volume |
care network,caregiver support,context-aware environments,disability,independence,medical informatics,patient support,pervasive environments,rehabilitation,self-care,self-care plan,self-care routines,self-management,self-management plan | Conference | 2 |
Issue | ISSN | Citations |
CSCW | 2573-0142 | 0 |
PageRank | References | Authors |
0.34 | 0 | 4 |
Name | Order | Citations | PageRank |
|---|---|---|---|
| Ayse Buyuktur | 1 | 86 | 6.70 |
| Pei-Yao Hung | 2 | 0 | 1.69 |
| Mark W. Newman | 3 | 1756 | 138.40 |
| Mark S. Ackerman | 4 | 0 | 1.01 |