research-article

Supporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury

Authors:

Ayse G. Buyuktur,

Mark W. Newman,

Mark S. AckermanAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 2, Issue CSCW

Article No.: 26, Pages 1 - 25

https://doi.org/10.1145/3274295

Published: 01 November 2018 Publication History

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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Cited By

Motahar TWiese J(2024)Investigating Technology Adoption Soon After Sustaining a Spinal Cord InjuryProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36435078:1(1-24)Online publication date: 6-Mar-2024
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Index Terms

Supporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury
1. Information systems
  1. Information systems applications
    1. Collaborative and social computing systems and tools

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 2, Issue CSCW

November 2018

4104 pages

EISSN:2573-0142

DOI:10.1145/3290265

Editors:
Karrie Karahalios
University of Illinois & Adobe
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Andrés Monroy-Hernández
Snap Inc.
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Airi Lampinen
Stockholm University
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Geraldine Fitzpatrick
Vienna University of Technology

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Published: 01 November 2018

Published in PACMHCI Volume 2, Issue CSCW

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https://dl.acm.org/doi/10.1145/3643507
Lyu YCarroll J(2024)"Because Some Sighted People, They Don't Know What the Heck You're Talking About:" A Study of Blind Tokers' Infrastructuring Work to Build IndependenceProceedings of the ACM on Human-Computer Interaction10.1145/36372978:CSCW1(1-30)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637297
Oewel BArean PAgapie E(2024)Approaches for tailoring between-session mental health therapy activitiesProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642856(1-19)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642856
Cha YGunal YWou ALee JNewman MPark S(2024)Shared Responsibility in Collaborative Tracking for Children with Type 1 Diabetes and their ParentsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642344(1-20)Online publication date: 11-May-2024
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Xiao LBandukda MAngerbauer KLin WBhatnagar TSedlmair MHolloway C(2024)A Systematic Review of Ability-diverse Collaboration through Ability-based Lens in HCIProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3641930(1-21)Online publication date: 11-May-2024
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Samuel RBagdesar MBrown TKong AShetty SGeorge AAjwani S(2024)Perceptions of patients towards oral health care in a spinal cord injury rehabilitation unit: A qualitative studyJournal of Oral Rehabilitation10.1111/joor.1376251:9(1701-1711)Online publication date: 17-Jun-2024
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