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Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care

Authors:

Andrew B.L. Berry,

Prachi Bhagane,

Ayse G. Buyuktur,

Sun Young ParkAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 3, Issue CSCW

Article No.: 153, Pages 1 - 24

https://doi.org/10.1145/3359255

Published: 07 November 2019 Publication History

Abstract

In pediatric chronic care, the treatment process affects not just the child's physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child's health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child's young age. Drawing on 15 semi-structured interviews, we examined parental caregivers' perspectives on raising a child while also managing the child's health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child's health and safety and attending to the child's social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child's cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.

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Cited By

Abubakr LShrivastava TWhitman SPine KLee MFarzan RLópez CCardoso Llach DQuercia DMustafa MNiu SWong-Villacrés M(2024)Understanding Information Managers: A Thematic Analysis of Information Challenges of Disability Service ProvidersCompanion Publication of the 2024 Conference on Computer-Supported Cooperative Work and Social Computing10.1145/3678884.3681917(629-634)Online publication date: 11-Nov-2024
https://dl.acm.org/doi/10.1145/3678884.3681917
Huang JMa NRivera VSomani TLee PMcgrenere JYoon D(2024)Design Tensions in Online Freelancing Platforms: Using Speculative Participatory Design to Support Freelancers' Relationships with ClientsProceedings of the ACM on Human-Computer Interaction10.1145/36537008:CSCW1(1-28)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3653700
Hsu LChung C(2024)Dancing with the Roles: Towards Designing Technology that Supports the Multifaceted Roles of Caregivers for Older AdultsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642728(1-12)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642728
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Index Terms

Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care
1. Applied computing
  1. Life and medical sciences
    1. Health care information systems
2. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 3, Issue CSCW

November 2019

5026 pages

EISSN:2573-0142

DOI:10.1145/3371885

Editors:
Airi Lampinen
Stockholm University, Sweden
,
Darren Gergle
Northwestern University, USA
,
David A. Shamma
FXPAL, USA

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Copyright © 2019 ACM.

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Published: 07 November 2019

Published in PACMHCI Volume 3, Issue CSCW

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https://dl.acm.org/doi/10.1145/3678884.3681917
Huang JMa NRivera VSomani TLee PMcgrenere JYoon D(2024)Design Tensions in Online Freelancing Platforms: Using Speculative Participatory Design to Support Freelancers' Relationships with ClientsProceedings of the ACM on Human-Computer Interaction10.1145/36537008:CSCW1(1-28)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3653700
Hsu LChung C(2024)Dancing with the Roles: Towards Designing Technology that Supports the Multifaceted Roles of Caregivers for Older AdultsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642728(1-12)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642728
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