research-article

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"We are half-doctors": Family Caregivers as Boundary Actors in Chronic Disease Management

Authors:

Karthik S. Bhat,

Amanda K. Hall,

Neha KumarAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 7, Issue CSCW1

Article No.: 111, Pages 1 - 29

https://doi.org/10.1145/3579545

Published: 16 April 2023 Publication History

Abstract

Computer-Supported Cooperative Work (CSCW) and Human--Computer Interaction (HCI) research is increasingly investigating the roles of caregivers as ancillary stakeholders in patient-centered care. Our research extends this body of work to identify caregivers as key decision-makers and boundary actors in mobilizing and managing care. We draw on qualitative data collected via 20 semi-structured interviews to examine caregiving responsibilities in physical and remote care interactions within households in urban India. Our findings demonstrate the crucial intermediating roles family caregivers take on while situated along the boundaries separating healthcare professionals, patients and other household members, and online/offline communities. We propose design recommendations for supporting caregivers in intermediating patient-centered care, such as through training content and expert feedback mechanisms for remote care, collaborative tracking mechanisms integrating patient- and caregiver-generated health data, and caregiving-centered online health communities. We conclude by arguing for recognizing caregivers as critical stakeholders in patient-centered care who might constitute technologically assisted pathways to care.

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Cited By

Gupta MKarnatak NJain M(2024)Understanding the Technology-Mediated Home Phlebotomy Ecosystem in IndiaProceedings of the ACM on Human-Computer Interaction10.1145/36374218:CSCW1(1-26)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637421
Smriti DWang LHuh-Yoo J(2024)Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With DementiaProceedings of the ACM on Human-Computer Interaction10.1145/36373258:CSCW1(1-34)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637325
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

"We are half-doctors": Family Caregivers as Boundary Actors in Chronic Disease Management
1. 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 7, Issue CSCW1

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April 2023

3836 pages

EISSN:2573-0142

DOI:10.1145/3593053

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Jeff Nichols
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Published: 16 April 2023

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Cited By

Gupta MKarnatak NJain M(2024)Understanding the Technology-Mediated Home Phlebotomy Ecosystem in IndiaProceedings of the ACM on Human-Computer Interaction10.1145/36374218:CSCW1(1-26)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637421
Smriti DWang LHuh-Yoo J(2024)Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With DementiaProceedings of the ACM on Human-Computer Interaction10.1145/36373258:CSCW1(1-34)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637325
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
Lu XPowell JAgapie EChen YEpstein D(2024)Unpacking the Lived Experience of Collaborative Pregnancy TrackingProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642652(1-17)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642652
Tripathi GSabherwal MSingh P(2024)“I know I have this till my Last Breath”: Unmasking the Gaps in Chronic Obstructive Pulmonary Disease (COPD) Care in IndiaProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642504(1-16)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642504
Foong PUreyang NFoo CAntonyrex SKoh G(2024)Designing for Caregiver-facing Values Elicitation ToolsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642214(1-20)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642214
Calambur VJun DSchiaffino MZhang ZHuh-Yoo J(2024)A case for "little English" in Nurse Notes from the Telehealth Intervention Program for Seniors: Implications for Future Design and ResearchProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3641961(1-16)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3641961
Bhat KKumar NShamanna KKwatra NJain M(2023)Towards Intermediated Workflows for Hybrid TelemedicineProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580653(1-17)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580653
Berger HWittman JSmith KHorick NNorris KYoung AMagana Gomez JOcampo KSkotko B(2023)Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndromeAmerican Journal of Medical Genetics Part C: Seminars in Medical Genetics10.1002/ajmg.c.32074196:1Online publication date: 9-Nov-2023
https://doi.org/10.1002/ajmg.c.32074

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