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Enabling the Participation of People with Parkinson's and their Caregivers in Co-Inquiry around Collectivist Health Technologies

Authors:

Roisin McNaney,

Harry Robinson,

Heather Robinson,

Peter WrightAuthors Info & Claims

CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems

Paper No.: 491, Pages 1 - 14

https://doi.org/10.1145/3173574.3174065

Published: 21 April 2018 Publication History

Abstract

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in 'Parkinson's Radio' -- a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research.

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Kulkarni PKirkham RWu LMcNaney R(2024)Designing for Participatory Data Governance: Insights from People with Parkinson'sProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661529(541-555)Online publication date: 1-Jul-2024
https://dl.acm.org/doi/10.1145/3643834.3661529
Hassett JSpencer LHewat SWales KWebb G(2024)Collaborative approaches with stakeholders in speech‐language pathology: Narrative literature reviewInternational Journal of Language & Communication Disorders10.1111/1460-6984.1312359:6(2911-2925)Online publication date: 7-Oct-2024
https://doi.org/10.1111/1460-6984.13123
Kaelber KSeifert LNguyen AMcWhirter K(2024)Anxiety on the internet: Describing person, provider, and organization online postsThe Journal of General Psychology10.1080/00221309.2024.2349765152:1(104-129)Online publication date: 27-May-2024
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Index Terms

Enabling the Participation of People with Parkinson's and their Caregivers in Co-Inquiry around Collectivist Health Technologies
1. Human-centered computing

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cover image ACM Conferences

CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems

April 2018

8489 pages

ISBN:9781450356206

DOI:10.1145/3173574

General Chairs:
Regan Mandryk
University of Saskatchewan, Canada
,
Mark Hancock
University of Waterloo, Canada
,
Program Chairs:
Mark Perry
Brunel University London, UK
,
Anna Cox
University College London, UK

Copyright © 2018 Owner/Author.

This work is licensed under a Creative Commons Attribution International 4.0 License.

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Published: 21 April 2018

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Cited By

Kulkarni PKirkham RWu LMcNaney R(2024)Designing for Participatory Data Governance: Insights from People with Parkinson'sProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661529(541-555)Online publication date: 1-Jul-2024
https://dl.acm.org/doi/10.1145/3643834.3661529
Hassett JSpencer LHewat SWales KWebb G(2024)Collaborative approaches with stakeholders in speech‐language pathology: Narrative literature reviewInternational Journal of Language & Communication Disorders10.1111/1460-6984.1312359:6(2911-2925)Online publication date: 7-Oct-2024
https://doi.org/10.1111/1460-6984.13123
Kaelber KSeifert LNguyen AMcWhirter K(2024)Anxiety on the internet: Describing person, provider, and organization online postsThe Journal of General Psychology10.1080/00221309.2024.2349765152:1(104-129)Online publication date: 27-May-2024
https://doi.org/10.1080/00221309.2024.2349765
Cooper NHorne THayes GHeldreth CLahav MHolbrook JWilcox L(2022)A Systematic Review and Thematic Analysis of Community-Collaborative Approaches to Computing ResearchProceedings of the 2022 CHI Conference on Human Factors in Computing Systems10.1145/3491102.3517716(1-18)Online publication date: 29-Apr-2022
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Lepreux SApedo KOliveira K(2021)Vers une conception centrée sur l’utilisateur ayant un profil évolutif: Une étude de cas avec des personnes atteintes de la maladie de ParkinsonAdjunct Proceedings of the 32nd Conference on l'Interaction Homme-Machine10.1145/3451148.3458646(1-6)Online publication date: 13-Apr-2021
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Honary MFisher NMcNaney RLobban F(2018)A Web-Based Intervention for Relatives of People Experiencing Psychosis or Bipolar Disorder: Design Study Using a User-Centered ApproachJMIR Mental Health10.2196/114735:4(e11473)Online publication date: 7-Dec-2018
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