research-article

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Supporting Coping with Parkinson's Disease Through Self Tracking

Authors:

Sonali R. Mishra,

Predrag Klasnja,

John MacDuffie Woodburn,

Eric B. Hekler,

Larsson Omberg,

Michael Kellen,

Lara MangraviteAuthors Info & Claims

CHI '19: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems

Paper No.: 107, Pages 1 - 16

https://doi.org/10.1145/3290605.3300337

Published: 02 May 2019 Publication History

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Abstract

Self-tracking can help people understand their medical condition and the factors that influence their symptoms. However, it is unclear how tracking technologies should be tailored to help people cope with the progression of a degenerative disease. To understand how smartphone apps and other tracking technologies can support people in coping with an incurable illness, we interviewed both people with Parkinson's Disease (n=17) and care partners (n=6) who help people with Parkinson's manage their lives. We describe how symptom trackers can help people identify and solve problems to improve their quality of life, the role symptom trackers can play in helping people combat their own tendencies towards avoidance and denial, and the complex role of care partners in defining and tracking ambiguous symptoms. Our findings yield insights that can guide the design of tracking technologies to help people with Parkinson's Disease accept and plan for their condition.

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Cited By

Yu JAyobi AMarshall PO'Kane A(2025)Creatively Supporting Mental Wellbeing: A Tangible Toolkit to Scaffold Self-Tracking through Mindful ColouringProceedings of the Nineteenth International Conference on Tangible, Embedded, and Embodied Interaction10.1145/3689050.3704944(1-17)Online publication date: 4-Mar-2025
https://dl.acm.org/doi/10.1145/3689050.3704944
Jo EZehrung RGenuario KPapoutsaki AEpstein D(2024)Exploring Patient-Generated Annotations to Digital Clinical Symptom Measures for Patient-Centered CommunicationProceedings of the ACM on Human-Computer Interaction10.1145/36869978:CSCW2(1-26)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686997
Krämer SKottwitz GWoźniak MMeyer JKoelle M(2024)Stepping on the scale? Only in the morning, of course! - Exploring the Lived Experience of Consumer Self-Tracking Technology in the Context of Citizen ScienceProceedings of the 13th Nordic Conference on Human-Computer Interaction10.1145/3679318.3685372(1-17)Online publication date: 13-Oct-2024
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Index Terms

Supporting Coping with Parkinson's Disease Through Self Tracking
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI

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cover image ACM Conferences

CHI '19: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems

May 2019

9077 pages

ISBN:9781450359702

DOI:10.1145/3290605

General Chairs:
Stephen Brewster
University of Glasgow, Scotland, UK
,
Geraldine Fitzpatrick
TU Wien, Austria
,
Program Chairs:
Anna Cox
University College London, UK
,
Vassilis Kostakos
University of Melbourne, Australia

Copyright © 2019 Owner/Author.

Permission to make digital or hard copies of part or all of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for third-party components of this work must be honored. For all other uses, contact the Owner/Author.

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Published: 02 May 2019

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Robert Wood Johnson Foundation

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CHI '19: CHI Conference on Human Factors in Computing Systems

May 4 - 9, 2019

Glasgow, Scotland Uk

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CHI '19 Paper Acceptance Rate 703 of 2,958 submissions, 24%;

Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

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CHI 2025

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ACM CHI Conference on Human Factors in Computing Systems

April 26 - May 1, 2025

Yokohama , Japan

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Cited By

Yu JAyobi AMarshall PO'Kane A(2025)Creatively Supporting Mental Wellbeing: A Tangible Toolkit to Scaffold Self-Tracking through Mindful ColouringProceedings of the Nineteenth International Conference on Tangible, Embedded, and Embodied Interaction10.1145/3689050.3704944(1-17)Online publication date: 4-Mar-2025
https://dl.acm.org/doi/10.1145/3689050.3704944
Jo EZehrung RGenuario KPapoutsaki AEpstein D(2024)Exploring Patient-Generated Annotations to Digital Clinical Symptom Measures for Patient-Centered CommunicationProceedings of the ACM on Human-Computer Interaction10.1145/36869978:CSCW2(1-26)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686997
Krämer SKottwitz GWoźniak MMeyer JKoelle M(2024)Stepping on the scale? Only in the morning, of course! - Exploring the Lived Experience of Consumer Self-Tracking Technology in the Context of Citizen ScienceProceedings of the 13th Nordic Conference on Human-Computer Interaction10.1145/3679318.3685372(1-17)Online publication date: 13-Oct-2024
https://dl.acm.org/doi/10.1145/3679318.3685372
So JYang FGupta AGajos K(2024)"It's Better to be Grounded in Reality": a Speculative Exploration of Patient-Centered Digital Phenotyping for Neurological ConditionsProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3688486(1-5)Online publication date: 27-Oct-2024
https://dl.acm.org/doi/10.1145/3663548.3688486
Dotch EMavrovounioti ADu WAnkrah EJohnson JMin AHayes G(2024)Accessibility through Awareness of Noise Sensitivity Management and Regulation PracticesProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675630(1-12)Online publication date: 27-Oct-2024
https://dl.acm.org/doi/10.1145/3663548.3675630
Tang CShuva IThelen MZhu LMiller N(2024)Exploring the Strategies People with Parkinson's Disease Use to Self-track Symptoms and MedicationsACM Transactions on Accessible Computing10.1145/364945417:1(1-21)Online publication date: 27-Feb-2024
https://dl.acm.org/doi/10.1145/3649454
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
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
Lin GLessard PLe MLi BChevalier FTruong KMariakakis A(2024)Functional Design Requirements to Facilitate Menstrual Health Data ExplorationProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642282(1-15)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642282
Sefidgar YCastillo CChopra SJiang LJones TMittal ARyu HSchroeder JCole AMurinova NMunson SFogarty J(2024)MigraineTracker: Examining Patient Experiences with Goal-Directed Self-Tracking for a Chronic Health ConditionProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642075(1-19)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642075
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