Cripping the Co-Design of Pacing Technologies For Energy-Limiting Conditions, 2025, Homewood

Discussion in 'ME/CFS research' started by Dolphin, Apr 5, 2025.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.researchgate.net/profil...chnologies-For-Energy-Limiting-Conditions.pdf

    Abstract

    People with energy-limiting conditions, such as chronic fatigue syndrome (ME/CFS) and Long COVID, need to limit their activity levels and balance exertion with rest and restorative activities.

    This practice is known as “pacing”.

    There is an opportunity for technology to help people with this process, but conducting research with this population can be difficult given their limited and unpredictable energy levels.

    This research explores how we can use crip theory to inform the development of co-design methods suitable for this cohort, and as an analytical lens to explore how these tools should be designed outside of normative and abelist assumptions about fatigue and productivity.

    This is done through a 5 week Asynchronous Remote Community study utilising various co-design techniques.

    These findings point to future designs of pacing technologies and contribute insights about developing more accessible approaches to conducting research with people with energy-limiting conditions.

    CCS Concepts
    • Human-centered computing → Participatory design; Empirical studies in interaction design.

    Keywords chronic fatigue syndrome, ME/CFS, long COVID, post-COVID syndrome, pacing, self-tracking technologies, crip theory, co-design

    ACM Reference Format:
    Sarah Homewood, Claudia A Hinkle, and Irene Kaklopoulou. 2025. Cripping the Co-Design of Pacing Technologies For Energy-Limiting Conditions. In CHI Conference on Human Factors in Computing Systems (CHI ’25), April 26–May 01, 2025, Yokohama, Japan. ACM, New
     
    Peter Trewhitt likes this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    A bit 'crip-tic'?
     
  3. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Norway
    I have not read all of the paper. They asked the participants to imagine a magical machine that could help them. This is one concept from one of the participants:
    [​IMG]
    I’m not sure how this research contributes to anything. It would be a bit like asking me to design a magical car. I would have no idea about anything that a car actually needs to function. The blame lies fully on the rsearchers, the participants just answered their silly questions.
     

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