open access publication

Conference Paper, 2024

Good Days, Bad Days: Understanding the Trajectories of Technology Use During Chronic Fatigue Syndrome

Proceedings of the CHI Conference on Human Factors in Computing Systems, ISBN 9798400703300, Pages 1-10, 10.1145/3613904.3642553

Contributors

Paymal, Léa [1] [2] Homewood, Sarah 0000-0003-1389-8246 [2]

Affiliations

  1. [1] École Normale Supérieure Paris-Saclay
  2. [NORA names: France; Europe, EU; OECD];
  3. [2] University of Copenhagen
  4. [NORA names: KU University of Copenhagen; University; Denmark; Europe, EU; Nordic; OECD]

Abstract

People with chronic illness often fluctuate between “good days” and “bad days” where symptoms are more or less severe depending on a range of factors and triggers. Our research contributes preliminary empirical knowledge on technology use during chronic illness depending on fluctuations in symptoms over time. We conducted a scoping study with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to understand how their illness shapes how they use technologies in their everyday lives. This research contributes a timely HCI lens on the under-researched illness of ME/CFS, proposes the “trajectories of technology use” model that can be used to articulate how technologies are used during chronic illness, and points to design openings for technologies that are more accessible for people who experience chronic fatigue, sensory sensitivities and cognitive limitations. These design openings include non-screen-based technologies, and designing technologies that acknowledge and adapt to the changing body during fluctuations in symptoms.

Keywords

Bad, Hcy, ME/CFS, bad days, body, changing body, chronic fatigue, chronic fatigue syndrome, chronic illness, cognitive limitations, days, design, design openings, design technology, empirical knowledge, everyday life, factors, fatigue, fatigue syndrome, fluctuations, good days, illness, knowledge, lens, life, limitations, model, myalgic encephalomyelitis/chronic fatigue syndrome, opening, people, research, scope, scoping study, sensitivity, sensory sensitivity, shape, study, symptoms, syndrome, technology, technology use, trajectory, trajectory of technology, trigger, use

Data Provider: Digital Science