An adaptive pacing intervention for adults living with long COVID: a qualitative study of patient experiences of using the ‘PaceMe’ app

Rachel Meach*, David Carless, Nilihan E. M. Sanal-Hayes, Marie McLaughlin, Lawrence Hayes, Jacqueline Mair, Jane Ormerod, Natalie Hilliard, Joanne Ingram, Nicholas F. Sculthorpe

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. AP can help people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential of people experiencing disability from long COVID. The purpose of this study was to explore patient experiences of an AP intervention (the ‘PaceMe’ app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analysed using narrative thematic analysis. Our analysis identified four themes relating to key benefits of the PaceMe app: 1) PEM management, 2) Support, 3) Validation, and 4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.
Original languageEnglish
JournalJournal of Patient Experience
Volume11
Early online date10 Nov 2024
DOIs
Publication statusPublished - 31 Dec 2024

Keywords

  • activity tracking
  • long COVID
  • mHealth
  • recovery
  • adaptive pacing
  • narrative research
  • lived experience

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