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 language | English |
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Journal | Journal of Patient Experience |
Volume | 11 |
Early online date | 10 Nov 2024 |
DOIs | |
Publication status | Published - 31 Dec 2024 |
Keywords
- activity tracking
- long COVID
- mHealth
- recovery
- adaptive pacing
- narrative research
- lived experience