An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app

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

Abstract

Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome 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 for 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 analyzed using narrative thematic analysis. Our analysis identified 4 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.

Citation

Meach, R., Carless, D., Sanal-Hayes, N. E. M., Mclaughlin, M., Hayes, L. D., Mair, J. L., Ormerod, J., Hilliard, N., Ingram, J., & Sculthorpe, N. F. (2024). An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app. Journal of Patient Experience, 11, https://doi.org/10.1177/23743735241272158

• Journal Article Type: Article
• Acceptance Date: Oct 1, 2024
• Online Publication Date: Nov 10, 2024
• Publication Date: 2024
• Deposit Date: Nov 20, 2024
• Publicly Available Date: Nov 20, 2024
• Journal: Journal of Patient Experience
• Electronic ISSN: 2374-3743
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 11
• DOI: https://doi.org/10.1177/23743735241272158
• Keywords: recovery, mHealth, narrative research, activity tracking, adaptive pacing, lived experience, long COVID
• Public URL: https://durham-repository.worktribe.com/output/3098764