“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study
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Introduction
Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms. Our aim was to describe experiences of pacing from the perspectives of adults living with Long COVID.
Methods
We conducted a community-engaged qualitative descriptive study involving one-on-one online interviews with adults living with Long COVID from Canada, Ireland, United Kingdom, and United States to explore experiences of disability. We asked participants about strategies they used to deal with health challenges living with Long COVID. Interviews were audio recorded and transcribed verbatim. We analyzed data using group-based content analytical techniques.
Results
Among the 40 participants living with Long COVID, the majority were women (n=25; 63%), white (n=29;73%) and heterosexual (n=30;75%). The median age of participants was 39 years (25th, 75th percentile: 32, 49). Most participants (n=37;93%) used pacing to mitigate or prevent symptoms. Participant described experiences of pacing across five main areas: 1) using pacing as a living strategy (pacing to mitigate multidimensional health challenges; applying pacing to many types of activities; process of pacing experienced as a moving target; pacing experienced as a helpful strategy, but not a cure for Long COVID); 2) learning how to pace (acquiring knowledge about pacing; developing strategies and skills to support pacing); 3) encountering challenges with pacing (learning how to pace; experiencing inequitable access to pacing; experiencing stigma and judgement; undergoing psychological and emotional adjustment from beliefs of ‘fighting’ or ‘pushing through’ to balancing rest with activity; making sacrifices; and encountering unexpected obstacles); 4) experiencing consequences of not pacing; and 5) conceptualising and describing pacing using analogies or metaphors.
Discussion
Pacing is a challenging and complex strategy used to mitigate symptoms of Long COVID. Healthcare providers should work collaboratively with patients to further refine and implement this strategy, when appropriate.
