Conceptualizing the Episodic Nature of Disability among Adults Living With Long COVID: Qualitative Study

Research Objectives: To describe experiences of disability among adults living with Long COVID.

Design: We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews.

Setting: We recruited participants via collaborator community networks in Canada, United Kingdom, United States and Ireland.

Participants: Adults who self-identified as living with Long COVID, defined as signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for 12-weeks or more and not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection.

Interventions: Not applicable.

Main Outcome Measures: We used a semi-structured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory. We conducted a group-based content analysis.

Results: Among the 40 participants (10 per country), the median age was 39 years; majority were women (63%), white (73%), heterosexual (75%), and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterized by fluctuations in presence and severity of health-related challenges (disability) that may occur within the day to over the long-term living with Long COVID. They described living with ‘ups and downs’, ‘flare-ups’, and ‘peaks’ followed by ‘crashes’, ‘troughs’, and ‘valleys’, likened to a ‘yo-yo’ ‘rolling hills’, and ‘rollercoaster ride’ with ‘relapsing/remitting’, ‘waxing/waning’, ‘fluctuations’ in health. Illustrations demonstrated trajectories of health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterized as unpredictability of episodes, their length, severity and triggers, and process of long-term recovery, which had implications on broader health.

Conclusions: Experiences of disability were described as episodic in nature, characterized by fluctuating health challenges, which may be unpredictable among this sample of adults living with Long COVID. Results will help to better understand experiences of disability among adults living with Long COVID and inform approaches for rehabilitation.

Author(s) Disclosures: None.