Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study

Kelly K O'Brien; Darren A Brown; Kiera McDuff; Natalie St Clair-Sullivan; Patricia Solomon; Soo Chan Carusone; Lisa McCorkell; Hannah Wei; Susie Goulding; Margaret O'Hara; Catherine Thomson; Niamh Roche; Ruth Stokes; Jaime H Vera; Kristine M Erlandson; Colm Bergin; Larry Robinson; Angela M Cheung; Brittany Torres; Lisa Avery; Ciaran Bannan; Richard Harding

doi:10.1136/bmjgh-2022-011276

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study

BMJ Glob Health. 2023 Mar;8(3):e011276. doi: 10.1136/bmjgh-2022-011276.

Authors

Kelly K O'Brien^#^{1

2

3

4}, Darren A Brown^#^{5

6}, Kiera McDuff⁷, Natalie St Clair-Sullivan^{8

9}, Patricia Solomon¹⁰, Soo Chan Carusone¹¹, Lisa McCorkell¹², Hannah Wei¹³, Susie Goulding¹⁴, Margaret O'Hara¹⁵, Catherine Thomson⁶, Niamh Roche¹⁶, Ruth Stokes¹⁶, Jaime H Vera^{8

9}, Kristine M Erlandson¹⁷, Colm Bergin^{18

19}, Larry Robinson^{20

21}, Angela M Cheung^{2

21

22}, Brittany Torres⁷, Lisa Avery^{23

24}, Ciaran Bannan^{18

19}, Richard Harding²⁵

Affiliations

¹ Department of Physical Therapy, Termerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada kelly.obrien@utoronto.ca.
² Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.
³ Rehabilitation Sciences Institute (RSI), University of Toronto, Toronto, Ontario, Canada.
⁴ Long COVID Physio, Toronto, Ontario, Canada.
⁵ Therapies Department, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK.
⁶ Long COVID Physio, London, UK.
⁷ Department of Physical Therapy, Termerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
⁸ Department of Global Health and Infection, Brighton and Sussex Medical School, University of Sussex, Brighton, UK.
⁹ Royal Sussex Hospital, Brighton and Sussex University Hospitals NHS Trust, Brighton, UK.
¹⁰ School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
¹¹ McMaster Collaborative for Health and Aging, School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
¹² Patient-Led Research Collaborative, Oakland, California, USA.
¹³ Patient-Led Research Collaborative, Ottawa, Ontario, Canada.
¹⁴ COVID Long-Haulers Support Group Canada, Toronto, Ontario, Canada.
¹⁵ Long Covid Support, Birmingham, UK.
¹⁶ Long COVID Ireland, Dublin, Ireland.
¹⁷ University of Colorado Denver, Anschutz Medical Campus, Aurora, Colorado, USA.
¹⁸ GUIDE Clinic, St. James's Hospital, Dublin, Ireland.
¹⁹ School of Medicine, Trinity College Dublin, Dublin, Ireland.
²⁰ Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
²¹ Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
²² Department of Medicine, University Health Network, Toronto, Ontario, Canada.
²³ Biostatistics Department, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
²⁴ Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.
²⁵ Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, King's College London, London, UK.

^# Contributed equally.

Abstract

Introduction: Our aim was to describe episodic nature of disability among adults living with Long COVID.

Methods: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured 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 and conducted a group-based content analysis.

Results: Among the 40 participants, the median age was 39 years (IQR: 32-49); 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, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and 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. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.

Conclusion: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

Keywords: COVID-19; Descriptive study; Qualitative study.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
COVID-19*
Ethnicity
Female
Humans
Ireland / epidemiology
Male
Post-Acute COVID-19 Syndrome*
Qualitative Research

Grants and funding

CIHR/Canada