CONCEPTUALISING THE EPISODIC NATURE OF DISABILITY AMONG ADULTS LIVING WITH LONG COVID: QUALITATIVE STUDY

D.A. Brown¹, K.K. O'Brien², K. McDuff², N. St. Clair-Sullivan³, P. Solomon⁴, S.C. Carusone⁴, L. McCorkell⁵, H. Wei⁶, S. Goulding⁷, M. O'Hara⁸, C. Thomson⁹, N. Roche¹⁰, R. Stokes¹⁰, C. Bergin¹¹, K. Erlandson¹², J. Vera³, L. Avery¹³, C. Bannan¹⁴, A.M. Cheung¹⁵, R. Harding¹⁶, L. Robinson¹⁷

¹Chelsea and Westminster Hospital NHS Foundation Trust, Therapies Department, London, United Kingdom, ²University of Toronto, Department of Physical Therapy, Toronto, Canada, ³Brighton and Sussex University Hospital NHS Foundation Trust, Brighton, United Kingdom, ⁴McMaster University, Hamilton, Canada, ⁵Patient Led Research Collaborative, Oakland, United States, ⁶Patient Led Research Collaborative, Ottawa, Canada, ⁷COVID Long Haulers Support Group Canada, Cambridge, Canada, ⁸Long Covid Support UK, Birmingham, United Kingdom, ⁹Long COVID Physio, Haslemere, United Kingdom, ¹⁰Long COVID Ireland, Dublin, Ireland, ¹¹Trinity College Dublin, Dublin, Ireland, ¹²University of Colorado Denver, Denver, United States, ¹³University Health Network, Toronto, Canada, ¹⁴St. James’s Hospital, Dublin, Ireland, ¹⁵University of Toronto, Toronto, Canada, ¹⁶King's College London, London, United Kingdom, ¹⁷Sunnybrook Health Sciences Centre, Toronto, Canada

Background: More individuals are living with persistent and prolonged signs and symptoms following COVID-19 infection, defined as Long COVID. An estimated 144 million individuals living with Long COVID globally. Long COVID is characterised by a multitude of health symptoms that affect daily functioning and social participation, some of which may fluctuate and change over time. Conceptualising disability in Long COVID is essential to better understand the lived experiences and health-related challenges of people living with and affected by Long COVID to inform effective healthcare, rehabilitation approaches, and interventions to enhance clinical practice, policy, and research.

Purpose: Our aim was to describe the experiences of disability among adults living with Long COVID in Canada, Ireland, the United Kingdom, and the United States.

Methods: We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews with participants recruited via collaborator community networks in Canada, the United Kingdom, the United States and Ireland. We recruited 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 are not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection. 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 also 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, characterised by fluctuations in the 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, characterised as unpredictability of episodes, their length, severity and triggers, and the process of long-term recovery, which had implications on broader health.

Conclusions: Experiences of disability were described as episodic in nature, characterised 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.

Implications: Long COVID is a global health crisis affecting hundreds of millions around the world. Results will help researchers, healthcare providers, policymakers, employers, and community members to better understand the episodic experiences of disability among adults living with Long COVID, to inform future disability measurement, health and rehabilitation care and service delivery, programs and policies for insurance, return to work, and workplace accommodations.

Funding acknowledgements: Canadian Institutes of Health Research (CIHR), Emerging COVID-19 Research Gaps and Priorities Funding Opportunity (FRN: GA4-177753).

Keywords:
Long COVID
Episodic Disability
Post COVID-19 Condition

Topics:
COVID-19
Disability & rehabilitation

Did this work require ethics approval? Yes

Institution: University of Toronto

Committee: University of Toronto Health Sciences Research Ethics Board

Ethics number: Protocol #41749