Long COVID has impacted millions of people around the world. Long COVID may manifest in several potential health challenges, spanning physical, mental and emotional, and cognitive domains. These symptoms have the potential to impact one’s work/employment, day-to-day life, and social engagement. For many individuals living with Long COVID, their symptoms may fluctuate over time. Some individuals living with Long COVID refer to this fluctuation in symptoms as episodic disability, which is characterized by physical, cognitive, or mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion (including within employment), as well as uncertainty about the future which may fluctuate on a daily basis or over months or years living with the condition.
Given the widespread impact of Long COVID, it has affected a large number of working age individuals. This has resulted in lost jobs, challenges and struggle to maintain employment, and substantial economic strain (faced by individuals in terms of lost wages and savings, but also by employers and governments in terms of labour market shortages and health care and disability costs).
The Long COVID and Episodic Disability Research Study team includes researchers, clinicians, and people with lived experiences of Long COVID. The aim of this study is to obtain a better understanding of the disability experiences among people living with Long COVID, and assess the measurement properties of the Episodic Disability Questionnaire (EDQ) for its ability to measure presence, severity, and episodic nature of disability among people living with Long COVID. In the first phase of this research study, 40 semi-structured interviews were conducted with adults living with Long COVID (10 each from Canada, Ireland, the United Kingdom, and the United States) to explore experiences of disability and establish an episodic disability (ED) framework in the context of Long COVID. The policy brief builds on findings from these interviews, highlighting their experiences of episodic disability living with Long COVID and their impact on overall health and labour force participation.
How will you know you’re ready to return to work? [I’ve been told that] you have to be able to get through the basics of your own day to day life and be fully functional at it with capacity to spare before you can try and put your toe back into the working world… I’m not in a stable enough place for that to be a realistic goal.
– Research Participant (P25)
Funding:
Funding for this policy brief was provided by the Ontario Strategy for Patient Oriented Research (SPOR) SUPPORT Unit, which is supported by the Canadian Institutes of Health Research (CIHR), the Province of Ontario, and partner Ontario hospital foundations and institutions. The Long COVID and Episodic Disability Study was supported by the CIHR Emerging COVID-19 Research Gaps and Priorities Funding Opportunity (Funding Research Number #: GA4-177753).
Habitus Consulting Collective & Long COVID and Episodic Disability Study Team (O’Brien KK, McCorkell L, Malli N, McDuff K, Chan Carusone S, Cheung A, Goulding S, Kelly M, O’Hara M, O’Connell S, O’Donovan I, Thomson C, Wei H, Stokes R, Fay J). (2024). Long COVID, Episodic Disability and Labour Force Participation: Calls to Action for Government, Employers, Human Resource (HR) Professionals, Insurers and Benefit Providers: Canada, Ireland, United Kingdom, United States of America
Source publications:
O'Brien KK, Brown DA, et al. (2023). Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study. BMJ Global Health, 8(3), e011276. https://gh.bmj.com/content/8/3/e011276
O’Brien KK, Brown DA, et al. (2024). Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative study. MedRxiv Preprint, 2024.05.28.24308048. https://www.medrxiv.org/content/10.1101/2024.05.28.24308048v2
Ontario Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit
