Our aim was to examine the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID.
We conducted a community-engaged international qualitative study involving online semi-structured interviews. Co-authors from the Patient-Led Research Collaborative, Long COVID Physio, Long COVID Support UK, COVID Long Haulers Support Group Canada, and Long COVID Ireland recruited adults who self-identified as living with Long COVID in Canada, Ireland, United Kingdom, and United States. We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used an interview guide informed by the Episodic Disability Framework to explore experiences of health-related challenges among participants and how they were experienced over time. We conducted a group-based content analysis.
Of the 40 participants (10 each representing Canada, Ireland, United Kingdom and United Status), the median age was 39 years (Interquartile Range:32–49); majority identified as white (73%), heterosexual (75%), women (63%), living with Long COVID for ≥1 year (83%). Consistent with the Episodic Disability Framework, disability was described as a continuum of multidimensional health challenges with variable presence, severity and duration of health challenges over time. Disability included day-to-day fluctuations (or fluctuations within a day) that may be superimposed over the broader dimensions of disability experienced over months or years living with Long COVID. Disability was not an all or nothing concept, rather a continual state of health challenges with changing presence, severity and duration of episodes over time. The multidimensional nature of disability involved visibility and invisible forms of health challenges, some of which may be episodic while co-existing with permanent or constant aspects of disability. Experiences of disability were aligned with the 3 components of the Episodic Disability Framework: 1) six dimensions of disability including physical, cognitive, and mental-emotional health challenges, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty or worry about future health; 2) contextual factors (intrinsic and extrinsic) that interact with and may exacerbate or alleviate dimensions of disability; and 3) triggers including moments, stimuli or events that initiate episodes of disability.
The Episodic Disability Framework provides a way to conceptualize disability experienced by adults living with Long COVID. Current work is underway to measure episodic disability and assess the measurement properties of an Episodic Disability Questionnaire with adults living with Long COVID.
The Episodic Disability Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to physiotherapy clinical practice, research, and policy for adults living with Long COVID.
COVID-19
disability
