Journal Article

Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study

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

2025

Overview

Increasing numbers of adults are living with the health-related consequences of Long COVID. The Episodic Disability Framework (EDF), derived from perspectives of adults living with HIV, characterizes the multi-dimensional and episodic nature of health-related challenges (disability) experienced by an individual. Our aim was to determine 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 qualitative descriptive study involving online semi-structured interviews. We recruited adults who self-identified as living with Long COVID via collaborator community organizations 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 a semi-structured interview guide informed by the EDF to explore experiences of disability living with Long COVID, specifically health-related challenges and how challenges were experienced over time. We conducted a group-based content analysis. Of the 40 participants, the median age was 39 years; and the majority were white (73%), women (63%), living with Long COVID for ≥ 1 year (83%). Consistent with the Episodic Disability Framework, disability was described as multi-dimensional and episodic, characterized by unpredictable periods of health and illness. Experiences of disability were consistent with the three main components of the Framework: A) dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty); B) contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and C) triggers that initiate episodes of disability. The Episodic Disability Framework provides a way to conceptualize the multi-dimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID.

• Publisher: Public Library of Science,Public Library of Science (PLoS)
• Subject: Adult / Adults / Age / Analysis / Biology and Life Sciences / Canada - epidemiology / Chronic fatigue syndrome / Chronic illnesses / Cognitive impairment / Collaboration / Community / Community organizations / Content analysis / COVID-19 / COVID-19 - epidemiology / COVID-19 - psychology / Disability / Disability evaluation / Female / Gender aspects / Health aspects / Health services / HIV / HIV patients / Human immunodeficiency virus / Humans / Identity / Inclusion / Interviews / Ireland - epidemiology / Long COVID / Male / Medicine and Health Sciences / Methods / Middle Aged / Participation / Persons with Disabilities - psychology / Qualitative Research / Quality of life / Questionnaires / Rehabilitation / Risk factors / SARS-CoV-2 - isolation & purification / Sexual behavior / Sexually transmitted diseases / Social interactions / Social Sciences / STD / United Kingdom - epidemiology / United States - epidemiology