RT Journal Article
SR Electronic
T1 Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study
JF BMJ Global Health
JO BMJ Global Health
FD BMJ Publishing Group Ltd
SP e011276
DO 10.1136/bmjgh-2022-011276
VO 8
IS 3
A1 Kelly K O’Brien
A1 Darren A Brown
A1 Kiera McDuff
A1 Natalie St. Clair-Sullivan
A1 Patricia Solomon
A1 Soo Chan Carusone
A1 Lisa McCorkell
A1 Hannah Wei
A1 Susie Goulding
A1 Margaret O'Hara
A1 Catherine Thomson
A1 Niamh Roche
A1 Ruth Stokes
A1 Jaime H Vera
A1 Kristine M Erlandson
A1 Colm Bergin
A1 Larry Robinson
A1 Angela M Cheung
A1 Brittany Torres
A1 Lisa Avery
A1 Ciaran Bannan
A1 Richard Harding
YR 2023
UL http://gh.bmj.com/content/8/3/e011276.abstract
AB 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.Data are available on reasonable request. An aggregated dataset for the study will be made available on reasonable request to the corresponding author in accordance with the Research Ethics Board requirements of the University of Toronto.