"We're drowning and we're alone": a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms.
CMAJ Open
; 11(3): E504-E515, 2023.
Article
in English
| MEDLINE | ID: covidwho-20236159
ABSTRACT
BACKGROUND:
The "long tail" of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%-30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms.METHODS:
We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation.RESULTS:
The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity.INTERPRETATION:
Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society.
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Main subject:
Drowning
/
COVID-19
Type of study:
Experimental Studies
/
Observational study
/
Prognostic study
/
Qualitative research
/
Randomized controlled trials
Topics:
Long Covid
Limits:
Adult
/
Female
/
Humans
/
Middle aged
Language:
English
Journal:
CMAJ Open
Year:
2023
Document Type:
Article
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