“We’re drowning and we’re alone”:a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms,2023, Goodridge+

“We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms
Donna Goodridge; Thomas N. Lowe; Shuang Cai; Flinn N. Herriot; Rachel V. Silverberg; Michael Heynen; Kelly C. Hall; Jaimie Peters; Scotty Butcher; Taofiq Oyedokun

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.

Link | PDF (Canadian Medical Association Open Access Journal)

 

This is good, this is exactly what pwLC are experiencing all around the world.

 

Yes, this is why they're saying “We’re drowning and we’re alone”. Healthcare systems are not ill-equipped to deal with this. They are, in fact, very well-equipped. They're just refusing and continued the "you do you" policy of "not their problem" that was already in place from the beginning.

Nothing new, and nothing unique about any of this.

And eventually, for many, there's nothing left. But, again, nothing new or unique about this. But they don't talk about those. Not their problem.

Meanwhile if you poll "specialist" clinics dealing with this they'll all report that things are fine and dandy, no need for anything more. It's truly mutually exclusive realities out there.

Hence “We’re drowning and we’re alone”. It's in fact a common meme that's been around for years, and nothing's changed, drownings will continue until morale increase shows up on questionnaires, or not.