“It was almost like it’s set up for people to fail” A qualitative analysis of experiences and unmet supportive needs of people with Long COVID 2023,

Abstract
Background

Almost twenty percent of adults with COVID-19 develop Long COVID, leading to prolonged symptoms and disability. Understanding the supportive needs of people with Long COVID is vital to enacting effective models of care and policies.

Design/methods
This qualitative sub-study explored the experiences of people with Long COVID and their unmet needs. Participants enrolled in a larger study to evaluate the post-acute cardiovascular impacts of COVID-19 were invited to participate in subsequent in-depth interviews. Participants were enrolled purposively until saturation at 24 participants. Data were analyzed using thematic content analysis.

Results
Participants focused on adaptations to life with Long COVID and their unmet needs in different life spheres. Three domains, 1) occupational and financial; 2) healthcare-related; and 3) social and emotional support, emerged as areas affecting quality of life. Although participants were motivated to return to work for financial and personal reasons, Long COVID symptoms often resulted in the inability to perform tasks required by their existing jobs, and unemployment. Those who maintained employment through employer accommodations still needed additional support. Participants encountered diagnostic challenges, challenges in accessing specialty appointments, insurance loopholes, high healthcare costs, and medical skepticism. Existing social networks provided support for completing daily tasks; however, those with Long COVID typically turned to others with similar lived experiences for emotional support. Participants found government support programs inadequate and difficult to access in all three domains.

Discussion
We propose a five-pronged policy approach to support persons with Long COVID. These overarching recommendations are (1) improve public awareness of Long COVID; (2) improve clinical care quality and access; (3) implement additional school and workplace accommodations; (4) strengthen socioeconomic benefits and social services; and (5) improve research on Long COVID.

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-023-17033-4

 

It pretty much was, and if it wasn't, it wouldn't be any different. It's such a perfect failure that it may as well be on purpose, it wouldn't make any difference. The way medicine responded guaranteed this failure, denying reality never works out, and when you're not willing to put any effort you don't get results, it's as simple as that. And we all know why they're still not putting the effort: they don't believe in it, as absurd as it may be. If anything, those beliefs have actually reinforced, despite being such an overt and blatant failure.

So although those recommendations are fine, they sidestep the major issue of why it happened. There is a fundamental and structural failure at play here, one that is not being voiced out loud, for much the same reasons that medicine's response to Long Covid may as well truly have been set up to fail. But this is a political issue so it is taken with great diplomacy, although that hasn't worked out so far.

Even more tragic is that this has been reported from the start, and things haven't changed. Things were set up to fail from the start, and they still are. Errors happen, even with professionals, but the inability to assess, to self-reflect and evaluate the outcomes they create, let alone adapt to them, is the bigger problem here. Outside of maybe a few hundred individuals, there is simply no learning happening, certainly none where it could make a difference, none at the institutional level.

But this is something the institutions of medicine will have to do for themselves, clearly they are not willing to listen and learn from outside their bubble, and even worse there is no one to actually enforce some accountability. What an odd and dysfunctional system, one that, as a whole, may as well be somewhat set up to fail as well.