Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About ..., 2024, Gardner et al

Abstract
BACKGROUND For many patients with post–COVID-19 condition (long COVID), primary care is the first point of interaction with the health care system. In principle, primary care is well situated to manage long COVID. Beyond expressions of disempowerment, however, the patient’s perspective regarding the quality of long COVID care is lacking. Therefore, this study aimed to analyze the expectations and experiences of primary care patients seeking treatment for long COVID.

METHODS A phenomenological approach guided this analysis. Using purposive sampling, we conducted semistructured interviews with English-speaking, adult primary care patients describing symptoms of long COVID. We deidentified and transcribed the recorded interviews. Transcripts were analyzed using inductive qualitative content analysis.

RESULTS This article reports results from 19 interviews (53% female, mean age = 54 years). Patients expected their primary care practitioners (PCPs) to be knowledgeable about long COVID, attentive to their individual condition, and to engage in collaborative processes for treatment. Patients described 2 areas of experiences. First, interactions with clinicians were perceived as positive when clinicians were honest and validating, and negative when patients felt dismissed or discouraged. Second, patients described challenges navigating the fragmented US health care system when coordinating care, treatment and testing, and payment.

CONCLUSION Primary care patients’ experiences seeking care for long COVID are incongruent with their expectations. Patients must overcome barriers at each level of the health care system and are frustrated by the constant challenges. PCPs and other health care professionals might increase congruence with expectations and experiences through listening, validating, and advocating for patients with long COVID.

The Annals of Family Medicine August 2024, 3145 | https://doi.org/10.1370/afm.3145 | Link | PDF

 

Funny how knowledge about long COVID is the first thing patients expect, but has disappeared from the list once we get to the recommendations for how HCPs could do better.

 

So, big picture: they're not doing their job, they might try thinking about doing part of their job, but no one will make them. So, less than is expected of a teenager at an unsupervised summer job.

You might think about raising the bar many, many steps further. This should be neutral. Like customer service not calling you a fuckface. The bare minimum that is expected to be surpassed by the end of the first sentence they speak out loud.

Actually this is incorrect:

Patients cannot overcome those barriers. We face them at every single step but they are insurmountable, inflexible, intransigent. We have no control over those barriers, they are put there explicitly to stop us from going further. The only way to deal with those is to go around them, that is going to see different MDs. So: doctor shopping. Which nowadays is recorded onto health records and quickly becomes problematic, now and in the future. A problem such as the absurd psychosomatic ideology arguing that doing so is a circular sign of, uh, whatever it is they want to be, I guess.

As is usual, this is simply a description of a failing system that refuses to adapt or change anything about its rigid processes, and lacks any coherent processes to care about this being a problem. Clearly lots of people aren't doing their jobs here if most MDs, including GPs who are the first line, remain ignorant of this giant problem, but they always somehow escape any and all blame. They are systemic problems where the system isn't to blame, and neither are the individual employees. Which leaves... the patients. Who face all the barriers and cannot overcome those because those barriers are classic gatekeeping, put there on purpose and with intent because those systems don't even have the resources to deal with 20% of the problems they are made responsible for.

Even the description of patients' expectation is so mid. Those are all reasonable expectations about the bare minimum that junior employees in any job are expected to surpass. And yet none of those expectations are ever met, because the profession simply refuses to adapt and learn from its own mistakes, and would rather keep on failing cluelessly than deal with it.

However many of those papers get published won't make a lick of difference. The knowledge about where the problems are has been obvious for decades. And the problem refuses to change, it doesn't have to. Not without being forced to, and the people who could force them can't be bothered to care. They're pencil-pushers or careerists simply biding their time until their comfortable retirement and refuse to move the boat lest they splash someone higher up and displease them.