'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

Aims and Objectives
In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults.

Background
As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients.

Design
We employed an interpretive description study design.

Methods
We recruited a convenience sample of 15 Black American adults with long COVID. We analysed the anonymized transcripts from race-concordant, semi-structured interviews using an inductive, thematic analysis approach. We followed the SRQR reporting guidelines.

Results
We identified four themes: (1) The impact of long COVID symptoms on personal identity and pre-existing conditions; (2) Self-management strategies for long COVID symptoms; (3) Social determinants of health and symptom management; and (4) Effects on interpersonal relationships.

Conclusion
Findings demonstrate the comprehensive ramifications of long COVID on the lives of Black American adults. Results also articulate how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate symptom management.

Relevance to Clinical Practice
Care approaches that support access to and implementation of integrative therapies may be best suited to meet the needs of long COVID patients. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue.

No Patient or Public Contribution
While patient perspectives and experiences were the focus of this study, patients were not involved with the design or conduct of the study, data analysis or interpretation, or writing the manuscript.


What does this paper contribute to the wider global clinical community?

• This study helps address the underrepresentation of Black Americans in long COVID research.
• Findings highlight how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate the management of long COVID symptoms.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/jocn.16733

 

I remember back in the early 90s when I was in contact with the founder/president of MESH (M.E self help) group describing to me how black people were less likely to report symptoms, particularly fatigue and pain to their GP in fear of being labeled 'lazy' or 'over reactive'. She was in contact with a few black people who told her that being disbelieved was very stressful so they never they reported it.

 

It's honestly hard to imagine any group of people who have listened to so much from so many people and heard so little. Even by complete chance it's impossible to get so many things wrong, they hear what they want to hear and nothing else. As if they have no concept of illness or disability. It's a completely foreign experience for which they have nothing they can relate to. They understand this stuff exactly as well any anyone understood electricity 300 years ago.

Here they are, supposedly listening to the subjective experience of a group of people, and yet somehow it is their own ideas and beliefs that end up in there. There's just no substance to this entire discipline, it's the most superficial BS ever put together. An actual Potemkin profession, all façade without any depth whatsoever.

 

Yes. I'm not sure I understand how this relates, some random psychotherapy is obviously not a solution to any of those problems. It's in fact extremely insulting, given that this is the current failed standard.

 

You mean like “we’ve funded for someone to teach you mental coping techniques for when you can’t get food due to being unable to move your body and debilitated” instead of sorting them being fed is just utter stupidity and bigotry on all levels and people shouldn’t be allowed to pretend they are saying something other than horrific ly unkind?

passive aggressive but not very passive pretending it’s ‘mental health’ when clearly it’s an attack on it, kick the puppy damaging- particularly if you have a brain, empathy, aren’t deluded and know psychology. It’s an upside down world where people get away with packaging up a harm programme as pretend help to be paid for instead of actual help just in order to not have to provide basic survival help - and you wonder what has to happen to someone to be so allergic to being human and providing such basic humanity that they’d go to such lengths not to do that?

 

My guess is that the posters in this thread objecting to this study have read "therapies" in the abstract, assumed the authors meant psychological therapies, and have then decided that there is no merit to the study at all.

 

But how do you know @Hutan ?

Using the 'feasibility principle' for proposed conclusions is unfortunately a classic trap we all get bound by from bystanders - it isn't the same as them being definitely what these people said. And when you are in such a precarious position those 'small differences' are huge in whether your needs are met or not. e.g. someone thinking 'it is just a small trip and there is a bench' when you've said you are bed-bound bar once a month 5min trip where you need to park outside isn't them 'making it more possible', it is still not doable.

and those references really aren't good, so you start to combine things like that in with the angle not being write and you get added warp. This feels like a wasted opportunity to have really communicated some 'nubs' and 'nuances' and bring alive just how (hate using the term) Kafka-esque the world can be when even the basics you state clearly aren't understood because of everything being heard through prisms of presumptions layered on top.

If the patients haven't been put in a position where they've effectively 'signed off' that what was interpreted is something they genuinely feel represents x then it isn't anyone's experience or voice. It might be someone 'trying'. But we've all been at the mercy of that. And eventually you realise that was their only try so being forgiving of it being poor on the basis it was 'a fair start with good intentions' ends up with you realising 'that was as far as they were planning to go' and it really wasn't good enough if they thought that was 'it'.

Communication is a difficult thing, and the point of qualitative, particularly when you are delving into niches from cross-over of certain factors, is to be able to express those things that might be unique to those who do not possess and live that situation but wish to explore and walk in the shoes.

Why does someone want another thing of paternalism that claims a bigger medal for apparently being more of the people themselves words whilst still not having checked that is what they were saying vs what the interpreter heard through their own lens. I don't fully understand why this next level was not done.

And my example does note how damaging the end results of these 'little nuances' are. And how likely these misinterpretations are that seem 'small' to outsiders' to be 'massive' in what ends up being delivered. I know it can never be perfect but .. if it is the chance for someone's voice 'to drive' because 'how terrible to feel unheard' it is just paternalism again for someone else to speak for them. People aren't dumb, and they aren't not saying it. It's just for some reason with us, the world makes a massive effort to not really hear us, if it seems counter-intuitive to them they are happy to assume really intelligent people suddenly 'accidentally got their words wrong and meant the opposite'.

And if you really are going to improve things then it is the fine nuance and detail being got right that matters. Not 'seeming feasible' to those who don't have this condition under these circumstances. So it needed to be signed off by them.

The biggest issue for ME/CFS is the liberties people take and they self-justify with minimising the level of disability and the assumption they can give half the adjustment needed - where the condition needs 'all the adjustment' just for someone not to get worse, it isn't a negotiation starting point.

Add in race and mentioning micro-aggressions, which could be from any angle including e.g. minimising of LC/disability and you really need that opportunity at analysis to probe and make sure you've 'got' what was being put across. The amount of times you use one example of bigotry you might get 4 times in a day that strait-jackets being able to just survive the day functionally, because it communicates how stupid others are, and the stupid other person you say it to instead of penny-drop just justifies that one incident as 'acceptable because they could see how they got the wrong end of the stick' entirely missing the point of 'is this OK - REALLY OK - for someone to live inside and have their life crushed by, just because you are all so lazy and forgiving and enabling of others doing this lest they spent 10secs having a think'.

interview alone/even focus groups less reliable without adjustments for those who have energy-limiting conditions:

And if you just think about all this hinging on the 'input' being so perfect it was well-interpreted, well I don't see the bit where submissions/ways of submitting 'evidence' were tailored to the health-limitations of the participants. Design of such research for those with energy-limiting conditions needs MORE check-points, and MUCH MORE involvement in the methods of collection, or being driven/led by the symptoms of the cohort in the interview stage.

I've run so many focus groups myself of various different media. So I know how these can get pretty far in the person who will interpret really having clarified what was meant. Except that is when the energy output and set-up vs the complexity of topic and attentiveness/effort put in of listener to make that communication easier matches. If I was in a 2hr focus group as a participant even on a simple one-concept session then by 45mins in I'd have nothing left to fight clarification with.

But hey the kicker for us is: people have to listen well enough when you tell them that, for them to even understand that is what they are doing/missing. And they generally don't hear it.

I can't imagine what a monumental task this would be for healthy people to communicate such complexities (knowing they might be misinterpreted) to another. It would run down the egg-timer fast. Was this done by questions off the top of head, so people thought on the spot? I just can't think of a format where people could feel OK that they've been put in a position where they could do these topics justice in a one-hit unless it had been purpose-designed to each individuals limitations with prep-time before hand and shortened sessions etc.

I do think that there is a big issue with interpretation without check-backs at least - particularly with something like Long Covid (and ME/CFS) for a number of reasons in particular - and these can only be my guesses based on me and who I've talked to:

1. people will find interviews particularly exhausting, as they get more exhausted they will be more 'led' and less able to not be pushed around in more questions etc because you eventually 'just want it over' in trying to assert your basic rights of being heard.

2. and be up against more presumption and mis-hearing that you continually have to combat. Most phrases that mean something that I utter to anyone who is close enough to me they should know I'd carefully chosen every word they deliberately hear differently. e.g. I've said to numerous people I'd be so tired I'd sleep through x to demonstrate and try and get a penny-drop moment from them. And instead the arrogant g*** reply condescendingly with 'oh you wouldn't, if only you knew what that was like'. It would be like trawling through treacle dealing with this for normal people, nevermind if you had our condition. It's the added debility we get layered on top of 'deliberate obtuseness from others'.

3. add in the liberty people take when they call you a sick person then rewrite your narrative or demographic to assume they know better (95% of people do this, even though you are more clever than them, it is shocking, your voice slows and they suddenly think they've got one over on you) and having been pushed through and led in your talking and half of what you've said you'd want to check how it was twisted.

 

It was an example of how easy it is for good intentions to completely miss the need issue and how precision of understanding exactly what the situation is in order for something to actually be a solution rather than rubbing it in as someone not only not being heard but also their desperate circumstance not being seen. And something that is common and commonly understood by others - sadly when choosing examples one needs to think of what others will 'get' when trying to get across a penny-drop. It could just as easily be form-filling, phone calls or whatnot where the person you ask for help just tells you the solution is bucking you up to do it, because they won't hear 'can't'.

And yes I mentioned it because these things were mentioned but we've all seen how solutions and what is heard end up missing the mark completely, unless the next step - of what would solve it - is also driven by those actually in the situation.

One example here is that getting prescriptions sorted has become a monumental slog - all sorts of hoops, jumps and potential points for things to fall apart and then the patient has to work out which person in the chain to chase (made harder by numerous persons being in chain and all suggesting it is the other). And of course the lovely kicker is that people [bystanders you ask for help, and have to explain 'why' it is needed] assume the debilitated person must have something to do with the failure (thanks to bigotry - how dare people on this motivation stuff), rather than them being about as organised and assertive and tenacious a person you get (because we've had to be and got a heck of a lot of experience in problem-solving) being bound from all angles.

Until I tasked someone that I knew with trying to do these steps for me (only on one occasion) they didn't get any of it. They had to live it to see it. How that could take up every day of a week - I mean how could it - and you still end up with outstanding items. So at least then if I tried to describe to someone who put these various changes in why they don't work for those who are disabled, I've got someone else nodding next to me rather than all assuming it is 'my motivation' because their ideas must be genius.

I know that if what that involved got summarised wrongly or the solution itself didn't come back to check and hear the detail of what was going on then the solution might well miss the point again.

There are some top-level issues, but it is also about peple not 'getting' quite how restricted by a refusal to understand the limitations on each and every bit of the chain of anything is the issue for energy-limiting. If you have to line-up someone else picking up your prescription for you and they can only do one day then someone screwing up something for 3 days when you're also only allowed by the system to have 5 days ahead contingency means a heck of a lot of work and energy you don't have to try and make the ends meet. And that is just on one example you might have in a day of essential things. For someone who is needing to deal with a 'threshold'

So I do worry about all the 'seems feasible' vs what might really have needed to be heard. I have met the odd good person who 'gets it' (so I know it isn't all bad and these people might be great) but 95% of people don't when you describe these things. Those who will read this included. So I've a lot of experience in how you can say and describe something and most interpret it down a level. And how those who 'get it' tends to also be the ones who 'checks it' the irony.

 

To add

How many people living in disadvantaged neighbourhoods didn't have access to vaccination centres in their area? Or owned cars to get to one. Some never got vaccinated. How many developed LC? I saw these stories many times on the news, mostly black neighbourhoods in the U.S. and some in Canada.

 

In discussion:

is what comes before that line:

You might note that what is termed 'psychological therapies' is actually an often now 'embedded' communication technique which reframes what someone says (CBT, embedded CBT is being put through all sorts of professions and I have a real issue with that because 'embedded CBT techniques' really is only about controlling communication). So is a big issue whether someone gets sent off to a specific session or not. Because effectively it is being used as a way of thinking for professions with no psychological background in such a way they don't even realise how it has changed them and that/when they are doing it.


So whilst the conclusion paragraph and bottom of discussion does seem to focus on the social and functional much better and note that training for staff, rather than for patients, is something to flag, I do think that the propensity of systems to knee-jerk grab the off-the-shelf CBT/ACT stuff is something that is reasonable to warn against when the generic term therapies is used in this context.

And you will note that above all of this social stuff, in the top half of that conclusion para is:

In the old days even in psychology one was supposed to diagnose the specific issue, looking at the situation-first, and a therapy (if it was effective at all) was only of use for those who actually had the issue that matched that therapy. Yet these days there is a move to off-the-shelf, supply-led, increasingly generic 'transdiagnostic' and without a massive caveat noting these not only fall short but actually would cause harm in their current form then there is indeed a risk of someone scanning through and taking what they want as a conclusion from it with an off-the-shelf being grabbed as a solution.

In a way the specificity of the 'what' and importantly 'what it's not' re: content is more important (focusing on functional, making sure it gets the crux of the situation people are in) as well as prioritising the most important aspects. And whilst I admire the stopping short of prescribing where more research is needed rather than grabbing at suggestions that are too specific but not yet evidenced, underlining this priority list in the 'package' is probably important, so you don't get 'well we can't help with x but there is loads of supply of this therapy' being what happens in reality - so I do think it is worth mentioning.

 

I don't know how else to interpret that, this is what integrative therapies mean as far as I know. This is not how to care for those patients, in fact this is offered in response to lack of actual care while not recognizing what the lack of care is even about.

I'm just weird like that but frankly I expect better from professionals. Not being completely awful is not nearly good enough. This is not useful to anyone.