Trial Report Explanation for symptoms and biographical repair in a clinic for persistent physical symptoms, 2024, Burton

Dolphin

Dolphin

Senior Member (Voting Rights)
https://www.sciencedirect.com/science/article/pii/S2667321524000477

SSM - Qualitative Research in Health
Available online 21 April 2024, 100438
In Press, Journal Pre-proof

Explanation for symptoms and biographical repair in a clinic for persistent physical symptoms
Tom Sanders, Kate Fryer, Monica Greco, Cara Mooney, Vincent Deary, Christopher Burton
https://doi.org/10.1016/j.ssmqr.2024.100438
open access

Highlights

  • Persistent physical symptoms lead to biographical disruption

  • Absence of an explanation for these symptoms blocks biographical repair

  • Extended role GPs co-produced multi-layered explanations for symptoms with patients

  • Explanations were acceptable and opened new opportunities for action and learning

  • Explanation of persistent symptoms facilitated biographical repair.

Abstract

Introduction
Biographical disruption describes the process by which illness impacts not just on a person’s body and their participation in activities, but also on their sense of self. Biographical disruption is often followed by a process of biographical repair in which identity is reconstructed and a new normality is restored. People with persistent physical symptoms (sometimes referred to as medically unexplained symptoms) experience biographical disruption. This can be complicated by lack of explanation and the implication that if the problem is not medical, then it might be the person/psychological. We aimed to examine this tension in people attending a novel “Symptoms Clinic” for people with persistent physical symptoms.

Methods
This study reports an embedded qualitative study in a UK based randomised controlled trial. Data were collected by audio recordings of consultations and semi-structured interviews with patients. We used theoretically informed thematic analysis with regular coding and discussion meetings of the analysis team. This analysis explores the role of intervention components in facilitating biographical repair.

Results
The lack of acceptable explanation for persistent symptoms acted as a block to biographical repair. In the clinic, multi-layered explanations were offered and negotiated that viewed persistent symptoms as understandable entities rather than as indicators of something still hidden. These explanations allowed study participants to make sense of their symptoms and in turn opened new opportunities for self-management. The result was that participants were able to reframe their symptoms in a way that enabled them to see themselves differently. Even if symptoms had not yet improved, there was a sense of being better. This can be understood as a process of biographical repair.

Conclusion
Explaining persistent physical symptoms enables biographical repair.

Keywords
Biographical repair
Persistent physical symptoms
primary care
Biographical disruption
Symptoms clinic
qualitative research
 
Dolphin said:
The lack of acceptable explanation for persistent symptoms acted as a block to biographical repair.
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No, it's the lack of acceptance by society that blocks biographical repair. They could say that it's a terrible disease without treatments and that patients are doing their best. But instead we get this minimizing and psychologizing behaviour that assigns to patients the role of the lazy, undeserving person that could achieve if only they overcame themselves.
 
So, by their own admission, just alternative medicine based on pseudoscience that treats nothing. And the point of this is? Ah, the same old "feel a bit better", which is asinine to the point of being insane in this context.

Is "multi-layered explanation" a new code word for bullshit? Because it sure substitutes perfectly.

And as is tradition, always novel, always exactly the same as before. Someone has a problem dealing with internal issues here, and it's not the patients. Their description of the patient experience dealing with illness is just comically inept. It's so mediocre, they understand nothing of it. There have been absolute monarchs who understood the lives of the lowest peasant under their rule better than this crap.

Of course the sense of self is affected by the illness and the limitations it imposes. Patients have been telling these fools for decades, and common sense dictates it, but they'd rather choose their own interpretation based on some vain pursuit of who knows what.

I don't even know what to make of how ridiculous it is that they think the lack of explanation causes disruption, rather than untreated illness and lack of support. This is the same model they've been trying for decades and they just don't care to change anything about it, just have no useful understanding of illness, how it affects people and why.

Also, bizarre definition of acceptable:
In some cases, the explanation was accepted but not seen as appropriate.
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I guess it just means, what, not insulting? If it's not appropriate it can't be acceptable. This is ridiculous.

Ugh. It's really hard to slog through this clownish nonsense. It's so mediocre and hubristic.
 
Trish said:
That's a new one - biographical repair.
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For ME, and used in this interventional way, it does sound...ugh.

The concept itself can be useful; it's sometimes used to describe the process people undergo after a late (by about 50 years in my case) diagnosis for autism. It's mostly a personal journey, where some past events and outcomes are reframed in the light of new knowledge.

My first was in respect of ME, as I'd been ill for 23 years without understanding that the different patterns of symptoms I'd had at different times were all part of the same thing, and it was an illness, not just me being feeble.

There was no "sense of being better", though. One of the most valuable things it gave me was a vocabulary to describe it, which I'd lacked before.
 
Quotes:

Clinicians were taught to use explanations based on a contemporary neuroscientific account of symptoms (Henningsen et al., 2018) including central sensitisation (Latremoliere and Woolf, 2009) and in ways broadly comparable to pain neuroscience education (Wood and Hendrick, 2019). These explanations emphasised the reality of symptoms as embodied experiences and also as the consequence of linked brain and body processes. These explanations were adapted to be personally relevant by including elements from the patient’s account and offering an interpretation of these experiences through the layered biomedical and psychosocial components of the explanation. Thus, the patient’s story was scientifically necessary for the explanation to make sense (and not just elicited for the benefit of being ‘listened to’ prior to having a standardised mechanistic explanation imposed on them).
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the doctor explicitly co-produced (or at least negotiated rather than prescribed) the explanation and plan for action
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explanations were co-constructed as multi-layered accounts in which symptoms appear as embodied (Slatman, 2018, Kirmayer and Gómez-Carrillo, 2019). The process of co-construction enacted a form of speculative pragmatism, where explanations are tested not by whether they are true in terms of their ability to accurately describe causal mechanisms or predict the future (outcomes), but by whether they are useful in facilitating an opening towards new actions and possibilities
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A short term enhanced medical communication intervention, centred around hearing and validating the patient’s illness narrative and making sense of it with multi-layered explanations, enabled people with multiple persistent physical symptoms to reframe their symptoms in a way that enabled them to act differently and learn a new balance between acceptance and agency; regain some control over their symptoms and move to a new normality which had meaningful continuity with their life prior to disruption. This can be understood as a process of biographical repair.
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I have read the paper. It seems to me that all they are doing is spending a bit longer than usual with patients to take a detailed medical history, then waffling on a bit about sympathetic/parasympathetic balance and the brain, then going on to suggested actions such as breathing exercises to calm the flight or fight response.

It seems from the bits they quoted that the explanations were not based, and not particularly intended to be based in science, rather to tell a story where the patient was told to accept they had a chronic condition, not to try to seek further explanation, and that they could take some control over their symptoms by their own actions. I don't get the impression patients symptoms actually improved.
 
I'll have a stab at translating:
Trish said:
Quotes:
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biographical, meaning - the story of a person's life

repair, meaning - restore (something damaged, faulty, or worn) to a good condition:

from the paper - "in which identity is reconstructed and a new normality is restored"

Sort your beliefs emotions and fears out, you're deconditioned, there ya good - good as new.

Thank you so much a feel I lot better now

o_O:asleep:
 
This analysis of one interview is too much:

One of the other big things is also getting friends and family and work to understand what's wrong with you [mmm]. You feel, I’ve felt many times that I'm just a fraud [mmm] and that I'm just er, work shy, lazy, hypochondriac (S10 048).

The lack of explanation meant that, in addition to the work of living with their illness, patients felt they had to work hard at being credibly ill in the eyes of others so as to avoid stigmatisation, or the spoiling of their identity (Goffman, 1963). Part of this work to retain coherence and credibility involved an ongoing effort to make sense of the symptoms. Patients searched for explanations based on scientific research (using online or other media sources), and sought to link these to elements of their own biography in order to “at least create a bit of meaning”
 
Biographical repair from the same people who keep the foot on the neck via misinformation that means we live in epistemic injustice where everyone at best thinks we are fatigued? and maybe doing mindfulness or all these additional exertions will be useful?

to quote three men and a little lady's best: "what a croc"

This is of course just a propaganda piece for disability bigotry.

Noone who doesn't 'want to believe someone's symptoms' or want to believe they couldn't fix them themselves by doing something different and acting normal would read this tosh.

This sounds very much like someone who is looking to add further epistemic injustice by attempting to pretend if someone isn't able to return to work because their illness becomes unnnecessarily worse, they don't get adjustments in time or health care and so on then somehow that is that person's 'identity' or 'choice' rather than delibate and true blocks being put in their way? So that again more elements of their story are not heard?


If only people could ask for their money back from these people who somehow get tenure.

The issue is even if it isn't ME/CFS these people who have drifted themselves into psychosomatic nonsense get to keep their jobs as long as they churn out somethign and you aren't going to move into an area where there is real peer review and methodology if you were the type who chose to go into the area with the 'easy life'.

And noone else wants them or wants this near them.

I struggle to believe that we allow this in the formats it is produced, without warnings or requiring peer review from non-bigots etc, given how obvious bigotry and propaganda it is.

These are just vehicles for people who don't really have treatments, or anything interesting to say, to sew into an article another load of tripe saying the symptoms are 'persisitent' and here is our narrative on them instead of the truth?


I don't even dare look at what the 'layered explanations' might be???

why would a profession that pretends it does science be so obsessed with feeding lies to the masses just because they assume they are thick? like the brain chemistry stuff on anti-depressants. A spoonful of lies hey
 
patients felt they had to work hard at being credibly ill in the eyes of others so as to avoid stigmatisation, or the spoiling of their identity (Goffman, 1963).​

It's just the feels at work here, folks. Nothing much to see, move along.

I wonder why patients might 'feel' that way? Couldn't possibly be because that is how the world really views and treats us, and how we have to respond, continuously, to try to manage the failure of others to respond in a constructive, or at least no destructive, manner?

Far from helping destigmatise, such mischaracterisation and underhanded downplaying only makes it worse.

And who is responsible for society having that view of us, dear medicine?

But The Power of the Narrative!

amirite?
 
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