Pilot study of a parent-based intervention for functional somatic symptoms in children 2024 Etkin et al

Abstract

Objective
Functional somatic symptoms are associated with significant distress and impairment for children and their families. Despite the central role that families play in their children’s care, there is little clinical research to guide how parents can support their children with functional somatic symptoms and promote better functioning. To address this gap, we developed a parent-based intervention for functional somatic symptoms in children and obtained preliminary data on acceptability, feasibility, treatment satisfaction, and clinical outcomes.

Method
The intervention was adapted from SPACE (Supportive Parenting for Anxious Childhood Emotions), an evidence-based treatment for anxiety and related disorders in children. The intervention, SPACE-Somatic, was delivered to parents of 16 children (Mage = 14.50 years; 75% girls) with a range of functional somatic symptoms. Parents participated in seven weekly group sessions conducted via telehealth.

Results
We found that SPACE-Somatic was acceptable, feasible, and satisfactory to parents. There were significant improvements in several clinical outcomes from baseline to posttreatment, including children’s level of functional impairment, with some gains maintained at 3-month follow-up. Parents also reported improvements in their own stress and their accommodation of children’s symptoms.

Conclusion
This pilot study provides preliminary evidence that a parent-based intervention is viable and beneficial to children with functional somatic symptoms and their parents.

Paywall, https://academic.oup.com/jpepsy/advance-article-abstract/doi/10.1093/jpepsy/jsae092/7848527

 

I dread to read this in case it’s a programme teaching parents to gaslight/abuse-by-debying-reality-or-needs their genuinely really ill children and pile extreme unhappiness, alienation and what must be torturous impacts for humans into a vulnerable child who can neither escape or talk back nor will get better from it so will then be blamed for deterioration those others who should be behaving responsibly will then be directly causing

this trend is horrific and is starting to look worse than the scandals of psychology you are supposed to study as part of a degree so it is never repeated again for the harm and immorality of it

I can’t help but notice these areas target the most vulnerable in who they go for whether it’s a physical condition with extreme debility making people unsafe and also having been further alienated from protection by rumour mills and misinformation or looking for demographics that are less protected

it stinks and another thing we should have learned from other past scandals is to watch out fir ‘types’ or ‘areas’ who seek to zero in in the most vulnerable and indeed just realising, which we should know by today, when you’ve a sitting duck group of vulnerables and being wary of who/what that’ll attract if you don’t put in place protections - and ethics using experienced qualified patients who know what severe is and the vulnerability of being younger with it are a must to flag up where coercion etc can be used. I’m astounded at in general people getting away with sliming those who flag such issues

 

Does this not breach human rights? And on children… Terrible.
(I’m just going off the abstract I don’t have access to the article, but making the parents do an intervention to improve symptoms sounds pretty rough)

 

That makes sense. I didn’t know intervention could be used in a positive sense.

I thought it meant like “your alcoholism has gone too far, we’re intervening to make you stop”. Or here “your false illness delusions have gone too far, we’re intervening to make you stop”.

 

It is unfortunate that the article is behind a paywall.

I would want to know how they define functional somatic symptoms and how they establish that their subjects do not have other conditions? For example can we say be sure they have not swept up children with ME/CFS or Long Covid too.

Also given the evidence base for a lot of such treatments is fundamentally flawed can we be sure that their intervention reflects good practice or researchers’ personal beliefs? Can we be sure they do not include harmful advice such as pressuring children with ME/CFS to inappropriately increase activity or undertake exercise.

 

Exactly. They seem to be ignoring the fact that even according to psychologists there are about six completely different ways in which psychosocial states might impact presentation of symptoms - including the one from the overweight psychiatrist who said ME/CFS was middle aged women frustrated by having to look after children, health anxiety, hysteria, predictive coding disorders, malingering and of course Munchausen by parent.

 

From https://www.spacetreatment.net/

"What happens in SPACE treatment?

Parents who participate in SPACE will learn skills and tools to help their child overcome anxiety, OCD or related problems.

The treatment focuses on changes that parents can make to their own behavior, they do not need to make their child change.

The two main changes that parents learn to make in SPACE treatment are to respond more supportively to their anxious child and to reduce the accommodations they have been making to the child symptoms."

There doesn't seem to be any info there on SPACE-Somatic.

 

How is it possible to be "more supportive" and at the same time "reduce accommodations"?

 

Only has time for brief look.

Not read paper.

Teaching parents to support children to overcome:

"Some of the main anxiety problems treated with SPACE include:

Separation anxiety
Social anxiety
Generalized anxiety
Fears and phobias
Panic disorder and Agoraphobia
Selective mutism
Obsessive-compulsive disorder"

In some respects this could be quite useful. But if the child is anxious or mute because they are on AS spectrum, that'd be counterproductive. Harmful even.

As the diagnosis / criteria to meet FND is as wide as a barn door (depending on who is writing the article/which 'fashion' the clinic is following), this seems much more about a grab for more patients/resources rather than anything objectively helpful.

And we know that if an authority figure (doctor, hcp) confidently states black is white and 2 plus 2 = 5, then there will sadly be a group who will blindly follow this in good faith. Sadly, if you have a child with ME/CFS who for random reasons ended up with a FND label, then that could potentially be incredibly bad.

Sad that this is coming from Yale.

 

I don't fully know how to word this but (partly due to how it is sold, partly due to the inaccurate perception of those 'inside it') I'm getting the sense that there is a mis-thinking from a lot of both laypersons and medics that if this sort of thing offers a fix and all of those other cognitive dissonance things re: 'no harm no foul' that if in doubt this sort of thing is a sensible 'starting point' rather than going with actual diagnostic processes - try the one that is most likely to lead to a 'sorted/cure' (whereas ME/CFS, FND, ASD are 'ongoing') and then look into those other ones later.

I'm not even sure it is conscious, but it's just natural from a 'buyer behaviour' model perspective that people don't realise they are trained in as logic on choices. We all probably did it when we tried the whole exercise or push through - because hey what can you really do with the alternative which is .. well we all know what they leave us/people with there (and that in itself is 'nudge' theory in action isn't it?). I still feel my only real way out of my situation is if somehow someone finds I've got another disease (likelihood zero whilst we are labelled to not be looked into as we are a Pandora's box)

 

"Evidence-based" yet again turned into a joke, literally the equivalent of "some other like-minded people said so". But this makes about as much sense as using whipped cream to fix a plumbing leak. And again the very make-up of the study represents a filter effect as huge as doing a pragmatic trial of astrological healing would require people to think of astrology as a real thing. So it's not even randomized, in fact it's heavily selected.

Which is all only revealing of what the therapists are thinking. Not the sick children, and not the parents either. It has nothing to do with the patients. This is entirely about constructs imagined by the therapists as a substitute for reality.

We have seen many hundreds of such trials over the last few years. I don't remember a single feasibility/acceptability trial that wasn't deemed feasible and acceptable. It's so obviously a symbolic step, and especially so on interventions that consist mostly of appearing acceptable but are entirely devoid of any real substance. Which allows them to appear inoffensive, like a movie consisting of nothing but beige. No one would object to 2h of beige. No one would find it unacceptable or unfeasible.

Utterly useless, but feasible and acceptable. Which clearly have to be added to the list of terms that have been stripped of all useful meaning.

 

I think the idea that psychological / behavioural methods can improve / cure people (of FMS, FND, MUS, ME/CFS, ASC etc, etc - conditions that require largely understanding and management) is seductive to everyone - patients, family, parents, clinicians. Until that gets a reality check with something actually objectively helpful it'll hang around. It is often accepted with cognitive ease.

I went along with 8 weeks or so of CBT type intervention in 2004 when I was no longer well enough to work. I was genuinely curious as to what they would say. It was helpful - in so much that it was helpful to be listened too and so forth. On the last session I recall asking, something like: "So, when do I get better?" My therapist looked really shocked. I recall repeating this several times and getting upset. I could see my therapist who was not a 'specialist' was as flummoxed as me. She had been mis-sold the seductive nonsense too.

People want to be actively helpful. Less is more can be currently often more helpful. Until there is effective treatment or a re-diagnosis to something treatable.

 

So if I understand this correctly, the intervention is basically to pretend your child is healthy and wish their illness goes away?

In a way, abandoning your child and making them feel crazy for symptoms they can’t control. If denialism were a branch of medicine, it would be this FND/BPS/FSS stuff

 

And there is a strong line of serious questioning that needs to be made about it being plain as day there is a major ethical/informed consent issue going on due to for some reason there not having been a requirement that the harms /downside ie 'harm and foul' - specifically looking at those who turn out to have been 'mismatched' into it or done it based on this assumption because of this incomplete data.

People making a decision need to know the real chances it would help if they are in the pot of 'don't know if it is x or y or z' and the real chances it would harm. Instead they just get the stats based on trials where people aren't misdiagnosed for short-term outcomes not measuring harm.

And of course they often don't have choices, because there aren't good diagnosticians (and all sorts of judgements if they are offered something and don't accept) and some pathways are more 'in supply' than others on both treatments and diagnostics so are available now vs a very long wait.

Worse, because they've gotten away with this things now seem to have got out-of-hand to the point we have some who claim they work in psychology suggesting 'transdiagnostic' is such a thing as a treatment. But yes I'm sure they aren't measuring how well someone's autism or ME/CFS physical functioning turned out having been put through years of that vs those who had those conditions and received the correct approach.

That's the information that would allow both patients, parents, GPs, commissioners to have informed consent and make judgements on prevalence, demand and resources needed surely? Everyone is just assuming it's all fine if it is potentially acting like forcing everyone through physio or weight loss programmes to hide a waiting list for seeing an MSK specialist or have a scan - on the basis of being offered no other good options often, or incomplete data.

They'd never have ethical permission to do as 'controlled' and I think it wouldn't be natural anyway to chuck people deliberately with other diagnoses into the wrong treatment path, but I'm sure they have plenty of individuals who have been through this. If only they could treat them as reliable witnesses.

which would need to be very longitudinal, given the very essence of the brain and behavioural training (and even more pertinent when we are talking children so this meddling with a relationship might never fully repair and is happening during developmental stages for all sorts) sadly involves 'coercion' to say the right thing.

 

There is something important with studying this well by people who don’t have the wrong mindset (of don’t like what the respondent said then it must be madness) in what ended up happening symptom-wise too

because like you can have ‘reactive depression’ and as long as anxiety just has an arbitrary ‘amount’ of distress that doesn’t calibrate eg to someone hanging onto a bridge with one hand 50m up

the symptoms of me/cfs when someone is NOT allowed to rest eg forced thru sleep hygiene to the extent you can only have any sleep at all if you can make your body do it between 9pm-7am ‘or you miss out’ whilst also having no control of exertion like noise and exercise including cognitive

… well they aren’t going to be how we describe me/cfs currently- which is based on ‘we can’t do those’ and a clean world where someone isn’t in this dystopia so could have a few weeks of rest whenever they need it then do a walk and see when PEM hits. Well once someone has been chucked under this vile mindset that doesn’t happen. Hence a CPET type thing with measures could be really important actually

when people are being forced to do those and their body is getting worse and worse due to it and you are not permitted to stop any of them then we need to annotate - fir their sake - that it’s not ‘something else’ and there is a vile long list of things people are getting labelled with as they get more fragile that are actually inaccurate particularly because this area of psychology-medicine doesn’t care about ‘cause’really and certainly doesn’t listen to the poor person

so if they lose weight = needs to be forced and behavioural stuff is the only thing on their mind to do with that NOT is it someone with a disease being run into the ground as they have no sleep or rest due to imposing a regime in a condition whose implicit ‘thing’ is the body goes MORE haywire the more it is strait-jacketed in that way

where they look hagglers can’t speak right due to lack of sleep = look you are mad , but not taken out of situation where people let them rest as they need and speak to them at a fair pace snd give them time to answer questions.

THATS what abused me/cfs looks like not ‘can’t do a walk’ (which they blame on their physical condition due to not looking after themselves anyway)

unless we have this we are going to continue to see deliberately induced ill health where they still don’t stop imposing behavioural awfulness - and after all we can’t PROVE it’s that because even if they gave us two weeks of rest (which people in situations like this always can’t resist reneging on and still disturbing people thru) that’s not going to ‘cure someone in two weeks’ and yet that’s the kind of ‘prove yourself’ dystopian crap these kids will have thrown at them as sophism

 

I can't say for children, they don't tend to write on patient forums, but from reading tens of thousands of comments going back 4.5 years of Long Covid about having their illness and symptoms being psychologized, they all appreciate when health-care professionals instead simply admit that they don't know, and that about 90% or so know they are being bullshitted when they are presented with this version of things. As plainly and clearly as going on about Illuminati mind-control chips in vaccines, or whatever. It completely deflates any credibility those professionals have.

I doubt that it's any different with children, but they don't have the maturity to process this. And it creates real conflict in how they can then relate to authority, including their own parents, when they are so obviously bullshitting them. This is abuse, plain and simple. Like administering arbitrary disproportional punishment, as some people seem to think is a proper way of teaching children the right lessons about how the world really works.

For sure there is a number of people who accept psychological explanations. Almost all on the mildest end of things, or those who recovered quickly enough that they can feel that they, and their mindset, played a role in it. But really the vast majority don't just reject the explanations, they are fully aware that what they are told is a bunch of complete and total fabricated nonsense, worse than lies.

This will create a lot of behavioral problems. Ironically as a result of behavioral indoctrination based on the belief that the underlying problem is itself behavioral, by people who claim expertise on human behavior, yet clearly don't have any. It's actually hard to put together a worse combination of "experts failing miserably at the most basic part of their job" than this.

This wrecks families, causes children who will grow up resenting parents who may even have meant well. This is disgusting, this entire paradigm needs to be considered equal, in intent and purpose, to gay conversion therapy and included in banning the entire concept of behavioral adjustment. There is simply no way to do this safely, and the lack of safety actually encourages professionals to misbehave.

 

and 10 years from now they'll be able to say - see, we told you it was due to childhood trauma and trust issues, and it's not the therapist's fault, it's the parents. This is what abuse of trust looks like. The consent is given by the parents who then 'treat' the child who assents to the parents with no-one to complain to.

This received ethical approval.