Qualitative evaluation of the Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN REGAIN, 2025, Seers, McGregor+

[SNT Gatchaman]

Qualitative evaluation of the Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN REGAIN randomised controlled trial RCT: ‘you are not alone’
Kate Seers; Vivien P Nichols; Julie Bruce; Stuart Ennis; Peter Heine; Shilpa Patel; Harbinder Kaur Sandhu; Martin Underwood; Gordon McGregor

BACKGROUND
This qualitative evaluation was embedded in the Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN (REGAIN) study, a randomised controlled trial (RCT) for those with post-COVID-19 condition (‘long COVID’) after hospital admission for COVID-19, comparing weekly home-based, live online supervised group exercise and psychological support sessions with ‘best practice usual care’ (a single session of advice).

OBJECTIVE
To increase our understanding of how and why the REGAIN programme might have worked and what helped or hindered this intervention.

DESIGN
A qualitative evaluation which utilised interviews with participants and practitioners delivering the intervention. Framework and thematic analysis were used to analyse the findings.

SETTING
England and Wales, UK.

PARTICIPANTS
Adults discharged from National Health Service (NHS) hospitals at least 3 months previously after COVID-19, with ongoing physical and/or mental health sequelae.

RESULTS
Twenty intervention participants, 20 control participants and five practitioners were interviewed. The themes from the group support sessions were: (1) you are not alone; (2) sharing experiences and addressing worries; (3) gaining new perspectives; (4) hope for progression; (5) peer support and bonding; (6) integration of facilitation skills; (7) modified activity pacing and goal setting, and (8) giving participants structure. The themes from group exercise were: (1) monitoring and modification of the online exercise; (2) catering for differing abilities; (3) feeling safe and confident to exercise; (4) progression of fitness; (5) optimal timing in the recovery trajectory; (6) group effect; (7) initial apprehension about exercise group; (8) gauging exercise capabilities; (9) translating exercises into life; and (10) on-demand supplementary videos. The 1:1 consultation sessions revealed patients needed to tell their stories.

CONCLUSION
Being listened to and being understood by someone ‘who got it’ was very important to people with post-COVID-19 condition. The group sessions of both exercise and psychological support were valued by participants, working together, and learning from each other in the face of a new disease within a global pandemic.


Link | PDF (BMJ Open) [Open Access]

 

[SNT Gatchaman]

Gives some insight into Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition REGAIN study: multicentre randomised controlled trial (2024, BMJ)

Feeling safe to exercise overcame fear avoidance and fostered confidence to try.

We felt cared for. I didn’t feel like we were asked to do anything that our instructor didn’t think we were capable of all the way through, which, again, I felt quite safe.

I think the biggest impact for me was overcoming my fear of exercise in a way that was gentle and taking into consideration my physical well-being or lack of well-being. So, yes, that was the biggest help…I could see that I can manage some exercise, and I could see that it actually helps me feel more energetic.​

Some participants felt they had progressed in differing ways.

I think we started the gentle exercises and then we upped the pace, so probably, you know, just take that message, you start small and gradually build up. Don’t push yourself or else you’ll set yourself (up)to fail, I think. So, yes, just gentle.

And that’s why with the group sessions every week even I thought, ‘Oh, you struggled with that the last time and I’m not as bad this time.’ So, yeah, it put my mind at ease and it made me realise, you know, don’t be scared of getting breathless ‘cause each time you do do something it is going to get better. It changed my mind-set and made me get up and do things…​

Optimal timing in the recovery trajectory
Practitioners felt that some participants came to the tudy[sic] at the optimal time for them. Others were considered to be past the point of it being relevant or useful for them as they had recovered sufficiently to be able to return to most of their normal activities

But REGAIN just carried on what I wanted to do, so it was good. But the thing is I had come to a point where I needed something so REGAIN was helpful.…Yes. If I was in it before I would not have done it because I could not even walk…And being able to have someone that you can reach out to is, I think it is essential at this stage, I think.​

 

[SNT Gatchaman]

On the "plus" side at least they took note of prior criticism —

The timing of this study early in the pandemic meant that it addressed the needs of hospitalised patients from the early days of COVID-19 and post-COVID-19 condition, which may represent a small proportion of the overall current population with post-COVID-19 condition, thus limiting the generalisability of the findings. The design of this qualitative evaluation did not allow for detailed collection of data (eg, undertaking interviews) from nonattendees or those who dropped out, so we do not understand in detail why people did not attend or dropped out of the study.

 

[bobbler]

Qualitative evaluation of the Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN REGAIN randomised controlled trial RCT: ‘you are not alone’
Kate Seers; Vivien P Nichols; Julie Bruce; Stuart Ennis; Peter Heine; Shilpa Patel; Harbinder Kaur Sandhu; Martin Underwood; Gordon McGregor

BACKGROUND
This qualitative evaluation was embedded in the Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN (REGAIN) study, a randomised controlled trial (RCT) for those with post-COVID-19 condition (‘long COVID’) after hospital admission for COVID-19, comparing weekly home-based, live online supervised group exercise and psychological support sessions with ‘best practice usual care’ (a single session of advice).

OBJECTIVE
To increase our understanding of how and why the REGAIN programme might have worked and what helped or hindered this intervention.

DESIGN
A qualitative evaluation which utilised interviews with participants and practitioners delivering the intervention. Framework and thematic analysis were used to analyse the findings.

SETTING
England and Wales, UK.

PARTICIPANTS
Adults discharged from National Health Service (NHS) hospitals at least 3 months previously after COVID-19, with ongoing physical and/or mental health sequelae.

RESULTS
Twenty intervention participants, 20 control participants and five practitioners were interviewed. The themes from the group support sessions were: (1) you are not alone; (2) sharing experiences and addressing worries; (3) gaining new perspectives; (4) hope for progression; (5) peer support and bonding; (6) integration of facilitation skills; (7) modified activity pacing and goal setting, and (8) giving participants structure. The themes from group exercise were: (1) monitoring and modification of the online exercise; (2) catering for differing abilities; (3) feeling safe and confident to exercise; (4) progression of fitness; (5) optimal timing in the recovery trajectory; (6) group effect; (7) initial apprehension about exercise group; (8) gauging exercise capabilities; (9) translating exercises into life; and (10) on-demand supplementary videos. The 1:1 consultation sessions revealed patients needed to tell their stories.

CONCLUSION
Being listened to and being understood by someone ‘who got it’ was very important to people with post-COVID-19 condition. The group sessions of both exercise and psychological support were valued by participants, working together, and learning from each other in the face of a new disease within a global pandemic.


Link | PDF (BMJ Open) [Open Access]

I’m suspecting massive selective hearing there

being listened to - by medical professionals when they report harm - and it being heard and taken on board was important no doubt

and I have a horrible feeling we’ve got the twist and callous indifference of pretending that means other patients listening to them and fake pseudo psych is the solution when you don’t al want to listen at all actually because you certainly aren’t going to change to make your treatment safe and hear any nuance in feedback

this in itself is why it’s clear it not only needs objective measures long-term only (to prevent the coercion short-term by those wanting to force results at the expense of long term disability) but probably it needs independent assessors who are from totally different areas so they can’t be conflicted at all ie not the same region geographically and not a near enough discipline career paths could have a hierarchy cross-over

outside of this stuff organisations know they have to get independent market research agencies in if they want anyone to even try and belief it (although pressure can be applied there etc)

You can’t force people to hear but you can at least not allow them to pretend what was actually said was different to what was meant

 

[rvallee]

They want to give the impression with the "you are not alone" that the participants felt that the study made them feel this way, but what they actually said is "there are a lot of people suffering from this, I am not alone suffering from this bizarre illness most people are content to dismiss as fake". From LC forums, this is also roughly the same message everyone has, they are so grateful to not be isolated with this illness, because medicine is completely useless at helping them.

Which makes the decades of forced isolation, of bluntly telling people that they should avoid any communication with other patients, even though it's the only source of support, basically evil. And still is. These clinics add absolutely nothing and the best they can is simply repackage what the patient communities have told them for decades, in the absolute best case.

All of this is nothing but empty 'potential' of a "this would be great if it worked, but it doesn't" way. They hear the words but completely miss their meaning:

And so that that traditional goal setting model didn't really fit that

I see this so often in comments, how people think the treatment was somewhat helpful, but they did it differently.

If you want to make it easy, sit down and do it. If you want to make it a little bit harder on yourself we’ll do it like this.’

It's all completely self-managed, so what do those professionals even add? Nothing at all.

Don’t push yourself or else you’ll set yourself (up)to fail

Pushing has literally been the model for decades, with the 'experts' literally insisting it's the secret ingredient. It doesn't work. They either don't care or don't understand, or both.

Did REGAIN make a difference? Control participants felt they were provided with guidance, they were glad to help others, and appreciated talking to someone who listened. One person felt they were already doing everything suggested so for them it did not make a difference

Where in any of this does this even make the suggestion that the therapists here did anything more than potted plants?

all comments about the REGAIN practitioners were positive, that they were informative and friendly and listed to the participant. They were reassured they were on the right track, the need to go slowly with their activities, but to increase a bit if they were able. Discussions about pacing were seen as helpful. Discussing their experiences provided a sense of validation.

This is as inane and devoid of substance as most sports commentary. "Well, Jim, our local sportsball team could score more points, and win, or score fewer points, and possibly lose. It is what it is." But more than anything it screams to a massive problem in evidence-based medicine relying on subjective self-reports: they only need to show up for work and get 3 stars. That's the floor. Almost everyone grades those services on a curve they would never do for anything else, a 3/5 is the usual equivalent of a 1/5. This could be a fully theatrical process and it'd still get positive ratings. This is a huge problem because most such assessments only ever get an average rating, which is the default 0 that anyone can achieve by literally only showing up.

 

[Peter T]

Where in any of this does this even make the suggestion that the therapists here did anything more than potted plants?

I am a great advocate of potted plant therapy. I could not have got through the worst of my ME without my house plants, though it is something of a measure of my health whether I manage to water them myself or if I have to get someone else to do it for me.

 

[rvallee]

Thinking a bit more, I can't figure out the point of this paper. It's completely useless. Not even 20 people are going to read it, and that includes everyone involved in its production, review and publication. Who is even the target audience? What useful anything does it add?

It's looking a lot like HCPs are being incentivized to participate into garbage clinical studies like this by being handed multiple publications to pad their resume. It simply serves no useful purpose.

 

[Sean]

Which makes the decades of forced isolation, of bluntly telling people that they should avoid any communication with other patients, even though it's the only source of support, basically evil. And still is.

Very cruel.