Trial Report Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue, 2023, Hersche

[Tom Kindlon]

Free fulltext:
https://www.tandfonline.com/doi/full/10.1080/09638288.2023.2242783

Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue: a feasibility study with a pre-post design

Ruth Herschea , Andrea Weisea , Beate Hummelb and Marco Barberoa

a Rehabilitation Research Laboratory 2rLab, Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland;
bRehabilitation Center Basel (REHAB), Basel, Switzerland

Purpose
Persons with post-COVID condition are a growing population requiring support returning to everyday life. Energy management education (EME) is a group self-management intervention based on energy conservation and management strategies delivered by occupational therapists. Data on the effectiveness of EME in persons with long COVID-related fatigue still need to be provided. This study aims to investigate procedural and methodological parameters to plan a future study analyzing the effectiveness of EME in individuals with post-COVID-19 conditions.

Materials and Methods
A pre-post design was used. The procedural data was collected regarding eligibility, reasons for participation decline, dropout, and follow-up rates. Changes in self-efficacy in using energy management strategies, fatigue impact, competency in daily activities, and quality of life were collected three times. Implemented behavior strategies at five months from EME were documented.

Results
During five months, 17 of 30 eligible participants were included in the study. No dropouts were registered during the intervention period. The follow-up response rate was 70%. The effect size was large in three out of four outcomes post-intervention, with a tendency to increase at follow-up.

Conclusions
This study demonstrated the feasibility of study procedures and reported promising effect sizes for EME that should be further researched.

IMPLICATIONS FOR REHABILITATION

• Persons with post-COVID condition are a growing population requiring support returning to everyday life.
  
  
• Energy management education (EME) is a group self-management intervention feasible in persons with long COVID-related fatigue.
  
  
• The data showed a large effect size in fatigue impact, self-efficacy in performing energy management strategies, and competency in daily activities.

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Intervention
EME teaches participants to manage their available energy and to achieve a satisfying and meaningful daily routine despite fatigue. Participants understand the factors influencing their energy levels and the skills to manage their energy using behavioral strategies (e.g., pacing, planning, prioritizing activities, optimizing the environment, and adopting ergonomic behaviors). Subsequently, they identify and implement tailored behavior modifications and adapt their habits and routines accordingly. According to Wang, predictors of engagement in energy self-management behaviors include self-efficacy, outcome expectations, and knowledge about factors that influence symptoms [Citation19].

EME was delivered once a week by a trained OT. The intervention started with an individual session lasting 45 - 60 min, followed by five group sessions with a maximum of five participants (each session lasting 90 min). After the group sessions, there was another individual session lasting 45 min. The intervention concluded with a booster mail sent eight weeks after the seventh session (refer to ).

The EME manual provides detailed content and suggestions on how to lead the intervention. The EME workbook for participants provides information and working tools used during and between the lessons.

 

[Amw66]

60 mins and 90 minutes are a long time to concentrate.
Add in travelling and this is probavly not reaching a cohort who need it

 

[Sean]

Still full of assumptions about how we just need to be 'educated' in managing it all by 'experts', and that this will lead to a return to normal life.

Still trying to apply old failed rehabilitative approaches. The paradigm shift is going to take a while longer to sink in.

Exhibit A: The intervention started with an individual session lasting 45 - 60 min, followed by five group sessions with a maximum of five participants (each session lasting 90 min). After the group sessions, there was another individual session lasting 45 min.

 

[rvallee]

The group format is completely inadequate for this. And especially hypocritical when this kind of holistic stuff is always sold as personalized. You literally cannot do both. There is no need for in-person presence either, and returning to normal life isn't always the goal. If it's not understood that some need to simply manage and hold on, possibly for an indeterminate period of time, it sets the whole thing wrong.

I'm sorry but this is just about creating easy jobs for therapists, it has nothing to do with helping patients. Even the way it's written shows how lazy it all is, that this isn't actually research, they've already sold the product when they wrote the very first word of it. Nothing in this is aligned with what patients need. Professionals are still badly in more need to understand this stuff than most patients. If anything, when patients report the harsh reality they might as well be talking to walls. We should be teaching them this stuff before they can even think about doing any of this.

Also:

Over a period of five months, 17 out of 30 eligible subjects agreed to participate in the study.

This doesn't look too feasible to me if barely half agree to participate. In fact it explicitly looks inadequate. There are no details about reasons to decline, but they probably have to do with... lack of energy. Which is astounding and completely tone-deaf.

Just stop funding this copy-paste low-quality junk and do real scientific research, damnit. Nothing else will change the outcomes, the rest is basically to stop denying and listen to what we tell them. We've told them all this stuff for decades already, and they turn around, package it and sell it as a product. Just awful.

 

[bobbler]

The group format is completely inadequate for this. And especially hypocritical when this kind of holistic stuff is always sold as personalized. You literally cannot do both. There is no need for in-person presence either, and returning to normal life isn't always the goal. If it's not understood that some need to simply manage and hold on, possibly for an indeterminate period of time, it sets the whole thing wrong.

I'm sorry but this is just about creating easy jobs for therapists, it has nothing to do with helping patients. Even the way it's written shows how lazy it all is, that this isn't actually research, they've already sold the product when they wrote the very first word of it. Nothing in this is aligned with what patients need. Professionals are still badly in more need to understand this stuff than most patients. If anything, when patients report the harsh reality they might as well be talking to walls. We should be teaching them this stuff before they can even think about doing any of this.

Also:

This doesn't look too feasible to me if barely half agree to participate. In fact it explicitly looks inadequate. There are no details about reasons to decline, but they probably have to do with... lack of energy. Which is astounding and completely tone-deaf.

Just stop funding this copy-paste low-quality junk and do real scientific research, damnit. Nothing else will change the outcomes, the rest is basically to stop denying and listen to what we tell them. We've told them all this stuff for decades already, and they turn around, package it and sell it as a product. Just awful.

Agreed.

And yipeee!! another 'trial' that is using an implicit filter for both recruitment and then drop-out of having sessions that people have to be well enough to travel to and find it doesn't make them so ill in length there is no point them going.

When is medicine going to realise the 'well those who can still do marathons don't currently have ME' isn't 'science'. They keep inadvertently repeating the same 'trial' as if it is 'an experiment' where they note the people who get to the end of their Krypton Factor obstacle course are the ones who [they think 'end up' but actually 'are'] are the fittest or 'most into that style' and finding it useful, not problematic and even beneficial therefore has no connection whatsoever with having the condition.

Maybe these people should be forced to do trials where they think oppositely and deliver what they want to then have to look back retrospectively and study the ones who dropped out first onwards to note the differences in illness severity or sureity - and then based on 'tailoring to the most in need' to find out how they should have adapted it and change what they offer based on when they dropped out and why.

That's what other organisations and sectors do e.g. that is why you are told what length to do a video based on audience and what situation or device or topic you are targeting. Not everyone throwing up an hour long drone with boring powerpoints and then only surveying those who watched to the end 'because everyone else is a drop-out' and assuming those who got to the end of your video must be not only the correct demographic but those who 'benefitted most'. From experience at least those in said industries know anyone who did watch it to the end is likely to be your competition, boss or someone who left in on by accident. So their surveys are done at the point of drop-out and will include lots of open-ended questions that often go to someone different to the creator. And will have some demographic Qs to filter because different groups will have different needs and reasons for clicking on it/expectations etc.

I have big big issues with how patient 'participation' is done in ME and the sector.

 

[bobbler]

Participants understand the factors influencing their energy levels and the skills to manage their energy using behavioral strategies (e.g., pacing, planning, prioritizing activities, optimizing the environment, and adopting ergonomic behaviors). Subsequently, they identify and implement tailored behavior modifications and adapt their habits and routines accordingly.

I'm glad to see 'optimising the environment and adopting ergonomic behaviours' being listed rathe than too much on dodgy motivating or psych terms like 'satisfying' (something that gives me the chills even though I acknowledge that people do need to be acknowledged that it's absolutely correct that someone's energy bank being less than 40% shouldn't mean that only goes on 'drudge' with no social or interaction or things that balance life to be OK)

I've bolded the last sentence because moving all your plates near the dishwasher or making sure that things you use regularly aren't somewhere you are bending down to lots - because do you really want all of your energy to go on that or is it better saved for things you can't adapt is one thing where I think 'yes OK that makes sense'. But on the other hand there are lots of 'ifs' and ambiguous interpretation issues we all know this can get twisted with by those with incorrect beliefs - and that includes the culture people bathe in with their daily life, not just the OT themselves.

I don't understand why the approach isn't OTs working with students on product design courses (and paying properly experience patients - ie ones who've been through the different severities and different lifestyles/committments with those different levels as experienced people, and definitely none who claim to 'have recovered after a few years of having a hard time' types) who could e.g. as part of their course be part of these services and taking videos of people's set-ups and issues at different levels (like noise or light sensitivities and intrustions) so that we can start having some mapping that makes adaptations and suggestions actually 'smart' and specific.

I suggest this because the end-result could then be not just recommendations but without needing the 'motivating talk' that patients then go away and work out what to do with, you could use something closer to video/virtual reality to impute the idea of do you really want to waste unnecessary energy on x, y, z that could be adapted so you have less of a deficit for things you can't adapt or would get more value from.

And because the video doesn't just need to be for the patient, but one that isn't about 'behaviours' of the patient but those around them who might actively try and frustrate those 'because they are stupid on the idea of normal, as if that means good' and all the other crappy ideological nonsense people get programmed into them without them realising.

And these could be forming the basis of much-needed courses in workplaces for employers, managers, employees, people on interview panels and HR and designing services to be used such as canteens and equipments and office design, colleagues so that they don't feel they have permission to 'pretend they don't understand' because it isn't convenient for them to not dump their work onto someone else and want to pretend their claiming 'I don't see why I have to do x when they don't' is a reasonable position [it isn't, and normally is being said about someone who has more than done their time doing that or picks up way more in other areas etc].

These should also be being used to educate any organisation that provides services or access-points so that councils, those running consultations, phone/email options for places that sell things and need to offer customer service can't pretend they don't understand the limitations of different levels of these conditions when designing how they do it and what it in place.

Anyway I don't like the term 'behaviours' as per the patient - it is loaded. And I think deliberately so. Techniques or approaches could have been chosen but behaviours is because they believe it has some sort of value or whatever involved and because of the awful behavioural school's influence.

I can understand resources are stretched but rather than hae social prescription with pointing to choirs and gardening there could be multi-disciplinaries backing-up these individuals of strong advocates who can get certain things done and heard for individuals so that their environment is changed, and designers who can genuinely hear the different individual voices of people with different types of ME and situation and tease out overlaps and suggestions. And something in-between that could be looking at the world-interface stuff, innovations for making tech more usable for those who are severe or having special phone support for those who might struggle and providing communication sheets for different industries and services that can be sent on different people's behalfs regarding disability needs or setting up adjustments. One big topic is how those who are severe or very severe or even moderate in difficult situations can access appropriate mattresses for example given the energy to try them. But these courses won't see and therefore hear from anyone who is in that situation with their current set-up acting as a filter.

 

[bobbler]

60 mins and 90 minutes are a long time to concentrate.
Add in travelling and this is probavly not reaching a cohort who need it

It's somethign akin to/like requiring those coming to a 'how to manage your diabetes better' session to eat a sugary meal that they supply, having made them attend 10-3pm with no other options, whilst they tell them to behave better on their sugar-eating.

It seems a very strange choice of mechanism for delivery to have for a trial