Facilitators of and barriers to participation in Long COVID research: A qualitative analysis, 2026, Chu

[Dolphin]

Facilitators of and barriers to participation in Long COVID research: A qualitative analysis

Background Meeting recruitment targets in an expeditious manner is essential to the successful completion of any research project. However, despite the high prevalence and debilitating nature of Long COVID (LC), recruitment of participants into some LC studies has been challenging. Objective...

journals.plos.org

Facilitators of and barriers to participation in Long COVID research: A qualitative analysis

Lily Chu ,
Theodore Lucas Hollar,
Nancy Klimas,
Jeanne Bertolli,
Ana Lia Tamariz,
Aryan Lajevardi,
Ilya Pavlov,
Ana Palacio

Published: May 6, 2026

Facilitators of and barriers to participation in Long COVID research: A qualitative analysis

Background Meeting recruitment targets in an expeditious manner is essential to the successful completion of any research project. However, despite the high prevalence and debilitating nature of Long COVID (LC), recruitment of participants into some LC studies has been challenging. Objective...

doi.org

Abstract

Background

Meeting recruitment targets in an expeditious manner is essential to the successful completion of any research project. However, despite the high prevalence and debilitating nature of Long COVID (LC), recruitment of participants into some LC studies has been challenging.

Objective

We aimed to a) identify factors influencing participation in LC research among individuals who were infected by SARS-CoV-2 but had declined participation in a LC study and b) to compare these factors to those previously recognized.

Methods

Using a semi-structured guide, we interviewed thirteen people about their thoughts, experiences, and attitudes concerning participation in LC research. We imported interview transcripts into Nvivo 14 and analyzed them using thematic analysis. For coding, we used Charmaz’s coding scheme of open and focused coding within an application of the constant comparative method. Basic descriptive statistics were also deployed to supplement our qualitative analysis.

Results

Fifteen factors describe the facilitators and barriers mentioned by participants. The top three facilitators were Personal and social motivation, Incentives, and Familiarity and credibility of institutions involved with COVID-19; the top three barriers were Invasiveness, Social and political context, and Lack of time. Skepticism and infringement on participants’ daily lives served as major obstacles to participation while trust, personal factors, and administrative factors encouraged participation. The facilitators and barriers identified are similar to those recognized previously except that in the politically charged atmosphere surrounding the COVID-19 pandemic, trust was especially vital.

Conclusions

Many factors affect people’s decisions to participate in LC research but only some are modifiable by researchers. Building trust, offering incentives participants value, and removing logistical barriers may improve recruitment rates.

 

[Dolphin]

Some of these authors are known from the ME/CFS field.

 

[Felis Catus]

There was a period earlier into my illness where I often saw calls to fill in various questionnaires for research projects in psychology, sociology and similar. Quite frankly, I have been too ill to waste my capacity on something so pointless, not to mention the risk of the data being used to support dubious theories.

 

[rvallee]

Honestly my main personal barrier would always be: is it worth it? Is this team and project really worth me investing myself in it?

Because for the vast majority of studies, and especially almost all trials, the plain answer would be: absolutely not. But it's very hard to communicate to academics that their project is, well, crap. Crap research is clearly very fashionable.

I don't know who could do this work, of it they covered it in this paper, I'm too tired to look into it, but a lot of people got involved in LC research and left in disgust at how little value their input had, and at how the project overall ended up being a waste of time. People who are unlikely to get involved after such a disappointing experience.

Frankly I think that this is something that is actually a positive for everyone who isn't really interested in finding a "true" medical cause. They only want "yes patients" (as in "yes men", who will just tell them they're the prettiest in the land).

Imagine being involved in PACE as a patient representative, with all the promises of a true trial, with objective outcomes, something serious, the "definitive outcome", and seeing all this work being completely sabotaged in the end to produce a fraudulent piece of failure. Trust has been fundamentally broken, this is something the industry has to work to rebuild, but there is so little focus or interest in that.

 

[bobbler]

Building trust, offering incentives participants value, and removing logistical barriers may improve recruitment rates.

Given what I've seen of how misguided those in the medical and allied professions are via papers or initiatives they write

I think that needs to be firmed up instead to "being trustworthy" and "ensuring safety" but probably even more specific than that so that they get it needs some independent oversight to take away the possibility anyone could breach that and do harm even if it was 'by accident' or 'misunderstood/bad day'.

I agree that trust needs to be built but it needs to be done only based on a good hard look at what people are being asked to put themselves into situation-wise and then fixing anything that causes a risk or perceived risk to them health or access to any kind of service wise etc.


I think this is important stuff to be written, I'd be interested if anyone ever had the will to look up how many have been done genuinely from the ME community highlighting these basics (given we were under a pretty different regime maybe not)

But whilst I know you get nothing with vinegar I do think that under the guise of other peoples pretence of 'faux offence' and the like we risk our attempts at tact leaving things unsaid or said imprecisely to people who almost already read what they want into things.

And there are some of recent years very good people who have come into research which the most refreshing thing about it is you realise it isn't hard to see and we aren't speaking French and many of these things were very obvious because they will endeavour to actually provide safety etc.

So I think it is important to make it a list as a charter where there isn't fudging on these things, no 'tick-box' possibilities but some big specifics of what is needed to be trustworthy and (in order to build trust) also reduce risk even if they weren't that something bad could occur etc

because doing things badly is often the cheaper and lazier alternative (which leaves more opportunity to force the right result thru bad methods) that those doing the right thing then have to compete with for funding.

 

[bobbler]

I watch it a lot in group things too that we as a community are keen on being nice and collegial whilst forgetting that for example meeting and discussing something actually requires of us 'saying the thing' if we are basically representing or speaking for or over others. And it is our job to be asking the questions, and we are actually 'not doing our job' by sheeping along for collegiality or other reasons.

I know because I watched normal meetings of all types including governance and what they are supposed to be as the norm. You'd have been seen as might as well have not turned up if you weren't going to go through the awkwardness of having to speak up on the thing you've been asked about or need to say for your team. Or those leading such sessions believe that important discussion comes secondary to maintaining peace and not touching on things where people might seem to be saying how annoying x, y, z really is thereby setting off a group.

It is a difficult line but for this type of research I think it is only worth doing if you are going to properly do it if they want to be really helpful.


So combining these results, which are a start and I'd hope give ammunition to do a follow-up/next round to provide detail, I'd say there is a good starter basis for research putting meat on the bones to this but taking on board that they might want to built said trust/confidence and design the timings and methods to ensure participants are well-positioned to feel they can be really frank regarding the 'what do you need'.

For example in focus groups for other things I'd take examples of an (or many) existing or proposed in this case trial/experiment. As one round. - there is no reason why they couldn't come here to look at live examples and the exact authors count too as that is part of the context.

And give them it well before and if it is a real historical one then point them to links on it and let them research it and make notes on what would put them off and if they'd ever contemplate signing up for it but what questions they would be checking up on first etc.

There are all the theoreticals regarding this, but that isn't anything the same as watching the 'package' being quantified. As much as the 'definite no' issues to watch out for.


But you need to follow this advice above regarding making them safe to do such feedback frankly knowing there can and would be no repurcussions and probably the investigators testing and practising being in groups where they get feedback they don't like and maintaining their composure (because I've been there it is hard even though after 5mins it sinks in and you take on board the thing that hits hard but you know can change, it is instinctive to instead feel you want to defend yourself and say things like 'well we are tight for staff' etc)

Have they covered the 'type of incentive' ie there is the plain stuff like giving someone £20 for 30mins of their time. But for health stuff there is far more built into this territory. And people need to know how intense something is and will take out of them, data issues and so on. The old what's it worth needs to understand it isn't just our time as it is for normal people but the PEM and so on afterwards.

But another incentive is knowing that it isn't empty promises where you waste your time and energy saying really important things and it turns out noone was going to do anything with it, or worse how it got analysed intended to draw strange inferences from things.

And I think there are definite categories that are hinting at this but don't know whether it has hit home how egregious someone tricking a person into a study pretending it is biomedical and then distorting or twisting measures and how things are analysed to turn it into something that they always were gong to be making personality or behavioural claims is. And how common it is.

So the question (which perhaps also needs to be followed up with researchers going away and thinking what could an investigator actually do to reassure on some of these fronts/make sure it wouldn't be possible for this to happen) needs to be directly put of what is it that could indicate to someone this wasn't going to happen. I'm guessing that is what author and their history becomes a proxy for?