“It’s quite a dark, long journey to the light at the end of the tunnel”: a qualitative study of [children with long COVID], 2026, Alexis-Garsee et al

[forestglip]

“It’s quite a dark, long journey to the light at the end of the tunnel”: a qualitative study of children’s experiences of living with Long COVID

Alexis-Garsee, Camille; Payne, Nicola

Objectives
The COVID-19 pandemic had a significant impact on global health, with some individuals experiencing long-term health effects known as Long COVID. This study explored the lived experiences of children with Long COVID, providing further insight into the impacts and needs within this group.

Methods and Measures
Semi-structured interviews, facilitated by children’s drawings, were conducted with 15 children. Thematic analysis was used to analyse the data.

Results
Four themes were identified: (1) ‘I feel completely different’: the physical and emotional burden of Long COVID (2) ‘Like the buzz of people speaking and I can’t concentrate’: education challenges created by Long COVID, (3) ‘I’m on my third friend group since I’ve had COVID’: disrupted relationships and fractured connections and (4) ‘What can I do now to get myself better?’: managing life with Long COVID.

These findings reveal a narrative of loss and change during key developmental periods.

Conclusion
This research illustrates the life-altering impact of Long COVID on children across many domains. Despite these challenges children were hopeful for the future.

A multi-faceted approach to management is needed, including utilising technology to aid self-management strategies such as pacing and to support social connection, as well as psychological support and school adjustments.

Web | DOI | PDF | Psychology & Health | Open Access

 

[DHagen]

Did someone find a light at the end of the tunnel? I was starting to think we must be in a mine shaft.

 

[Hutan]

Furthermore, only a few offered psychological support such as counselling, as shown in Ed’s quote:

I go into a lower room and there’s the Counsellor and then her student. And they talk about what’s happening for me with Long COVID. I tell them. So, it’s a bit like this. But they tell me what I can do to improve. (Ed, aged 9)

I'm not sure that 'being told what I can do to improve' is useful psychological support.

Some children also tried to see positive aspects of their current circumstances, as shown by Angel:

Yes, just like that, but with the knowledge that you will get out, because this isn’t a permanent thing, or even if it is, it’s good because I can sympathise with people and help them as well. (Angel, aged 14)

As discussed earlier, some children worried about their prognosis, especially because there was no indication of when they would get better. However, they also reported positive thoughts and were hopeful about the future, including returning to a place of ‘normality’, re-engaging with education and extra-curricular activities, and eventually achieving their future goals.

I’m sort of hopeful that it’s going to go away eventually and it sort of feels like you know, before I got COVID, it sort of felt like it was slowly nudging out, nudging away from me, but yeah, for the future, I’m hopeful for the future but I definitely feel like some day, maybe a couple of years or maybe a year, I’ll pretty much be like completely better. I’ll just be able to get on with my life. So, you know, I’m very much hopeful for the future. I’ve got like, you know, I haven’t got any major plans for life yet but you know. Definitely hopeful about Long COVID. (Henry, aged 14)

It's quite clear that the young people are hoping for the best. So much for the brain retraining idea of negativity and hopelessness keeping people ill.

I'm not too sure how qualitative studies like this help. I suspect they tend to preach to the converted, and get ignored by the people who really need to read them. But, this is a reasonable study.

The title bothers me though, it's like the authors had to spin the situation positively. It's admirable that the young people are still hoping for things to turn out well. But, the interpretation that needed to be in this paper and in the title, what the academic audience needs to hear, is that this is a terrible situation for these young people, that everything is actually not ok, and that we can't sit back complacently and expect things to be ok.

It feels a bit like the young people are the ones comforting the academics here, and perhaps their families too.

 

[Sean]

So much for the brain retraining idea of negativity and hopelessness keeping people ill.

I want those pushing that particularly toxic misrepresentation to explain how the hell people kept hanging on through years before diagnosis, especially prior to the internet age and much wider knowledge generally of ME/CFS.

I got sick in 1984, and was not diagnosed until 1988. I had not even heard of ME/CFS before then. That was pure hell trying to survive such complete uncertainty and any useful understanding of how to deal with it. And I know I am not alone in that experience.

If that does not demonstrate the most profound resilience and some kind of hopefulness for a better future then what the hell does satisfy their definition of it? The fact that is a very stressful and traumatic experience does not in any way justify such a framing.

These clowns are just making shit up about us from literally nothing. The sheer cruelty of their complete fabrications and gaslighting is unbelievable. And it is not getting better.

It feels a bit like the young people are the ones comforting the academics here, and perhaps their families too.

Exactly what it is. Them trying to justify it all to themselves and avoid facing up to the utterly appalling reality of their own behaviour and its brutal consequences for us, to this very day.

I am so tired of having mollycoddle these snowflakes just to even survive their bloated egos and avoid being punished even more for reminding them by my mere existence of their grotesque failures as both professionals and human beings.

 

[dratalanta]

“this isn’t a permanent thing, or even if it is, it’s good because I can sympathise with people and help them as well”.

What a repellent thing to teach a teenage girl (of course it’s a girl): that her being permanently disabled would be good because she can use her suffering to serve the needs of others.

These people should be banned from working with children. It is conversion therapy. If adults wish to expose themselves to this, that is their choice. Children should never be put through it.

The message to these kids should be: Your lives matter. Your health matters. You have been, and continue to be, shockingly let down by adults who indulge their vanity over helping you. And to conceal their incompetence, they teach you to thank them for their negligence and to blame yourselves for their failures. But there are adults who are doing real science. They need funding to get answers.

I became ill in early childhood and have lost my entire life, almost all of it stuck in bed. I am now 50. The thought of yet another generation being sold false hope and pressured to follow “treatments” that make you sicker, as I was, is horrifying.

 

[rvallee]

These findings reveal a narrative of loss and change during key developmental periods.

No they don't. They reflect blatant negligence and expert failure at all levels. All of this is derived from the problem of chronic illness, and refusing to address that is why there is so much loss. The focus is always on the patients, the wrong way around, to put all the blame on us, when the whole failure comes from above, from failing systems and incompetent professionals claiming expertise where they don't have any.

 

[Sean]

It is conversion therapy.

This.

I became ill in early childhood and have lost my entire life, almost all of it stuck in bed. I am now 50. The thought of yet another generation being sold false hope and pressured to follow “treatments” that make you sicker, as I was, is horrifying.

Similar story here, sick at 20, now in my early 60s, with nothing more than a completely destroyed, humiliated, and wasted life to show for it.

The very real prospect of it happening to another generation all over again, maybe even worse, after everything that has been exposed over that time about the real story behind this brutal horror show, is just sickening, despair inducing, and enraging beyond words.

Yet, to this day, those responsible for it are still being protected from any meaningful accountability and restraint, allowed to go right on doing it, and lavishly rewarded for their sins.

 

[Axel]

When I was 11, I told myself that I’d know more by the time I was 40 (or in 40 years’ time – I can’t quite remember which), and I gave up a number of things to preserve me. I’d hit a brick wall and didn’t even realise it was an illness, but some sort of unconscious calculation gave me a fairly accurate timeframe.
These children know that things are changing and that there may not be much time left. Now it’s a matter of not letting them down on the scientific side and its funding.
The rest is just empty talk.