A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People, 2024, Connor et al

A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People

Abstract
Long Covid is the continuation or development of symptoms related to a SARSCoV2 infection. Those with Long Covid may face epistemic injustice, where they are unjustifiably viewed as unreliable evaluators of their own illness experiences. Media articles both reflect and influence perception and subsequently how people regard children and young people (CYP) with Long Covid, and may contribute to epistemic injustice.?

We aimed to explore how the UK media characterises Long Covid in CYP through examining three key actor groups: parents, healthcare professionals, and CYP with Long Covid, through the lens of epistemic injustice. A systematic search strategy resulted in the inclusion of 103 UK media articles. We used an adapted corpus-assisted Critical Discourse Analysis in tandem with thematic analysis. Specifically, we utilised search terms to locate concordances of key actor groups.

In the corpus, parents highlighted minimisation of Long Covid, barriers to care, and experiences of personal attacks. Mothers were presented as also having Long Covid. Fathers were not mentioned once. Healthcare professionals emphasised the rarity of Long Covid in CYP, avoided pathologizing Long Covid, and overemphasised psychological components. CYP rarely were consulted in media articles but were presented as formerly very able. Manifestations of Long Covid in CYP were validated or invalidated in relation to adults. Media characterisations contributed to epistemic injustice. The disempowering portrayal of parents promote stigma and barriers to care. Healthcare professionals' narratives often contributed to negative healthcare experiences and enacted testimonial injustice, where CYP and parent’s credibility was diminished due to unfair identity prejudice, in their invalidation of Long Covid. Media characterisations reveal and maintain a lack of societal framework for understanding Long Covid in CYP.

The findings of this study illustrate the discursive practices employed by journalists that contribute to experiences of epistemic injustice. Based on our findings, we propose recommendations for journalists.

https://www.medrxiv.org/content/10.1101/2024.04.13.24305152v1

 

There is an article in the hard copy of the Times today, 17/4/24, entitled

"Parents accused of faking their children's long Covid"
by jessica Rawnsley, with examples of epistemic gaslighting.

I haven't been able to find a copy online which is a shame because it draws on issues including ME (just ME note, no expansion into CFS which I think is a step forward: it does add myalgic encephalomylitis in brackets), the Tymes Trust and Dr Nigel Speight.
There is a reference to history repeating itself in that this has been happening to children with ME which is similar to long covid in terms of its symptoms.

I'll try to post a photo of the article. The file is too large. Umm. I'll post this and edit in extra information, hopefully an online copy.

edit: still doesn't appear to be an online copy. If anyone technologically minded takes the Times, please could you consider posting a photo of the article. It's on page 4. I am flat in bed after uncomfortable hospital treatment yesterday. Also in deep PEM which may get worse so it's not the time to expand my technical skills.

 

I can't find it online either, but here is an image from page 4 of the print edition:

 

Thank you @Dx Revision Watch.

 

Perhaps it will be online tomorrow.

 

You're welcome, Binkie4.

 

Good comment from Dr Speight.

 

Cerebra reported a few years ago on how often the parents of disabled children get accused of FII after they seek the support they're legally entitled to: https://cerebra.org.uk/download/institutionalising-parent-carer-blame/

 

Still can't find yesterday's Time print edition article "Parents accused of faking their children's long Covid" on the Times website.

 

Also by Dr Kane.

Two quotes in a row from sympathetic doctors that are frustrated by how the status quo lets down patients, that’s reassuring to see.

 

I can’t find it either. I have a (very cheap) sub.

 

That was pretty hard-hitting in an understated way. This is the way massive scandals are talked about. I appreciate that Kane put it as "the default belief". It's never been anything more than that: a belief. A belief about illness. A very unhelpful belief about illness. About other people's illnesses they can't explain, and for which they refuse to consider the nature and cause of. Oh, the irony. But it was always projection, so it's not surprising.

I'm still baffled at the reasoning here. Not that there ever was any. This is basically describing completely delusional behavior, to pursue something so demoralizing where there is not a single benefit to be had, and yet there is obviously no evidence that we are any delusional, and it makes even less sense for parents to do this to their child.

Like everything psychosomatic, it makes sense if you don't think about it, and it falls apart completely at the smallest bit of reasoning. Pretty much like most conspiracy theories.

 

ME Association has posted a better quality image than mine:

https://twitter.com/user/status/1782073074667356436


ME Association
@MEAssociation

@JrRawnsley
From The Times, 17/4/24 - includes substantial quote from Dr Nigel Speight, hon paediatric adviser to The ME Association #mecfs #LongCovid #MyalgicEncephalomyelitis If necessary, click on the image to read the full story.

 

Merged thread

image copied from MEA facebook page. Article apparently in print edition 17/4/24

 

This is appalling. Doctors really can't cope with someone not believing them and asking for a second opinion. Why are they so arrogant!? Medical practice and training is simply not good enough for anyone to decide that doctors can never be wrong. With regard to undertaking my own research why should I believe or trust people who don't believe or trust me! As for using private clinics, in many countries private treatment is all there is. The NHS is not just on its knees, it is flat on its back with a dozen carving knives sticking out. So if people are desperate enough to pay for a private clinic it is nobody else's business!

 

I know right. I was actually glad to see it in print, because when i told someone close to me about them using such things to discredit paitents/mothers of patients, they were incredulous, totally disbelieving infact.

 

Now published as —

A critical analysis of UK media characterisations of Long Covid in children and young people
Chloe Connor; Michael Kranert; Sara Mckelvie; Donna Clutterbuck; Sammie McFarland; Nisreen A. Alwan

Long Covid is the continuation or development of symptoms related to a SARSCoV2 infection. Those with Long Covid may face epistemic injustice, where they are unjustifiably viewed as unreliable evaluators of their own illness experiences. Media articles both reflect and influence perception and subsequently how people regard children and young people (CYP) with Long Covid, and may contribute to epistemic injustice. We aimed to explore how the UK media characterises Long Covid in CYP through examining three key actor groups: parents, healthcare professionals, and CYP with Long Covid, through the lens of epistemic injustice.

A systematic search strategy resulted in the inclusion of 103 UK media articles. We used an adapted corpus-assisted Critical Discourse Analysis in tandem with thematic analysis. Specifically, we utilised search terms to locate concordances of key actor groups.

In the corpus, parents highlighted minimisation of Long Covid, barriers to care, and experiences of personal attacks. Mothers were presented as also having Long Covid. Fathers were unmentioned. Healthcare professionals emphasised the rarity of Long Covid in CYP, avoided pathologising Long Covid, and overemphasised psychological components. CYP were rarely consulted in media articles but were presented as formerly very able. Manifestations of Long Covid in CYP were validated or invalidated in relation to adults. Media characterisations contributed to epistemic injustice. The disempowering portrayal of parents promotes stigma and barriers to care. Healthcare professionals’ narratives often contributed to negative healthcare experiences and enacted testimonial injustice, where CYP and parents’ credibility was diminished due to unfair identity prejudice, in their invalidation of Long Covid. Media characterisations reveal and maintain a lack of societal framework for understanding Long Covid in CYP.

The findings of this study illustrate the discursive practices employed by journalists that contribute to experiences of epistemic injustice. Based on our findings, we propose recommendations for journalists.

Link | PDF (PLOS Global Public Health) [Open Access]