The importance of diagnosis from the perspectives of young people with Long COVID, their parents, and healthcare professionals 2025 Faux-Nightingale+

[Andy]

Abstract

Background
Long COVID describes symptoms persisting after an acute COVID-19 infection.

Aim
This study explores the meaning and importance of a Long COVID diagnosis from the perspectives of children and young people (CYP) with Long COVID, their parents, and relevant professionals.

Method
CYP and their parents were invited to interview from an initial cohort study. Professionals with experience of working with CYP or those with Long COVID were invited to a focus group. Interviews were carried out with four CYP with Long COVID (all female, aged 10–17 years); three interviews included a parent. Two focus groups were conducted with seven relevant professionals from varying disciplines. Data were analysed thematically using constant comparison techniques.

Results
Analysis identified the following themes: Diagnosis as a label; No diagnosis, no certainty; Diagnosis facilitate access. Stigma of Long COVID pervaded all themes. The diagnosis of Long COVID has different meaning and significance for parents and HCPs. Families described the diagnosis as a legitimisation of their experiences and a way to access support, but professionals questioned some ways that families use the diagnosis, focusing instead on appropriate treatment according to CYP’s needs.

Conclusion
For families, Long COVID diagnoses are important for validating and legitimising symptoms, removing uncertainty, and supporting access and participation, particularly in school. While these uses differ from those of healthcare professionals, understanding the importance of a Long COVID diagnosis to families may ensure effective communication, negotiation of an acceptable management plan, and ongoing support for this group.

Paywall

 

[Utsikt]

understanding the importance of a Long COVID diagnosis to families may ensure effective communication, negotiation of an acceptable management plan, and ongoing support for this group.

What is there to negotiate?

 

[Sean]

negotiation of an acceptable management plan,

Does the patient have the right to withdraw from 'negotiations', without being penalised?

 

[Jonathan Edwards]

negotiation of an acceptable management plan

That old 'patient centred approach' that isn't.
There is no negotiation, just an offer of the best options by the professional and a decision on which to try, or not, but the ill person.

 

[MEMarge]

Interviews were carried out with four CYP with Long COVID (all female, aged 10–17 years); three interviews included a parent. Two focus groups were conducted with seven relevant professionals from varying disciplines.

So, four CYP interviews, 3 of which included a parent.

Then focus groups with seven professionals.

and then clinicians complain that surveys of hundreds or thousands of pwME or LC are not important!

 

[rvallee]

Medicine: we require a diagnosis for every single thing we do, it's basically the entry ticket for everything, you cannot even enter the building without a valid ticket, and it has to be accepted by every person you see, and even then there is no guarantee beyond that.

Also medicine: why do people want a diagnosis?!!

Spoiler: we don't ever want one, you are the ones requiring it for every single thing, explicitly asserting that without a valid diagnosis, nothing will ever happen.

No diagnosis, no certainty

Actually, no, it's no diagnosis, no anything. No research. No support. No treatments. No thing. Nothing.

One day I'd really like to look at what medical schools teach about things that aren't explicit biology. I doubt it even adds up to a single sheet of paper, from the looks of it. The biology is top notch, but where it's lacking it's just disastrous.

What is there to negotiate?

Releasing the hostages?

 

[Sean]

Actually, no, it's no diagnosis, no anything. No research. No support. No treatments. No thing. Nothing.

And sometimes even when there is a diagnosis.

 

[SNT Gatchaman]

Published in Health Expectations

Perceptions and Significance of Long Covid Diagnoses From the Perspectives of Children and Young People With Long Covid, Their Parents and Professionals
Alice Faux-Nightingale; Benjamin Saunders; Claire Burton; Carolyn A. Chew-Graham; Glenys Somayajula; Helen Twohig; Victoria Welsh

INTRODUCTION
Long Covid, the patient‐preferred term, describes symptoms persisting after an acute Covid‐19 infection. Understanding the importance and meaning of a Long Covid diagnosis to children and young people (CYP), their families and professionals associated with their care can give insight into the way that these diagnoses are used across these groups to support care and needs of the patient. This study explores the meaning and importance of a Long Covid diagnosis from the perspectives of CYP with Long Covid, their parents and relevant professionals.

METHODS
CYP and their parents or carers were invited to interview following participation in an initial cohort study. Professionals with experience working with CYP with Long Covid were invited to participate in a focus group. Interviews were carried out with four CYP with Long Covid (all female, aged 10–17 years); parents were present at three interviews. Seven professionals with experience in the care of CYP or Long Covid participated in one of two focus groups. Data were analysed thematically using constant comparison techniques.

RESULTS
The three main themes presented are as follows: the importance of receiving a diagnosis, diagnosis facilitates access to support and perspectives of discordance between family and professionals. The diagnosis of Long Covid has different meanings and significance for parents and professionals. Families described the diagnosis as a legitimisation of their experiences and a way to access support, but professionals questioned some of the ways families use the diagnosis, focusing instead on appropriate treatment according to CYP's needs.

CONCLUSION
For families, Long Covid diagnoses are important for validating and legitimising symptoms, removing uncertainty, and supporting access and participation, particularly in school. While these uses differ from those of professionals, understanding the importance of a Long Covid diagnosis to families may ensure effective communication, negotiation of an acceptable management plan, and ongoing support for this group.

PATIENT OR PUBLIC CONTRIBUTION
Patients and the public contributed throughout this project and had input on the study design, topic guides, and dissemination of findings.

Link | PDF (Health Expectations) [Open Access]

 

[rvallee]

And sometimes even when there is a diagnosis.

It's really hard to evaluate the value of a diagnosis when its whole value is that it's supposed to lead to something. This has been done several times about various chronic illness diagnoses, and they're all missing the key ingredient that most other diagnoses have, some form of meaningful help being made available, which makes it almost impossible to properly assess.

Right now it's a bit like someone evaluating a car, which they won't own, and can't even test drive, or get inside. The car could be nice, but it doesn't do any of the things someone would need a car for.

So it's more like evaluating the idea of what it would mean for the car to 1) be available as a personal vehicle and 2) to actually work as a normal car. But it's all just concepts until the work is done by professionals, who mostly seem content with the idea of us imagining being able to have and use those cars, and that it should be good enough. Except it's never good enough, and they almost never ask relevant questions anyway.