Trial Report Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19, 2024, Angelhoff

Yes, it seems to be a sympathetic study.
Some excerpts that describe the study, or that people might find useful or interesting:


This was a qualitative study with an inductive and exploratory approach employing thematic analysis (Braun and Clarke, 2006, Braun and Clarke, 2019). The study was part of the Post COVID-19 in Kids (POCOKIDS) study, a larger multiprofessional research project aiming to examine, describe and understand biological, physiological, psychological, and social effects and consequences for the child and their family. The inclusion criteria for the POCOKIDS study were children and adolescents referred to the pediatric departments in the counties of Östergötland and Jönköping, Sweden, with symptoms affecting daily life more than eight weeks after COVID-19 infection, e.g., headache, mental and physical fatigue, skin rash, palpitations, and breathing problems during physical activity.


Moreover, having a child with a chronic health condition has been reported to cause suffering in the whole family, with risk of anxiety and depression and implications for the psychosocial functioning of both parents (Huth et al., 2023; Sheng et al., 2023) and siblings (Huth et al., 2023).


Seventeen parents (11 mothers and six fathers, median age of 48 years) of 13 children (nine girls and four boys) aged 9–18 years (median age of 14 years) from five different municipalities in Sweden participated in the study.


The parents express that they are distrusted and rejected repeatedly and met with prejudice that children cannot get COVID-19 and certainly not post COVID-19. Some parents were told that their child's symptoms are probably due to something else, often psychological or psychosomatic, and some children were referred for psychiatric care.


Most people believe that postcovid does not exist, even those in health care…//…right down to the actual pediatric clinic people are sitting and filtering patients without having the faintest idea of what postcovid is (father of a 13-year-old boy).


The constant struggle to seek care for their child made some parents lose trust in the health care system. The minimal knowledge of post COVID-19 in children from health care professionals and the absence of treatment and rehabilitation for their children made them scared.


I phoned around and asked…//…who is going to take care of him? Who is going to take him on? No there was like nothing, there was nothing that anybody had heard about…//…Well what shall we do with him who is not becoming healthy then? He…there is something wrong with him, he's not like well (mother of a 9-year-old boy).

 

That excerpt is quite telling. You can see the vulnerability of people to the ideas of health care providers who at least appear to understand.

An interesting anecdote about a girl's body growth stopping. I think this is an understudied aspect of the illness in young people; I'm convinced young people have to be allowed to sleep as much as they need in order to conserve energy for body growth and development.

Gaming has been important for my son's well being and social development too, as have pets.

I'm copying quite a lot here, but I think these anecdotes are useful and reflect my family's experience. That last one illustrates well just how disruptive a well-meaning but uninformed health practitioner could be, should they convince parents that this napping is poor sleep hygiene.

 

On the difficulties of knowing how much to push the child:

I'm not sure that Long Covid is in fact rare in children/young people, nor that rarity is a reasonable explanation for health professionals to accuse people of exaggerating or imagining symptoms.

Similarities with ME/CFS:

Difficulties for parents and for siblings:

 

Last one. I've copied the whole 'Implications to practice' section because I think it's a really important conclusion. A diagnosis or a known etiology is not a prerequisite for good nursing care (or for good primary health care in general). If the ill person is listened to, and believed, a lot of good care can flow from that.

 

I worry for the kids too young to express themselves well and with less experience of what a healthy body feels like It was difficult enough as a teen being told "everyone else has it just like you" with the obvious implication you're not coping well with normal stuff.