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

[Dolphin]

Charlotte Angelhoff, Karel Duchen, Per Ertzgaard, Patrik Rytterström,
Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19,
Journal of Pediatric Nursing, 2024, ISSN 0882-5963,
https://doi.org/10.1016/j.pedn.2024.05.023.
(https://www.sciencedirect.com/science/article/pii/S0882596324002057)

Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19

Highlights

• Parents experience an uncertainty when they have a child with a new, unexplored post-infectious condition.
  
  
• Parents experience lack of knowledge and bad attitudes when they seek care for their child.
  
  
• It is important that health care staff meet the patient and family with an unbiased attitude, listening to their story.
  
  
• Child- and family centered care is a priority in the care for these families.

Abstract

Background
Post COVID-19 diagnosis in children has been difficult as there has been a lack of knowledge within the healthcare system, leading to uncertainty concerning how these children should be assessed and treated. To understand the aspects of how parents experience seeking care for their child with an array of symptoms and how the child's symptoms affect their everyday life and family situation, we need to listen to the parents' stories about having a child living with post COVID-19.

Purpose
To describe parents' experiences of seeking professional care for their child with post COVID-19 symptoms and what kinds of impacts there are on their children's daily life.

Design and methods
A qualitative study with an inductive and exploratory approach including seventeen parents of children with post COVID-19. Face-to-face interviews were conducted between October 2022 and March 2023 and analyzed with thematic analysis.

Results
The findings describe how the parents' constant struggle for their child and how the child's symptoms affect their daily life and their family situation in three themes: Navigating the unknown, Navigating life with post COVID-19, and Navigating between fear and hope for an uncertain future.

Conclusions
This study corroborates the parents' struggle for acceptance of the children's problems in the health system.

Practice implications
It is important that health care focuses on the everyday world and the problems that the child and parents express to understand the family's perspective and the problems that arise in everyday life.

Keywords
Adolescent health
Attitude of health personnel
Child health
Family
Long COVID
Nursing
Parents
Post-acute COVID-19 syndrome

https://twitter.com/user/status/1795267802875777525

 

[Hutan]

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).

 

[Hutan]

All parents describe the relief when they finally meet someone who believes them and their child. They mention the specific nurse or doctor they had met, often by name, and express the importance of what this person had done. This understanding by health service is not only linked to the post COVID-19 diagnosis. It is also about being listened to that someone pays attention to the child's situation and the child's everyday situation. The health care team's confirmation that the child has major problems is also an acknowledgment that the parents are not just making things up.

It was not before we met doctor NN [doctor's name] in August that we feel that we…both XX [daughter's name] and I were actually almost… in tears when we left…//…we had at last met a doctor who listens. We haven't felt that way before (mother of a 17-year-old girl).

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.

Because the thing with karate has made her quite sad, that she can't…// …But it requires extreme fitness, it was too tough, she couldn't manage it, she like needed to rest several times during a session…//…So we had to take a pause and NN [doctor's name] was rather decisive about that, that we take a pause there, because her growth had stopped as well (mother of a 10-year-old girl).

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 on the internet and interacting with other children all over the world, without being judged based on their condition, had become a haven for some children. Additionally, in families with pets, the parents explain how their rabbit, dog, cat, or horse is positive for their child's, as well as their own, health considering unconditional love and healthy outdoor activities.

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

All children need more rest and recovery than before. Headache and brain fog follow days with a high activity level. It is not unusual to take a nap when they come home from school. Some manage with a short rest, while others sleep for several hours. The father of a 14-year-old girl describes his daughter's behavior when she comes home from school:

She usually has a cup of coffee or something when she comes home; it's quite quick. Then, she goes to bed, crawls under the covers, may check her telephone or read a book eh, and then she lies there in the dark and looks or reads, or whatever she does. Eh, and many times she of course falls asleep and then she has maybe been lying there for two, three hours in the worst case before we eat maybe seven o'clock or something…

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.

 

[Hutan]

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

However, sometimes it is difficult for the parents to distinguish what the child's actual condition is, if they truly could not bring themselves to school or on an excursion, or whether the child used the condition as an excuse because they did not want to go.
...
The parents try in various ways to get the child to activate themselves, go for a walk, do homework, or get up in the morning but realize that nagging and motivating sometimes only makes the situation worse.
...
She is homebound in that way and one does of course everything so that she will come…come out and not be only at home then and for a while one was of course that…it's like that, one has the children's best interests at heart and so it is actually a…one tries to push and such like and when one notices that it doesn't work one becomes a bit angry and it becomes…it becomes of course wrong (father of an 18-year-old girl).
...
For some parents, there is a feeling that the children are giving up; other parents describe instead that they are taking a step back to wait for the child. They describe that there is a fine line between pushing too much or too little, and it is easy to feel guilty when they realize they are not finding the right balance.

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.

Post COVID-19 in children is rare (Bygdell et al., 2023; Montoy et al., 2023), which can explain why health care professionals use other explanatory models and, in some cases, accuse the parents of exaggerating or imagining the children's symptoms.

Similarities with ME/CFS:

Similar findings about the challenges of having a child with an inconspicuous illness, including the struggle to communicate with health care professionals and to access health care for their child, have been described previously by parents of children with chronic fatigue syndrome/myalgic encephalomyelitis (Webb et al., 2011).

Difficulties for parents and for siblings:

Similar findings have been reported in parents of chronically ill children, indicating that parents put themselves “last on the list” and that the stress from constant worry for the child limits the parents' capacity to meet the child's needs (Angelhoff et al., 2015; Smith et al., 2022).
...
In the present study, parents state that siblings of the children with post COVID-19 were constantly sidelined. Family activities and trips were canceled or rescheduled due to the ill child's condition, leading to conflicts as the sibling had to adapt to the situation. Similar findings have been reported in siblings of children with other chronic diseases, such as cancer, cystic fibrosis (Williams et al., 2009) and diabetes (Chan & Shorey, 2022).

 

[Hutan]

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.

Implications to practice
A clinical implication from the results could be that a diagnosis (although important for receiving the right treatment) is not a prerequisite for good nursing care. Child- and family-centered care (CFCC), including family support and culturally competent care individually focused on the child and family, is a priority in the care of these families. The CFCC is a philosophy of health care, integrating and extending family-centered care as well as person-centered care, acknowledging children as unique individuals with their own perspectives, experiences, and needs (Foster & Blamires, 2023). With this orientation, the family, as well as the child, is given a voice and empowered to contribute to their own care situation.

Nurses are often the first point of contact for children and their parents and play a key role in delivering CFCC, including relationship building, advocacy, and access to resources, education, and support services (Foster & Blamires, 2023). Moreover, Roesler et al. (2022) suggested that school nurses, who meet children in their daily life, should perform individualized health assessments and follow up with parents, primary health care providers, and multidisciplinary teams or specialists, as they are in a unique position to identify health and developmental changes.

 

[Midnattsol]

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.

 

[rvallee]

It is important that health care staff meet the patient and family with an unbiased attitude, listening to their story.

There's no such thing as being unbiased in this setting. All health care professionals are biased, have many biases. Some of those biases are good, in fact many are extremely important. Bias isn't inherently bad, what matters is that they are accounted for and are positive. In fact there should be more biases towards helping people with complex conditions, while the current biases are strongly against. This is learned behavior, so obviously 1) not teaching it in the first place and 2) undoing having taught those biases have to happen. None of this will happen by simply wishing for it.

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).

99% of the problem, right there. Health care is the problem. Again and again. Medical training and culture are what instills those harmful biases. This has to be said louder and more forcefully, it should be viewed in the same way as unjustified police violence: never acceptable. In fact it should be punishable, or it will simply keep on happening like it always has.

Almost all those studies basically amount to an anatomy of systemic failure, pointing precisely where the problem is, but nothing ever changes. So the system and why it is so incapable of changing away from harming people has to be given intense focus. None of this is normal, something that should never happen isn't just routine, it's widely defended every time it's reported.

Post COVID-19 in children is rare (Bygdell et al., 2023; Montoy et al., 2023), which can explain why health care professionals use other explanatory models and, in some cases, accuse the parents of exaggerating or imagining the children's symptoms.

Explaining something doesn't make it any less wrong. Being racist explains racism, still wrong. Those explanatory models are so obviously and blatantly wrong that there is no excuse for their misuse, this is as textbook two wrongs not making a right ever gets.