‘I can hardly breathe’: Exploring the parental experience of having a child with a functional disorder, 2019, Hulgaard et al

Dolphin

Dolphin

Senior Member (Voting Rights)
This looks like it could be very annoying
https://journals.sagepub.com/doi/abs/10.1177/1367493519864745


Ditte Roth Hulgaard1, Charlotte Ulrikka Rask2,Mette Bech Risør3and Gitte Dehlholm

‘I can hardly breathe’: Exploring the parental experience of having a child with a functional disorder


First Published July 23, 2019 Research Article
https://doi.org/10.1177/1367493519864745
Article information
access_no.gif


Abstract
Functional disorders in children and adolescents are common. Still, little is known about parents’ experience of having a child with a functional disorder. The aim of this qualitative interview study was to explore challenges encountered by parents caring for a child undergoing treatment for functional disorder. Sixteen parents to children with functional disorders were interviewed when their child was referred from a paediatric department for further specialized treatment with family therapy in child and adolescent mental health services. Analysis identified three themes, reflecting the parental experiences: parents in limbo, which described how limited knowledge about functional disorders among professionals in non-specialized settings influenced parental roles; a counterintuitive kind of caring, describing parental struggles with adhering to treatment recommendations for functional disorders; and challenges to parental identity, describing parental emotional challenges. These challenges may bar the acceptance of psychological treatment approaches in families with a child with functional disorders.

Keywords Child and adolescent mental health, family, paediatric, parenting, qualitative approaches
Click to expand...
 
The "authorities" (healthcare professionals, school officials, etc) insist that parents shouldn't trust their children when the child(ren) say they cannot, when the parents SEE the repercussions of exercise/school/exertion.... These things infuriate me!
 
Out of date and inappropriate treatment of physically ill children. Parents told to not believe their child, and follow through on potentially damaging treatment, may rob the child of a sense of self worth: "My parents think I'm lying, wrong, lazy etc. I must be."

And, if someone who is assumed a lesser person, doesn't agree or seem to instantly get the picture, they are often labeled emotionaly or cognitively challenged.
 
Also, an odd bit in the title of this study. Is this referring to therapists' advice that despite concerning complaints from your sick child, parents should press on regardless?
 
DokaGirl said:
Also, an odd bit in the title of this study. Is this referring to therapists' advice that despite concerning complaints from your sick child, parents should press on regardless?
Click to expand...
The title is from one of the interviews with a parent

Mie’s parents had a strong conviction that no sufficient explanation for their child’s symptoms had been provided. Both parents expressed frustration with the medical examinations that had been performed, as they did not feel that a possible physical cause for Mie’s symptoms had been thoroughly explored. Rather, they felt that focus had been on possible psychological explanations:

Mie’s ‘mother: All along, I had a feeling that they have been looking for some kind of trauma, which isn’t there. [ . . . ] And then it comes, between the lines, that I am overprotective, right?
And damn, that is just [PAUSE] I can hardly breathe’.

Mie’s mother felt that HCPs had an explicit but also a hidden agenda, reaching beyond finding a trauma to explain symptoms. She felt that HCPs said, ‘between the lines’ that her parenting style was wrong, ‘overprotective’ and, furthermore, that her parenting style could cause symptoms.
 
These people are so F weird. They invent something whole then are puzzled that the thing that they invented is being resisted by people who tell them it makes no sense whatsoever.

Reminds me of cold reading "psychics". They will just throw around concepts and threads to follow and try to walk backwards to make it fit. Charlatans just the same. This whole thing has to be strictly regulated, it's a complete free-for-all with zero accountability.
 
"i can hardly breathe".... typical that from everything that was said, for the title they would pick the phrase that appears to be a mother displaying an emotionally mediated physical symptom..... Making mothers look 'emotional' when in fact her feelings are entirely rational & natural

the whole thing is abominable
 
Functional seizures? Ignore them?!Something has got to be making those happen, that just hasn't been pinpointed.


It appears BPS therapists are not risk averse. Taking a risk that all these symptoms stem from the psyche, and not a serious biomedical disease. Recommending to parents these symptoms be ignored.
 
Kalliope said:
The title is from one of the interviews with a parent

Mie’s parents had a strong conviction that no sufficient explanation for their child’s symptoms had been provided. Both parents expressed frustration with the medical examinations that had been performed, as they did not feel that a possible physical cause for Mie’s symptoms had been thoroughly explored. Rather, they felt that focus had been on possible psychological explanations:

Mie’s ‘mother: All along, I had a feeling that they have been looking for some kind of trauma, which isn’t there. [ . . . ] And then it comes, between the lines, that I am overprotective, right?
And damn, that is just [PAUSE] I can hardly breathe’.

Mie’s mother felt that HCPs had an explicit but also a hidden agenda, reaching beyond finding a trauma to explain symptoms. She felt that HCPs said, ‘between the lines’ that her parenting style was wrong, ‘overprotective’ and, furthermore, that her parenting style could cause symptoms.
Click to expand...
This is entirely correct. The parent is simply accurately describing what is happening, it's very lucid. These people are obsessed with magical psychological explanations, yet somehow want to pretend they are not. Then somehow label accurate descriptions of what they are doing as incorrect because... reasons. Are they just completely detached from reality? This is gaslighting so complete it's almost meta: they gaslight about gaslighting.

How is that not psychological abuse? There cannot be informed consent based on deceit, this violates everything that matters in how to deliver health care. Just because it's from licensed medical professionals does not make it any less unethical.
 
Ethics Review Committees? How do these studies pass muster?

There are several reasons, and ways and means by which these questionable and concerning studies make it through the review process.
 
Last edited:
rvallee said:
This is entirely correct. The parent is simply accurately describing what is happening, it's very lucid. These people are obsessed with magical psychological explanations, yet somehow want to pretend they are not. Then somehow label accurate descriptions of what they are doing as incorrect because... reasons. Are they just completely detached from reality? This is gaslighting so complete it's almost meta: they gaslight about gaslighting.

How is that not psychological abuse? There cannot be informed consent based on deceit, this violates everything that matters in how to deliver health care. Just because it's from licensed medical professionals does not make it any less unethical.
Click to expand...
Yes. Some of these stories are quite uncomfortable reading and one could hope outsiders discover there are some very problematic aspects with "functional disorders" and how they are dealt with:

Paediatricians further instructed parents to handle symptoms at home as part of a strategy to direct parental attention away from symptoms. Hanna had a history of repeated functional seizures, followed by days or weeks, where Hanna was unable to walk. Hanna’s mother had been advised by HCPs to avoid hospital contacts and not to call an ambulance when Hanna had seizures, which was challenging as Hanna’s mother struggled with the responsibility of dealing with symptoms at home. Hanna’s mother described an episode, where Hanna had seizures in the home and a neighbour tried to help.

Hanna’s mother:
‘And she [the neighbour] said after 10 minutes, we have to call an ambulance. And I said we couldn’t do that, we are simply not allowed to. Because it is not dangerous. I think that is difficult, really difficult. It is really difficult because they say that it isn’t dangerous. Just make sure that she doesn’t swallow her tongue when it happens, just slap her if she stops breathing, do this, do that. But it is not dangerous. [ . . . ] And that is a huge responsibility to give to us [the parents]’.

Hanna’s mother felt that treatment entailed ‘not allowing’ her to call for help, which increased her sense of responsibility in relation to child and symptom care. However, the increased sense of responsibility was not accompanied by a sense of capability, resulting in uncertainty and ambivalence about adhering to treatment recommendations. Hanna’s mother did not feel empowered to deal with symptoms, rather she felt disempowered and alone when following the paediatrician’s directions.
Click to expand...

This could be read as rather critical to the advice that comes following being diagnosed with a functional disorder, but then we are reassured again in the next section:

Emotional strains on parents were, nonetheless, also seen to be reduced through the positive experience of dealing with symptoms at home as exemplified by Louise’s parents. Louise had a short history of functional seizures, which were triggered by physical trauma or pain. After two admissions, the parents were guided by paediatric HCPs to handle symptoms at home, which initially concerned them. However, they found that they could successfully handle the symptoms, as in the following episode where Louise’s knee was hurt.

Louise’s ‘And she wanted to sleep right away, but I held her up and she kind of fell down once in mother: a while. And I tried to tell her, Louise you don’t need to sleep. Try to have some water.

And after 20 minutes, she woke up again and she was fine. [ . . . ]

Louise’s father: and I do feel that we have learned a lot, I mean we have learned how to deal with this’.
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom