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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Dolphin, Jul 27, 2019.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    4,986
    This looks like it could be very annoying
    https://journals.sagepub.com/doi/abs/10.1177/1367493519864745


     
    WillowJ, Sean, Hutan and 4 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    So are these Fink-ites
     
  3. Trish

    Trish Moderator Staff Member

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    Chilling. Just imagining being a parent of a sick child being told to force a child to exercise and go to school.
     
    ladycatlover, Mithriel, rainy and 9 others like this.
  4. Denise

    Denise Senior Member (Voting Rights)

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    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!
     
    ladycatlover, Mithriel, Hutan and 9 others like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It is frightening how care of children with poorly understod health problems is controlled by zealots that have constructed a complex belief system with approximately zero evidence behind it.
     
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Out of date and inappropriate treatment of physically ill children.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.
     
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Therapists coaching parents to gaslight their kids.
     
    Arnie Pye, Lisa108, inox and 5 others like this.
  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Appalling and sadistic torture of children by doctors and parents. Why is this even legal?
     
    Lisa108, inox, Peter Trewhitt and 2 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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?
     
    Peter Trewhitt and rvallee like this.
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  11. lansbergen

    lansbergen Senior Member (Voting Rights)

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    They must think parents do not know their children.
     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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.
     
  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    inox and Kalliope like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
    Sarah94, Arnie Pye, inox and 2 others like this.
  15. JemPD

    JemPD Senior Member (Voting Rights)

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    "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
     
    Mithriel, cyclamen, chrisb and 12 others like this.
  16. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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: Jul 27, 2019
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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:

    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:

     
    rvallee, Hutan, Arnie Pye and 4 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

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    I can hardly breathe. Or in more colloquial English. I’m gobsmacked at the tripe they’re coming out with.
     
    ladycatlover, Sarah94, Hutan and 7 others like this.

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