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Financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 28, 2014.

  1. Dolphin

    Dolphin Senior Member

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    *I gave each sentence its own paragraph
     
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  2. Dolphin

    Dolphin Senior Member

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    I read the paper. I found it sympathetic. It listed all the various problems eight mothers listed in interviews which would hopefully help people realise why a mother might be distressed. There was no promotion of CBT or GET.

    I thought it gave a good insight into what families go through.
     
    Last edited: Feb 28, 2014
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  3. Dolphin

    Dolphin Senior Member

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    Last edited: Feb 28, 2014
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  4. Valentijn

    Valentijn Activity Level: 3

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    @Dolphin - What did they use as the threshold for determining a mental health problem? This is something they've fudged on before: using a borderline rate to show mood disorder in patients, and then comparing the borderline positives to actual positives in the general population to make their results look more impressive.

    I'd also be curious to know what the average score is for the mothers as a group.

    But it's definitely good news that they're advocating financial support - that's a huge improvement from what was happening 15 years ago regarding adult patients. Yet I still think that somehow this paper is going to be used to support their belief that the mother's "mental health problem" causes the child's illness.
     
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  5. biophile

    biophile Places I'd rather be.

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    http://www.nwph.net/lifestylesurvey/userfiles/mental/things/GHQ12.pdf

    General Health Questionnaire-12:

    The GHQ12 is a measure of current mental health. It focuses on two major areas – the inability to carry out normal functions and the appearance of new and distressing experiences.

    [...]

    Have you recently ...

    1. Been able to concentrate on whatever you are doing?
    2. Lost much sleep over worry?
    3. Felt that you are playing a useful part in things?
    4. Felt capable of making decisions about things?
    5. Felt constantly under strain?
    6. Felt you couldn’t overcome your difficulties?
    7. Been able to enjoy your normal day to day activities?
    8. Been able to face up to your problems?
    9. Been feeling unhappy and depressed?
    10. Been losing confidence in yourself?
    11. Been thinking of yourself as a worthless person?
    12. Been feeling reasonably happy, all things considering?
     
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  6. user9876

    user9876 Senior Member

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    From the perspective of a parent with a child with ME or maybe I just have severe mental health issues?
    1) Been able to concentrate on whatever you are doing? -No because I'm worrying about my child along with what doctors/social workers/teachers might do to make things worse or just very very angry at how they have made things worse
    2) Lost much sleep over worry? Yes particularly when doctors visit or start threatening child protection action because they can't understand how a child could be so ill. From experience I can tell you some of the authors of this paper will support child protection action to 'get the family help' or just disappear and not be contactable even though they know the action doctors are carrying out will harm the child.
    3) Felt that you are playing a useful part in things? No too much energy is spent trying to get doctors and teachers to behave like sensible people. That's necessary but I could describe it as useful but would prefer not to since energy should be put into positive stuff.
    4) Felt constantly under strain? No because its not about a parent making decisions but about getting healthcare workers to agree.
    5) Felt constantly under strain?Yes it is a constant strain to see a very sick child - is that abnormal? More strain due to necessity to manage doctors. Additional strain is caused by things like getting behind with work whilst having to get doctors to do the right thing.
    6)Felt you couldn’t overcome your difficulties? - Difficulties are often outside of your control. Otherwise it wouldn't be hard to overcome them. But we keep trying.
    7) Been able to enjoy your normal day to day activities? When your child is too sick to leave the house it is quite hard to enjoy normal activities but we enjoy what we can. I could see myself answering either way on this one depending on what type of point I would like to make.
    8) Been able to face up to your problems? I don't even understand what this question means.
    9) Been feeling unhappy and depressed? - Unhappy when you see your child suffering, isn't that normal? Doesn't mean we don't also get on with our lives and enjoy the good bits. Given the circumstances I think it is a confused question.
    10. Been losing confidence in yourself? No but I can see how a parent could when being told that your child just thinks shes ill and needs to pull herself together. Being constantly bombarded with idiocy from people who are in a position of authority can make you question your own judgement and lose confidence.
    11. Been thinking of yourself as a worthless person? No - but the comment above applies/
    12. Been feeling reasonably happy, all things considering? - That is just a stupid question.

    The problem is that the questionnaire has been developed for people in normal circumstances. If you were to ask parents of any seriously ill child I think you would get quite negative answers. But with ME it is made worse by the actions of professionals.

    Recently Crawley published a paper on depression based on the HADS scale yet there was a study looking at HADS with fibromyalgia which found it was not a valid scale and only shows psychological distress. Again this is another paper where a scale has been used without thinking about the context and yet making strong conclusions. It underlines a big issue with evidence based medicine as it is just black box testing with often inappropriate measurements rather than bothering to think about the underlying structure of the problem.
     
  7. Dolphin

    Dolphin Senior Member

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    The average (SD) scores for mothers were:
    Anxiety (HADS): 5.8 (3.4)
    Depression (HADS): 9.1 (4.1)
    GHQ-12: 7.1 (3.6)
    Given the rates of anxiety were much higher than depression, I wonder whether the scores for anxiety and depression are the wrong way around.
     
  8. biophile

    biophile Places I'd rather be.

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    Or it could be another NSS (No Shit, Sherlock!) type of study: parents of patients with severe illness are more anxious.
     
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  9. Dolphin

    Dolphin Senior Member

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    ?
    We've no information on which patients had the more severe illness.
     
    Last edited: Mar 1, 2014
  10. user9876

    user9876 Senior Member

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    There are two factors which should be looked at one is the severity of the illness and the other is the route to the clinic and how long a diagnosis took and how other doctors or schools had treated the children. I would be surprised if a combination of these two factors didn't correlate with anxiety
     
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  11. Valentijn

    Valentijn Activity Level: 3

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    Likert or bimodal for GHQ-12? 7.1 would be quite low for Likert, and bimodal seems rather insensitive to things being a little worse versus a lot worse.
     
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  12. Dolphin

    Dolphin Senior Member

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    Don't think it says but I presume it is bimodal given the cutoff of 3/4:
     
  13. Valentijn

    Valentijn Activity Level: 3

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    I've read it now, and it does look like bimodal.

    Something likely to have a significant impact is that 20% of the mothers in the study have ME/CFS themselves ... and those questionnaires pile on a lot of points for ME/CFS patients even without actual anxiety or depression being present.
     
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