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

Dolphin

Senior Member
Messages
17,567
The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME).

Child Care Health Dev. 2011 Sep 1. doi:10.1111/j.1365-2214.2011.01298.x. [Epub ahead of print]

Missen A, Hollingworth W, Eaton N, Crawley E.

School of Social and Community Medicine, University of Bristol School of Health and Social Care, University of West of England, Bristol, UK.

Abstract*

Background

Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and children can be severely affected attending little or no school for extended periods.

There are no studies quantifying the financial impact of having a child with CFS/ME and there is little information of the impact on parental mood.

Methods

Forty mothers of children with CFS/ME from a regional specialist CFS/ME service completed inventories to assess their psychological well-being (Hospital Anxiety and Depression Scale, General Health Questionnaire-12) loss of earnings and increased expenditure.

In addition, eight mothers took part in a semi-structured qualitative interview.

Results

Most parents of children with CFS/ME experience loss of monthly income (mean =£247) and increase in monthly expenditure (mean=£206).

Twenty-eight (72%) mothers were above the cut-off for the General Health Questionnaire-12 compared with 20% in the healthy population (95% CI 55, 85, P < 0.001) suggesting they probably have a mental health problem.

This may be explained by the qualitative interviews where mothers described five areas contributing to poor parental health: lack of understanding from others; marital tension; concern about their child's distress; concern about the impact on siblings and emotional distress causing physical symptoms.

Conclusions

The majority of families of children with CFS/ME experience decreased income and increased expenditure with a marked impact on maternal psychological health.

Clinicians need to be aware of this to provide appropriate support to families who care for children with CFS/ME.


*I gave each sentence its own paragraph
 

Dolphin

Senior Member
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17,567
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.
 
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Dolphin

Senior Member
Messages
17,567
Clinicians may need to support families in claiming benefits and financial aid

Clinicians need to be aware of these impacts that may lead to reduced capacity to provide appropriate care and support and should support parents in claiming financial aid and seeking treatment for their own health needs.
 
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15,786
@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.
 

biophile

Places I'd rather be.
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8,977
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?
 

user9876

Senior Member
Messages
4,556
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?


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.
 

Dolphin

Senior Member
Messages
17,567
@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.
For this study parents were asked to complete the following additional questionnaires to assess psychological well-being: the Hospital Anxiety and Depression Scale (HADS) and the General Health Questionnaire-12 (GHQ-12). A cut-off score of >10 was used for both the anxiety and depression subscales on the HADS as there is general consensus that this will include moderate and severe anxiety and depression, respectively, in a healthy population (Crawford et al. 2001; McCue et al. 2006). The GHQ-12 is used as a screening inventory (Fryers et al. 2004) to identify those with probable mental health problems and is known to have excellent reliability and validity (Goldberg et al. 1997). The most commonly used (Fryers et al. 2004) cutoff of 4 or more was used to define a probable mental health problem. We did not define which parent (mother or father) should complete the inventories.

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.
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
Given the rates of anxiety were much higher than depression, I wonder whether the scores for anxiety and depression are the wrong way around
. Or it could be another NSS (No Shit, Sherlock!) type of study: parents of patients with severe illness are more anxious.
?
We've no information on which patients had the more severe illness.
 
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user9876

Senior Member
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4,556
?
We've no information on which patients had the more severe illness.

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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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.
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.
 

Dolphin

Senior Member
Messages
17,567
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.
Don't think it says but I presume it is bimodal given the cutoff of 3/4:
The GHQ-12 is used as a screening inventory (Fryers et al. 2004) to identify those with probable mental health problems and is known to have excellent reliability and validity (Goldberg et al. 1997). The most commonly used (Fryers et al. 2004) cutoff of 4 or more was used to define a probable mental health problem.
 
Messages
15,786
Don't think it says but I presume it is bimodal given the cutoff of 3/4:
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.