Children's experiences of CFS/ME: a systematic review and meta-ethnography of qualitative studies

hixxy

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Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies.

Parslow RM, Harris S, Broughton J, Alattas A, Crawley E, Haywood K, Shaw A.

Abstract

OBJECTIVE:
To synthesis the qualitative studies of children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

DESIGN:
Systematic review and meta-ethnography.

BACKGROUND:
CFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children.

METHODS:
Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography.

RESULTS:
Ten studies involving 82 children with CFS/ME aged 8-18 were included. Our synthesis describes four third-order constructs within children's experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children's ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness.

CONCLUSIONS:
Physical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition and diagnosis of childhood CFS/ME, specialist advice on activity management and improved communication between health and education providers to help children cope with their condition.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

KEYWORDS:
Adolescents; Children; Chronic Fatigue Syndrome; Myalgic Encephalomyelitis; Qualitative synthesis

PMID: 28087544
DOI: 10.1136/bmjopen-2016-012633

https://www.ncbi.nlm.nih.gov/pubmed/28087544
http://bmjopen.bmj.com/content/7/1/e012633
 

ash0787

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meta-ethnography thats a new word for me, sounds made up

" barriers to coping " - the nhs is ******* useless and tells them they are mental ?

" credible illness narratives " - what does that mean ?

" Children adopt coping strategies such as building credible explanations for their illness. "
what, as opposed to official explanations ?
 

ash0787

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Lets look at what some of these words mean

" Qualitative Research is primarily exploratory research. It is used to gain an understanding of underlying reasons, opinions, and motivations. It provides insights into the problem or helps to develop ideas or hypotheses for potential quantitative research. "

" The aim of qualitative research may vary with the disciplinary background, such as a psychologist seeking to gather an in-depth understanding of human behavior and the reasons that govern such behavior. "

" There are three major approaches to qualitative research: ethnography (drawn from anthropology); "

" Anthropology is the study of various aspects of humans within past and present societies.[1][2][3]Social anthropology and cultural anthropology[1][2][3] study the norms and values of societies. "

" Biological anthropologists seek to understand how humans adapt to diverse environments, how biological and cultural processes work together to shape growth, development and behavior, and what causes disease and early death. In addition, they are interested in human biological origins, evolution and variation. They give primary attention to investigating questions having to do with evolutionary theory, our place in nature, adaptation and human biological variation. To understand these processes, biological anthropologists study other primates (primatology), the fossil record (paleoanthropology), prehistoric people (bioarchaeology), and the biology (e.g., health, cognition, hormones, growth and development) and genetics of living populations. "

So I guess the question is how common is it to use anthropologists to deal with a disease like cfs,
how useful are they at this point considering what is commonly known about the disease and its history at this point, how appropriate is it to be giving them research grants at this point in that context and considering how little funding is available ( assuming of course that is actually what is going on in this research and the authors are qualified in that field )
 

trishrhymes

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I also have noticed EC doesn't use the CBT and GET terminology so often now - perhaps she is implicitly acknowledging that they are busted after the PACE data release. Of course she still uses them as 'treatment', just calls it activity management instead.

I also notice this is an amalgamation lots of tiny studies, so subject to huge biases and completely unscientific. Especially when based on talking to sick children who will often say whatever they are pushed into saying, or what they think the researcher wants to hear. I find this messing with kids heads completely unethical and sinister.

As others have pointed out, part of the strategy of keeping this junk going is to bring in people from other fields who know nothing about ME to research and treat patients - hence the use of nurses and OT's trained to do CBT and GET, and now anthropology to dig around and draw conclusions. The last thing they want is actual scientists and doctors who might read the real biomedical research.

On the other hand, perhaps there is a role for anthropologists to study the strange phenomenon of the way a group of psychiatrists, psychologists (and the odd paediatrician) manage to hold such sway over the British medical establishment on the basis of a false theory so completely and for so long. Now that could be a valuable study.
 

Molly98

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On the other hand, perhaps there is a role for anthropologists to study the strange phenomenon of the way a group of psychiatrists, psychologists (and the odd paediatrician) manage to hold such sway over the British medical establishment on the basis of a false theory so completely and for so long. Now that could be a valuable study.
Funny you should mention this Trish, I have a degree in Cultural Studies and Social Anthropology, I have many a time thought of writing or doing research on the culture of the BPS lot and its impact on the ME community, if only my brain still worked properly I would be enrolling on a research master with this as my research interest.
 

trishrhymes

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Funny you should mention this Trish, I have a degree in Cultural Studies and Social Anthropology, I have many a time thought of writing or doing research on the culture of the BPS lot and its impact on the ME community, if only my brain still worked properly I would be enrolling on a research master with this as my research interest.
Are you still in touch with any of your former lecturers or fellow students who might take this on as a research project? It would have to be someone you'd trust to do a thorough job really digging into the whole background of how Wessely et al gained so much power and why.
 

Molly98

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Are you still in touch with any of your former lecturers or fellow students who might take this on as a research project? It would have to be someone you'd trust to do a thorough job really digging into the whole background of how Wessely et al gained so much power and why.
Unfortunately not Trish, it is a while ago now. Ethnography was my thing, I loved it. Perhaps it would be worth contacting Cultural studies/ social anthropology studies lecturers though at Universities with a bit of background information, it may be a project a research student and group would be interested in taking up and may help to expose the power dynamics going on here.
 

trishrhymes

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Unfortunately not Trish, it is a while ago now. Ethnography was my thing, I loved it. Perhaps it would be worth contacting Cultural studies/ social anthropology studies lecturers though at Universities with a bit of background information, it may be a project a research student and group would be interested in taking up and may help to expose the power dynamics going on here.
I'd be a bit wary of just contacting anyone out of the blue. We would have to find someone we could trust to do a thorough job. Unfortunately I can imagine a PhD student being given this as a project by a supervisor who knows nothing of the background and the student not realising they are being hoodwinked by the psychobabblers. We'd have to make sure they get the full picture. Maybe someone else in here knows someone useful... Or maybe this is just a pointless diversion.
 

Molly98

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I'd be a bit wary of just contacting anyone out of the blue. We would have to find someone we could trust to do a thorough job. Unfortunately I can imagine a PhD student being given this as a project by a supervisor who knows nothing of the background and the student not realising they are being hoodwinked by the psychobabblers. We'd have to make sure they get the full picture. Maybe someone else in here knows someone useful... Or maybe this is just a pointless diversion.
I think it would be a good idea but not the best use of very limited energy at this present time which I think is needed more urgently with all this MUS stuff going on.
 

ash0787

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I can think of a few people that might be able to help that I know of on the internet, I sent a message to one on reddit, if you guys are knowledgeable about the subject and have more physical contacts that might be better though.

I just think it might be useful to bring some independent experts in and see what they think
 

slysaint

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On the other hand, perhaps there is a role for anthropologists to study the strange phenomenon of the way a group of psychiatrists, psychologists (and the odd paediatrician) manage to hold such sway over the British medical establishment on the basis of a false theory so completely and for so long
I think we need an umbrella term for this subgroup........suggestions? Maybe we should then get them to complete a survey to say which one they prefer?
;)ers comes to mind.

eta: was being sarcastic....re the umbrella definitions presented to CFS sufferers (see MUS/MUPS)
 
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JohnCB

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I think we need an umbrella term for this subgroup........suggestions? Maybe we should then get them to complete a survey to say which one they prefer?
;)ers comes to mind.
How do you propose to encourage to them participate in this research? Prod them with the pointy end of the umbrella until they agree? I think this is known as Cognitive Brolly Therapy. It's good for making people say they believe things that they did not believe before, especially when filling in questionnaires. A good prod quickly livens up a tired psycho, too.
 

Dolphin

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I read this study. I am not a fan of CBT or GET nor of Esther Crawley. However I found this study safe enough. There were a few minor sentences that were a bit annoying but overall it is sympathetic.

It probably helps that they are summarising other research rather than dissecting interviews that they did themselves.