Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

Dolphin

Dolphin

Senior Member (Voting Rights)
https://ethos.bl.uk/OrderDetails.do?did=1&uin=uk.bl.ethos.760921
Hannah A. Rapley
- Department of Psychology, University of Bath, Bath, United Kingdom

Abstracts

Critical Review of the Literature

Objective: Whilst the evidence base for Cognitive Behavioural Therapy (CBT) with children and young people is growing, the mechanisms through which these beneficial effects occur is still unclear. This systematic review seeks to appraise the relationship between therapeutic outcomes in CBT and therapist adherence and competence, within the child and adolescent literature. Method: A systematic review was carried out, with seven studies identified as meeting the inclusion criteria. Results: The literature is currently small and inconclusive. Amongst the studies reviewed there were inconsistent findings, with minimal-to-no effect sizes found between adherence, competence, and outcomes. Conclusions: The current paucity of research in this area means that conclusions are currently limited. The role and impact of adherence and competence on therapeutic outcomes remains unclear within individual CBT in a child population. This is comparable with the current adult literature, where findings also remain inconclusive. Further research avenues are discussed.
Keywords: CBT, adherence, competence, children, young people

Public health significance: Cognitive Behavioural Therapy has a growing evidence base for children. However, it is still unclear which mechanisms enable these beneficial effects. How well a therapist adheres to the model, and the competence with which they deliver the therapy, are two possible variables that may contribute to the outcome of therapy. This article reviews the state of the current literature.

Service Improvement Project

Fabricated or induced illness by another is rare and poorly understood. Whilst some of the difficulties recognising and managing it have been addressed in literature and guidelines, to date there has been no published consideration of fabrication within the context of chronic fatigue syndrome, which itself is often poorly understood and recognised. This study seeks to understand staff’s experience and knowledge of fabricated or induced illness within a paediatric chronic fatigue setting. Whilst challenges in line with other health conditions are identified, additional challenges are also highlighted that may be unique to working within a chronic fatigue setting. Discussion of these and future improvements are considered.

Keywords: fabricated illness, chronic fatigue syndrome, paediatrics

Main Research Project

Objective: This novel study sought to examine the prevalence of online self-harm activity amongst those who self-harm and how this impacts on self-harming practices and related distress. Method: A small innovative experimental study (N=3) sought to look at real-time effects of viewing self-harm material online. A cross-sectional study of young adults (N=126) compared differences between those who view self-harm material online and those who do not. The impact of appraisal of online content was explored in both studies. Results: 48% of the sample reported currently viewing self-harm material online, with an additional 23% reporting having previously viewed such material. Stronger desire to self-harm and greater psychological distress was found amongst those who view self-harm material online. Due to the small sample size in the experimental study causational inferences about the role of viewing self-harm material online cannot be made. Conclusions: Findings suggest that viewing self-harm material online is common amongst those who self-harm and that those who view self-harm material online may have stronger urges to self-harm and greater psychological distress than those who do not view such material online, thus indicating a higher risk group.

Keywords: self-harm, self-injury, online, internet.

Public Health Significance Statement: This study suggests that amongst young adults who self-harm, those who view self-harm material online have stronger urges to self-harm and greater psychological distress than those who do not view such material online.
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Does this follow on from / is related to the " safeguarding" conference? Seems a very similar content.

There is now a body of " research" being produced which needs to be carefully and systematically reveiwed, and where appropriate, seriousky debunked.

FII may have curious concentrations of location , which might change as reach extends.

This is critical within the 2 year NICE review period.

The " go- to" of CBT needs to be challenged. It simply is not effective for too many kids, moreover it makes them feel like shit if it dosn' t.

Given the overlap with autism ( where CBT can be disastrous) , there may be other therapies of better efficacy for those who need support.

In the other place @Hip had some posts re anxiety and supplementation which make sense in the context of broken metabollic paths. This might be something worth study.
 
At least the author appears to be aware that no conclusions can be drawn from her observations - or in fact from anybody else's observations.

The message seems to be that we have no convincing evidence that there is any specific active ingredient to 'CBT'. That seems to be quite an important and helpful conclusion.
 
...to date there has been no published consideration of fabrication within the context of chronic fatigue syndrome, which itself is often poorly understood and recognised. This study seeks to understand staff’s experience and knowledge of fabricated or induced illness within a paediatric chronic fatigue setting.
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chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
chronic fatigue syndrome ≠ chronic fatigue
.
.
.

:banghead::banghead::banghead:
 
I would take a more charitable view of that sentence. There is such a thing as a paediatric chronic fatigue setting - all the children presenting with illness involving fatigue. I don't now what the rest of the this says but this looks like a way of being careful to stick to facts rather than presumptions. Fabricated illness would not be CFS or ME, but it would appear in the clinical context if it involved fatigue.
 
Trying to get my head around what this is. It seems to be 3 separate bits of literature review done as part of a doctorate.

1. Whether CBT outcomes are related to adherence and competence in the context of CBT for CFS, which in the next sentence turns into CF.
This switch suggests to me that the author uses the terms interchangeably.

2. FII and staff knowledge and competence in a 'paediatric chronic fatigue setting'. Given the switch in the previous topic, I suggest she could be meaning CFS here.

3. Self harm and whether severity is correlated with use of online self harm sites. A separate topic, not linked to CFS.
............

The stuff about CBT for CFS in the first topic and whether the outcome depends on competence and adherence is something that interests me. How can they measure competence of the therapist? Do they mean success in getting more of their clients to fill in the questionnaires to say their health has improved? Or do they mean they watch recordings of the therapy sessions and judge whether the therapist is 'doing it right'. Either way, how can this be judged from a literature search?
 
Whilst the evidence base for Cognitive Behavioural Therapy (CBT) with children and young people is growing
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Like, in general? Evidence of what?
Conclusions: The current paucity of research in this area means that conclusions are currently limited.
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So the evidence base is "growing" but it shows no conclusions. Won't stop them from suggesting their own conclusions but it does seem to validate the fact that it's entirely useless since a growing evidence base (of something, unclear what) shows no useful conclusions, which early research showed as well. Fairly consistent over several decades.

Then from "chronic fatigue" to self-harm. What does two have anything to do with one another?

Get those people straws as Christmas gifts, they love to grasp for them.
 
@Tilly . Perhaps you would like to elaborate on the FII aspect, as it may be something that is not appreciated?

It' s a bit like CBT for ME in both its underlying tenets, and its universal applicability.

Edit spelling
 
Jonathan Edwards said:
I would take a more charitable view of that sentence. There is such a thing as a paediatric chronic fatigue setting - all the children presenting with illness involving fatigue. I don't now what the rest of the this says but this looks like a way of being careful to stick to facts rather than presumptions. Fabricated illness would not be CFS or ME, but it would appear in the clinical context if it involved fatigue.
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They are now looking at EDS ME and CF or CFS as FII with one expert witness just using medical history regardless of diagnosis, if fatigue is on there it counts.

The way FII is accused now is on the grounds of potential emotional harm. As there are not bio markers or proof that children are harmed by movement or attending school then the mother is at risk of being accused. They are running courses with the RCPCH to teach paediatrics to be able to be a witness in court.

I would like to think that they are trying to be careful and stick to facts but reading many papers it would seem open ended enough to be able to insinuate and many mothers are getting trapped with this.
 
Amw66 said:
@Tilly . Perhaps you would like to elaborate on the FII aspect, as it may be something that is not appreciated?

It' s a bit like CBT for ME in both its underlying tenets, and its universal applicability.

Edit spelling
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I just replied to Jonathan with how it FII seems to be being rolled out
rvallee said:
Like, in general? Evidence of what?


So the evidence base is "growing" but it shows no conclusions. Won't stop them from suggesting their own conclusions but it does seem to validate the fact that it's entirely useless since a growing evidence base (of something, unclear what) shows no useful conclusions, which early research showed as well. Fairly consistent over several decades.

Then from "chronic fatigue" to self-harm. What does two have anything to do with one another?

Get those people straws as Christmas gifts, they love to grasp for them.
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We are seeing an increase in mothers being accused and questioned about how they see their child's illness with a view to the risk of emotional harm as the reason for taking the child away from the mother. So now we do not have to harm our children just that it may be a possibility. There is now forced adoption that was brought in last year.
 
Here is another research paper just released and disappointingly was From Sarah Jannett Knights

https://www.frontiersin.org/article...YklPjFj1B4KnK3K0j0KLbyRCZvav4w3gJ1QOAT6Q4n5UE


What I find shocking is that there is no mention of PEM and how this has a huge impact on school. No matter how much support you give a child if they are incapable of physical or cognitive function, neither were measured.

Crawley is mentioned and so is Wessley and if I was cynical about it I would say this is to give credibility to them both so that they may use their work with NICE.

What does it say about ME/CFS or anything really is zilch. In fact there is a direct mention to pain not being a problem:

The relationships between illness factors (e.g., fatigue severity), emotional symptoms, and school functioning in CFS have seldom been a focus of research. In a large sample of patients with CFS, Crawley and Sterne (13) found that children with better physical functioning were more likely to attend school. However, there was no evidence that gender, age, illness duration, anxiety, depression, or pain were associated with school attendance.

On that statement I would ask who were they studying and why? Low take up Oh and 101 other things.
 
That all sounds horrendous, @Tilly. I assume TYMES are trying to do something about it. I hope the other ME organisations are too.
 
Trish said:
That all sounds horrendous, @Tilly. I assume TYMES are trying to do something about it. I hope the other ME organisations are too.
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Not sure as Jane is not well and there is only so much a small organisation can do. We need to tackle the research behind it all Dr Glaser is the one running seminars on how to accuse parent with the help of the police based on this research. Christopher Bass has done a few papers I think.

https://www.researchgate.net/profil...fabricated-or-induced-illness-in-children.pdf

The biggest problem is that if a Dr does not believe in ME EDS POTS then this research will just convince them that FII is the way to go and that it is simply under reported.
 
Tilly said:
I just replied to Jonathan with how it FII seems to be being rolled out


We are seeing an increase in mothers being accused and questioned about how they see their child's illness with a view to the risk of emotional harm as the reason for taking the child away from the mother. So now we do not have to harm our children just that it may be a possibility. There is now forced adoption that was brought in last year.
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Thanks @Tilly
I suspected a tranche of papers starting at end of last year onwards to retain and reinforce narrative/ control/ reputations.
These need to be dissected and appropriately critiqued by science and charities
Where are @Action for M.E. and MEA @Russell Fleming and ME Action @EspeMor

From papers i have read over past couple of years it us very clear that there is little knowledge of what ME is in children, what key aspects are and every conflation is played to bolster stats.

It is a very dangerous game, and for those who cannot/ do not question things or cannot read a scientific paper, the power dichotomy is very worrying.
 
Amw66 said:
Thanks @Tilly
I suspected a tranche of papers starting at end of last year onwards to retain and reinforce narrative/ control/ reputations.
These need to be dissected and appropriately critiqued by science and charities
Where are @Action for M.E. and MEA @Russell Fleming and ME Action @EspeMor

From papers i have read over past couple of years it us very clear that there is little knowledge of what ME is in children, what key aspects are and every conflation is played to bolster stats.

It is a very dangerous game, and for those who cannot/ do not question things or cannot read a scientific paper, the power dichotomy is very worrying.
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It is going to be a very hard year and the family courts throw out defence for the mother. I am at the family court with a mother next week harrowing is not the word. They are trying to keep them secret and they gag the mother with court orders even if they are innocent.
 
Knowing other mums who have been threatened with / through such processes, thank you @Tilly for all you do.

Linking to another topic re male/ female differences in advocacy this is a strange area in that FII seems to be targeted at females .

Must be those hysterical tendencies, but perhaps highlights why advocacy and direct engagement may be more difficult for some.
 
Amw66 said:
Knowing other mums who have been threatened with / through such processes, thank you @Tilly for all you do.

Linking to another topic re male/ female differences in advocacy this is a strange area in that FII seems to be targeted at females .

Must be those hysterical tendencies, but perhaps highlights why advocacy and direct engagement may be more difficult for some.
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Not only hysterical tendencies but also manipulative which lets the husbands off the hook. It also has something to do with the fact most fathers find it hard to believe professionals could get it so wrong and their wife's could be right.
 
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