Illness perceptions in adolescents with CFS (2019) Cara Haines, Maria Loades, Cara Davis

MeSci

MeSci

Senior Member (Voting Rights)
Source: Clinical Child Psychology and Psychiatry

Preprint

Date: February 15, 2019

URL: https://journals.sagepub.com/doi/full/10.1177/1359104519829796

Illness perceptions in adolescents with chronic fatigue syndrome and other physical health conditions: Application of the common sense model
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Cara Haines(1), Maria Loades(1,2), Cara Davis(1)

1 Department of Psychology, University of Bath, UK.
2 Bristol Medical School, University of Bristol, UK.

Abstract

Background

The common sense model (CSM) proposes that illness perceptions guide coping and illness management, which subsequently affects outcomes. Chronic fatigue syndrome (CFS) is associated with severe functional impairment. CFS is distinct from other physical health conditions in that individuals can experience high levels of uncertainty, stigma and disbelief from others. This study aimed to compare illness perceptions in adolescents with CFS with other physical health conditions, using a cross-sectional, between-groups design.

Methods

Adolescents (aged 11-18) with CFS (n = 49), type 1 diabetes (n = 52) and juvenile idiopathic arthritis (n = 42) were recruited through National Health Service (NHS) clinics and online, and completed a series of questionnaires.

Results

Adolescents with CFS differed on the perceived consequences, timeline, personal control, treatment control, identity and understanding dimensions of illness perceptions. Except for identity, these dimensions were predicted by health condition even when accounting for age, gender, fatigue, physical functioning, anxiety and depression.

Conclusions

Results offer preliminary evidence for the applicability of the CSM in adolescents, with implications for supporting adolescents with physical health conditions. Results suggest that psychological interventions targeting perceived control, understanding and identity may have particular utility for adolescents with CFS.

Keywords: CFS, JIA, diabetes, illness representations, common sense model
 
MeSci said:
Adolescents with CFS differed on the perceived consequences, timeline, personal control, treatment control, identity and understanding dimensions of illness perceptions. Except for identity, these dimensions were predicted by health condition even when accounting for age, gender, fatigue, physical functioning, anxiety and depression.
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So people with ME, diabetes and arthritis have different perceptions about their illness? What a surprise. How can a paper get published with no data in the abstract?

The more drivel that comes out of Bath and Bristol the less credible any of their stuff becomes.
 
It in't the common sense model. It is the popular prejudice old wive's tales model, as we all know. And, as Lewis Walpert said, science is about discovering that the world isn't necessarily the way common sense (or old wives) might paint it. Often it is unexpected.
 
So

perceived consequences, timeline, personal control, treatment control, understanding dimensions of illness perceptions

were

predicted by health condition

For an illness where there isn't any real treatments, the illness by nature fluctuates and is nearly impossible to predict and how severe the consequense will be, leaving patients with little control and even the worlds best scientist are working on understanding......?

I'd say these kids are spot on. Poor kids :broken_heart:
 
If there should be any point in comparing illness perceptions in ME kids with other ill kids - then they should be compared with other not well understood illnesses, with no treatments options etc. This isn't comparing the kids perceptions - but how the lived experience with a more well-known disease differs from kids living with a less understood illness.

If these researchers could change their own perceptions over to the actual lived experience for kids with ME, how it is to manouver health services etc with a much questioned illness, and how things could be improved for the kids, they might actually do something useful.

" Results suggest that psychological interventions targeting perceived control, understanding and identity may have particular utility for adolescents with CFS."

Totally unlogical - results suggest that we should help children with ME gain some actual control.
 
inox said:
If there should be any point in comparing illness perceptions in ME kids with other ill kids - then they should be compared with other not well understood illnesses, with no treatments options etc. This isn't comparing the kids perceptions - but how the lived experience with a more well-known disease differs from kids living with a less understood illness.
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Yes, the lack of personal control is attributed to the patients perception. That is completely stupid.
I have another condition which is far better known than ME. I have a very strong sense of personal control for this condition; whereas I barely have for ME (I do not control anything, exept that I can avoid crashes by pacing as much as I can, which as everybody knows is very difficult).
 
Haines et al. said:
CFS group. CFS participants were recruited from a specialist paediatric CFS team at the Royal United Hospital, Bath, as part of a larger study. Participants were recruited following diagnosis, but prior to receiving intervention from the service. CFS diagnoses were confirmed according to NICE (2007) criteria.
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That is Esther Crawley's clinic.
http://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/info.asp

Haines et al. said:
JIA and T1D groups. JIA and T1D participants aged 11–17 years were recruited from Bristol Royal Hospital for Children and online.
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Haines et al. said:
In contrast to our prediction, no difference was found in the emotional response subscale across conditions. This is somewhat surprising given the uncertainty associated with CFS, participants’ ratings of the severe impact on life and the higher depression scores present in participants with CFS. Given that CFS participants were most likely to attribute the cause of their illness to psychological factors, it is possible that adolescents with CFS are more likely to view CFS as a consequence of psychological difficulties, rather than the other way around. However, qualitative interviews with adolescents with CFS and depression found that most felt CFS predated depression (Taylor, Loades, Brigden, Collin, & Crawley, 2017)
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This shows clear selection biases in the CFS patients that does not necessarily exist in the other samples, namely referal to a clinic that focuses on psychological treatments. These differences between groups therefore are not generalisable and it says as much under the "limitations" part of the manuscript...
 
MeSci said:
Results suggest that psychological interventions targeting perceived control, understanding and identity may have particular utility for adolescents with CFS.
Click to expand...

I was wondering how they came to that conclusion.

The common sense model (CSM) of illness representation (Diefenbach & Leventhal, 1996; see
Figure 1) proposes that individuals hold implicit cognitive and emotional perceptions of their ill-
nesses (Hagger & Orbell, 2003).
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The distinct illness experience in CFS means illness perceptions could hold poten-
tial for refining and improving interventions, and for reducing the distressing impact of CFS.
Cognitive-behavioural therapy (CBT) is the treatment recommended by NICE (2007) for CFS.
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Indeed, an increased sense of control has been hypothesised as
being an important mediator for treatment outcomes in CBT for CFS in adults (Wiborg et al.,
2012).
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The perception of a less chronic timeline in CFS participants compared with JIA and T1D sup-
ports the hypothesis and is consistent with previous research with adults (Dickson et al., 2009;
Moss-Morris & Chalder, 2003).
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CBT is the evidence-based treatment recommended by NICE (2007) for adolescents with CFS;
evidence shows that with specialist treatment, up to two-thirds of young people recover from CFS
(Lloyd, Chalder, & Rimes, 2012; Nijhof, Bleijenberg, Uiterwaal, Kimpen, & van de Putte, 2012;
Nijhof et al., 2013). However, the precise mechanisms of change in CBT for CFS are unclear; a
better understanding of these mechanisms may improve the efficacy.
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Part of the CBT 'fight back'?
 
The dumbening of medical science continues. I'm really looking forward to this fantastically professional group of intrepid researchers puzzling over how adding water to a sponge wets it and why does the sponge thinks it is wetter when more water is added despite this being quite unusual to a common sense approach to the world where sponges naturally unwet themselves by some sort of voodoo magic.

 
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