CFS: a qualitative investigation of young patient's beliefs and coping strategies (Hareide+ 2011)

[Dolphin]

Disabil Rehabil. 2011;33(23-24):2255-63. doi: 10.3109/09638288.2011.568663. Epub 2011 Apr 7.

Chronic fatigue syndrome: a qualitative investigation of young patient's beliefs and coping strategies.

Hareide L1, Finset A, Wyller VB.

Author information

Abstract

PURPOSE:

The aim of this pilot study was to explore illness beliefs and coping strategies among adolescent patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), applying a qualitative methodology.

Recent studies have explored the illness beliefs and coping strategies of adult patients with CFS/ME as possible contributing factors to the disease aetiology.

These studies have mainly used quantitative methods, finding that patients often explain their illness as being due to physical causes, deny psychological causes and make use of passive and avoidant coping strategies.

METHOD:

Semi-structured, in-depth interviews were conducted with nine adolescent patients with CFS/ME, thematic analysis was adapted to the material and the results were interpreted in light of theories of attribution and coping.

RESULTS:

The qualitative method allowed for more complex and nuanced accounts of illness experience.

The findings showed that the adolescents differ from what has previously been reported, applying more varied and flexible illness attributions and coping mechanisms than expected.

CONCLUSIONS:

The heterogeneity suggested in the results has implications.

We suggest three perspectives should be taken into account, both for further research and in clinical practice:
(1) individual differences;
(2) a developmental perspective
and
(3) interactive relational focus.

PMID: 21473686 [PubMed - indexed for MEDLINE]

 

[Dolphin]

One of the authors, Vegard Bruun Wylle, is from the biopsychosocial school of thought on the illness.

The introduction reflects this with the literature review pretty all about the negative coping styles adult patients supposedly have. However, the paper improves in the results and discussion section which more of it being impartial, or even against the BPS, although they sometimes do slip into points I don't accept are justified/are speculative.

 

[Dolphin]

The only part from the introduction I found of much interest:

Studies have also found that patients with CFS/ ME tend to use avoidant and passive coping styles, involving a reduction or avoidance of activity [16,23– 25]. This has been found to be unrelated to whether the causal attributions of the disease were physical or non-physical [26]. Outcome studies associate avoidant coping and disengagement with disability and reduced psychological health [16,25,27]. An additional coping mechanism has also been observed in the early stages of disease development: despite increasing exhaustion, patients can sometimes attempt to cope by ‘pressing on’ and trying to maintain previous levels of activity [28]. When the strategy of ‘pressing on’ eventually fails, the patient often enters a state of chronic fatigue. This suggests that coping styles differ in different phases of the disease [29].

With the former, one would wonder then how much focus there really should be on changing causal attributions. The second underlined bit highlights how patients don't necessarily rest/take to the bed when first ill as claimed (the symptoms are claimed to be due to deconditioning, but in my experience, plenty of people aren't particularly inactive initially).

Here's an example from the results of how patients did continue to be active:

The adolescents that identified an infection at the onset of the fatigue (n=7) had all experienced an extended period without a proper diagnosis or treatment. In fact, all of them understood their present condition as a result of a combination between the undiscovered infection and maintenance of a high level of activity, i.e. inappropriate illness management.

G1: I went to play [a baseball game] because I thought I just had a normal cold. What I did not know was that I had gotten mononucleosis, and then you’re supposed to be at complete rest and not do anything. I didn’t do that ... I just continued to play. That is probably why I have what I have now; it’s like an effect of that . . .

 

[Dolphin]

Some quotes from the results section:

Additional psychological attributions. Two-thirds of informants (n=6) rejected that psychological factors might explain the cause of the disease. B3: ‘I think it is physical. I had such a good life before I got it. I enjoyed school and had lots of friends, so I don’t think there’s anything psychological’.

Negative medical encounters.
A non-a priori theme that became apparent in several interviews was what many of the adolescents reported as negative encounters with health personnel (n=7). In general, a long time between the onset of fatigue and receiving a proper diagnosis, while some (n=2) experienced being misdiagnosed. In addition, they felt they were not believed or taken seriously. B3: ‘I had the feeling that he [the doctor] didn’t take it seriously. He said that it wasn’t anything serious. And I can’t say this has not been serious . . . ’

G2 told about how the doctors had thought she was lazy and flunked school, stating: ‘The worst thing was not to be believed; that I was forced to go to school and that I was pushed. It was horrible’.

It appears these doctors had psychological attributions for the patients’ symptoms.

B1: [The doctor] transformed into a psychologist, and started asking whether I had attempted suicide and that sort of thing. This made me angry. I have never considered that, I have plenty of reasons to live.

All of the informants (n=9) expressed optimism in that they hoped and believed they would get better. G1: ‘I think that I will get well. I hope so. I do not intend to do nothing the rest of my life’.

 

[Dolphin]

Besides symptom severity, information from health practitioners seemed to enhance reduction of activity. Two-thirds told that they had experienced betterment after having been advised by doctors not to overextend themselves. G5 said that the only thing she could do was to: ‘Take it easy and listen to the doctor.’ The doctor had told her that she should: ‘Take things slowly. It is the only medicine’.

Rest also increased fatigue.
Although rest was considered beneficial by most of the informants, especially during the worst periods, there were also examples that rest could increase fatigue. Unlike some other informants, it appeared as if information about the disease and activity moderation had the opposite effect on G4. When she read about CFS/ ME and identified herself with the condition, she quit school and greatly reduced her activities, seemingly initiating a negative cycle in which she experienced a deterioration of her condition. Her own understanding of why she had become worse was not, however, the increased rest, but the fact that she had not taken her condition seriously before:

It’s only now as I relax that I see what I really can’t do. I didn’t think of this before I read about the condition. I have really gotten only worse and worse, but it’s probably because I had not taken care before.

I'm not convinced of the authors' interpretation of this. I think a very plausible alternative explanation is that the girl was doing too much and she has now reached a sustainable level where her symptoms aren't flaring.

 

[Dolphin]

Overextension made it worse.
Everybody had the experience of overextending themselves, especially in the first phase of their disease. This in turn led to increased fatigue and symptom intensity. B1: ‘I worked out, because I was so tired of being sick. I didn’t care if that made me a lot worse afterwards’.

If initially exhausted, activity seemed to make them much worse. B5: ‘If I went back to school too soon after a bad period, it ended with me getting sick much, much longer’.

Also information from health personnel – or lack thereof – had contributed to overextension. B2 said that the lack of information about rest had led him to continue his training:

That summer I worked out a lot. But then I suddenly got a lot worse. I am annoyed that the doctors didn’t say I shouldn’t have worked out, because if I had taken it easy that summer, I might not have developed ME.

Many underlined that they had experienced a significant improvement after they managed to use their energy wisely. B4 told how he managed activity: ‘Never wear out your body and try not to overextend yourself when you feel poorly’.

 

[Dolphin]

Discussion

In the present study, two-thirds of the informants – including all with the simple illness profile – unilaterally attributed their disease to physical – and denied psychological – causes. However, one-third of the informants, all in with the complex illness profile, added psychological attributions to their understanding of their condition. These informants presented a multi-causal understanding and did not apply the traditional dichotomy between psyche and soma. These findings will be discussed more in depth.

Our findings suggest that the unilateral somatic attributions of the five adolescents with the simple illness profile did not appear to be rigid and dominated by defence. On the contrary, these patients’ attributions occurred as the most accessible explanation in the individuals search to understand their illness.

 

[Dolphin]

I thought this was interesting:

It has been reported that subjects explaining their condition solely due to physical causes were less psychologically distressed [40]. This was observed in our sample, as an absence of psychological problems was reported among those subjects who only understood their illness as physical in origin. The three using psychological attributions also reported a greater degree of psychological difficulties. This is in line with studies that report that psychological illness attributions are negatively associated with psychological well-being [41].

40. Chalder T, Power MJ, Wessley S. Chronic fatigue in the community: ‘A question of attribution’. Psychol Med 1996;
26:791–800.
41. Weinman J, Petrie KJ, Moss-Morris R, Horne R. The illness perception questionnaire: a new method for assessing the
cognitive representation of illness. Psychol Health 1996;11: 431–445.

 

[Dolphin]

We noted that for all the patients with the simple illness profile, an external, unilateral use of somatic attribution did not lead to an external localisation of control over psychological health: these patients still seemed to experience themselves as active agents with internal psychological agency. This combination of outer attribution for the cause (not being responsible for their condition) and an inner attribution of control (having psychological agency) appeared to be adaptive to psychological health and decreased experienced helplessness. All of the patients with the complex illness profile also used extensive meaning formation to cope with their condition. The positive attitude and psychological agency of this young group of patients were more optimistic and hopeful than what has been reported in adult patients [e.g. 45].

I thought it was interesting that believing in a physical cause didn't appear to be negative.
I wouldn't be surprised if adults were that different if they were asked at the time of diagnosis, like this group.

As for coping, our findings reflected a flexible experimentation with coping strategies rather than a stable, passive pattern of behaviour. The informants used alternately a passive, avoidant coping and an active approach coping, sometimes to the point of overextension, suggesting a wider variety of coping strategies and a more flexible style than what has been previously reported among adults [e.g. 16,23,24].

Again, I wouldn't be surprised if adults were that different if they were asked at the time of diagnosis, like this group, and if other researchers had been fairer in their presentation of adult patients.

 

[Dolphin]

It is possible to imagine that the broad and varied coping behaviour reflects an explorative coping style that occurs relatively early in the disease process. A more passive and stable disease behaviour that is found in older patients might be more common in a disease that does not improve over time. On the other hand, it is possible that this flexible coping style might help to explain the improvement potential that is observed in young patients compared with older ones.

I'm not convinced by the last sentence in this.

 

[Dolphin]

the two interviewees that received advice from health professionals to increase physical activity (based on misdiagnosis) also experienced increased symptom intensity and greater loss of functioning for an extended period.

Finally, somatic illness attributions did not appear to be negatively associated with an inappropriate coping strategy. On the contrary, all patients with the simple illness profile, using exclusively somatic attributions, showed the most flexible and adaptive coping strategies. In contrast, the patients with the complex illness profile, overall tended to use a more passive coping strategy.

 

[Dolphin]

Our results support the existence of different phases of adjustment where different coping strategies are employed. Taken together, the different stories in the sample showed both how rest and activity could be adaptive in different periods, but also how a unilateral use of either coping mechanism could eventually lead to increased fatigue. This points towards Lazarus’ conclusion that no coping strategy is inherently maladaptive or adaptive, as it all depends on the individual circumstances [46]. A polarised view that tends to correlate specific types of coping to specific results will, according to our findings, lead to simplistic generalisations. An assessment of whether rest or activity is an adaptive coping strategy must therefore be based on the individual patient.

These sorts of views are different from the typical CBT/biopsychosocial school of thought viewpoint.
----
That's it from me.

 

[SilverbladeTE]

1) I have lost most of the capacity that made me, "me"

• I cannot physically or mentally cope with love affairs, please note I said "love" not just "sex" much as latter is great fun, the former's what I've always needed and given. Not having a lass and kids is heart-breaking.

• I can no longer do weight training or martial arts (latter was necessary because I live in what was once one of the most violent areas in Europe, but found the philosophy of it best of all)

• I cannot go fishing, not just physically, I know it would make me very unwell to even try, I cannot afford to get upset not being able to do something I've loved since a little kid. Frankly though after suffering this, and even back when I w as well I never liked harming the wee fishies, I wouldn't want to fish anyway, seen enough suffering.

• It has wrecked my sense of empathy and spirituality, I find that particularly heinous

• It has wrecked my creative capacity. Sad as it may seem to some folks I adore Dungeons & Dragons and loved creating stories and games for it and was published etc, folks should try it, it's like improv theatre and takes a great deal of ability to run well I'm happy being a geek. Likewise it's wrecked my writing and art. hard to explain how/why it has interfered but many of you will understand.
• 
  
• I know how much physical injuries etc should hurt, I know now they hurt more than before by a good margin, after experience with other ailments I'm damn sure M.E. is causing the nervous system to over react, NOT psychology! common problem from diabetes, meningitis and other such that inflame the nervous system. Ic an speak from experience, not a qualification which has sod all to do with reality.

• Despite a lot of rather atrocious or extreme crap, I was not a depressive person. I fought illnesses or meditated.

• was not dumbly macho, but for a man to lose his virility in many senses of the word is humiliating as hell and shameful.

• My lower legs are numb, so not just balance and weakness problems but that as well makes wlaking extremely difficult, similar crap in hands. And this has al come about in months and new thing appeared over past couple of weeks, affected areas if I touch cold things, it feels wet. Sigh. that isn't hysteria, it's some form of problem with the nervous system.

• And last, but not least, now I am suffering something which if I'm lucky maybe a from of hernia, if I'm unlucky its prostate cancer.

• last two added together is scary.

• And I really don't like being around doctors and hospitals

2) Thus to have all that and then some f'ing TOSSPOT BASTARD as usual dismiss it as "illness belief" is like blaming a rape victim for wearing "enticing clothing" or other such PISH!

apologies to original poster and those who bring such things up and debate well
I appreciate you taking time to dissect the ludicrous bullshit of these ass-wanking, inbred, class-ridden, inhumane, merciless reprobates who suck vital time and resources from the teet of Asclepius
I alas don't have your fortitude, patience or good manners and so prefer to call a spade a spade, or, "nincompoop bastard" in this case

oh yeah I should have added to the list: the general crap that M.E. does but one I so used to it one doesn't consider ache pains , headaches, feeling sick as a dog and getting knackered walking like a zombie to shop round the corner, to be "normal"
Frankly, I feel like I woke up in someone else's nightmare, can I please wake up now, pretty please with a cherry on top?

 

[A.B.]

Good comments Dolphin. I would agree with many of the participants. Psychological explanations are part of the problem. They lead to an unsupportive environment (family and doctors), unrealistic expectations, problem solving strategies that are harmful rather than helpful, and generally just lots of blame and despair. Leaving the psychological explanations and the mindset that comes with it behind has been very constructive for me!

In my case, I had two doctors in the family who both favoured psychological interpretations and discouraged actual medical investigation, which is a shame because it could have been very helpful to run proper diagnostic tests early on (my illness has clearly evolved over the years)

I became ill in my teens and at first tried to solve the problem exactly in the same way as some others here: simply trying to maintain normal activity levels. Back then I had periods of exhaustion alternating with almost normal activity. Gradually I sacrificed more and more, despite this, the periods of exhaustion became more frequent, longer, and the periods of relatively normal activity became shorter. Various psychotherapy did nothing but create false expectations, wasting more of my time.

While a biomedical approach hasn't done much to improve my physical health which slowly continues to deteriorate, I feel that it is much more valuable than the previous approach and actually the only sensible approach.

 

[Snowdrop]

@SilverbladeTE

"Sad as it may seem to some folks I adore Dungeons & Dragons"

Why would that be sad? When I was more able we played D&D as a family.
I was either a human cleric or a halfling rogue generally.
We had a great time.

 

[Cheshire]

"illness belief" is like blaming a rape victim for wearing "enticing clothing" or other such PISH!

Yes, I think this image is quite insightfull.

A.B. said:

Psychological explanations are part of the problem. They lead to an unsupportive environment (family and doctors), unrealistic expectations, problem solving strategies that are harmful rather than helpful, and generally just lots of blame and despair. Leaving the psychological explanations and the mindset that comes with it behind has been very constructive for me!

Yes psychological explaination are not empowering, they do not lead someone to take responsabilities, they just bring guilt, that leads to more psychological dispair.

Lots of the doctors I met talked of iatrogenic factors to explain my state, but I'd be happy to see a study of the iatrogenic factors in psychological unwellness in people with so-called "madically unexplained symptoms".

 

[SilverbladeTE]

Snowdrop
well, being a "geek" here was...a struggle, lol.
most folk are nice but the crap that went on, sigh
I am a geek, but I am a SUPER geek

http://lparchive.org/Baldurs-Gate-2-and-Throne-of-Bhaal/Update 48/34-BG2SoAch35022.jpg


yeah it's great to play with the folk you love! played with couple of my cousins and several of our friends
was planning a game because 5th ed was out and not playing for years was getting to me
but...no, I can't cope with travel and playing, and our pal has OCD so he can't come to my home (as I have a dog)
sigh