Distress in significant others of patients with chronic fatigue syndrome: A systematic review

[Dolphin]

Br J Health Psychol. 2016 Nov;21(4):881-893. doi: 10.1111/bjhp.12202.
Distress in significant others of patients with chronic fatigue syndrome: A systematic review of the literature.
Harris K1, Band RJ2, Cooper H3, Macintyre VG3, Mejia A4, Wearden AJ3.
Author information

• 1School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK. kamelia.harris@manchester.ac.uk.
• 2Centre for Applications of Health Psychology, University of Southampton, UK.
• 3School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK.
• 4Institute for Scientific Research and High Technology Services, City of Knowledge, Clayton, Panama.

Abstract
PURPOSE:
The objective of this study was to systematically review existing empirical research assessing levels and correlates of distress in significant others of patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

METHODS:
Systematic searches in CINAHL, Web of Science and PsycINFO were conducted in August 2014. The search was repeated in January 2015 to check for newly published articles. Studies published in English with quantitative, qualitative, or mixed designs exploring distress, poor subjective health, poor mental health, reduced quality of life and well-being, and symptoms of depression and anxiety in significant others (>18 years) of children and adults with CFS/ME were included. Quality appraisal of included studies was carried out. Quantitative and qualitative studies were summarized separately.

RESULTS:
Six articles met eligibility criteria. Two quantitative studies with significant others of adult patients, and one quantitative and two mixed-methods studies with significant others of child patients showed moderate to high levels of distress. One qualitative study (adult patients) found minimal evidence of distress and that acceptance of CFS/ME was related to better adjustment. In the quantitative and mixed-methods studies, significant others who attributed some level of responsibility for symptoms to the patient, or who were female, or whose partners had poorer mental health, had higher levels of distress.

CONCLUSIONS:
The small number of studies to date, the contrary evidence from a qualitative study, and the limited data available on levels of distress in significant others of patients with CFS/ME mean that our conclusion that distress levels are elevated is provisional. We recommend that future qualitative studies focus on this particular topic. Further longitudinal studies exploring correlates of distress within the context of a predictive theoretical model would be helpful. Statement of contribution What is already known on this subject? Chronic fatigue syndrome (CFS/ME) entails considerable economic, social, and personal costs. Uncertainties exist around diagnosis and management. This may lead to particular difficulties for significant others trying to support patients. What does this study add? Few studies have examined distress and its correlates in significant others of people with CFS/ME. Significant others report elevated levels of distress on quantitative measures.

© 2016 The British Psychological Society.

KEYWORDS:
carer distress; chronic fatigue; chronic fatigue syndrome; myalgic encephalomyelitis; systematic review

PMID:
27255790
DOI:
10.1111/bjhp.12202
[PubMed - in process]

 

[Dolphin]

Given some of the authors, I thought that quite a lot of this might be annoying. However they seemed to focus on reporting what was found and not much was annoying that I spotted.

 

[Dolphin]

The talk about Expressed Emotion towards the end of this long paragraph makes me nervous though I have to admit that I am not familiar with what it is being talking about.

In order to move the field forward, future research should study significant other distress within the context of a theoretical approach to understanding it. An understanding of distress within the context of a theoretical model would provide an indication of potentially modifiable factors, which could be addressed in interventions. It is of interest that two studies (Gray et al., 2001; Rangel et al., 2005) showed higher levels of distress in parents of children with CFS/ME than those with juvenile rheumatoid arthritis. It is possible that there are common factors, which predispose children to CFS/ME and their parents to high levels of distress. However, we speculate that patterns of family functioning may be different in the two groups and that part of this difference may be due to the perception that rheumatoid arthritis is a visible and relatively well-understood condition, while CFS/ME is invisible and less well accepted. Parents of children with CFS/ ME may therefore find themselves struggling to understand the condition as well as to explain it to others. If our suggestion is correct, interventions to reduce distress in carers might include elements of education about the condition, and role-plays and practice in explaining it to others. Future research to identify the correlates of distress in parents of children with CFS/ME might therefore systematically measure parental knowledge and beliefs about the condition, and the social impacts of the illness. We know that causal attributions for symptoms are associated with distress in adult partners of adult patients (Brooks et al., 2013). Further exploration of significant others’ beliefs about the illness, as has been done in other conditions, using framework of the Common-Sense Model (Karademas, 2014), may prove worthwhile and again might result in interventions that addressed misperceptions about the illness. Finally, a recent study with significant others of adult patients with CFS/ME has shown that Expressed Emotion (Leff & Vaughan, 1985) may be an important determinant of patients’ response to treatment (Band et al., 2014). Given the associations between Expressed Emotion and carer distress seen in many other physical health conditions (Wearden, Tarrier, Barrowclough, Zastowny, & Rahill, 2000), the relationship between Expressed Emotion and distress in significant others may be fruitful topic for further research. Such research may inform interventions to reduce Expressed Emotion, similar to the skills training interventions, which have been reported in families of patients with eating disorders (Sepulveda et al., 2010).

 

[Dolphin]

Authors reported elevated scores on all measures of distress and noted higher levels of emotional over involvement with the child, illness-related disruption of family interactions, and financial burden in CFS/ME families than in parents of children with arthritis.

I don't know what "emotional over involvement" means in this context but I'm suspicious of its use.

 

[Invisible Woman]

"The small number of studies to date, the contrary evidence from a qualitative study, and the limited data available on levels of distress in significant others of patients with CFS/ME mean that our conclusion that distress levels are elevated is provisional. We recommend that future qualitative studies focus on this particular topic. "

I recommend that they stop wasting money and resources that could be better spent by the likes of Invest in ME.

 

[Molly98]

"What does this study add?"
Well F**k all actually.

I mean what is the point. A 5 year old could have told you this. "Mummy is ill, no one understands what it is, the doctors can't help her, she is too sick to work, daddy is worried and upset and stressed."

Are they just stating the bleeding obvious or what?
If someone can figure out what the point is of this nonsense can you please let me know, because it is absolutely beyond me that they keep coming out with this utter drivel.

The only thing I can possibly think of is that they are trying to manufacture a situation to suggest partners of ME sufferers will also need CBT.

Surely, though, if your partner had cancer, Parkinson's, MS or many other long term illnesses which are pretty life changing you would be distressed. Is this not normal human behaviour?

 

[TiredSam]

If someone can figure out what the point is of this nonsense can you please let me know

To maintain their careers by publishing at best useless and at worst harmful drivel.

Given some of the authors, I thought that quite a lot of this might be annoying.

This paper is evidence of yet more squandered research funds and wasted time by posturing psychs. I'm afraid that alone is enough to get me annoyed, before I even get as far as the content.