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

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.

 

Source: Hareide L, Finset A, Wyller VB. Chronic fatigue syndrome: a qualitative investigation of young patient’s beliefs and coping strategies. Disabil Rehabil. 2011;33(23-24):2255-63. doi: 10.3109/09638288.2011.568663. Epub 2011 Apr 7. https://www.ncbi.nlm.nih.gov/pubmed/21473686

 

Effects of an educational video film in fatigued children and adolescents: a randomised controlled trial

Abstract:

BACKGROUND: In many cases standard management for chronic fatigue syndrome (CFS) in children and adolescents is ineffective.

OBJECTIVE: To evaluate the efficacy of a video film intervention in preventing the development of persistent fatigue and significant school absence in fatigued children and adolescents.

DESIGN: Randomised controlled trial.

PARTICIPANTS: 91 patients with fatigue; 50 were randomly assigned to receive the intervention (video film plus usual care) and 41 to usual care only.

INTERVENTION: A video film on CFS and coping behaviour.

MAIN OUTCOME MEASURES: Self-reported fatigue severity, physical activity, motivation, concentration and school absence.

RESULTS: 79 patients had complete data at 12 months (42 in the video film and 37 in the usual care group). Mean fatigue severity and school absenteeism scores did not differ significantly, but in the intervention group the score for reduced motivation was higher (difference 2.9 (CI 0.1 to 5.7), p=0.038). 18% more patients in the intervention compared to the usual care group also had persistent fatigue with significant school absence. The odds of developing persistent fatigue and of missing >50% of school classes was 3.3 times higher in the intervention than in the usual care group (OR 3.3 (CI 1.0 to 11.3), p=0.046).

CONCLUSION:This particular video film intervention plus usual care in children and adolescents with unexplained fatigue did not prevent an unfavourable outcome and possibly had an adverse effect in that it reduced motivation and increased the incidence of persistent fatigue with significant school absence. The use of this particular film is not recommended.

 

Source: Bakker RJ, van de Putte EM, Kuis W, Sinnema G. Effects of an educational video film in fatigued children and adolescents: a randomised controlled trial. Arch Dis Child. 2011 May;96(5):457-60. doi: 10.1136/adc.2009.172072. Epub 2010 Sep 22. https://www.ncbi.nlm.nih.gov/pubmed/20861404

 

Illness duration and coping style in chronic fatigue syndrome

Abstract:

A sample of patients with chronic fatigue syndrome was recruited to assess coping strategies and illness duration. It was hypothesized that adaptive coping strategies would be higher among those with longer illness duration.

Those in the longer illness duration group reported higher use of active coping, positive reframing, planning, and acceptance, and lower use of behavioral disengagement than those in the shorter illness duration group. No significant differences were found between the two illness duration groups for physical impairment or symptom severity, but the long duration group revealed a lower percentage of participants who were working than the short duration group.

These findings suggest that individuals with longer or shorter duration of the illness have differences in coping styles but not differences in physical impairment or symptom severity.

 

Source: Brown MM, Brown AA, Jason LA. Illness duration and coping style in chronic fatigue syndrome. Psychol Rep. 2010 Apr;106(2):383-93. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036543/ (Full article)

 

The relationship of Fennell phases to symptoms among patients with chronic fatigue syndrome

Abstract:

The Fennell Phase Inventory (FPI) is an instrument designed to measure phases of the illnesses known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The current study explored how the FPI was related to physical and psychological functioning as well as coping style. Based on FPI scores, 111 adults with ME/CFS were placed in one of three groups: crisis, stabilization, or resolution. Results showed that the crisis group demonstrated significantly worse functioning than at least one other group for depression, quality of life, mental functioning, anxiety, and self-efficacy; and utilized less adaptive coping styles. These results indicate that patients with ME/CFS who are in the crisis phase tend to experience more severe psychological and physical symptoms and utilize poorer coping strategies. Those in the resolution phase maintain the most adaptive coping strategies. Implications for these findings are discussed.

 

Source: Reynolds NL, Brown MM, Jason LA. The relationship of Fennell phases to symptoms among patients with chronic fatigue syndrome. Eval Health Prof. 2009 Sep;32(3):264-80. doi: 10.1177/0163278709338558. Epub 2009 Aug 20. https://www.ncbi.nlm.nih.gov/pubmed/19696083

 

The role of coping in the relationship between depression and illness severity in chronic fatigue syndrome

Abstract:

The self-regulatory model (SRM) proposes that both cognitive and emotional illness representations influence the coping processes adopted in response to an illness.

AIM: This study used the SRM to explore the role of coping in the relationship between depression and self-appraisals of illness severity in a population of patients with chronic fatigue syndrome (CFS).

METHODS: The sample comprised 156 participants, 34 men and 121 women, aged between 18 and 78 yrs, who had been medically diagnosed with CFS. Participants were asked to complete three questionnaires: the Cardiac Depression Scale, Ways of Coping Questionnaire, and Severity Subscale of the Illness Perceptions Questionnaire-Revised.

RESULTS: Analyses revealed that almost 70% of the participants were moderately or severely depressed. Additionally, two particular subscales, social support seeking and positive reappraisals, emerged as positively contributing to self-appraisals of illness severity (beta = 0.20 [p < 0.05] and beta = 0.21 [p < 0.05], respectively), thereby supporting the SRM. Furthermore, results indicated that a combination of depression and coping was a better predictor of illness severity than depression alone, accounting for 22% of the variance compared with 8%, respectively.

CONCLUSIONS: The findings suggest that focusing on depression, and particularly coping styles, during treatment interventions could have important implications for therapeutic interventions. This could lead to better treatment strategies for health professionals who work with patients with CFS.

 

Source: Walker K, Lindner H, Noonan M. The role of coping in the relationship between depression and illness severity in chronic fatigue syndrome. J Allied Health. 2009 Summer;38(2):91-9. https://www.ncbi.nlm.nih.gov/pubmed/19623790

 

Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome

Abstract:

OBJECTIVE: The aim of this study was to determine the efficacy of an out-patient, multi-component programme developed for patients with chronic fatigue syndrome (CFS).

METHODS: Twenty-two patients were assessed before and after six months of treatment. Findings were compared with 22 individuals on the waiting list. The programme offered medical care as well as information and counselling to help patients to understand, accept and cope with their illness.

RESULTS: At six months, there were significant differences between the groups for fatigue, self-efficacy and anxiety. Overall, 82% of the treated patients reported feeling better and 23% had improved to such a degree that they were discharged from the clinic. The gains were maintained at twelve months.

CONCLUSION: This programme was found to be both helpful and acceptable and may provide a useful first-line intervention for many patients with CFS.

PRACTICE IMPLICATIONS: Short, pragmatic programmes may be as effective as cognitive-behaviour therapy.

Comment in: Treatment of chronic fatigue syndrome: how to find a ‘new equilibrium’? [Patient Educ Couns. 2009]

 

Source: Goudsmit EM, Ho-Yen DO, Dancey CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Educ Couns. 2009 Nov;77(2):231-6. doi: 10.1016/j.pec.2009.05.015. Epub 2009 Jul 2. https://www.ncbi.nlm.nih.gov/pubmed/19576714

 

A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping

Abstract:

BACKGROUND: Chronic Fatigue Syndrome (CFS) is characterized by unexplained fatigue that lasts for at least 6 months alongside a constellation of other symptoms. CFS was historically thought to be most common among White women of higher socio-economic status. However, some recent studies in the USA suggest that the prevalence is actually higher in some minority ethnic groups. If there are convincing differences in prevalence and risk factors across all or some ethnic groups, investigating the causes of these can help unravel the pathophysiology of CFS.

METHODS: A systematic review was conducted to explore the relationship between fatigue, chronic fatigue (CF–fatigue lasting for 6 months), CFS and ethnicity. Studies were population-based and health service-based. Meta-analysis was also conducted to examine the population prevalence of CF and CFS across ethnic groups.

RESULTS: Meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a higher risk of CFS [Odds Ratio (OR) 2.95, 95% confidence interval (CI): 0.69-10.4; OR = 11.5, CI: 1.1-56.4, respectively] and CF (OR = 1.56, CI: 1.03-2.24; OR = 3.28, CI: 1.63-5.88, respectively). Minority ethnic groups with CF and CFS experience more severe symptoms and may be more likely to use religion, denial and behavioural disengagement to cope with their condition compared with the White majority.

CONCLUSIONS: Although available studies and data are limited, it does appear that some ethnic minority groups are more likely to suffer from CF and CFS compared with White people. Ethnic minority status alone is insufficient to explain ethnic variation of prevalence. Psychosocial risk factors found in high-risk groups and ethnicity warrant further investigation to improve our understanding of aetiology and the management of this complex condition.

 

Source: Dinos S, Khoshaba B, Ashby D, White PD, Nazroo J, Wessely S, Bhui KS. A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping. Int J Epidemiol. 2009 Dec;38(6):1554-70. doi: 10.1093/ije/dyp147. Epub 2009 Apr 6. http://ije.oxfordjournals.org/content/38/6/1554.long (Full article)

 

Hyperventilation in patients with chronic fatigue syndrome: the role of coping strategies

Abstract:

Hyperventilation has been suggested as a concomitant and possible maintaining factor that may contribute to the symptom pattern of chronic fatigue syndrome (CFS). Because patients accepting the illness and trying to live with it seem to have a better prognosis than patients chronically fighting it, we investigated breathing behavior during different coping response sets towards the illness in patients with CFS (N=30, CDC criteria).

Patients imagined a relaxation script (baseline), a script describing a coping response of hostile resistance, and a script depicting acceptance of the illness and its (future) consequences. During each imagery trial, end-tidal PCO2 (Handheld Capnograph, Oridion) was measured. After each trial, patients filled out a symptom checklist. Results showed low resting values of PetCO2 overall, while only imagery of hostile resistance triggered a decrease and deficient recovery of PetCO2. Also, more hyperventilation complaints and complaints of other origin were reported during hostile resistance imagery compared with acceptance and relaxation.

In conclusion, hostile resistance seems to trigger both physiological and symptom perception processes contributing to the clinical picture of CFS.

 

Source: Bogaerts K, Hubin M, Van Diest I, De Peuter S, Van Houdenhove B, Van Wambeke P, Crombez G, Van den Bergh O. Hyperventilation in patients with chronic fatigue syndrome: the role of coping strategies. Behav Res Ther. 2007 Nov;45(11):2679-90. Epub 2007 Jul 20. https://www.ncbi.nlm.nih.gov/pubmed/17719001

 

Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies

Abstract:

OBJECTIVE: To provide insight into patients’ and doctors’ experiences with CFS.

METHODS: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.

RESULTS: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients’ senses of identity. They felt severely ill, yet blamed and dismissed. Patients’ beliefs and causal attributions oppose the doctor’s understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority. For patients, experience of discreditation could lead to withdrawal and behavioural disengagement.

CONCLUSION: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.

PRACTICE IMPLICATIONS: Doctors can support patients’ coping by supporting the strong sides of the patients instead of casting doubt upon them.

 

Source: Larun L, Malterud K. Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies. Patient Educ Couns. 2007 Dec;69(1-3):20-8. Epub 2007 Aug 14. https://www.ncbi.nlm.nih.gov/pubmed/17698311

 

Coping styles in people with chronic fatigue syndrome identified from the general population of Wichita, KS

Abstract:

OBJECTIVE: Studies of primary and tertiary care patients suggest that maladaptive coping styles contribute to the pathogenesis and maintenance of chronic fatigue syndrome (CFS). We assessed coping styles in persons with unexplained fatigue and nonfatigued controls in a population-based study.

METHODS: We enrolled 43 subjects meeting the 1994 Research Case Definition of CFS, matching them with 61 subjects with chronic unexplained fatigue who did not meet criteria for CFS [we term them insufficient symptoms or fatigue (ISF)] and 60 non-ill (NI) controls. Coping styles and clinical features of CFS were assessed using standard rating scales.

RESULTS: Subjects with CFS and ISF reported significantly more escape-avoiding behavior than NI controls. There were no differences between the CFS and ISF subjects. Among participants with CFS, escape-avoiding behavior was associated with fatigue severity, pain, and disability.

CONCLUSIONS: We demonstrate significantly higher reporting of maladaptive coping in a population-based sample of people with CFS and other unexplained fatiguing illnesses defined by reproducible standardized clinical empirical means in comparison to NI controls.

 

Source: Nater UM, Wagner D, Solomon L, Jones JF, Unger ER, Papanicolaou DA, Reeves WC, Heim C. Coping styles in people with chronic fatigue syndrome identified from the general population of Wichita, KS. J Psychosom Res. 2006 Jun;60(6):567-73. https://www.ncbi.nlm.nih.gov/pubmed/16731231