Significant other behavioural responses and patient chronic fatigue syndrome symptom fluctuations in the context of daily life: An experience sampling study

Abstract:

OBJECTIVE: Significant other responses to patients’ symptoms are important for patient illness outcomes in chronic fatigue syndrome (CFS/ME); negative responses have been associated with increased patient depression, whilst increased disability and fatigue have been associated with solicitous significant other responses. The current study aimed to examine the relationship between significant other responses and patient outcomes within the context of daily life.

DESIGN: Experience Sampling Methodology (ESM).

METHOD: Twenty-three patients with CFS/ME and their significant others were recruited from specialist CFS/ME services. Sixty momentary assessments, delivered using individual San Francisco Android Smartphones, were conducted over a period of 6 days. All participants reported on affect, dyadic contact, and significant other responses to the patient. Patients reported on symptom severity, disability, and activity management strategies.

RESULTS: Negative significant other responses were associated with increased patient symptom severity and distress reported at the same momentary assessment; there was evidence of a potentially mediating role of concurrent distress on symptom severity. Patient-perceived solicitous responses were associated with reduced patient activity and disability reported at the same momentary assessment. Lagged analyses indicate that momentary associations between significant other responses and patient outcomes are largely transitory; significant other responses were not associated with any of the patient outcomes at the subsequent assessment.

CONCLUSION: The results indicate that significant other responses are important influences on the day-to-day experience of CFS/ME. Further research examining patient outcomes in association with specific significant other behavioural responses is warranted and future interventions that target such significant other behaviours may be beneficial. Statement of contribution What is already known on this subject? The existing literature has identified that significant other responses are important with respect to patient outcomes in CFS/ME. In particular, when examined cross-sectionally and longitudinally, negative and solicitous significant other responses are associated with poorer illness outcomes. This study is the first to examine the momentary associations between negative and solicitous responses, as reported by the patient and significant other, and patient-reported outcomes. An ESM paradigm was used to assess these temporal relationships within the context of participants’ daily life. What does this study add? Negative responses were associated with increased momentary patient distress and symptoms. Perceived solicitousness was associated with activity limitation but less perceived disability. The impact of significant other responses on patient outcomes was found to be transitory.

© 2015 The Authors. British Journal of Health Psychology published by John Wiley & Sons Ltd on behalf of British Psychological Society.

 

Source: Band R, Barrowclough C, Emsley R, Machin M, Wearden AJ. Significant other behavioural responses and patient chronic fatigue syndrome symptom fluctuations in the context of daily life: An experience sampling study. Br J Health Psychol. 2016 Sep;21(3):499-514. doi: 10.1111/bjhp.12179. Epub 2015 Dec 24. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991278/ (Full article)

 

Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study

Abstract:

OBJECTIVES: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis.

METHODS: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data.

RESULTS: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

CONCLUSIONS: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.

 

Source: Brooks J, King N, Wearden A. Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study. Chronic Illn. 2014 Mar;10(1):5-17. doi: 10.1177/1742395312474478. Epub 2013 Apr 12. https://www.ncbi.nlm.nih.gov/pubmed/23585635

Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome

Abstract:

To test an attribution-emotion model of reactions to chronic fatigue syndrome/myalgic encephalomyelitis, 30 significant others of 30 adult patients with chronic fatigue syndrome/myalgic encephalomyelitis were administered a semi-structured interview about their beliefs regarding the patient’s illness and completed questionnaire measures of distress and behavioural responses to the patient. Spontaneous causal explanations (attributions) for illness events, symptom exacerbation and negative patient mood were extracted and coded. Significant others’ distress and negative behavioural responses towards the chronic fatigue syndrome/myalgic encephalomyelitis patient were associated with attributing illness events to causes personal and internal to the patient. Our findings may inform the future family-based interventions for chronic fatigue syndrome/myalgic encephalomyelitis.

 

Source: Brooks JM, Daglish J, Wearden AJ. Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome. J Health Psychol. 2013 Oct;18(10):1288-95. doi: 10.1177/1359105312464670. Epub 2012 Nov 23. https://www.ncbi.nlm.nih.gov/pubmed/23180874

 

Premorbid “overactive” lifestyle in chronic fatigue syndrome and fibromyalgia. An etiological factor or proof of good citizenship?

Abstract:

OBJECTIVE: In a former study, we have shown that patients suffering from chronic fatigue syndrome (CFS) or chronic pain, when questioned about their premorbid lifestyle, reported a high level of “action-proneness” as compared to control groups. The aim of the present study was to control for the patients’ possible idealisation of their previous attitude towards action.

METHODS: A validated Dutch self-report questionnaire measuring “action-proneness” (the HAB) was completed by 62 randomly selected tertiary care CFS and fibromyalgia (FM) patients, as well as by their significant others (SOs).

RESULTS: HAB scores of the patients and those of the SOs were very similar and significantly higher than the norm values. Whether or not the SO showed sympathy for the patient’s illness did not influence the results to a great extent. SOs with a negative attitude towards the illness even characterized the patients as more “action-prone.”

CONCLUSIONS: These results provide further support for the hypothesis that a high level of “action-proneness” may play a predisposing, initiating and/or perpetuating role in CFS and FM.

 

Source: Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommen H. Premorbid “overactive” lifestyle in chronic fatigue syndrome and fibromyalgia. An etiological factor or proof of good citizenship? J Psychosom Res. 2001 Oct;51(4):571-6. http://www.ncbi.nlm.nih.gov/pubmed/11595245

 

Significant other responses are associated with fatigue and functional status among patients with chronic fatigue syndrome

Abstract:

OBJECTIVE: The predictive power of partners’ responses to illness behavior for illness outcomes was investigated among couples in which one person had chronic fatigue syndrome (CFS).

METHODS: One hundred nineteen participants who met case-definition criteria for CFS and were living with a significant other (SO) completed self-report measures of relationship satisfaction, responses of their SO to fatigue symptoms, and outcome measures of fatigue and functional status.

RESULTS: The results indicated that more frequent solicitous SO responses to illness behavior were predictive of greater fatigue-related severity and bodily pain. Solicitous SO responses to fatigue behavior were particularly influential in the context of a satisfactory relationship. In highly satisfactory relationships, solicitous SO responses were associated with significantly greater fatigue severity and fatigue-related disability than in relationships characterized by low or average satisfaction.

CONCLUSIONS: Solicitous SO responses to CFS-related symptoms are associated with poorer patient outcomes, especially in the context of a satisfactory intimate relationship. Because of the cross-sectional nature of the study, the direction of effects cannot be interpreted unambiguously. SOs may be inadvertently positively reinforcing illness-related behavior: Solicitous partners may help the patient more with tasks of daily living, thereby decreasing the patient’s activity level, which may lead to deconditioning and disability. Alternatively, patients with more severe symptoms and disability may present more opportunities for concerned SO responses, which again may be heightened in the context of a caring, satisfactory relationship. In either case, the results suggest that additional research on the role of solicitous SO responses is warranted.

 

Source: Schmaling KB, Smith WR, Buchwald DS. Significant other responses are associated with fatigue and functional status among patients with chronic fatigue syndrome. Psychosom Med. 2000 May-Jun;62(3):444-50. http://www.ncbi.nlm.nih.gov/pubmed/10845358