Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia

Åsbring, Pia; Närvänen, Anna-Liisa

doi:10.1016/s0277-9536(02)00420-3

Cited by 164 publications

(188 citation statements)

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“…At a micro level, participants describe being trapped in destructive interactions (“weekly battles with the doctor”) characterized by the “poor”, “awful”, and “dreadful” behaviours (“ridicule”) they encounter. Research on doctors’ attitudes supports these experiences: doctors express suspicion, mistrust and negative stereotyping of these patients (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012; Åsbring & Närvänen, 2003; Donalek, 2009; Raine, Carter, Sensky, & Black, 2004), characterize them as unmotivated and pessimistic (Guise, McVittie, & McKinlay, 2010), and sometimes label them as hypochondriacs (Schoofs, Bambini, Ronning, Bielak, & Woehl, 2004). At a meso level, participants depict being trapped in a system that cannot or will not help them (“treatment … is so poor”), a “holding pattern” against which they are “fighting an uphill battle”.…”

Section: Discussionmentioning

confidence: 99%

“…When doctors attribute MUPS conditions to mental and social causes, patients often perceive it as psychologising and trivialising their symptoms (Anderson et al, 2012; Åsbring & Närvänen, 2004; Rosendal et al, 2013; Schoofs et al, 2004). The lack of biomedical knowledge and efficient medical treatment limits doctors’ ability to help these patients, and this might lead them to distance themselves (Åsbring & Närvänen, 2003). Doctors who encounter patients with ambiguous symptoms have also been shown to make less effort to elucidate and validate symptoms than for those with more straightforward conditions (Epstein et al, 2006).…”

Section: Discussionmentioning

confidence: 99%

“…For doctors who are trained to work on the basis of evidence-based biomedical knowledge and technological proof, somatic symptoms unsubstantiated by observable biomarkers to verify organic disease are challenging. When their ability to identify, explain and treat patients’ ailments is constrained by an uncertain biomedical foundation, they often feel powerless, inadequate, dissatisfied, frustrated and anxious (Åsbring & Närvänen, 2003; Chew-Graham, Cahill, Dowrick, Wearden, & Peters, 2008; Chew-Graham, Dowrick, Wearden, Richardson, & Peters, 2010; Howman, Walters, Rosenthal, Ajjawi, & Buszewicz, 2016; Libert et al, 2016; Murray, Toussaint, Althaus, & Löwe, 2016). For patients, experiences of uncertainty can increase psychological distress, intensify sensitivity to pain (Rosendal et al, 2013; Taylor, Marshall, Mann, & Goldberg, 2012; Weiland et al, 2012; Wright, Afari, & Zautra, 2009), and result in poorer health (Neville, 2003), reduced quality of life and diminished confidence (Ogden et al, 2002).…”

Section: Introductionmentioning

confidence: 99%

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“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Lian

Robson

2017

International Journal of Qualitative Studies on Health and Well

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Purpose: Clinical encounters related to medically unexplained physical symptoms (MUPS) are associated with high levels of conflict between patients and doctors. Collaborative difficulties are fused by the medical uncertainty that dominates these consultations. The main aim of this study is to explore the interactional dynamics of clinical encounters riddled by medical uncertainty, as experienced by people living with long-term medically unexplained fatigue in Norway. Method: A qualitative thematic analysis of written texts from 256 study participants. Results: We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients’ experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. Conclusion: When physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients’ perspectives and capabilities in clinical practice, such partnerships cannot be achieved.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Lian

Robson

2017

International Journal of Qualitative Studies on Health and Well

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“…Asbring & Narvanen [18] point to a discrepancy between the ideal, learnt during medical training, of diagnosable and curable diseases with biological causes and objective findings, and the reality encountered in practice of people suffering from illness and social distress, who present with subjective symptoms and need of care.…”

Section: Epistemological Incongruencementioning

confidence: 99%

“…Asbring & Narvanen [18] also emphasize the interviewed physicians' experience of helplessness, frustration and failure, but more in terms of their professional identity being threatened when they were unable to help their patients. The experience of a negative power balance was related to the limits of their medical capacity.…”

Section: Patients Were Described As 'Frustrating' or 'Heartsink' Expmentioning

confidence: 99%

What is the problem with medically unexplained symptoms for GPs? A meta -synthesis of qualitative studies

Johansen

Risør

2017

Patient Education and Counseling

101

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Please cite this article as: Johansen May-Lill, Risor Mette Bech.What is the problem with medically unexplained symptoms for GPs? A meta-synthesis of qualitative studies.Patient Education and Counseling http://dx.doi.org/10.1016/j.pec. 2016.11.015 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Highlights:-For GPs, dominant disease models (biomedical or psychosocial) often do not fit with reality -Both patients and doctors struggle with and suffer from this incongruence -In the lack of congruent disease models, a validating doctorpatient relationship can be a lifeline 2 Abstract:Objective To gain a deeper understanding of challenges faced by GPs when managing patients with MUS. MethodsWe used meta-ethnography to synthesize qualitative studies on GPs' perception and management of MUS. ResultsThe problem with MUS for GPs is the epistemological incongruence between dominant disease models and the reality of meeting patients suffering from persistent illness. GPs have used flexible approaches to manage the situation, yet patients and doctors have had parallel negative experiences of being stuck, untrustworthy and helpless. In the face of cognitive incongruence, GPs have strived to achieve relational congruence with their patients. This has led to parallel positive experiences of mutual trust and validation. With more experience, some GPs seem to overcome the incongruences, and later studies point towards a reframing of the MUS problem. ConclusionFor GPs, the challenge with MUS is most importantly at an epistemological level. Hence, a full reframing of the problem of MUS for GPs (and for patients) implies broad changes in basic medical knowledge and education. 3Practice Implications Short-term: Improve management of patients with MUS by transferring experience-based, reality-adjusted knowledge from senior GPs to juniors. Long-term: Work towards new models of disease that integrate knowledge from all relevant disciplines.199 words

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Questioning Biomedicine's Privileging of Disease and Measurability

Kroll

2021

AMA Journal of Ethics

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Within biomedicine, the diagnosis of disease is often privileged over a patient's experience of illness. Yet up to 30% of primary care visits might be attributable to persistent illness without a diagnosed disease, including functional somatic syndromes like fibromyalgia and chronic fatigue syndrome. When clinicians are unable to diagnose disease or correlate symptoms with measurable changes in biomarkers, patients experiencing such an illness are at increased risk for suspicion, misplaced questioning, or having their motives misinterpreted through damaging social and cultural narratives about gender, race, ethnicity, socioeconomic status, or disability. Adhering strictly to a biomedical model of thinking about disease and diagnosis can prevent clinicians from empathically engaging with patients and helping them navigate their illness experiences.To claim one AMA PRA Category 1 Credit TM for the CME activity associated with this article, you must do the following: (1) read this article in its entirety, (2) answer at least 80 percent of the quiz questions correctly, and (3) complete an evaluation. The quiz, evaluation, and form for claiming AMA PRA Category 1 Credit TM are available through the AMA Ed Hub TM .

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Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia

Cited by 164 publications

References 20 publications

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

What is the problem with medically unexplained symptoms for GPs? A meta -synthesis of qualitative studies

Questioning Biomedicine's Privileging of Disease and Measurability

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