A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors

Guise, Jennifer; McVittie, Chris; McKinlay, Alan

doi:10.1177/1359105309350515

Cited by 31 publications

(26 citation statements)

References 35 publications

(53 reference 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%

“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%

“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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“…These restrictions are removed in an online support group where acceptable grieving practices are constructed differently and perhaps more empathetically. Online support group members are often more willing to share their feelings with those having similar experiences, making it necessary for newcomers to the community to construct their posts in particular ways to be seen as legitimate members (Guise, McVittie, & McKinlay, 2010;Malik & Coulson, 2010).…”

Section: Discussionmentioning

confidence: 99%

Grieving Online: Newcomers’ Constructions of Grief in an Online Support Group

Varga

Paulus

2013

Death Studies

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Research into peer conversations in online grief support groups remains scarce. The authors used discourse analysis to examine 107 initial posts to one such group to examine how newcomers constructed their initial posts to display their eligibility for membership. The authors identified three discursive features: formulating unusual stories of loss, describing uncontrollable emotional and physical states, and engaging in "troubles telling." These discursive patterns illustrate how grief is constructed in ways that may simultaneously conform to and resist norms around grief that exist offline. Implications for practitioners include the need to support individuals through validation of their "nonnormal" grief.

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“…Diabetes affects more than 5% of the British population and has been highlighted by the National Health Service as a key focus of the effort to improve chronic disease management in the United Kingdom [25]. The other sample consisted of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by fatigue, pain, and impaired cognitive functioning, and affects up to 100,000 people per year in the United Kingdom [26]. …”

Section: Introductionmentioning

confidence: 99%

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

2016

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BackgroundThe ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members.ObjectiveThere has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions.MethodsSemistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.ResultsThe findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors.ConclusionsInterviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

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A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors

Cited by 31 publications

References 35 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

Grieving Online: Newcomers’ Constructions of Grief in an Online Support Group

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

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