Rethinking physiotherapy for patients with fibromyalgia - lessons learnt from qualitative studies

Mengshoel, Anne Marit; Grape, Hedda Eik

doi:10.1080/10833196.2017.1377975

Cited by 6 publications

(5 citation statements)

References 74 publications

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“…Several studies show for instance that patients with fibromyalgia feel left alone in their search for treatment. Furthermore, they often experience not being respected when presenting their health problems in encounters with health professionals (38)(39)(40)(41)(42). A plausible interpretation is that when the presence of objective signs of disease, in medical terms, are not identified, the patients are left in an unclarified and vulnerable situation.…”

Section: Discussionmentioning

confidence: 99%

Patients’ quest for recognition and continuity in health care: time for a new research agenda?

Gjengedal

Sviland

Moi

et al. 2019

Scandinavian Caring Sciences

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User involvement is important in democratization of healthcare and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken 2 seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.

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Section: Discussionmentioning

confidence: 99%

Patients’ quest for recognition and continuity in health care: time for a new research agenda?

Gjengedal

Sviland

Moi

et al. 2019

Scandinavian Caring Sciences

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“…Many of the illness experiences of patients with fibromyalgia share similar features (Briones-Vozmediano et al, 2013;Mengshoel and Grape, 2017;Eik Grape et al, 2017). Their illness narratives generally start with pain that does not resolve as expected, followed by many visits to different healthcare personnel, who request various tests to rule out other pathologies, mainly rheumatological or psychiatric disorders.…”

Section: Patients' Illness Experiencesmentioning

confidence: 99%

Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia

Heggen

Berg

2021

Humanit Soc Sci Commun

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The aim of this paper is to analyze epistemic interactions in healthcare practices. In clinical encounters, participants exchange and interpret knowledge. Patients suffering from fibromyalgia often report that healthcare professionals do not take their testimonies and interpretations seriously. Such experiences will be explored using the concept of epistemic injustice. Epistemic injustice is wrong done to someone in their capacity as a knower. In healthcare settings, epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. First, we will argue that patients’ epistemic marginalization can be reframed as an epistemological problem. There is a gap between patients’ lived experience of illness and professionals’ conceptualization of illness as disease. This gap leads to two distinct conceptualizations, possibly causing harm to patients’ capacity as first-hand knowers. Second, we will analyze epistemic injustice in light of the dominant model of knowledge translation in medicine and healthcare, namely evidence-based practice (EBP). EBP intends to diminish the gap between scientific knowledge and clinical practice. EBP prioritizes knowledge obtained through clinical research over other forms of clinical knowledge and has the potential for harmful epistemic devaluation of patients’ stories.

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“…Life is described to be “governed by pain” (McMahon et al, 2012a ) leading to worries and uncertainty about what is the right thing to do and what can be expected in the future (Taylor et al, 2016 ). Patients monitor their body carefully to find out what triggers the symptoms (Mengshoel & Grape, 2017 ), and adjustments may occur in terms of downregulation of daily life (Sim & Madden, 2008 ). As described, qualitative studies have focused on how FM symptoms are experienced and lived.…”

Section: Introductionmentioning

confidence: 99%

A long, winding trajectory of suffering with no definite start and uncertain future prospects – narratives of individuals recently diagnosed with fibromyalgia

Mengshoel

2022

International Journal of Qualitative Studies on Health and Well

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Purpose Fibromyalgia is a contested illness with unknown aetiology and poorly understood development. The present aim is to explore the pre-diagnostic illness trajectory narrated by individuals recently diagnosed with fibromyalgia (FM). Methods Individual interviews about the course of the illness were conducted with seven women and three men (age from early 20s to 50s) who had recently been diagnosed with FM. A narrative analysis of what the interviewees told and how the stories were narrated was conducted. Results The findings are expressed by three storylines. “Strenuous life and alerted body preluding illness” displays a difficult, unsupported life and bodily sensitivity to stimuli. “Recurrent pains unfolding to become a lasting and complex illness” describes individuals pushing themselves to meet social obligations until they come to a full stop. “Diagnosed but still uncertain presence and future” portrays satisfaction with finally being diagnosed with FM and being supported by others, but still there are no solutions as to do about it. Conclusions The three storylines portray a long, winding trajectory of suffering starting before the onset of illness, and unfolding illness gradually becoming persistent and overwhelming. Finally, a diagnosis of FM is arrived at, but how the situation will evolve is uncertain.

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Rethinking physiotherapy for patients with fibromyalgia - lessons learnt from qualitative studies

Cited by 6 publications

References 74 publications

Patients’ quest for recognition and continuity in health care: time for a new research agenda?

Patients’ quest for recognition and continuity in health care: time for a new research agenda?

Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia

A long, winding trajectory of suffering with no definite start and uncertain future prospects – narratives of individuals recently diagnosed with fibromyalgia

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