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1.
Med Humanit ; 49(4): 725-734, 2023 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-37620040

RESUMO

In this study, we conduct a detailed analysis of qualitative survey data focusing on adult populations in the UK, Japan and Mexico to address the following question: How has the COVID-19 pandemic changed people's lived experience of their bodies, other people's bodies and the world? We identify five themes: (i) fear and danger, (ii) bodily doubt and hypervigilance, (iii) risk and trust, (iv) adapting and enduring and (v) changes in perspective. We use two theoretical frameworks: first, Mary Douglas' anthropological work on purity, risk, danger and symbolism is applied to understand how social and cultural meanings attached to the body have changed during the pandemic. Second, we use the concept of bodily doubt developed by Havi Carel to interpret how people experience their bodies and other people's bodies differently during the pandemic. While we recognise the significant variation in people's embodied experience of the pandemic, our findings suggest there are commonalities that span different countries and cultures. Specifically, we look at responses to COVID-19 protective countermeasures such as national lockdowns and physical distancing which we suggest have reduced people's ability to put faith in their own bodies, trust other people and trust the political leadership. We conclude by proposing that the changes to our lived experience during the COVID-19 pandemic have prompted changes in perspective and a renewed focus on what people consider important in life from a social, moral, cultural and political point of view.


Assuntos
COVID-19 , Adulto , Humanos , Controle de Doenças Transmissíveis , Pandemias , Emoções , Antropologia
4.
Cont Philos Rev ; 54(2): 201-217, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34720686

RESUMO

The phenomenological method (or rather, methods) has been fruitfully used to study the experience of illness in recent years. However, the role of illness is not merely that of a passive object for phenomenological scrutiny. I propose that illness, and pathology more generally, can be developed into a phenomenological method in their own right. I claim that studying cases of pathology, breakdown, and illness offer illumination not only of these experiences, but also of normal function and the tacit background that underpins it. In particular, I claim that the study of embodiment can be greatly enhanced, and indeed would be incomplete, without attending to bodily breakdown and what I term bodily doubt. I offer an analogy between illness and Husserl's epoché, suggesting that both are a source of distancing, and therefore motivate a reflective stance.

6.
J Mater Cult ; 26(2): 122-141, 2021 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-35273452

RESUMO

In this article, the authors consider breathless adults with advanced non-malignant lung disease and their relationship with health objects. This issue is especially relevant now during the Covid-19 pandemic, where the experiences of breathlessness and dependence on related medical objects have sudden and global relevance. These objects include ambulatory oxygen, oxygen concentrators and inhalers, and non-pharmacological objects such as self-monitoring devices and self-management technologies. The authors consider this relationship between things and people using an interdisciplinary approach employing psychoanalytic theory (in particular Winnicott's theory of object relations and object use), Science and Technology Studies (STS) and phenomenology. This collaborative approach allows them to relate patient use of health objects to ways of thinking about the body, dependency, autonomy, safety and sense-making within the context of palliative care. The authors illustrate the theoretical discussion with three reflective vignettes from therapeutic practice and conclude by suggesting further interdisciplinary research to develop the conceptual and practice-based links between psychoanalytic theory, STS and phenomenology to better understand individual embodied experiences of breathlessness. They call for palliative care-infused, psychoanalytically informed interventions that acknowledge breathless patients' dependence on things and people, concomitant with the need for autonomy in being-towards-dying.

8.
Eur J Philos ; 28(1): 199-213, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32421021

RESUMO

We develop a broader, more fine-grained taxonomy of forms of transformative experience, inspired by the work of L. A. Paul. Our vulnerability to such experiences arises, we argue, due to the vulnerability, dependence, and affliction intrinsic to the human condition. We use this trio to distinguish a variety of positively, negatively, and ambivalently valenced forms of epistemically and/or personally transformative experiences. Moreover, we argue that many transformative experiences can arise gradually and cumulatively, unfolding over the course of longer periods of time.

10.
Lit Med ; 38(2): 248-250, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33518540
11.
Med Humanit ; 45(3): 294-303, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31371484

RESUMO

Health research is often bounded by disciplinary expertise. While cross-disciplinary collaborations are often forged, the analysis of data which draws on more than one discipline at the same time is underexplored. Life of Breath, a 5-year project funded by the Wellcome Trust to understand the clinical, historical and cultural phenomenology of the breath and breathlessness, brings together an interdisciplinary team, including medical humanities scholars, respiratory clinicians, medical anthropologists, medical historians, cultural theorists, artists and philosophers. While individual members of the Life of Breath team come together to share ongoing work, collaborate and learn from each other's approach, we also had the ambition to explore the feasibility of integrating our approaches in a shared response to the same piece of textual data. In this article, we present our pluralistic, interdisciplinary analysis of an excerpt from a single cognitive interview transcript with a patient with chronic obstructive pulmonary disease. We discuss the variation in the responses and interpretations of the data, why research into breathlessness may particularly benefit from an interdisciplinary approach, and the wider implications of the findings for interdisciplinary research within health and medicine.


Assuntos
Pesquisa Biomédica/métodos , Dispneia , Relações Interprofissionais , Comportamento Cooperativo , Interpretação Estatística de Dados , Humanos , Comunicação Interdisciplinar
12.
J Med Ethics ; 45(9): 592-593, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31311852

RESUMO

In this short commentary, I reflect on the new definition of disease proposed by Powell and Scarffe. I suggest that the method they appeal to as objective, namely, rational justification, is open to several criticisms, which I outline and discuss.

13.
Eur Respir J ; 53(6)2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31000673

RESUMO

INTRODUCTION: Lymphangioleiomyomatosis (LAM) occurs either associated with tuberous sclerosis complex (TSC) or as sporadic disease (S-LAM). Risk factors for development of S-LAM are unknown. We hypothesised that DNA sequence variants outside of TSC2/TSC1 might be associated with susceptibility for S-LAM and performed a genome-wide association study (GWAS). METHODS: Genotyped and imputed data on 5 426 936 single nucleotide polymorphisms (SNPs) in 426 S-LAM subjects were compared, using conditional logistic regression, with similar data from 852 females from COPDGene in a matched case-control design. For replication studies, genotypes for 196 non-Hispanic White female S-LAM subjects were compared with three different sets of controls. RNA sequencing and immunohistochemistry analyses were also performed. RESULTS: Two noncoding genotyped SNPs met genome-wide significance: rs4544201 and rs2006950 (p=4.2×10-8 and 6.1×10-9, respectively), which are in the same 35 kb linkage disequilibrium block on chromosome 15q26.2. This association was replicated in an independent cohort. NR2F2 (nuclear receptor subfamily 2 group F member 2), a nuclear receptor and transcription factor, was the only nearby protein-coding gene. NR2F2 expression was higher by RNA sequencing in one abdominal LAM tumour and four kidney angiomyolipomas, a LAM-related tumour, compared with all cancers from The Cancer Genome Atlas. Immunohistochemistry showed strong nuclear expression in both LAM and angiomyolipoma tumours. CONCLUSIONS: SNPs on chromosome 15q26.2 are associated with S-LAM, and chromatin and expression data suggest that this association may occur through effects on NR2F2 expression, which potentially plays an important role in S-LAM development.


Assuntos
Fator II de Transcrição COUP/genética , Neoplasias Renais/genética , Neoplasias Pulmonares/genética , Linfangioleiomiomatose/genética , Idoso , Idoso de 80 Anos ou mais , Sequência de Bases , Estudos de Casos e Controles , Feminino , Estudo de Associação Genômica Ampla , Genótipo , Humanos , Internacionalidade , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Polimorfismo de Nucleotídeo Único
17.
Theor Med Bioeth ; 38(4): 239-244, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28702734
18.
BJPsych Bull ; 41(2): 65-70, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28400962

RESUMO

It has been argued that those who suffer from medical conditions are more vulnerable to epistemic injustice (a harm done to a person in their capacity as an epistemic subject) than healthy people. This editorial claims that people with mental disorders are even more vulnerable to epistemic injustice than those with somatic illnesses. Two kinds of contributory factors are outlined, global and specific. Some suggestions are made to counteract the effects of these factors, for instance, we suggest that physicians should participate in groups where the subjective experience of patients is explored, and learn to become more aware of their own unconscious prejudices towards psychiatric patients.

19.
J Appl Philos ; 34(2): 172-190, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-28303075

RESUMO

This article analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimonial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker's account of epistemic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes and structural features render ill persons especially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare.

20.
J Med Ethics ; 43(8): 549-557, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-27920164

RESUMO

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker's concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors (and medical students) display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by healthcare professionals, and many patients vocally oppose the effectiveness, and the conceptualisation, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice (2007). We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the (often unintentional) marginalisation of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness.


Assuntos
Atitude do Pessoal de Saúde , Atenção à Saúde/ética , Síndrome de Fadiga Crônica/terapia , Conhecimento , Relações Médico-Paciente/ética , Médicos/ética , Justiça Social , Ética Médica , Humanos , Pesquisa Qualitativa , Transtornos Somatoformes , Estereotipagem , Incerteza
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