31 results
Search Results
2. What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.
- Author
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Rai, Tanvi, Hinton, Lisa, McManus, Richard J., and Pope, Catherine
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STROKE treatment ,HOME diagnostic tests ,RACISM ,HUMAN research subjects ,MINORITIES ,SOCIOLOGY ,PATIENT selection ,CULTURAL pluralism ,RACE ,RANDOMIZED controlled trials ,MEDICAL care research ,STROKE patients ,ETHNIC groups ,BLOOD pressure measurement - Abstract
The lack of ethnic diversity in health research participation is a multi‐dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour‐blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re‐examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how 'usual' research practices are unwittingly exclusionary and promote 'methodological whiteness' (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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3. Epistemic injustice as a bridge between medical sociology and disability studies.
- Author
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Mladenov, Teodor and Dimitrova, Ina
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SOCIOLOGY ,PSYCHOLOGY of children with disabilities ,FOCUS groups ,PARENTS of children with disabilities ,THEORY of knowledge ,SOCIAL justice ,PSYCHOSOCIAL factors ,DESCRIPTIVE statistics ,CONSUMER activism ,RESEARCH funding ,THEMATIC analysis ,PUBLIC welfare - Abstract
This paper explores the potential of the perspective of epistemic injustice to reconcile medical sociology's attention to the micro level of experience and interpersonal exchange, and disability studies' focus on the macro level of oppressive structures. The first part of the paper provides an overview of the concept of epistemic injustice and its key instances—testimonial, hermeneutical, and contributory injustice. We also consider previous applications of the concept in the fields of health care and disability, and we contextualise our investigation by discussing key features of postsocialism from the perspective of epistemic injustice. In the second part, we explore specific epistemic injustices experienced by people who use disability support by drawing on interviews and focus groups conducted with parents of disabled children in present‐day Bulgaria. In our conclusion, we revisit our methodological and theoretical points about the potential of epistemic injustice to facilitate mutually beneficial exchanges between medical sociology and disability studies. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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4. Can a disability studies‐medical sociology rapprochement help re‐value the work disabled people do within their rehabilitation?
- Author
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Cooper, Harriet, Poland, Fiona, Kale, Swati, and Shakespeare, Tom
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SOCIOLOGY ,WORK ,CURRICULUM ,HEALTH status indicators ,EXPERIENCE ,INTERPERSONAL relations ,SOCIAL status ,PEOPLE with disabilities ,REHABILITATION - Abstract
This paper draws attention to the health‐related work that disabled people do when engaging with rehabilitation services. Medical sociology has a rich history of looking at the 'illness work' that patients do, while disability studies scholars have explored the cultural value placed upon paid work and the effects on social status of being unable to work. Yet, a longstanding froideur between these two disciplines, which have fundamentally opposed ontologies of illness and disability, means that neither discipline has attended closely to the rehabilitation‐related work that disabled people do. The concept of 'adjusting' to illness highlights seemingly irreconcilable disciplinary differences. Yet this article argues that the notion of 'adjustment work' can elucidate the socio‐political character of the work disabled people do in their rehabilitation, which could create a more substantial and sustainable dialogue on this subject between disability studies and medical sociology. To make this case, we discuss interview data from the Rights‐based Rehabilitation project, which sought to explore disabled people's lived experiences of rehabilitation. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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5. Experiential knowledge in mental health services: Analysing the enactment of expertise in peer support.
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AFFINITY groups ,PSYCHOTHERAPY patients ,SOCIAL support ,SOCIOLOGY ,MEDICAL care ,HEALTH literacy ,EXPERIENCE ,ETHNOLOGY research ,EXPERIENTIAL learning ,PSYCHOSOCIAL factors ,MENTAL health services - Abstract
The shift towards recovery‐oriented mental health care has led to the extensive growth of peer support in contemporary service delivery. When enacting peer support, peer workers (PWs) use their lived experiences of mental illness to provide support to individuals experiencing mental health difficulties. While PWs are increasingly an integrated part of mental health services, the way in which peer support unfolds in everyday practices remains understudied. Drawing on ethnographic fieldwork from Danish mental health centres, this paper investigates how peer workers and users enact experiential knowledge and expertise to support one another. Theoretically, this paper draws on a micro‐sociological approach that comprehends expertise as an interactional accomplishment enacted within institutional arrangements. First, the analysis shows how PWs and users develop affective relations based on shared illness experiences that enable the enactment of expertise. Second, it demonstrates how PWs and users engage in these relations by exchanging sympathy and knowledge according to different situational demands. Third, it shows how experiences of relational limitations make service users contest the value of experiential knowledge and PWs' position as valid experts. Centrally, this paper contributes to a general discussion of expertise and the implications of bringing lived experiences into mental health services. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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6. Regulating diagnosis—Molecular and regulatory sub‐stratifications of lung cancer treatment.
- Author
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Hauge, Amalie Martinus
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TREATMENT of lung tumors , *HEALTH services accessibility , *MEDICAL care use , *IMMUNOTHERAPY , *LUNG tumors , *ACQUISITION of data , *SOCIOLOGY , *INDIVIDUALIZED medicine , *MOLECULAR diagnosis , *MEDICAL care costs - Abstract
The sociology of diagnosis has shown that diagnosis not only serves to label the underlying cause of disease but also to provide access to services and resources. Elaborating on this double‐affordance of diagnosis, this article examines how precision medicine reconfigures diagnosis as a label and as a process in regulatory and clinical settings. Reporting from an ethnographic case study of the introduction of immunotherapy for lung cancer, the paper unfolds the uncertainties involved in dissecting diagnosis into layers and examines the efforts and negotiations it takes to enable these layers to work both as clinical entities and regulative entities with the purpose of delineating access to treatment. I suggest that the work of subdividing diseases into molecularly defined categories for the purpose of delineating treatment‐eligible populations can be labelled 'diagnostic sub‐stratification' and argue that it is pertinent to understand the political capacity of this strategy. Diagnostic sub‐stratification involves a push of diagnosis from the clinic 'up' into the regulatory system and 'out' into the laboratories, obscuring who is accountable for the diagnostic categories employed to define patients' treatment access. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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7. The contribution of Professor Bruno Latour to the sociology of health and illness: 1947–2022.
- Author
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Will, Catherine
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MEDICINE ,AUTHORS ,SOCIOLOGY ,SERIAL publications ,DISEASES ,ETHNOLOGY research ,HEALTH - Abstract
The article presents the discussion on Bruno Latour being a prolific writer and commentator. Topics include creating the accessibility of services for patients facing alcohol or drug addiction or malarial rash or an infarction; and discussing the concept of ‘actor-network-theory' in the work on intersectoral action on local neighbourhood.
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- 2023
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8. Digital health: A sociomaterial approach.
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Marent, Benjamin and Henwood, Flis
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HEALTH care reform ,SOCIOLOGY ,DIGITAL technology ,DIGITAL health ,ARTIFICIAL intelligence ,ENHANCEMENT medicine ,MEDICAL education ,HEALTH promotion ,ALGORITHMS ,DIFFUSION of innovations ,INFORMATION technology ,TELEMEDICINE - Abstract
The notion of digital health often remains an empty signifier, employed strategically for a vast array of demands to attract investments and legitimise reforms. Rather scarce are attempts to develop digital health towards an analytic notion that provides avenues for understanding the ongoing transformations in health care. This article develops a sociomaterial approach to understanding digital health, showing how digitalisation affords practices of health and medicine to cope with and utilise the combined and interrelated challenges of increases in quantification (data‐intensive medicine), varieties of connectivity (telemedicine), and unprecedented modes of instantaneous calculation (algorithmic medicine). This enables an engagement with questions about what forms of knowledge, relationships and control are produced through different manifestations of digital health. The paper then sets out, in detail, three innovative strategies that can guide explorations and negotiations into the type of care we want to achieve through digital transformation. These strategies embed Karen Barad's concept of agential cuts suggesting that responsible cuts towards the materialisation of digital health require participatory efforts that recognise the affordances and the generativity of technology developments. Through the sociomaterial approach presented in this article, we aim to lay the foundations to reorient and sensitise innovation and care processes in order to create new possibilities and value‐centric approaches for promoting health in digital societies as opposed to promoting digital health per se. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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9. Desire over damage: Epistemological shifts and anticolonial praxis from an indigenous‐led community health project.
- Author
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Smith, Shelda‐Jane, Penados, Filiberto, and Gahman, Levi
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SOCIOLOGY ,COMMUNITY health services ,THEORY of knowledge ,WORLD health ,ECOLOGY ,HEALTH literacy ,EMOTIONS ,INDIGENOUS peoples ,MEDICAL research - Abstract
This article offers an overview of an Indigenous‐led participatory research project, The Future We Dream, co‐developed by rural land defenders in Central America and the Caribbean. To engage in recent dialectics concerning complicity and decolonising methodologies, we centre Indigenous Maya conceptions of health, wellbeing and what 'living well' means to community members. For context, The Future We Dream responds to the 2015 landmark ruling made by the Caribbean Court of Justice affirming the land rights of the Maya people of Southern Belize. Amidst tensions with the state that followed the ruling, an autonomous movement composed of grassroots organisers turned their attention towards imagining and constructing a self‐determined future. In turn, the communities initiated a research exercise inspired by desire‐based methodologies (Tuck, 2009) to articulate a collective vision of a healthful Maya future outside of colonial‐liberal worldviews, and notably, formulating Maya visions of healthful, sustainable worlds. In reporting on this one example of grassroots, anticolonial health research that departs from the hierarchal knowledge production practices of liberal academia, this paper details the collaborative process/project; the complexities/complicities of research involving Indigenous communities; and how Indigenous epistemologies are generative vis‐a‐vis unsettling conventional knowledge production practices in the contentious field of global health research. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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10. Researching the health and social inequalities experienced by European Roma populations: Complicity, oppression and resistance.
- Author
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Orton, Lois, Fuseini, Olga, Kóczé, Angéla, Rövid, Márton, and Salway, Sarah
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RACISM ,ROMANIES ,SOCIOLOGY ,SOCIOECONOMIC factors ,CONCEPTUAL structures ,PSYCHOSOCIAL factors ,HEALTH equity ,THEMATIC analysis ,REFLECTION (Philosophy) - Abstract
This paper draws on the experience of two Romani and three non‐Romani scholars in knowledge production on the health and social inequalities experienced by European Roma populations. Together, we explore how we might better account for, and work against, the complex web of dynamic oppressions embedded within processes of academic knowledge production. Our aim is to encourage careful scrutiny through which sociologists of health and illness might better recognise our own complicity with oppression and identify concrete actions towards transforming our research practices. Drawing on a well‐known domains of racism typology (Annual Review of Public Health, 40, 2019, 105), we use examples from our own work to illustrate three interconnected domains of oppression in which we have found ourselves entangled (structural, cultural and interpersonal). A new conceptual framework is proposed as an aid to understanding the spectrum of different "types" of complicity (voluntary–involuntary, conscious–unconscious) that one might reproduce across all three domains. We conclude by exploring how sociologists of health and illness might promote a more actively anti‐racist research agenda, identifying and challenging subtle, hidden and embedded negative ideologies and practices as well as more obviously oppressive ones. We hope these reflections will help revitalise important conversations. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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11. Taking after a parent: Phenotypic resemblance and the professional familialisation of genomics.
- Author
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Hedgecoe, Adam, Job, Kathleen, and Clarke, Angus
- Subjects
- *
CLINICAL pathology , *SEQUENCE analysis , *SOCIOLOGY , *GENETIC counselors , *UNCERTAINTY , *DOCUMENTATION , *GENOMICS , *DESCRIPTIVE statistics , *PHOTOGRAPHY , *GENETIC markers , *RESEARCH funding , *DECISION making in clinical medicine , *ETHNOLOGY , *GENETIC counseling , *PARENTS , *PHENOTYPES - Abstract
This article draws on 2 years' worth of ethnographic observation of team meetings to explore decision‐making in an NHS clinical genomics service. The focus of discussions was on ambiguous genomic results known as VUS or Variants of Uncertain Significance, which may be pathogenic but which also may turn out to be benign. In examining decision‐making around such results, we note how, in contrast to much policy and promotional material in this area, clinicians in these meetings (clinical geneticists and genetic counsellors) place great emphasis on parental phenotypes and whether the parents of a patient share the symptoms and signs of the suspected condition. This information is then combined with the result of genomic tests to decide whether the variant a patient has is responsible for their condition. This article explores the way in which clinicians attempt to flexibly enrol parents into genomic explanations through informal diagnosis of their possible phenotypes and the way in which actually meeting parents allows some clinicians to trump explanations based on documentary or photographic data. The paper sheds light on the way that earlier scholarly understandings of such decisions (around, say dysmorphology) remain relevant and explores claims that laboratory tests overrule clinical decision‐making. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
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12. Complicity: Methodologies of power, politics and the ethics of knowledge production.
- Author
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Hollin, Gregory and Williams, Ros
- Subjects
ETHICS ,SOCIOLOGY ,PRACTICAL politics ,RESEARCH methodology ,SCHOLARSHIPS ,CONCEPTUAL structures ,INTELLECT ,MEDICAL education - Abstract
In this collection we develop the concept of "complicity" as a means to understand how medical sociologists might be allied in unexpected or uncomfortable ways with dominant structures of power. After giving examples of complicity from our own research, we introduce existing scholarship on complicity, describing it as a concept that comes coupled with a sense of responsibility and that is related to, yet distinct from, a range of other terms including reflexivity, collusion, guilt, and shame. We also discuss how complicity has been described to occur at the level of the institution, within theoretical frameworks, and during mundane moments that we face on a day‐to‐day basis. Building on this review, we hypothesise that medical sociology – where access to fieldsites is often hard won, where "researching up" in medical and scientific institutions is common, and where our own work frequently concerns matters central to medical institutions themselves – is a discipline wherein mundane complicity is likely. Following this gathering exercise, we introduce the interventions that comprise this collection: interventions from a diversity of sociologists of health and illness who, perhaps for the first time in written form, account for how complicities of various kinds came to shape their work and how, with varying levels of success, they have sought redress. We close by offering some insight into the process of developing this collection, celebrating its successes while also acknowledging that many gaps and complicities remain. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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13. Editorial JANUARY 2022.
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Lowton, Karen and Henwood, Flis
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PUBLISHING ,SOCIOLOGY ,SERIAL publications ,ECOLOGY - Abstract
An editorial is presented in which authors discuss first issue of 2022 of the periodical. It mentions call for abstracts for first special issue, "New Dialogues Between Disability Studies and Medical Sociology," which expect to publish in 2023; and also mentions platform uses machine learning algorithms to automatically read manuscript files and extract key information for authors to confirm.
- Published
- 2022
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14. Mildred Blaxter New Writer's Prize 2021.
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PUBLISHING ,SOCIOLOGY ,AUTHORS ,AWARDS ,AUTHORSHIP - Abstract
The article announces Fay Dennis and Marie Le Clainche Piel as the winners of the 2021 Mildred Blaxter New Writer's Prize, with their articles covering drug fatalities and treatment fatalism and social conditions of receiving an anonymous face transplant.
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- 2021
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15. Working it out: Will the improved management of leaky bodies in the workplace create a dialogue between medical sociology and disability studies?
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Remnant, Jennifer, Sang, Katherine, Myhill, Katriona, Calvard, Thomas, Chowdhry, Sushila, and Richards, James
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WORK environment ,STUDENT recruitment ,EMPLOYMENT of people with disabilities ,FEMALE reproductive organ diseases ,SOCIOLOGY ,MENSTRUATION disorders ,UNEMPLOYMENT ,STAKEHOLDER analysis ,INTERVIEWING ,EMPLOYEE recruitment ,LABOR supply ,COMPARATIVE studies ,CONCEPTUAL structures ,QUESTIONNAIRES ,DESCRIPTIVE statistics ,RESEARCH funding ,ATTITUDES toward disabilities - Abstract
This article focuses on the workplace as a significant site of convergence between the disciplines of medical sociology and disability studies. As disability remains on the margins of sociological exploration and theorising relating to health and work, disabled workers remain on the margins of the workforce, subject to disproportionate rates of unemployment, under employment and workplace mistreatment. The article focuses on the experiences of people with 'leaky bodies', focussing specifically on employees who experience troubling menstruation and/or have gynaecological health conditions. It brings together data from three studies conducted between 2017 and 2020; interviews with disabled academics (n = 75), university staff with gynaecological health conditions (n = 23), and key stakeholders in universities (n = 36) (including university executives, line managers and human resources staff). These studies had separate, but linked foci, on the inaccessibility of workplaces, managing gynaecological health conditions at work and supporting disabled people at work respectively. Drawing on the Social Relational Model of disability and theories of embodiment, we explore the experiences and management of workers with leaky bodies in UK University workplaces. Data illustrates how workplace practices undermine embodied experiences of workers with 'leaky' bodies by maintaining workplaces which ignore their material reality. We highlight that addressing embodied needs alongside acknowledging disabled people as an oppressed political category represents a theoretical meeting point for disability studies and medical sociology. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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16. Disability policy and practice in Malawian employment and education.
- Author
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Wånggren, Lena, Remnant, Jen, Huque, Sarah, Kachali, Limbani, Sang, Katherine J. C., and Ngwira, Jenipher
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SPECIAL education ,EMPLOYMENT of people with disabilities ,LEGISLATION ,SOCIOLOGY ,DISCRIMINATION (Sociology) ,RESEARCH methodology ,MATHEMATICAL models ,INTERVIEWING ,PUBLIC administration ,SOCIAL justice ,DISABILITY laws ,GOVERNMENT policy ,SOUND recordings ,THEORY ,RESEARCH funding ,PEOPLE with disabilities ,SOCIAL integration ,EVALUATION - Abstract
Malawi is a landlocked country in Southern Africa with a population of 17.5 million. It has taken great strides in addressing disability inequality in recent years. Despite this, Malawian trade unions, educators and disability activists report wide‐reaching disability discrimination at an infrastructural and individual level. Situated at the intersections between disability studies and medical sociology, alongside work of postcolonial and Global South scholars, this article highlights how neo‐colonial and Anglocentric dominant framings of disability do not necessarily fit the Malawian workforce, as they ignore cultural and structural differences in the causes and maintenance of ill health and disability. Building on interviews with workers with disabilities, trade unionists, educators, government representatives and disability activists in Malawi's two biggest cities, the article emphasises the need to address specific local contexts; while policy asserts a model of social oppression, in practice, disability inclusion requires recognition of the social determinants of disability and inequality, and the economic, political and cultural context within which disability resides. Sharing co‐designed approaches to engaging with disability definitions, stigma, language, infrastructure and resources, this article highlights the necessity of grounding disability and medical sociological theory in localised framings and lived experiences. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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17. Expressivist objections to prenatal screening and testing: Perceptions of people living with disability.
- Author
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Boardman, Felicity and Thomas, Gareth
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HUMAN reproduction ,PRENATAL diagnosis ,SOCIOLOGY ,ATTITUDE (Psychology) ,DOWN syndrome ,GROUP identity ,GENETIC disorders ,PATIENTS' attitudes ,PEOPLE with disabilities ,GENETIC techniques - Abstract
The 'expressivist objection' (EO) refers to the notion that using reproductive (genetic) technologies to prevent the birth of future would‐be disabled people contain, and express, a negative valuation of life with disability. Whilst the EO has received increased attention in recent years in line with rapid technological and genomic developments, there remains scant research on how EO concerns are experienced and expressed by disabled people and their families, especially within and between impairment groups. Bringing together two studies—one with adults and family members living with genetic conditions (n = 62) and one with parents of children with Down's syndrome (n = 22)—we argue that disabled people and their families variously embrace, reject or rework the EO across contexts, and yet also frequently situate it within broad support for reproductive technologies. We present three key factors that mediate responses to the EO: (1) the nature of impairment and its integration within identity; (2) social and cultural contexts relating to disability and (3) the (individual and collective) imagined futures of disabled people. In so doing, we blend the conceptual architecture of medical sociology and disability studies, arguing that this allows us to accurately illuminate the nuanced responses of disabled people and their families. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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18. Being just their hands? Personal assistance for disabled people as bodywork.
- Author
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García‐Santesmases, Andrea, López Gómez, Daniel, and Pié Balaguer, Asun
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HOUSEKEEPING ,SOCIOLOGY ,HOME care services ,RESEARCH methodology ,INTERVIEWING ,QUALITATIVE research ,CONCEPTUAL structures ,PEOPLE with disabilities ,HUMAN beings - Abstract
Drawing on the notion of bodywork, we analyse the bodily aspects of personal assistance to expand the dialogue between medical sociology and disability studies. We aim to, firstly, overcome the lack of attention to the bodywork of personal assistant (PAs) in disability studies; secondly, explore the micropolitics of personal assistance and the role of independent living mandates in configuring this bodywork of PAs; and, thirdly, propose a more relational and material approach to the impairment/disability debate. This exploration is based on qualitative semi‐structured interviews with 23 PAs conducted in Spain between 2018 and 2020. Our research reveals that PAs' bodywork implies performing their body as body‐absence, such as when they enact body‐tool and body‐prosthesis figurations, but also as body‐presence, for instance, as acting bodies and affected/affecting bodies in specific situations. Through their analysis, we foreground how PAs' bodywork conveys normative ways of enacting the body and how these body figurations are not only challenged and negotiated but define the actual practice of personal assistance. To conclude, we stress on the theoretical contributions of our study towards both disability studies and medical sociology. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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19. Like clockwork? (Re)imagining rhythms and routines when living with irritable bowel syndrome (IBS).
- Author
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White, Lauren
- Subjects
IRRITABLE colon diagnosis ,BODY composition ,SOCIOLOGY ,PUBLIC health ,IMAGINATION ,DIARY (Literary form) ,CYCLES ,PEOPLE with disabilities - Abstract
Temporal trajectories of health, illness and disability—from biographical change to micro‐embodied practices within social time—are important strands within medical sociology and disability studies. Drawing upon a UK‐based qualitative study using diaries and follow‐up interviews to explore everyday life with irritable bowel syndrome (IBS), this article explores routines when living with the condition. It focuses specifically on accounts of routines being anticipated, slowed down and stretched out to accommodate and/or care for bodies, with personal and social rhythms weaved in, out and with each other. Such reflections are told through participants' accounts of knowing routines and rhythms, stretching out and pacing morning routines to care for the body and how everyday practices are reimagined as the body and the social meet. Drawing upon the concept of 'Crip Time' where the social bends to meet with the body, this article seeks to illuminate important intersections between medical sociology and disability studies through accounts of living with IBS. This article demonstrates the entanglement of structural, disabling temporal rhythms and embodied temporalities, through an acknowledgement of routines reimagined. It offers a contribution to both medical sociology and disability studies in reimagining social lives with embodied temporalities in mind. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
20. The (commercialised) experience of operating: Embodied preferences, ambiguous variations and explaining widespread patient harm.
- Author
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Ducey, Ariel, Donoso, Claudia, Ross, Sue, and Robert, Magali
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SOCIOLOGY ,OPERATIVE surgery ,ATTITUDES of medical personnel ,SURGEONS ,INTERVIEWING ,MEDICAL errors ,PSYCHOSOCIAL factors ,SURGICAL meshes ,CLINICAL competence ,RESEARCH funding ,PATIENT safety ,PELVIC organ prolapse ,WOMEN'S health - Abstract
This article provides a detailed account of how surgeons perceived and used a device‐procedure that caused widespread patient harm: transvaginal mesh for the treatment of pelvic floor disorders in women. Drawing from interviews with 27 surgeons in Canada, the UK, the United States and France and observations of major international medical conferences in North America and Europe between 2015 and 2018, we describe the commercially driven array of operative variations in the use of transvaginal mesh and show that surgeons' understanding of their hands‐on, sensory experience with these variations is central to explaining patient harm. Surgeons often developed preferences for how to manage actual and anticipated dangers of transvaginal mesh procedures through embodied operative adjustments, but collectively the meaning of these preferences was fragmented, contested and deferred. We critically reflect on surgeons' understandings of their operative experience, including the view that such experience is not evidence. The harm in this case poses a challenge to some ways of thinking about uncertainty and errors in medical sociology, and calls for attention to a specific feature of surgical work: the extent and persistence of operative practices that elude classification as right or wrong but are still most certainly better and worse. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
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21. The challenge of institutionalised complicity: Researching the pharmaceutical industry in the era of impact and engagement.
- Author
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Martin, Paul A.
- Subjects
ETHICS ,SOCIOLOGY ,STAKEHOLDER analysis ,INDUSTRIES ,ORPHAN drugs ,INTERPROFESSIONAL relations ,INSTITUTIONAL care ,RARE diseases - Abstract
The pharmaceutical industry plays a central role in the production of the drugs we use to treat most illnesses. It is immensely powerful and has received sustained attention from sociologists of health and illness, who have provided a critique of its influence and sometimes unethical behaviour. However, in recent years, funders are increasingly expecting researchers to engage and collaborate with stakeholders, including industry. This raises important questions about the institutionalisation of complicity and the different forms this might take. This article asks: How can sociologists engage with the pharmaceutical industry in a positive and constructive manner, whilst remaining independent, principled and critical? It will draw on my experience of establishing a major project on high‐priced drugs for rare diseases and the literature on collaboration, stakeholder engagement and responsible research to propose a methodological framework to address this challenge. This is based on six PRIMES: (normative) Principles, Reflection and Independence, (field) Mapping, (careful) Engagement and Strategic intervention that have broad applications to many other areas of contemporary social science research. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
22. Complicity in sociology and community‐based participatory research with Marshallese.
- Author
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McElfish, Pearl A., Purvis, Rachel S., Riklon, Sheldon, and Willis, Don E.
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ETHICS ,SOCIOLOGY ,PATIENT advocacy ,PRACTICAL politics ,MEDICAL care research ,MEMBERSHIP ,INTERPROFESSIONAL relations ,HEALTH equity - Abstract
Complicity with colonialism can be reflected in a particular approach to research, whose interests it serves, and who has power or ownership over the research process. It can also be reflected in neglect, inaction or methodological erasure of groups historically subjected to domination by colonial empires. Social scientists have often failed to account for colonialism's role or the complicit role they have played. We provide a brief historical overview of colonialism in the Marshall Islands and the role social scientists—and their methodological and epistemological approaches—played in the US empire's expansion into the region. We discuss the tenets of Community Based Participatory Research (CBPR), setting the research agenda, co‐direction of the research process, research team membership, collaboration challenges, and the action and outputs which have come from our team's health disparities research among the largest Marshallese population in the continental US. We argue CBPR is a promising but imperfect approach to guarding against complicity within medical sociology and situate our methodological approach within ongoing debates regarding objectivity and advocacy within sociology. We reflect on successes and shortcomings of our CBPR efforts to address health disparities among Marshallese, as well as how those successes and shortcomings overlap with questions of complicity. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
23. The impossibility of engaged research: Complicity and accountability between researchers, 'publics' and institutions.
- Author
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Heney, Veronica and Poleykett, Branwyn
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HUMAN research subjects ,PATIENT participation ,SOCIOLOGY ,PATIENT selection ,PUBLIC health ,RESPONSIBILITY ,UNIVERSITIES & colleges ,INTERPROFESSIONAL relations ,MEDICAL research ,PUBLIC opinion - Abstract
Over the past decade, U.K. universities have increasingly sought to involve publics in research as active participants in the construction of academic knowledge. Sociologists of health have largely welcomed this enthusiasm for engaged and participatory ways of working, including methodologies long in use in the field such as patient‐led research and co‐creation. Despite the strong interest in engaged research, however, we argue that funding patterns, bureaucratic structures and an overreliance on people employed on casual contracts make it extremely difficult, often impossible, to do engaged research in British universities. Drawing on our own experiences, we show how our attempts to practise and deepen accountability to variously situated publics were constrained by the way our institution imagined and materially supported engagement. We argue that it falls to individual researchers to mitigate or work around structural barriers to engagement, and that this process creates dilemmas of complicity. If engaged research is to fulfil its remit for inclusion and its radical potential, researchers need to think carefully about how the U.K. engagement agenda entwines with processes of casualisation, acceleration and projectification, and how institutional recuperations of engagement can undermine its political and epistemic objectives. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
24. The sociology of rationing: Towards increased interdisciplinary dialogue ‐ A critical interpretive literature review.
- Author
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Martinus Hauge, Amalie, Otto, Eva Iris, and Wadmann, Sarah
- Subjects
HEALTH policy ,SOCIOLOGY ,MEDICAL information storage & retrieval systems ,DEBATE ,SYSTEMATIC reviews ,UNCERTAINTY ,SOCIAL justice ,HEALTH care teams ,DECISION making ,LITERATURE reviews ,THEMATIC analysis ,MEDLINE ,HEALTH care rationing ,HEALTH planning ,BIOETHICS - Abstract
Since the 1990s, the sociology of rationing has developed in explicit opposition to health economic and bioethical approaches to healthcare rationing. This implies a limited engagement with other disciplines and a limited impact on political debates. To bring the sociology of rationing into an interdisciplinary dialogue, it is important to understand the disciplines' analytical differences and similarities. Based on a critical interpretive literature synthesis, this article examines four disciplinary perspectives on healthcare rationing and priority setting: (1) Health economics, which seeks to develop decision models to provide for more rational resource allocation; (2) Bioethics, which seeks to develop normative principles and procedures to facilitate a just allocation of resources; (3) Health policy studies, which focus on issues of legitimacy and implementation of decision models; and lastly (4) Sociology, which analyses the uncertainty of rationing and the resulting value conflicts and negotiations. The article provides an analytical overview and suggestions on how to advance the impact of sociological arguments in future rationing debates: Firstly, we discuss how to develop the concepts and assumptions of the sociology of rationing. Secondly, we identify specific themes relevant for sociological inquiry, including the recurring problem of how to translate administrative priority setting decisions into clinical practice. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
25. Edgework, institutions and enhanced interrogation.
- Subjects
RISK-taking behavior ,TORTURE ,SOCIOLOGY ,WAR ,SOCIAL workers ,VIOLENCE ,PSYCHOLOGISTS ,SOCIAL case work - Abstract
The Enhanced Interrogation programme was a medicalised interrogation programme that was designed by the United States in the wake of 9/11. It is now widely recognized that the Enhanced Interrogation programme engaged in some activities that were, at the least, tantamount to torture. The programme was designed by Psychologists and overseen by other professionals, including medical professionals. This article argues that the Enhanced Interrogation programme displayed many of the features of what Sociologists refer to as Edgework. It demonstrated voluntary risk‐taking by health and other professionals; this risk‐taking pressed up against catastrophic outcomes across multiple dimensions; risks were taken for the purposes of escaping a death‐saturated macrosocial context; and the health professionals in the programme were highly skilled. The article argues that a new form of Edgework can be detected by studying the programme, which the article refers to as 'Institutional Edgework'. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
26. Coalitions of touch: Balancing restraint and haptic soothing in the veterinary clinic.
- Author
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Llewellyn, Nick, Hindmarsh, Jon, and Burrow, Robin
- Subjects
VETERINARY medicine ,TOUCH ,SOCIOLOGY ,PETS ,RESTRAINT of patients ,COMMUNICATION ,COALITIONS ,EMOTIONS - Abstract
This article responds to recent calls to further incorporate the study of animal health care into the sociology of health and illness. It focuses on a theme with a long tradition in medical sociology, namely clinical communication, but explores matters distinctive to veterinary practice. Drawing on video recordings of 60 consultations across three small animal veterinary clinics in the United Kingdom, we explore how clients and veterinarians (or "vets") fashion fleeting "coalitions of touch," that aptly position the animal to enable the performance of medical work, often in the face of physical resistance. Building on recent developments in the study of haptic sociality, we analyse how care and emotional concern for animal patients is communicated through various forms of embodied action; thus, how the problematics of forced care and restraint are mitigated through distinctive ways of touching and holding animal patients. Moreover, while prior studies of small animal veterinary work have highlighted the significance of talk within the clinician–animal–client triad, we reveal the fundamentally embodied and collaborative work of managing and controlling patients during sometimes intense and fast‐moving episodes of veterinary care. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
27. Replacement feeding and the HIV Diaspora: A case of ontological multiplicity and fluid technologies.
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HIV infections ,IMMIGRANTS ,SOCIOLOGY ,ETHNOLOGY research ,NATIONAL health services ,BREASTFEEDING ,REFUGEES ,ONTOLOGIES (Information retrieval) ,AIDS - Abstract
Breastmilk is a transmission source of HIV. Therefore, mothers living with HIV are able to avoid exposing their infants to HIV‐contaminated breastmilk if they replacement feed them. This article draws on an ethnographic study of an acute National Health Service HIV specialist antenatal clinic in London and explores the ontological multiple HIVs that the practice of replacement feeding takes part in enacting within the fluid space of the HIV diaspora. The term articulates the circumstances of racialised people affected by HIV who are originally from countries where access to life sustaining medication, care and resources—that enable a decoupling of the illness from death—are not readily accessible, and who have (temporarily) relocated themselves to geographical places where these resources are on offer. Arguing that Black African and Caribbean migrant women's ability to benefit from the technologies and care that have turned HIV into a chronic illness in England is delimited by race and their diasporic positionality. In so doing, the article contributes to Sociology by showing how race is part of practice–ethnographic research and medical care even when it is seemingly absent. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
28. A sociology of precision‐in‐practice: The affective and temporal complexities of everyday clinical care.
- Author
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Kenny, Katherine, Broom, Alex, Page, Alexander, Prainsack, Barbara, Wakefield, Claire E., Itchins, Malinda, Lwin, Zarnie, and Khasraw, Mustafa
- Subjects
HOSPITALS ,SOCIOLOGY ,FOCUS groups ,INDIVIDUALIZED medicine ,MEDICAL care ,PHYSICIANS' attitudes ,ONCOLOGISTS ,CANCER patient medical care ,IMMUNOTHERAPY - Abstract
The idea of 'precision medicine', which has gained increasing traction since the early 2000s, is now ubiquitous in health and medicine. Though varied in its implementation across fields, precision medicine has raised hopes of revolutionary treatments and has spurred the proliferation of novel therapeutics, the alteration of professional trajectories and various reconfigurations of health/care. Nowhere is the promise of precision medicine more apparent, nor further institutionalised, than in the field of oncology. While the transformative potential of precision medicine is widely taken for granted, there remains scant attention to how it is being experienced at the coalface of care. Here, drawing on the perspectives of 54 cancer care professionals gleaned through eight focus group discussions in two hospitals in Australia, we explore clinicians' experiences of the day‐to‐day dynamics of precision‐in‐practice. We illustrate some of the affective and temporal complexities, analysed here under the rubrics of enchantment, acceleration and distraction that are emerging alongside the uptake of precision medicine in the field of oncology. We argue that these complexities, and their dis/continuities with earlier iterations of cancer care, demonstrate the need for sociological analyses of precision medicine as it is being implemented in practice and its varied effects on 'routine' care. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
29. The informalization of doctor–patient relations in a Finnish setting: New social figurations and emergent possibilities.
- Author
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Wilkinson, Iain and Vaananen, Ari
- Subjects
CULTURE ,ETHICS ,HEALTH facilities ,SOCIOLOGY ,PHYSICIAN-patient relations ,NEGOTIATION ,INTERVIEWING ,MEDICAL care ,COMMUNITY support ,RESPONSIBILITY ,SOCIAL skills ,OCCUPATIONAL adaptation ,EMOTIONS ,TRUST - Abstract
This article features data drawn from interviews with doctors working in the Finnish occupational health‐care system. These are used to explore the value of an Eliasian approach towards interpreting and assessing the moral meanings and social dynamics of relationships between health practitioners and their patients. We attend to spiralling 'formalizing' and 'informalizing' processes and how these are operating to reconfigure doctor–patient relationships. We document some of the ways in which Finnish doctors are adapting to these processes. While data drawn from a British context suggest both doctor and patients are inclined to adopt positions of mutual distrust and hostility, by contrast we note that in this Finnish setting more concerted attempts are being made to renegotiate social roles, cultural meanings and individual responsibilities. We propose that this can be taken as an instance where informalization is accompanied by revitalized currents of formalization and new syntheses of moral codes and conduct. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
30. Infrastructures of racial violence, health and debility.
- Subjects
PREVENTION of racism ,VIOLENCE prevention ,SOCIOLOGY ,HEALTH services accessibility ,PRACTICAL politics ,BLACK people ,COVID-19 vaccines ,DISEASES ,HEALTH ,WHITE people ,COVID-19 pandemic - Abstract
In the article, the author discusses the infrastructures of racial violence, health and debility in European society that were instigated by colonialism and its interwoven violations, as well as the need for connected sociologies of health and illness for the common good. Other topics include the normative order that maintains the marginationalisation of minority and people of color scholars, and the ethnographic studies of debility by anthropologist Julie Livingston.
- Published
- 2021
- Full Text
- View/download PDF
31. Physician dominance in the 21st century: Examining the rise of non‐physician autonomy through prevailing theoretical lenses.
- Author
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Feyereisen, Scott, McConnell, William, Thomas, Clayton, and Puro, Neeraj
- Subjects
MIDWIVES ,PROFESSIONS ,SOCIOLOGY ,NURSING laws ,MATHEMATICAL models ,NURSING specialties ,MEDICAL care ,QUANTITATIVE research ,REGRESSION analysis ,AUTONOMY (Psychology) ,THEORY ,PROFESSIONAL identity ,PHYSICIANS ,NURSE practitioners ,MEDICAL coding ,NURSE prescribing - Abstract
Theories of physician dominance are a foundational contribution of medical sociology to the study of health care, but must be revisited in the light of ongoing changes in medicine. As non‐physician specialists like nurse practitioners grow in number and acquire more autonomy, increasing medical profession differentiation presents a challenge for traditional physician dominance theories. After evaluating potential theoretical explanations for subordinate occupations' autonomy gains, we conduct a state‐level quantitative analysis of variation in nursing policies across U.S. states. We construct our dependent variable, nursing autonomy, using seven state‐level advanced practice nursing policies adopted from 2001–2017. Using an ordered scale, we code nurse practitioner, nurse anaesthetist, nurse midwife and clinical‐nurse‐specialist practice and prescription polices according to each policy's autonomy level. We then use time‐series regression to examine theory‐driven propositions regarding nursing autonomy change. Nursing autonomy has increased over time, signalling a general erosion of physician dominance. However, we find differential patterns of policy adoption, indicating that erosion is not uniform. Physicians have maintained dominance in relatively prestigious specialties (e.g. anaesthesiology) while dominance declined in others (e.g. obstetrician). Factors external to the profession, such as consumer power, continue to influence within‐profession dynamics. Examining ongoing professional differentiation in medicine illustrates how physician dominance depends on shifting social and professional contexts. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
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