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This article identifies the health of the worker as a third source of labour power indeterminacy to be added to the indeterminacy of labour effort and the indeterminacy of labour mobility. The paper clearly differentiates worker health from effort as a distinct source of labour power indeterminacy—something that cannot be guaranteed and that varies for an individual over time. It considers the relationship between worker health as a new source of indeterminacy and the two extant sources of labour power indeterminacy, focussing on the way in which health moderates the relationship between effort and output. The paper also considers the way in which worker health investment moderates the indeterminacy of labour effort and labour mobility, independently of its impact on the health of the worker. The paper documents the potential value of worker health investment to the organisation and also considers the boundary conditions for investment in worker health. [ABSTRACT FROM AUTHOR]

This introduction to a special section brings together three papers first presented at a panel, 'Medical Professions in South Asia: Historical and Contemporary Analyses', at the 26th European Conference on South Asian Studies, held in Vienna, Austria and online, in July 2021. All three papers deal with aspects of the professionalisation of biomedical doctors in India since its independence in 1947. The authors bring together historical and sociological approaches to illuminate the growth of specialisms, patterns of practitioner–patient interactions and efforts to maintain occupational closure and maintain status in the face of growing challenges. The introduction concludes with a discussion of the relevance of these papers for the sociology of health and illness in India and beyond. [ABSTRACT FROM AUTHOR]

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co‐authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken‐up by all team members, in so doing a self‐governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co‐production. Identities and positions were porous; the simplistic division of ‘academic’ and ‘PPIE’ did not stand up to scrutiny, with an increasing blurring of boundaries as people’s experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team. [ABSTRACT FROM AUTHOR]

Conceptualisations of grief have transformed significantly in recent decades, from an experience accepted and expressed in community spaces to a diagnosable clinical phenomenon. Narratives of this transformation tend to focus on grief’s relationship to major depression, or on recent nosological changes. This paper examines the possibility of a new narrative for medicalisation by grounding in the networks of language and power created around ‘grief’ through a critical discourse analysis of psy‐discipline articles (n = 70) published between 1975 and 1995. Focusing on shifts in definitions of, methods used to approach, and rationales motivating study of the experience, it posits that the psy‐disciplines exerted exclusive expertise over grief decades before its creation as a diagnosis. By reconceptualising grief in the terms of psy‐specific symptoms and functional performance and by approaching it with the decontextualising and interventionist methods of an increasingly scientific psy‐discipline, the psy‐community medicalised grief between 1975 and 1995. Identifying neoliberal and other cultural influences shaping this process of medical construction and reconsidering narratives of grief’s history mindful of the powers exerted in medicalisation, this paper establishes that these moments played a critical role in the development of the present’s grief. [ABSTRACT FROM AUTHOR]

As opioid fatalities rise in North America, the need to improve the supports available to those who are dependent on opioids and pregnant has become more urgent. This paper discusses the social organisation of drug treatment supports for those who are pregnant, using Canadian clinical practice guidelines (CPGs) for methadone maintenance treatment (MMT) as a case study. Pregnant patients are a priority population for MMT, both in Canada and internationally; the regulatory bodies that oversee MMT in Canada are the provincial Colleges of Physician and Surgeons and Health Canada. The paper analyses MMT CPGs published by these agencies, comparing their general recommendations to those specific to pregnant patients. We demonstrate that the guidelines address few treatment considerations for pregnant patients, other than improved birth outcomes and child welfare, despite acknowledging their more complex needs. Drawing on social science studies of gender and drugs, we argue that MMT CPGs therefore perpetuate the intensified surveillance and foetal prioritisation that have long generated barriers to care for opiate‐dependent pregnant patients. We also discuss how and why the CPGs ultimately only reinforced these current limitations in the drug treatment sector. [ABSTRACT FROM AUTHOR]

This paper intervenes in the dichotomous debate on the ‘privatisation’ of the UK’s National Health Service (NHS). Whilst research suggests that involving private‐sector actors and principles deviates from the founding aims of the NHS to deliver equitable healthcare for all, the opposing argument to ‘keep our NHS public’ also limits understanding and alternative possibilities. Through focusing on maintaining overarching structures, these campaigns fail to address everyday medical practices that have long been critiqued by those allied with the sociology of health and illness. This paper draws on feminist critiques of public/private to expand the structural economic lens of mainstream political debates and explore how multiple forms of economic, social, cultural, and symbolic capital, operate in everyday healthcare practices. Through an historically‐informed ethnographic exploration of routine hip replacements, I find that capital itself emerges through relations between people and things, and that public/private boundaries play an integral role in forming these relations to instil value on particular patients and forms of labour, demarcating what kind of healthcare is given to whom. I therefore suggest future action should focus on assembling healthcare relations beyond the dualism of public/private categories, to create multiple safe places and relations for all. [ABSTRACT FROM AUTHOR]

Paid carers play an important role in helping older adults with care needs to remain living in their own homes. This paper examines changes in the home care field, specifically the emergence of self‐employed care entrepreneurs ('microentrepreneurs'). To do this, it employs Bourdieu's concepts of field, capital and habitus. Drawing on 105 semi‐structured interviews with stakeholders working in home care, the paper describes how the interaction of changes to field structures, and altered practices of care have challenged the taken‐for‐granted acceptance of traditional, transactional forms of care provision. This process has been highly dependent on local state actors, their ability to mobilise relevant forms of capital and the factors which shaped their habitus. It should be seen within the context of changes to local field structures and the hierarchical classification processes which underpin them. These changes threaten the distribution of capital in the home care field in ways that are beneficial to microentrepreneurs. Bourdieu might categorise these developments as 'partial revolutions', which do not challenge the fundamental axioms of the field. However, for care entrepreneurs, formerly employed as low‐paid home‐care workers, a revolution that is only partial may be better than none at all. [ABSTRACT FROM AUTHOR]

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]

Based on fieldwork carried out at the Early Drug Development Service of a world‐leading cancer institution, our study sheds lights on decision‐making processes at the stage where decisions are made about which clinical trial to pursue and thus which experimental drugs will feed the growing pipeline of molecularly guided therapies and therapeutic strategies available to treating physicians. The paper shows how such collective decision‐making practices by a translational research unit employ formal tools and ad hoc valuation strategies that interweave technical‐scientific matters of concern with patient‐oriented clinical ones, as part of the institutional assetization of biomedical knowledge production. In the process, decision‐making practices in part define the conditions of possibility for the provision of care in what is increasingly becoming a 'clinic of variants.' They do so by reconfiguring on an evolving basis the socio‐material ecosystem through which precision oncology is enacted as a rapidly evolving assemblage of patients, physicians, research and support staff, protocols, molecular markers, drugs and administrative components. [ABSTRACT FROM AUTHOR]

Obstetric fistula is a life transforming event resulting in embodied biographical disruption. Survivors suffer myriad long‐term physical and emotional consequences. This paper is an account of a narrative inquiry, conducted with 15 fistula survivors in North‐central, Nigeria, who described how their identities had been transformed by their condition. A narrative therapeutic approach, using Frank's 'chaos, restitution and quest' typology, was used to map their recovery narratives. 'Chaos', described by Frank as the opposite of restitution, dominated, with women losing hope of recovery. Women's shift towards 'restitution' began with treatment, but inadequate health‐care access often delayed this process. In their quest narratives, women's life and identify changes enabled them to derive meaning from their experience of obstetric fistula within the context of their own lives. The findings highlight socio‐structural factors raising the risk of obstetric fistula, which in turn causes biographical disruption and hampers sufferers' treatment and recovery. Rehabilitation should include income‐generating skills to bring succour to survivors, particularly those whose incontinence persists after repairs. [ABSTRACT FROM AUTHOR]

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]

This paper examines the citation counts of papers published in the first 25 years of the Sociology of Health and Illness. According to this measure only a small number of papers have made a major impact on the discipline of sociology of health and illness and an analysis of these select papers identifies some common themes. In particular, ‘successful’ papers have provided important theoretical constructs for the field while exploration of aspects of identity has been a recurrent focus. [ABSTRACT FROM AUTHOR]

Through the creation of safe spaces in which to explore and challenge dominant negative views of disabled children and young people, this co‐written paper presents unique insight into the meaning and impact upon disabled young people's lives of medical lenses and deficit models of disability. Bodies of work and dominant debates in medical sociology, disability studies and childhood studies have so far largely overlooked the experiences and positioning of disabled children and young people and have rarely involved them in the development or discussion of theory. Drawing on empirical data, and through a series of creative, reflective workshops with a UK‐based disabled young researchers' collective (RIP:STARS), this paper discusses areas of theoretical importance identified by the disabled young researcher collective—the validation of their lives, negotiation of their identity and acceptance in society. The implications, and possibilities, of platforming disabled children and young people's voices in theoretical debates are deliberated and are achieved through the yielding of privileged academic voice and the development of a symbiotic, genuine partnership which resonates with disabled young people and recognises them as experts in their own lives. [ABSTRACT FROM AUTHOR]

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]

Despite an increased drive over the past two decades in Western societies to promote children's physically active play to improve their health, there are concerns that childhood has become less physically active. There are also fears that a previously naturally occurring aspect of childhood has become less authentically playful. Both trends highlight changes over time in the amount and type of play practiced by children and are often cited as consequences of generational shifts. Yet, research which analytically employs the concept of generation to connect changes to childhood with relevant social transformations is lacking. Inspired by Mannheim's conceptualisation of generations, this paper draws on life history interviews with 28 United Kingdom residents born between 1950 and 1994 to propose a fracturing of naturally occurring physical activity from childhood play. As shifts in childhood and parenting have become inextricably linked, this argument illustrates the impact of an intensification to parenting upon greater parental surveillance of increasingly organised forms of childhood physical activity at the expense of spontaneous play. Future physical activity policy should be sensitive to the social climate in which recommendations for children are made, as this places expectations upon parents due to how childhood is currently understood within neoliberal contexts. [ABSTRACT FROM AUTHOR]

The COVID‐19 crisis in the UK precipitated a sharp rise in the use of remote technologies to provide therapy during the lockdown. With mental health care services migrating to devices and video‐conferencing platforms, nearly all forms of therapy had become 'teletherapy'. Drawing on interviews with UK‐based practitioners, this paper explores how existing ideas of intimacy and presence are challenged when care is practiced at a distance. Against the background of concerns that remote technologies erode intimacy and degrade physical presence, the argument is made that presence, distance, intimacy and control are reconfigured within mediated therapy. Analysis of practitioners' experiences of teletherapy examines the material and expressive components of 'assemblages' characterised by their stable and fluid properties. Two assemblages are identified and discussed: emergency care assemblages and assemblages of intimacy, both of which are aligned with specific sectors of mental health care. Evidence that therapeutic encounters are constrained by technologies are considered alongside the material conditions and inequalities of vulnerable groups, while assemblages with relatively stable properties are generative of new ways of relating to clients online. These findings highlight the material and expressive components of human and nonhuman assemblages that create new kinds of affective relations in distanced care. [ABSTRACT FROM AUTHOR]

In the Scandinavian countries, reablement has become a principle permeating all parts of elderly care, hence potentially transforming care and care work. This article explores the advent of new knowledge paradigms and practices of physiotherapists and occupational therapists transforming reabling care in particular ways, leading to what we term a logic of training emerging in the field. These professional groups have obtained a dominant position as reablement specialists in Norway and Denmark, where our extensive fieldwork was performed as part of a 3‐year research project. Taking inspiration from Annemarie Mol's concept of logic, we study how professional practices are organised and infused with specific values, meanings and ideals in situated contexts. We hence explore the logic of training, its abstracted image of the body and rational goal‐oriented model for progress measurement and its ramifications when addressing ageing bodies in a complex field marked by the unpredictabilities of the social and lived bodies, administrative rules and temporalities and the quest for empowering and involving clients. The paper concludes by pointing at new contradictions arising when practicing reabling care and particularly points out the tensions arising in care relations, where ambitions on empowering and disciplining the client and the elderly body may collide. [ABSTRACT FROM AUTHOR]

Modern health‐care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS‐related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct‐acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C‐affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192–201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99‐202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma‐reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C. [ABSTRACT FROM AUTHOR]

The article discusses information about the 27th Sociology of Health and Illness Monograph. Topics covered include the emergence of the construct of overdiagnosis, the impact of diagnostic, prognostic, and treatment uncertainty on the lay-professional interface, and organisational and health system level responses to uncertainty.

The medicalisation of marijuana has occurred rapidly, albeit nonuniformly, across the US and around the world over the past 3 decades. This paper centres on the medicalisation of marijuana in Minnesota—which has one of the most restrictive programs in the country—as a case for evaluating the negotiation of institutional boundaries with the shift from criminalisation to medicalisation after nearly a century of criminal prohibition. Drawing upon Foucauldian discourse analyses of the medical and law enforcement associations' position statements and legislative hearings that shaped medical marijuana policy in Minnesota, this paper demonstrates a symbiotic convergence between medicine and law enforcement through the deployment of shared discursive strategies in their opposition to medical marijuana that reinforce marijuana's criminalised status by solidifying the boundaries between proper medicine and dangerous drugs. Criminal justice and medical institutions draw upon one another's definitions, logics, and practices in a mutually constitutive manner, while still maintaining distinct user subjects and institutional interventions for each based on the user's access to state‐approved forms of marijuana. The consequences for the governing of marijuana in Minnesota are explored, as well as the broader implications for the sociological study of medicalisation and criminalisation with respect to the governance of drugs and health. [ABSTRACT FROM AUTHOR]

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]

Doctors are typically portrayed as active agents in their work lives. However, this paper argues that this construction of agency ignores the effects of the healthcare structures that constrain choice, which in turn affects population health outcomes. Medical training pathways, regional boundaries, and rationalisation all have a long‐lasting impact on the provision of healthcare. Using a mobilities lens to examine the movement of doctors, this paper examines how the expectation of movement built into training programmes perpetuates unequal access to healthcare. Long waiting times, poor care quality and lack of preventative care all perpetuate health inequalities; as one of the socio‐economic determinants, access to healthcare affects health outcomes. [ABSTRACT FROM AUTHOR]

This paper examines the citation counts of papers published in the first 25 years of the Sociology of Health and Illness. According to this measure only a small number of papers have made a major impact on the discipline of sociology of health and illness and an analysis of these select papers identifies some common themes. In particular, 'successful' papers have provided important theoretical constructs for the field while exploration of aspects of identity has been a recurrent focus. [ABSTRACT FROM AUTHOR]

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]

There is a gap between the desired outcomes of social inclusion policy and the everyday experiences of people labelled with intellectual and developmental disabilities. Despite belonging rhetorically named in social inclusion policy and practice, belonging is often absent in the lives of people labelled with intellectual and developmental disabilities and remains undertheorised in its relationship to social inclusion. In this paper, we explore the role belonging might play in narrowing the gap between how social inclusion is theorised and how it is experienced. Drawing on critical disability and feminist relational theories, we outline a relational conceptualisation of belonging and use it to 'crip' the construct of social inclusion. Exploring the synergies and tensions that surface when social inclusion and belonging are held together as discrete but interconnected constructs, we name four conceptual shifts and expansions that allow us to see social inclusion differently. Through the centring of the experiences of people labelled with intellectual and developmental disabilities, we explore the ways belonging can help to reimagine inclusion from assimilationist, static, objective and formal towards inclusion as fluid, negotiated, (inter)subjective, (in)formal and intimate. [ABSTRACT FROM AUTHOR]

Health inequalities impact sex‐variant people in highly differentiated ways. This is evidenced in much academic and activist intersex research documenting the highly specific forms of inequalities arising from misrecognition, discrimination and human rights abuses inherent to pathologised accounts of non‐normative bodies. Important theoretical work further interrogates the implications of sex variant subjectivities, identities and bodies for static or binary notions of both sex and gender. In this paper, we aim to contribute further to this scholarship. We draw upon feminist materialist and Deleuzean‐informed understandings of materials or matter to rethink debates over sex‐variant subjectivities, identities and bodies in relation to inequalities in health. We argue 'the turn to matter' and associated new materialist theories draw attention to the complex, dynamic relational assemblages and entanglements mutually constituting the affective, embodied and socio‐material worlds of intersex people. Informed by these theories, we propose that inequalities can be more fully addressed through a new health equity research agenda that is co‐produced with sex‐variant people. This agenda will enable a fuller exploration of the unsettling but transformative capacities of intersex matters and meanings with the contextually specific understandings of equity in relation to health and health care. [ABSTRACT FROM AUTHOR]

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]

Health‐related ethnography undertaken in a context marked by social inequalities and colonial legacies requires critical attention to power imbalances in the fieldwork. In this paper, I draw on my own experiences from studying genetic research in Pakistan. As a Danish‐born female researcher with roots in Pakistan, I have followed genetic researchers and families dealing with genetic conditions in Pakistan. Through examples I unearth how encounters in the field were shaped by complicities of being in‐between the Danish and the Pakistani, of studying and doing international research at the same time, and of my inaction towards suffering families. I base my analysis on the notion that complicity manifests in a generative, and unavoidable, engagement with both complex structures of inequality and interlocutors. We can never fully understand the specificities or consequences of complicity—whether moral or epistemic—when entering, engaging with or representing our fields. However, by staying constructively with the tensions, instead of attempting to move beyond the discomfort that they might create, we can learn how to deal with the consequences and in that, build further the value of ethnographic activity. [ABSTRACT FROM AUTHOR]

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]

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]

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]

China's 2009 health care reform agenda has been referred to as one of the most ambitious health policy programmes in modern history. Significant investment has combined with new structures, incentives, and regulations that have aimed to improve access, as well as gain greater control over a health care market much criticised for putting profit before patients. A range of health services research has been undertaken to analyse these efforts. Sociological perspectives have also been documented yet up to now a review and synthesis combining these various contributions has not been undertaken. By drawing on the lens of McDonaldization, the paper presents a narrative review that analyses the extent to which China's 2009 reform agenda has increased efficiency, calculability, predictability, and control over service provision. The review identifies elements of McDonaldization within China's 2009 reform agenda, however, notable gaps remain. In response to the limits of McDonaldization as a lens for understanding China's health care reform, the paper calls for alternative perspectives that are better able to understand the sociocultural dynamics shaping service provision, as well as an interdisciplinary research agenda that is able to generate new insights and understanding regarding health care in China. [ABSTRACT FROM AUTHOR]

The article provides insights on the urgent need for transformative responses in health and social care services due to challenges such as aging populations, chronic illnesses, infrastructure underinvestment, and workforce shortages. It presents papers that examine different aspects of these transformations, including the adoption of single-handed care.

This paper takes a critical look at the role of chronobiology in society today, with particular reference to its entanglements with health and medicine and whether or not this amounts to the (bio)medicalisation of our bodily rhythms. What we have here, we show, is a complex unfolding storyline, within and beyond medicine. On the one hand, the promises and problems of these circadian, infradian and ultradian rhythms for our health and well‐being are now increasingly emphasised. On the other hand, a variety of new rhythmic interventions and forms of governance are now emerging within and beyond medicine, from chronotherapies and chronopharmacology to biocompatible school and work schedules, and from chronodiets to the optimisation of all we do according to our 'chronotypes'. Conceptualising these developments, we suggest challenges us to think within and beyond medicalisation to wider processes of biomedicalisation and the biopolitics of our body clocks: a vital new strand of chronopolitics today indeed which implicates us all in sickness and in health as the very embodiment of these rhythms of life itself. The paper concludes with a call for further research on these complex unfolding relations between chronobiology, health and society in these desynchronised times of ours. [ABSTRACT FROM AUTHOR]

This paper contributes to the debate on the patient–doctor relationship by focussing on a specific chronic disease: type 1 diabetes. This field is characterised by an increasing use of technology, specifically therapeutic devices and a significant requirement of patient self‐management. This paper presents the main findings of research conducted in Italy in 2018. It is argued that this relationship is more properly described as an interdependent figuration of actors characterised by a dynamic process of power balances, which recalls Elias' (What is sociology? Columbia University Press, 1978) figurational‐processual and relational sociology. In this theoretical context, patients may manage their (dis)satisfaction with their diabetologists by choosing different behaviours that stem from Hirschman's archetype (Exit, voice, and loyalty. Responses to decline firms, organizations, and states. Harvard University Press, 1970): voice, exit, loyalty and, we would add, resignation. These categories are fluid, and all of them can be experienced by patients over time, depending on the quality of the figurations built among these transactors. [ABSTRACT FROM AUTHOR]

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from 'epistemic injustices' – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non‐psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones. [ABSTRACT FROM AUTHOR]

Digital technologies are increasingly embedded in clinical encounters, reconfiguring the basis on which health care is delivered. Thereby, the delivery of care shifts from territorial locations in clinics and temporal modes of co‐presence towards digital platforms. Drawing on a sociotechnical evaluation of digitised patient follow‐up in HIV care, this paper argues that the forms of interactivity practised in platform encounters cannot be adequately understood through traditional interaction frameworks such as Erving Goffman's interaction order. To conceptualise the new informational space and temporal mode of 'response presence' within which platform encounters are conducted, the paper draws on theoretical advances made by Karin Knorr Cetina who further developed Goffman's interaction order to describe interactions augmented by 'scopic media'. A comprehensive framework is presented to elaborate the distinct qualities of interactions occurring in face‐to‐face, tele‐interaction and platform encounters and to analyse their affordances based on doctor and patient experiences. This framework is intended to stimulate further research on how new interactional forms between doctors and patients will reconfigure roles and responsibilities as well as wider structures of digital society. Furthermore, it can also support practical guidance of when and how different forms of clinical encounters may be integrated in care pathways. [ABSTRACT FROM AUTHOR]

Social prescribing, a way of connecting patients to local services, is central to the NHS Personalised Care agenda. This paper employs ethnographic data, generated with 19 participants between November 2018 and July 2020, to explore the socio‐temporal relations shaping their experiences of a local social prescribing intervention. Our focus is on the ways in which the intervention synchronised with the multitude of shifting, complex and often contradictory 'timespaces' of our participants. Our focus on the temporal rhythms of everyday practice allows us to trace a tension between the linearity and long horizon of the intervention and the oft contrasting timeframes of participants, sometimes leading to a mismatch that limited the intervention's impact. Further, we observed an interventional 'drift' from continuity towards unsupported signposting and 'out‐of‐the‐blue' contacts which favour the temporality of the intervention. We demonstrate a need for intervention planning to be flexible to multiple, often conflicting, temporalities. We argue that health interventions must account for the temporal relations lived by the people they seek to support. [ABSTRACT FROM AUTHOR]

New medicines can transform routines and priorities in clinical practice, but how do clinicians think and feel about these changes, and how does it affect their work? In Australia, the HIV prevention regimen pre‐exposure prophylaxis (PrEP) has been rapidly rolled out, transforming the sexual cultures and practices of users, but less attention has been given to the ways PrEP has reconfigured clinical practice. This paper draws on 28 qualitative semi‐structured interviews conducted between 2019 and 2020 with PrEP‐providing doctors and nurses in Australia to consider how they have affectively engaged with PrEP and put it into practice. Through a reflexive thematic analysis, we explore how clinicians adapted to PrEP, how the field of HIV prevention has been transformed, and how these developments have changed how clinicians approach patients. While the introduction of PrEP was initially received with uncertainty and shock, clinicians described PrEP as enjoyable to prescribe, and better aligned with the moral duties of sexual health consultations than existing HIV prevention strategies like condoms. Through approaching clinical work as an 'affective practice', we argue for attending not only to how new interventions change expectations and practices, but also how these changes are felt and valued by clinicians. [ABSTRACT FROM AUTHOR]

Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in‐depth interviews with adolescents aged 12–17 years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non‐normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which HIV specialists based in the United Kingdom (UK) construct, conceptualise and imagine their patient group via the concept of the 'imaginary', a notion encompassing the symbols, concepts and values through which people make sense of their social environment. In discussing their work with men who have sex with men (MSM), practitioners described patients as knowledgeable and highly adherent to treatment, yet apt to pursue hedonistic lives involving sex and recreational drugs. Recent innovations in treatment were formulated in terms of optimism and progress and the ascent of biomedical approaches was cast as an advance over former emphases on psychosocial interventions and attempts to facilitate behaviour change. In contrast to the imaginary of patients who were well‐informed and highly compliant with treatment, participants also sought to explain those who were not easily enfolded within modern treatment regimens or who were seen to be overly emotional. These patients, it was said, had some pre‐existing psychological problem or perhaps were especially vulnerable to societal pressures. Overall, the imaginary of the public was pervaded by therapeutic optimism, a sense of progress and an invigoration of biomedical themes in overcoming the challenges of delivering services to MSM. [ABSTRACT FROM AUTHOR]

Drawing on semi‐structured interviews with larger bodied patients (n = 20) and their healthcare practitioners (n = 22) in Canada, this paper combines micro and macro approaches in outlining a social justice approach to caring for larger patients in healthcare practice. Theoretically, we draw upon structural competency and critical consciousness to address the question of how social justice is enacted, experienced, and understood in interactions between clinicians and larger patients. Our findings highlight four key themes that provide a framework for integrating social justice into healthcare practice: (1) an awareness of one's simultaneous experience of marginalisation and privilege in the clinical interaction; (2) navigating between additive and interactive understandings of intersectionality; (3) micro and macro approaches to change; and (4) straddling the line between equity and equality. The synergies in participants' perspectives across social identities suggests that the cultivation of social justice awareness potentially mitigates some blinders of privilege. Furthermore, practitioners' social justice orientation positively impacted patient experience, with most patients expressing appreciation for having their various histories of trauma and social challenges handled compassionately during appointments. [ABSTRACT FROM AUTHOR]

Reducing health inequalities remains a challenge for policy makers across the world. Beginning from Lewin's famous dictum that "there is nothing as practical as a good theory", this paper begins from an appreciative discussion of 'fundamental cause theory', emphasizing the elegance of its theoretical encapsulation of the challenge, the relevance of its critical focus for action, and its potential to support the practical mobilisation of knowledge in generating change. Moreover, it is argued that recent developments in the theory, provide an opportunity for further theoretical development focused more clearly on the concept of power (Dickie et al. 2015). A critical focus on power as the essential element in maintaining, increasing or reducing social and economic inequalities – including health inequalities – can both enhance the coherence of the theory, and also enhance the capacity to challenge the roots of health inequalities at different levels and scales. This paper provides an initial contribution by proposing a framework to help to identify the most important sources, forms and positions of power, as well as the social spaces in which they operate. Subsequent work could usefully test, elaborate and adapt this framework, or indeed ultimately replace it with something better, to help focus actions to reduce inequalities. [ABSTRACT FROM AUTHOR]

In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as 'dignity work'. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under‐utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying. [ABSTRACT FROM AUTHOR]

This paper critically explores the research and development of 'digital phenotyping', which broadly refers to the idea that digital data can measure and predict people's mental health as well as their potential risk for mental ill health. Despite increasing research and efforts to digitally track and predict ill mental health, there has been little sociological and critical engagement with this field. This paper aims to fill this gap by introducing digital phenotyping to the social sciences. We explore the origins of digital phenotyping, the concept of the digital phenotype and its potential for benefit, linking these to broader developments within the field of 'mental health sensing'. We then critically discuss the technology, offering three critiques. First, that there may be assumptions of normality and bias present in the use of algorithms; second, we critique the idea that digital data can act as a proxy for social life; and third that the often biological language employed in this field risks reifying mental health problems. Our aim is not to discredit the scientific work in this area, but rather to call for scientists to remain reflexive in their work, and for more social science engagement in this area. [ABSTRACT FROM AUTHOR]

The paper draws on Bourdieu's conceptualisation of the symbolic order and his little used concept of ethos in order to gain novel understandings of boundary struggles between nursing and medicine as well as internally in nursing. The constituents of boundary struggles are analysed in the context of healthcare transformation, focusing on organisational, institutional and political boundary undertakings. Changing conditions for boundary demarcations and professionalisation include a preference for evidence‐based knowledge and practice, seen as a remedy against common problems in health care. The paper shows how nurses use the changes in 'the space of possible professionalisation' in their struggle for professionalisation when they expand their scope of practice and embark on what is conceptualised as a curing ethos, where nursing is understood as a discipline performing practices that lead to cure. However, this is repudiated by the medical profession at all levels. Moreover, curing stands opposed to the caring ethos in nursing and boundary struggles surface as 'ethos confrontation' between caring‐ and curing‐oriented nurses in practice. The boundary struggles analysed in this paper raise important questions about healthcare manageability and the development of sustainable professional environments. [ABSTRACT FROM AUTHOR]

Currently dominant in medical discourse, the concept of self‐management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under‐theorised. While self‐management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day‐to‐day management. In all, 22 couples participated in in‐depth, semi‐structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork. [ABSTRACT FROM AUTHOR]

In this collection we revisit the enduring phenomenon of uncertainty in health care, and demonstrate how it still offers coherence and significance as an analytic concept. Through empirical studies of contemporary examples of health care related uncertainties and their management, our collection explores the different ways in which uncertainty may be articulated, enacted and experienced. The papers address a diverse range of healthcare contexts ‐ Alzheimer's disease, neonatal surgery, cardiovascular disease prevention, cancer, addiction (use of alcohol and other drugs during pregnancy), mental health/disorders and medical education – and many tackle issues of contemporary relevance, such as an ageing population, and novel medical interventions and their sequelae. These empirical papers are complemented by a further theoretical contribution, which considers the role of 'implicit normativity' in masking and containing potential ethical uncertainty. By mapping themes across the collection, in this introduction we present a number of core analytical strands: (1) conceptualising uncertainty; (2) intersections of uncertainty with aspects of care; (3) managing uncertainty; and (4) structural constraints, economic austerity and uncertainty work. We reflect on the methodological and theoretical stances used to think sociologically about uncertainty in health care, and the strengths, silences and gaps we observe in the collection. We conclude by considering the implications of the insights gained for 'synthesising certainty' in practice and for future research in this area. [ABSTRACT FROM AUTHOR]