Showing papers in "Sociology of Health and Illness in 2019"
TL;DR: Investigation of vaccine hesitation among French parents of young children found parents with a higher socioeconomic status were able to engage more resources and use a wider repertoire of actions, and they also displayed greater health literacy.
Abstract: During the last decade, public health research has emphasised the growing public disaffection with vaccination. This contemporary vaccine hesitation (VH) refers to a delay in acceptance or refusal of vaccines, as well as agreement despite doubt and reluctance. We investigated VH among French parents of young children, with an emphasis on two key features of VH: trust towards physicians and commitment to vaccination issues. We targeted two populations with contrasting socioeconomic profiles, using in-depth interviews (n = 25). Most parents exhibited some kind of VH, with differentiated attitudes across vaccines, including acceptance despite enduring doubts, especially for vaccines already provided to older siblings ('vaccine inertia'). Despite the rise of the Internet and social media, our participants still strongly relied on face-to-face interactions with peers and significant others. Most participants trusted their own physician but this was the result of a selection process: they had engaged resources to find a physician they could trust. Participants with contrasted socioeconomic profiles struggled with the same dilemmas, and they committed themselves to the same quest to find the 'right' physician. Nevertheless, parents with a higher socioeconomic status were able to engage more resources and use a wider repertoire of actions, and they also displayed greater health literacy.
67 citations
TL;DR: Analysis demonstrates how and why 'precarious partnerships' between local service providers were significant in the process of 'citizen shift' whereby government responsibility for addressing inequity was decollectivised.
Abstract: Despite political change over the past 25 years in Britain there has been an unprecedented national policy focus on the social determinants of health and population-based approaches to prevent chronic disease. Yet, policy impacts have been modest, inequalities endure and behavioural approaches continue to shape strategies promoting healthy lifestyles. Critical public health scholarship has conceptualised this lack of progress as a problem of 'lifestyle drift' within policy whereby 'upstream' social contributors to health inequalities are reconfigured 'downstream' as a matter of individual behaviour change. While the lifestyle drift concept is now well established there has been little empirical investigation into the social processes through which it is realised as policies are (re)formulated and implementation is localised. Addressing this gap we present empirical findings from an ethnography conducted in a deprived English neighbourhood in order to explore: (i) the local context in the process of lifestyle drift and; (ii) the social relations that reproduce (in)equities in the design and delivery of lifestyle interventions. Analysis demonstrates how and why 'precarious partnerships' between local service providers were significant in the process of 'citizen shift' whereby government responsibility for addressing inequity was decollectivised.
48 citations
TL;DR: It is argued that the lived experience of medicalisation is a non-linear, complex process whereby individual engagement with medical authority is both empowering and constraining in the lives of trans people.
Abstract: This article uses ethnographic methods to explore how transgender people engage the medicalisation of transgender experience in a U.S. context under the purview of the American Psychiatric Association. Building on sociological literature related to medicalisation, this paper argues that the lived experience of medicalisation is a non-linear, complex process whereby individual engagement with medical authority is both empowering and constraining in the lives of trans people. Inductive qualitative analysis of 158 hours of participant observation and 33 in-depth interviews with members of a transgender community organisation revealed that transgender individuals (i) reject a medical frame for gender dysphoria, (ii) embrace and stress the importance of gender-affirming medical technologies for individual identity development and social interaction and (iii) strategically reintroduce medical logics and embrace medical authority in order to facilitate medical and social recognition, validation and acceptance.
44 citations
TL;DR: It is shown how purportedly novel fields have been constituted in part through practices of ‘performative nominalism’, culminating with knowledge‐production in mental health as one significant focus.
Abstract: Digital artefacts and infrastructures have been presented as ever more urgent and necessary for mental health research and practice Telepsychiatry, mHealth, and now digital psychiatry have been promoted in this regard, among other endeavours Smartphone apps have formed a particular focus of promissory statements regarding the improvement of epistemic and clinical work in psychiatry This article contextualises and historicises some of these developments In doing so, I show how purportedly novel fields have been constituted in part through practices of 'performative nominalism' (whereby articulations of a neologism in relation to established and recent developments participate in producing the referent of the new term) Central to this has been implicit and explicit extolment of what I term biomedical virtues in public-facing and professionally orientated discourse I document how emphases on various virtues have shifted with the attention of psychiatry to different digital modalities, culminating with knowledge-production in mental health as one significant focus
39 citations
TL;DR: It is suggested that the uses and effects of naloxone are co-produced within social relations and, therefore, this initiative 'affords' multiple outcomes and it is argued that these affordances are shaped by a politics of care, and that these politics relate to uptake.
Abstract: 'Take-home naloxone' refers to a life-saving intervention in which a drug (naloxone) is made available to nonmedically trained people for administration to other people experiencing an opioid overdose. In Australia, it has not been taken up as widely as would be expected, given its life-saving potential. We consider the actions of take-home naloxone, focusing on how care relations shape its uses and effects. Mobilising Science and Technology Studies insights, we suggest that the uses and effects of naloxone are co-produced within social relations and, therefore, this initiative 'affords' multiple outcomes. We argue that these affordances are shaped by a politics of care, and that these politics relate to uptake. We analyse two complementary case studies, drawn from an interview-based project, in which opioid consumers discussed take-home naloxone and its uses. Our analysis maps the ways take-home naloxone can afford (i) a regime of care within an intimate partnership (allowing a terminally ill man to more safely consume opioids) and (ii) a political process of care (in which a consumer takes care of others treated with the medication by administering it 'gently'). We conclude by exploring the political affordances of a politics of care approach for the uptake of take-home naloxone.
38 citations
TL;DR: It is argued that farm accidents and fatalities are a persistent social problem because family members socialise each other to accept danger as the norm.
Abstract: In the western world, farming is the most dangerous occupation with the highest rates of accidents and fatalities. Farming remains largely a family business and most accidents happen to family members. Why do safety campaigns have such limited success and why do farm families bring this terrible grief on themselves? This article argues that farm accidents are a persistent social pattern requiring analysis of how families are socialised to interact with the farming space. Based on qualitative data gathered for a Scottish study, it is argued that within farm families there is a socialisation and normalisation of danger. Accidents are to be expected. Two key arguments are advanced. First, danger is normalised and children are socialised to undertake risky behaviour. Second, it is suggested that when women do take up farming, they consciously undertake dangerous farming activities to prove that they are 'authentic' farmers. No previous research has considered women's approach to danger, and the existing literature suggests women are more safety conscious. This is not supported by our findings. We argue that farm accidents and fatalities are a persistent social problem because family members socialise each other to accept danger as the norm.
34 citations
TL;DR: Tracing methadone's translations in high-security prisons in the Kyrgyz Republic, it is noticed the multiple methadones made possible, what these afford, and the onto-political effects they make, calling for a move towards 'evidence-making' intervention approaches.
Abstract: In this paper, we reflect on health intervention translations as matters of their implementation practices. Our case is methadone treatment, an intervention promoted globally for treating opioid dependence and preventing HIV among people who inject drugs. Tracing methadone's translations in high-security prisons in the Kyrgyz Republic, we notice the multiple methadones made possible, what these afford, and the onto-political effects they make. We work with the idea of the 'becoming-methadone-body' to trace the making-up of methadone treatment and its effects as an intra-action of human and nonhuman substances and bodies. Methadone's embodied effects flow beyond the mere psycho-activity of substances incorporating individual bodies, to material highs and lows incorporating the governing practices of prisoner society. The methadone-in-practice of prisoner society is altogether different to that imagined as being in translation as an intervention of HIV prevention and opioid treatment, and has material agency as a practice of societal governance. Heroin also emerges as an actor in these relations. Our analysis troubles practices of 'evidence-based' intervention and 'implementation science' in the health field, by arguing for a move towards 'evidence-making' intervention approaches. Noticing the onto-politics of health intervention translations invites speculation on how intervening might be done differently.
34 citations
TL;DR: This research examines how different forms of knowledge and expertise are increasingly important in caring for people experiencing mental illness and points to how the situated nature of subjective knowing is uniquely embedded in time and space and allows for the alignment of embodied knowledge with trajectories of care.
Abstract: Our research examines how different forms of knowledge and expertise are increasingly important in caring for people experiencing mental illness. We build on theoretical developments regarding multiple ontologies of knowing about illness. We examine how experiential knowledge of mental health problems, learned by being subject to illness rather than through objective study, is enacted in mental healthcare teams. We focus on Peer Workers (PW), individuals who have lived experience of mental health problems, and who contribute knowledge and expertise to mental health care within multidisciplinary healthcare teams. Our longitudinal study was undertaken over 2 years by a multidisciplinary team who conducted 91 interviews with PW and other stakeholders to peer support within a comparative case study design. We show how workers with tacit, experiential knowledge of mental ill health engaged in care practice. First, we show how subjective knowing is underpinned by unique socialisation that enables the development of shared interactional spaces. Second, we point to how the situated nature of subjective knowing is uniquely embedded in time and space and allows for the alignment of embodied knowledge with trajectories of care. Third, we provide insight into how subjective forms of expertise might be incorporated into multidisciplinary care.
31 citations
TL;DR: The paper concludes by addressing accountability for the workings of algorithmic systems in medical practice, suggesting that such questions must also be discussed in relation to encounters between algorithmic imaginaries, health professionals and patients, and the various forms of 'repair work' needed to enablegorithmic systems to work in practice.
Abstract: In the past decade, the figure of the algorithm has emerged as a matter of concern in discussions about the current state of the healthcare sector and what it may become. While analytical focus has mainly centred on 'algorithmic entities', the paper argues that we have to move our analytical focus towards 'algorithmic assemblages', if we are to understand how advanced algorithms will affect health care. Departing from this figure, the paper explores how an algorithmic system, designed to 'take on' the role of a physiotherapist in physical rehabilitation programmes in Denmark, was designed and made to work in practice. On the basis of ethnographic fieldwork, it is demonstrated that the algorithmic system is a fragile accomplishment and outcome of negotiations between the imaginaries embedded in its design and the ongoing adjustments of IT workers, patients and professionals. Drawing on recent work on the fragility and incompleteness of algorithms, it is suggested that the algorithmic system needs to be creatively 'repaired' to build and maintain enabling connections between bodies in-motion and professionals in arrangements of care. The paper concludes by addressing accountability for the workings of algorithmic systems in medical practice, suggesting that such questions must also be discussed in relation to encounters between algorithmic imaginaries, health professionals and patients, and the various forms of 'repair work' needed to enable algorithmic systems to work in practice. Such acts of accountability cannot be understood within an ethics of transparency, but are better thought of as an ethics of 'response-ability', given the need to intervene and engage with the open-ended outcomes of algorithmic systems.
30 citations
TL;DR: It is suggested that socio-material approaches and practice theories provide a shared space within which productive tensions between sociology of health and STS can continue and offer fruitful perspectives along which digital health can be explored across a range of technologies and health practices.
Abstract: In this editorial introduction, we explore how digital health is being explored at the intersection of sociology of health and science and technology studies (STS). We suggest that socio-material approaches and practice theories provide a shared space within which productive tensions between sociology of health and STS can continue. These tensions emerge around the long-standing challenges of avoiding technological determinism while maintaining a clear focus on the materiality and agency of technologies and recognising enduring sets of relations that emerge in new digital health practices while avoiding social determinism. The papers in this Special Issue explore diverse fields of healthcare (e.g. reproductive health, primary care, diabetes management, mental health) within which heterogenous technologies (e.g. health apps, mobile platforms, smart textiles, time-lapse imaging) are becoming increasingly embedded. By synthesising the main arguments and contributions in each paper, we elaborate on four key dimensions within which digital technologies create ambivalence and (re)configure health practices. First, promissory digital health highlights contradictory virtues within discourses that configure digital health. Second, (re)configuring knowledge outlines ambivalences of navigating new information environments and handling quantified data. Third, (re)configuring connectivity explores the relationships that evolve through digital networks. Fourth, (re)configuring control explores how new forms of power are inscribed and handled within algorithmic decision-making in health. We argue that these dimensions offer fruitful perspectives along which digital health can be explored across a range of technologies and health practices. We conclude by highlighting applications, methods and dimensions of digital health that require further research.
30 citations
TL;DR: It is found that there is a vaping subculture in Norway, and two dominant vaper identities are identified: dedicated vapers who identified with symbols and values in the subculture and substitutes who used e-cigarettes for smoking cessation in a more pragmatic and defensive manner.
Abstract: The use of e-cigarettes is increasing, a practice denoted as vaping. We explore user motives, self-identity as vapers and involvement in vaping subcultures, drawing on sociological theory of stigma, subcultures and symbolic boundaries. Based on analyses of semi-structured interviews with 30 Norwegian vapers, we find that there is a vaping subculture in Norway. We identify two dominant vaper identities. The first is labelled cloud chasers. These were dedicated vapers who identified with symbols and values in the subculture. Many were politically engaged in improving vaping regulation regimes and felt a sense of belonging to a vaping community. The second group is labelled substitutes. These were former daily smokers who used e-cigarettes for smoking cessation in a more pragmatic and defensive manner, to avoid health risks, to escape the stigma of smoking and to manage nicotine addiction. In this group, self-identity as a vaper was generally lacking. Vaping was often symbolically linked to the stigmatised smoker identity they wanted to escape, and was restricted to private contexts. The perceived symbolic meaning of e-cigarettes varies: for some, they are a symbol of pleasure and community. For others, they connote the stigmatised status of the addicted smoker seeking an alternative to cigarettes.
TL;DR: Examining the framing of equity within the UK's digital health policies between 2010 and 2017 reveals that while inclusion remains a priority area for policymakers, equity is being constituted in ways that reflect broader discourses of neoliberalism, empowerment and the turn to the market for technological solutionism, which may potentially exacerbate health inequalities.
Abstract: Informed by a discourse analysis, this article examines the framing of equity within the UK's digital health policies between 2010 and 2017, focusing on England's development of NHS Digital and its situation within the UK Government's wider digital strategy. Analysis of significant policy documents reveals three interrelated discourses that are engaged within England's digital health policies: equity as a neoliberal imaginary of digital efficiency and empowerment; digital health as a pathway towards democratising health care through data-sharing, co-creation and collaboration; and finally, digital health as a route towards extending citizen autonomy through their access to data systems. It advances knowledge of the relationship between digital health policy and health inequalities. Revealing that while inclusion remains a priority area for policymakers, equity is being constituted in ways that reflect broader discourses of neoliberalism, empowerment and the turn to the market for technological solutionism, which may potentially exacerbate health inequalities.
TL;DR: How gay men rally around, debate, and sometimes disagree about these emerging HIV prevention technologies is explored, using data from the Resonance Project, a Canadian community-based research project.
Abstract: The advancements of "treatment as prevention" (TasP), "undetectable viral load" (UVL) and "pre-exposure prophylaxis" (PrEP) are redefining HIV prevention standards. Relying on the concept of biosociality, this article explores how gay men rally around, debate, and sometimes disagree about these emerging HIV prevention technologies. This article is based on data from the Resonance Project, a Canadian community-based research project. Twelve focus groups (totalling 86 gay and bisexual men) were held in three Canadian cities (Montreal, Toronto, Vancouver) in 2013-2014. Respondents view UVL and PrEP through the prism of their generational experience of HIV prevention. In this respect, biosocialities highlight an experiential dimension that is tied to the context of the HIV epidemic. The biosocialities of HIV prevention are also built around serological identities. However, our study shows the diversity of these positions. Analysis grounded in biosocialities is useful for better understanding how scientific information circulates, is made sense of, and generates debate among gay men.
TL;DR: It is argued that while remote monitoring leads to a redefinition of the patient-provider relationship, it could also offer the opportunity to develop a more intimate acquaintance not possible via only routine visits.
Abstract: Remote monitoring has often been thought to lead to a highly structured and standardised care process. Several studies have stressed that patient-provider communication could be hindered if mediated by technologies, leading to an impoverished relationship. We argue that while remote monitoring leads to a redefinition of the patient-provider relationship, it could also offer the opportunity to develop a more intimate acquaintance not possible via only routine visits. The study is part of a clinical trial aimed at assessing the acceptability of a remote monitoring platform for type 1 diabetes. Drawing on practice-based studies, we focused our analysis on the practice of text message exchange between patients and providers. The 396 conversations were coded with a template analysis, leading to the identification of two main categories: 'knowing the patient' and 'knowing about the patient'. The analysis reveals that the practice of messaging led to the development of a 'digital intimacy', a relationship characterised by a thorough familiarity made possible by electronic devices that extends to face-to-face encounters. Drawing on our case, we argue that remote monitoring can foster greater intimacy between patients and providers, which is made possible by the overall increase in the quantity and quality of communication between patients and providers.
TL;DR: It is suggested that the interconnection of different layers of reflexivity can either reinforce certainty or deepen the ambiguity and uncertainty of reflexive agents.
Abstract: This paper analyses the contemporary public debate about vaccination, and medical knowledge more broadly, in the context of social media. The study is focused on the massive online debate prompted by the Facebook status of the digital celebrity Mark Zuckerberg, who posted a picture of his two-month-old daughter, accompanied by a comment: “Doctor's visit -- time for vaccines!” Carrying out a qualitative analysis on a sample of 650 comments and replies, selected through systematic random sampling from an initial pool of over 10,000 user contributions, and utilising open and axial coding, we empirically inform the theoretical discussion around the concept of the reflexive patient and introduce the notion of multi-layered reflexivity. We argue that the reflexive debate surrounding this primarily medical problem is influenced by both biomedical and social scientific knowledge. Lay actors therefore discuss not only vaccination, but also its political and economic aspects as well as the post-truth information context of the debate. We stress that the reflexivity of social actors related to the post-truth era re-enters and influences the debate more than ever. Furthermore, we suggest that the interconnection of different layers of reflexivity can either reinforce certainty or deepen the ambiguity and uncertainty of reflexive agents.
TL;DR: It is shown that a free subject that needs support to enact its will is crucial to understand the optimism about prevention and there are many different types of ethico‐psychological subjects in practices of self‐tracking that need to be explored in order to establish what good these practices ofSelf‐quantification might do.
Abstract: Prevention enthusiasts show great optimism about the potential of health apps to modify peoples' lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self-tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of the various types of 'ethico-psychological subjects' that emerge in practices of self-quantification by analysing how people and numbers relate in three cases of self-quantification: in prevention discourse, in testimonies from the quantified self (QS) movement and in empirical work we did with people with Diabetes type I and with 'every day self-trackers'. We show that a free subject that needs support to enact its will is crucial to understand the optimism about prevention. In the QS-movement the concern is with a lack of objective and personalised knowledge about imperceptible processes in the body. These subjects are decentered and multiplied when we trace how numbers in their turn act to make sense of people in our empirical study. We conclude that there are many different types of ethico-psychological subjects in practices of self-tracking that need to be explored in order to establish what good these practices of self-quantification might do.
TL;DR: This paper shows howCoproduction is forged by making and relying upon clinic-based relationships, and for patients also with a broader human community, and recommends that healthcare practitioners incorporate into their coproduction analytic methods and perspectives to engage patients as capable and aware individuals, who can support clinic efficiencies while producing new delivery possibilities.
Abstract: The financial and capacity pressures facing healthcare systems call for new strategies to deliver high-quality, efficient services. 'Coproduction' is a concept gaining recognition as an approach to create patient partnerships that enable better functioning healthcare systems. Yet, this framing obscures coproduction's 'everyday and unavoidable' character, already part of healthcare service delivery. This paper aims to understand these everyday and unavoidable dimensions of coproduced healthcare services by drawing upon thematic and process analyses of a 15-month ethnography of 45 patients in three HIV clinics in New York. A 'health practices' approach guided exploring patients' activities, their effects on clinical processes, and the conditions surrounding their performances. By constructing a typology of activity types - Building, Accepting, and Objecting - and tracing patients' descriptions of activity performances, the paper shows how coproduction is forged by making and relying upon clinic-based relationships, and for patients also with a broader human community. These dynamics reveal how patients' bodily and temporal understandings are brought into and shape coproduced services. From these insights, we recommend that healthcare practitioners incorporate into their coproduction analytic methods and perspectives to engage patients as capable and aware individuals, who can support clinic efficiencies while producing new delivery possibilities.
TL;DR: It is demonstrated that it is important to contextualise experiences of chronic conditions in relation to different stages in the life course by exploring parents’ experiences of uncertainty and the way in which their views on childhood and epilepsy interacted and contributed to the uncertainties they experienced.
Abstract: Uncertainty has been highlighted as an important aspect of experiences of chronic conditions generally and epilepsy in particular. However, there is little research exploring the extent to which uncertainty features in the experiences of family members or the form that this uncertainty may take. Drawing on in-depth semi-structured interviews with 27 parents who had a child with epilepsy, this article explores parents' experiences of uncertainty and the way in which their views on childhood and epilepsy interacted and contributed to the uncertainties they experienced. It is argued that the occurrence of epilepsy during childhood shaped parents' experiences as they used their 'social clocks' in order to interpret symptoms. Furthermore, parents described what has been termed a 'cycle of uncertainty'. Indeed, the combination of epilepsy (a condition with various inherent forms of uncertainty) and childhood (a period in the life course that is seen as a time of development) meant that parents could not be sure which changes in their child were a result of the condition and which were a normal part of the ageing process. Overall, this article demonstrates that it is important to contextualise experiences of chronic conditions in relation to different stages in the life course.
TL;DR: The associated 'problems' of reduced condom use and sexually transmissible infections, as seen by HIV professionals, are considered in Australia, making PrEP available with public funding to people at risk of HIV.
Abstract: HIV pre-exposure prophylaxis (PrEP) has been embraced in Australia, making PrEP available with public funding to people at risk of HIV. Here, we consider the associated 'problems' of reduced condom use and sexually transmissible infections (STIs), as seen by HIV professionals. Twenty-one interviews were conducted during May-August 2017. All agreed that PrEP was a valuable addition to HIV prevention, but their views about reduced condom use and STIs were variable. Using poststructural policy analysis, three main stances were identified: (1) Concerned/alarmed. PrEP was seen as causing reduced condom use, STIs and antibiotic resistance, posing threats to the general population; (2) Neutral/normalising. Stakeholders emphasised that condom use was declining and STIs increasing independently of PrEP, and that PrEP was simply a new tool to be accommodated; (3) Optimistic/critical. PrEP was seen as diminishing fear of HIV and engaging users in more frequent testing and treatment that could lead to declining STI rates. What linked all three stances was the selective performance of evidence, deploying a mixture of personal experience, clinical observations, behavioural data and epidemiology. Anticipating possible futures through evidence-making suggested practical, political and moral consequences for what PrEP could become. We encourage others to consider these consequences with care.
TL;DR: It is found that the literature is dominated by competing forms of knowledge, such as health services research, and it is shown how sociology can contribute new and critical perspectives and insights on what is for many people a troubling issue.
Abstract: Forms of large-scale change, such as the regiona l re-distribution of clinical services, are an enduring reform orthodoxy in health systems of high-income countries. The topic is of relevance and importance to medical sociology because of the way that large-scale change significantly disrupts and transforms therapeutic landscapes, relationships and practices. In this paper we review the literature on large-scale change. We find that the literature is dominated by competing forms of knowledge, such as health services research, and show how sociology can contribute new and critical perspectives and insights on what is for many people a troubling issue.
TL;DR: The paper offers an interpretative perspective on runners as performance-seeking fitness consumers engaged in long-term self-management of health driven by a profound motivation to visualise and embody a long- term state of fitness.
Abstract: Contributing to critical digital health research and the sociology of health consumption, this study investigates the phenomenon of self-tracking and interpretation of consumer data via wearable technology and mobile fitness software applications (apps). It critically analyses qualitative data collected from members of running communities in the UK who are heavy users of apps and wearables. The study seeks to understand the meaning and practise of long-term use of apps and wearables targeted at consumers interested in tracking fitness, and the collection of personal health information over time. The paper offers an interpretative perspective on runners as performance-seeking fitness consumers engaged in long-term self-management of health. These consumers are driven by a profound motivation to visualise and embody a long-term state of fitness. Participants were also hyper-aware of advertising and promotional methods used to engage consumers. The findings raise concerns about the validity of personal fitness data, and how its collection promises improved personal health while visually promoting sought-after fit bodies. Further research is required to understand the transformative impact of fitness-tracking and how individuals negotiate personal classifications of health.
TL;DR: It is concluded that an 'expert patient' is someone who is familiar with the rules of engagement on sites such as Facebook and is able to negotiate and understand the affects and levels of disclosure and intimacy that such engagement demands.
Abstract: This article presents findings from a qualitative study concerning Australian women's use of Facebook for health and medical information and support and the implications for understanding modes of lay knowledge and expertise. Thinking with feminist new materialism theory, we identify the relational connections, affective forces and agential capacities described by participants as technological affordances came together with human bodily affordances. Affective forces were a dominant feature in users' accounts. Women were able to make relational connections with peers based on how valid or relevant they found other group members' expertise and experiences, how supportive other members were, how strong they wanted their personal connection to be and how much privacy they wanted to preserve. We identified three modes of engagement: 1) expertise claims based on appropriation and distribution of biomedical knowledge and experience; 2) sharing experiential knowledge without claiming expertise and 3) evaluation and use of knowledge presented by others principally through observing. We conclude that an 'expert patient' is someone who is familiar with the rules of engagement on sites such as Facebook and is able to negotiate and understand the affects and levels of disclosure and intimacy that such engagement demands.
TL;DR: How gender dynamics shape human tissue donation for research and for human health is examined to explain why any sociology of donation needs to take account of gender.
Abstract: Research on blood and organ donation in the UK reveal disparities between the proportions of women and men donating tissues. In this paper, we examine how gender dynamics shape human tissue donation for research and for human health. We consider the research use of aborted foetal tissue in stem cell science and in a placental research biobank; the therapeutic use of peripheral blood, plasma, and umbilical cord blood; and breastmilk donation for infant feeding. We consider how donors of these tissues view donation, and to what extent the relations between bodies, technologies, kinship, community and exchange inform their views on, and participation in, donation. We also explore how tissues derived from gendered bodies acquire value as they are transformed into scientific objects, stem cell therapies, transplants and nutritional products. Within the bioeconomies of human tissue donation, the supply and demand for different tissues is structured by gendered understandings of the safety, risks and benefits of donation and transplant technologies, which in turn impact on the experience of donation and outcomes for recipients of donated tissues.
TL;DR: This paper is the first study to explore firsthand accounts of these interactions through Dixon Woods' lens of candidacy and finds that in encounters with women who have experienced abuse GPs ineluctably communicate their views on the legitimacy of women's claims for support; these in turn shape future candidacy and help-seeking.
Abstract: A reticence on the part of women to disclose domestic abuse (DA) to family doctors, allied to front-line responses that do not always reflect an understanding of the structure and dynamics of DA, hampers the provision of professional support.
Using data from 20 qualitative interviews with women who have experienced DA, this paper explores their discourse about interacting with family doctors. It is the first study to explore firsthand accounts of these interactions through Dixon Woods’
lens of candidacy. It finds disclosure to be inherently dynamic as a process and expands the candidacy lens by considering the: (i) conflicting candidacies of victims and perpetrators; (ii) diversionary disclosure tactics deployed by perpetrators and,
(iii) the potential role of General Practitioner (GPs) in imagining candidacies from a structural perspective. By exploring the dynamics of disclosure through the concept of ‘structural competency’ it finds that in encounters with women who have
experienced abuse GPs ineluctably communicate their views on the legitimacy of women’s claims for support; these in turn shape future candidacy and help-seeking. Greater GP awareness of the factors creating and sustaining abuse offers the
potential for better care and reduced stigmatisation of abused women.
TL;DR: This paper investigates the comprehensive compassionate care reform programme within the National Health Service (NHS) in England and shows how 'compassion' is introduced as an overarching meta-virtue designed to govern relationships and formal positions in health care.
Abstract: This paper investigates the comprehensive compassionate care reform programme within the National Health Service (NHS) in England. Through a synoptic reading of policy documents, we show how 'compassion' is introduced as an overarching meta-virtue designed to govern relationships and formal positions in health care. Invoking an 'ethics of office' perspective, mainly drawing on the thinking of Max Weber, we evaluate the promotion of compassion as a managerial technology and argue how seemingly humanistic and value-based approaches to healthcare management might have unintended consequences for the quality of care and the conduct of health professionals that in some ways resemble and in some ways exceed those of the more traditional New Public Management measures, which the new compassion paradigm is expected to outdo. In the paper's final sections, we turn to the original work of the nursing icon Florence Nightingale to argue that compassion and other virtues should continuously be formulated and re-formulated in relation to the role-specific skills and duties of particular offices in the healthcare sector.
TL;DR: It is argued that expertise is the emergent outcome of MTBs, which can be conceptualised as networks or 'agencements' of humans and devices.
Abstract: The recent development of cancer precision medicine is associated with the emergence of 'molecular tumour boards' (MTBs). Attended by a heterogenous set of practitioners, MTBs link genomic platforms to clinical practices by establishing 'actionable' connections between drugs and molecular alterations. Their activities rely on a number of evidential resources - for example databases, clinical trial results, basic knowledge about mutations and pathways - that need to be associated with the clinical trajectory of individual patients. Experts from various domains are required to master and align diverse kinds of information. However, rather than examining MTBs as an institution interfacing different kinds of expertise embedded in individual experts, we argue that expertise is the emergent outcome of MTBs, which can be conceptualised as networks or 'agencements' of humans and devices. Based on the ethnographic analysis of the activities of four clinical trial MTBs (three in France and an international one) and of two French routine-care MTBs, the paper analyses how MTBs produce therapeutic decisions, centring on the new kind of expertise they engender. The development and activities of MTBs signal a profound transformation of the evidentiary basis and processes upon which biomedical expertise and decision-making in oncology are predicated and, in particular, the emergence of a clinic of variants.
TL;DR: The research reveals that the NPM reforms in Turkey have opened a 'backdoor' through which right-wing populist agendas were supported and the position of the medical profession as an important stakeholder in the institutional settings was weakened.
Abstract: Recent debates on the rise of right-wing or neoliberal populism globally have prompted public health and health systems researchers to explore its implications in the healthcare systems. This case study of Turkey's recent health reform initiative, the Health Transformation Program, aims to contribute to this debate by examining the nexus among populism, professionalism and the contemporary market and managerial reforms, often described as New Public Management (NPM). Building on document analysis and secondary sources, this article introduces a framework to explore whether and how populist agendas grow up in the shadow of NPM policies. We aim to deepen our understanding of the governance settings that might be used in different ways by right-wing populist leaders to advance their agendas. Our research reveals that the NPM reforms in Turkey have opened a 'backdoor' through which right-wing populist agendas were supported and the position of the medical profession as an important stakeholder in the institutional settings was weakened. However, what mattered most in the reform process was not the policies themselves but the ways new managerialist policies were implemented. Our analysis makes blind spots of the NPM reforms and healthcare governance research visible and calls for greater attention to implementation processes.
TL;DR: Assessment of longitudinal ethnographic and interview data collected at a neonatal intensive care unit as it transformed from an open-bay unit, to one with single-patient rooms shows that changing the structure of the NICU interfered with the original local organising culture of collaboration.
Abstract: Recent studies have drawn attention to the relationship between healthcare environments and patient outcomes. Yet, it remains unclear how changes in the design of healthcare facilities are experienced by providers. To understand this relationship, this study employs an inhabited institutionalist theoretical frame to assess longitudinal ethnographic and interview data collected at a neonatal intensive care unit (NICU) as it transformed from an open-bay unit, to one with single-patient rooms. Findings show that changing the structure of the NICU interfered with the original local organisational culture of collaboration. While providers actively worked to maintain the original culture, their success in doing so was mediated by the built environment. Responding to the new space, practitioners developed new practices. Some of the practices (such as doorway discussions and increased individual assessments) directly undermined the original organisational culture, whereas others (hallway hangouts and calling out) worked to transpose the original culture into the new space. These findings call for greater attention to the effect of physical space on organisational culture.
TL;DR: Examining how the effects of intersectoral action are produced and can be attributed to its processes using Actor-Network Theory shows that the transformations in living environments were produced by sequences of a limited number of 'transitory outcomes' that mark the progression of inter sectoral action up to its effects.
Abstract: After 25 years of intersectoral practice to increase health promotion resources, there is little scientific literature linking analysis of processes to observation of effects. Applying Actor-Network Theory, this article examines how the effects of intersectoral action are produced and can be attributed to its processes. A prospective multiple case study (2013-2016) was conducted on Neighbourhood Committees (NCs) in Montreal (Canada). Three NCs were studied using four kinds of data: direct observation notes of meetings and events, documents, logbooks and interviews. Systemic modelling of local intersectoral action was used for data collection and analysis. The results show that the transformations in living environments were produced by sequences of a limited number of 'transitory outcomes' that mark the progression of intersectoral action up to its effects. The list of transitory outcomes identified make up three functions in the production of change: (i) network setup and governance; (ii) self-representing and influencing others; (iii) aligning necessary actors and resources. The production of effects follows a systemic model wherein unique configurations of transitory outcomes, adapted to the different contexts where interactions are occurring, represent the change processes that lead to the effects.
TL;DR: The first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis is utilised to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine.
Abstract: In this collaborative autoethnography, we examine the processes whereby people may reframe their interpretations and understandings of health and illness as a result of new diagnostic information. In so doing, we utilise the first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine. Furthermore, we discuss the ways this case reveals the importance of examining and comparing the social construction and transformation of health and illness within and between different individual and collective lived experiences over time. In closing, we draw out theoretical and empirical implications for understanding transformations in the nature of health and illness over the life course as well as future directions for research investigating shifts in illness management and understanding over time (A virtual abstract of this paper is available to view at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).