In the Journals

In the Journals – May 2019

Here is the journal round-up for May! A very interesting batch of articles this month, including the very timely section in Cultural Anthropology on Reproductive Rights in the Age of Trump and Brexit. Also of note in Social Science & Medicine a Special Issue on Contextualizing Productive Ageing in Asia. Happy reading!

American Ethnologist

“Father released me”: Accelerating care, temporal repair, and ritualized friendship among Pentecostal women in Samoa

Jessica Hardin

In Samoan Pentecostal churches, ritualized friendships among women are an informal but essential relationship through which churches grow. The mentorship that women provide when a new convert is introduced to church life creates escalating forms of care and obligation, as well as an experience of urgency and acceleration. Converts learn how to construct rupture in their narratives and spiritual practices, which are modeled in peer socialization practices. This period of intense yet temporary mentorship creates a temporality of “repair”—embodied, linguistic, and social practices that restore the convert’s identity, which has been disrupted by conversion. This care work compels us to consider the temporalization of care as a future‐making endeavor.

Refusing cesarean sections to protect fertile futures: Somali refugees, motherhood, and precarious migration

Lucy Lowe

While cesarean sections are increasingly used worldwide, Somali refugee women in Kenya are rejecting the operation in attempts to protect their future reproductive capacities. In a context of displacement and insecurity, women’s reproductive bodies can be crucial to their security and strategies for onward migration. Somali women’s resistance to C‐sections mirrors prevalent practices of female circumcision, since they are both perceived by physicians as medically harmful but by women as essential to achieving gendered expectations of marriage and motherhood. The strategic modification and protection of reproductive capacities are situated in multifaceted social and political ruptures, and women’s refusal of surgery is part of a long‐term, future‐oriented pursuit of motherhood and survival.

Separating noise from signal: The ethnomethodological uncanny as aesthetic pleasure in human‐machine interaction in the United States

Eitan Wilf

Because ethnomethodology was founded in cybernetics, it institutionalized the idea that interactants strive to maintain interactional order and compensate for disorder through negative feedback mechanisms such as “repair work.” This idea informed a key strand in the study of human‐machine interaction in the United States, especially the idea that humans are inclined to repair the gaps in machines’ behavior and thus sustain the feeling that they are interacting with intentional entities. In some situations, however, humans prefer to expose and even exacerbate machines’ interactional incompetence. Such a preference manifests the aesthetic category of the uncanny, here theorized as the sudden awareness of the material foundations of one’s immediate world, an awareness that emerges when those foundations become “noisy” and begin to reflexively point to themselves.

Conflictual collaboration: Citizen science and the governance of radioactive contamination after the Fukushima nuclear disaster

Maxime Polleri

In the aftermath of the 2011 Fukushima nuclear disaster, citizen scientists collectively tracked and monitored residual radioactivity in Japan, legitimizing alternative views to an official assessment of the radioactive contamination. But initial practices of resistance have evolved in collaboration with the official Japanese politics of radioactive governance, supporting hegemonic understandings of radiation danger and normative visions of postdisaster recovery. Civic resources used to resist and reinterpret official narratives of contamination end up reinforcing a state‐sponsored normalization of this disaster. Meanwhile, they become crucial techniques of neoliberal governmentality designed to govern the conduct of populations amid contaminated environments.

Cultural Anthropology (Open Access)

Reproductive Politics in the Age of Trump and Brexit / Sarah Franklin, Faye Ginsburg

“I’m building a wall around my uterus”: Abortion Politics and the Politics of Othering in Trump’s America / Elise Andaya

Jane Doe / Risa Cromer

Trump, Race, and Reproduction in the Afterlife of Slavery / Dána-Ain Davis

When the Punishment is Pregnancy: Carceral Restriction of Abortion in the United States / Carolyn Sufrin

Nostalgic Nationalism: How a Discourse of Sacrificial Reproduction Helped Fuel Brexit Britain / Sarah Franklin

Author(iz)ing Death: Medical Aid-in-Dying and the Morality of Suicide

Anita Hadding

In 2017, Oregon marked the twentieth anniversary of enacting the Death with Dignity Act, allowing terminally ill, mentally competent adult patients to end their life by ingesting a lethal medication prescribed by their physician. In U.S. public discourse, medical aid-in-dying is frequently equated with the terminology and morality of suicide, much to the frustration of those who use and administer the law. This article reflects on the stakes of maintaining a distinction between a medically assisted death and the most common cultural category for self-inflicted death—suicide. It uncovers the complicated dialectic between authorship and authorization that characterizes medical assistance in dying and attendant moralities of purposive death, speaking to broader disciplinary concerns in the cultural study of death and medicine. By stressing the primacy of debilitating, life-limiting illness in an aided death and by submitting such a death to the rationale and management of institutionalized medicine, advocates carve out a form of intentional death that occupies a category of its own. The diffusion of agency onto a patient’s fatal illness, medicine, and the state—both discursively and in practice—enhances the moral and social acceptability of an assisted death, which becomes an authorized form of dying that looks very different from the socially deviant act of suicide.

The Afterlife of Gender: Sovereignty, Intimacy and Muslim Funerals of Transgender People in Turkey

Aslı Zengin

Family and sexual/gender difference play significant roles in the organization of Sunni Muslim rituals of death, practices of mourning, and discourses of grief in Turkey. In these ritual practices, family members hold obligations and rights to the deceased, including washing, shrouding, burying, and praying for the body. These funeral practices represent the dead body in strictly gendered ways. However, when the deceased is a transgender person, his/her/their body can open a social field for negotiation and contestation of sexual and gender difference among religious, medico-legal, familial, and LGBTQ actors. Addressing the multiplicity of such struggles and claims over the deceased body of transgender persons, this article presents a mortuary ethnography that is formed through entanglements between Islamic notions of embodiment, familial order, gender and sexuality regimes, and legal regulations around death in Turkey. Rather than taking sex, gender, and sexual difference as given categories, I address them as a social field of constant and emergent contestation, which in turn marks the gendered and sexual limits of belonging in regimes of belief, family, kinship, and citizenship, and in practices of mourning and grief. I argue that death at the thresholds of sexual and gender regimes presents a space to discover novel connections between sovereignty and intimacy and to examine their coconstitution through the registers of violence endured by the gendered/sexed body

Deep in the Brain: Identity and Authenticity in Pediatric Gender Transition

Sahar Sadjadi

Based on an ethnography of clinical practices around gender-nonconforming and transgender children in the United States, this article explores the cultural and scientific notions of identity that shape this field. It examines the practice of diagnosing true gender identity in the clinic and situates the search for the foundation of identity in the inner depths of the self, and in children as harbingers of authenticity, as part of a broader cultural history. It addresses the scientific substantiation of the faith in innateness (“born this way”) and interiority (“from within”) of identity, as well as their political appeal. This article challenges the often taken-for-granted association of science with materialism—and the distribution of matter-idea along the nature–culture axis—by demonstrating the idealism that drives the siting of identity in the brain. Finally, it questions the assumption that it is the appeal of nature and biology that underlies the cultural attachment to entities such as the gene and the brain as locations for the origin of identity in the contemporary United States. Rather than the nature–culture dyad, this article argues that the internal-external dyad more accurately captures and explains this cultural attachment.

Walk This Way: Fitbit and Other Kinds of Walking in Palestine

Anne Meneley

This essay examines how meanings and practices of walking, particularly quantified walking, change according to place. Drawing together my own experience with a wearable computing device called a Fitbit at home and in my field site, East Jerusalem and the occupied West Bank of Palestine, I compare quantified walking and its focus on the self with other forms of walking that highlight place. I examine the relationship between self-monitoring and other-monitoring, especially in relation to walking in Palestine, and I explore how genres of mobility like nature walking or playing Pokémon GO might unfold differently in an occupied territory where the right to move is highly contested. I also explore Palestinian genres of walking, including the wander (sarha). In Palestine, walking becomes an important means not for pursuing personal health, but for cultivating a wider health of the land and knowledge of the nurturing relationship between land and the people who walk across it. Such practices of walking with or walking together can, I conclude, function as forms of kinwork.

Health & Place

Determining the health benefits of green space: Does gentrification matter?

Helen V.S. Cole, Margarita Triguero-Mas, James J.T. Connolly, Isabelle Anguelovski

Urban green space is demonstrated to benefit human health. We evaluated whether neighborhood gentrification status matters when considering the health benefits of green space, and whether the benefits are received equitably across racial and socioeconomic groups. Greater exposure to active green space was significantly associated with lower odds of reporting fair or poor health, but only for those living in gentrifying neighborhoods. In gentrifying neighborhoods, only those with high education or high incomes benefited from neighborhood active green space. Structural interventions, such as new green space, should be planned and evaluated within the context of urban social inequity and change.

The acute stroke unit as a meaningful space: The lived experience of healthcare practitioners

Kitty Maria Suddick, Vinette Cross, Pirjo Vuoskoski, Graham Stew, Kathleen T. Galvin

This hermeneutic phenomenological study was undertaken in response to the recent re-organization of stroke unit provision in the United Kingdom. Through the analysis of four acute stroke unit practitioners’ subjective accounts, the acute stroke unit emerged as a dynamic, meaningful space, where they experienced authenticity and belonging. The findings showed how these practitioners navigated their way through the space, thriving, and/or surviving its’ associated vulnerabilities. They offer a different gaze on which to attend to the complexity and challenge that is interwoven with health professionals’ flourishing, the spatiality of healthcare practice, and perhaps other demanding places of work.

Back to nature? Attention restoration theory and the restorative effects of nature contact in prison

Dominique Moran

This paper considers the potential for elements of custodial environments to have a restorative effect on those who are incarcerated within them. Considering the applicability and practicality of using Attention Restoration Theory (ART) to frame experience in a custodial context, it interprets results of a survey of prisoners at a large medium-security prison for men in the United Kingdom. It reflects on prisoners’ experiences in relation to elements of the environment in which they reside; specifically, outdoor green spaces and green views in the form of whole-wall photographic images of the natural environment. In an otherwise stressful context, such elements were self-reported to enable restorative effects, and to increase feelings of calm, and the ability to reflect. It finds that the potential benefits differed between environmental elements, and that compatibility with prisoners’ own needs was a key issue. It concludes with suggestions about the potential utility of ART-informed design of custodial landscapes. The paper also reflects on the methodological challenges of using ART to understand the experience of prisoners.

“I try and make my cell a positive place”: Tactics for mitigating risks to health and wellbeing in a young offender institution

Anita Mehay, Rosie Meek, Jane Ogden

Prisons provide an important public health opportunity to improve the health of a hard-to-reach population. However, the prison as a place for health promotion requires greater attention. Using De Certeau’s concept of tactics, semi-structured interviews with 35 young men who had screened as low on an anxiety and depression scale, illustrate how they stitch together discrete tactics to navigate the prison system and mitigate the risks to their health and wellbeing. These involve a process of being vigilant to the cracks in the system whilst appropriating objects and seeking out spaces of comfort. Understanding imprisonment in this nuanced approach provides greater insights into the interplay of health and place with the potential to inform context-relevant practice and policy.

The role of the natural environment in disaster recovery: “We live here because we love the bush”

Karen Block, Robyn Molyneaux, Lisa Gibbs, Nathan Alkemade, … David Forbes

This mixed-methods study explored the role of connection to the natural environment in recovery from the ‘Black Saturday’ bushfires that blazed across Victoria, Australia, in February 2009. Qualitative findings demonstrated that many participants had a strong connection to the natural environment, experienced considerable grief as a result of its devastation in the fires and drew solace from seeing it regenerate over the following months and years. Quantitative analyses indicated that a strong attachment to the environment was associated with reduced psychological distress, fewer symptoms of major depression and fire-related PTSD, and higher levels of resilience, post-traumatic growth and life satisfaction. While social connections are increasingly recognized as supportive of disaster recovery, the influence of landscapes also needs to be recognized in terms of the impact of their destruction as well as their therapeutic potential.

Food play: A novel research methodology for visceral geographers and health researchers

D.L. Burges Watson, S. Lewis, M. Campbell, V. Bryant, … V. De

This paper reinforces the value of visceral geographic approaches to health research as a method ‘beyond talking’. The paper establishes and sets out an integrative embodied multi-sensory research methodology – food play. Researchers across the social sciences and sciences are exploring the limits of logo and researcher centric research methods and exploring peoples sensory experience of themselves and the wider world using participatory, patient-centred, multi-sensory, visceral and biosocial geographic approaches. With reference to the growing interest in visceral approaches to research in geography, and sensory research in neurology, anthropology and embodied cognition in psychology, we argue that the presence and pungency of food uniquely animates research, and for our research, provided highly individualised insight into the lived experience of living long term with eating difficulties, allowing visceral difference to emerge and be expressed. We illustrate our approach with reference to a six-year research project, Resources for Living, co-produced with survivors of head and neck cancer and underpinned by a series of food play workshops to address post-treatment and chronic difficulties with food and eating.

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

Active ageing, emotional care and the threat of stigma: Identity management in older adults using sleeping medication long-term

Georgia Smith, Hannah Farrimond

Amid fears about the medicalisation of old age, the high prevalence of sleeping medication use in older cohorts is a significant public health concern. Long-term use is associated with a plethora of negative effects, such as cognitive impairment and risk of addiction. However, little is known about the lived experience of older adults using sleeping medication longer term. Episodic interviews lasting approximately 90 minutes were conducted with 15 independently living adults, aged 65–88 years, who were using sedative-hypnotic or tricyclic sleeping medication for more than 11 years on average. Thematic analysis shows that participants divided their rationale for use into two temporal periods: (1) to ensure physical ability in the daytime and (2) to ensure emotional stability at night. Long-term sleeping medication was thus characterised as a form of ‘emotional self-management’ of the negative emotions associated with later life, blotting out feelings of loss and loneliness by inducing sleep. Participants feared loss of access to their medication ‘supply’, employing strategies to ensure its continuity, while expressing shame about their dependence. However, identity management, in the form of explanations, minimisations and social comparisons, functioned to downplay their addiction. Through this, long-term sleeping medication users were able to elude the spoiled identities and multiple stigmas of both the ‘out of control’ addict and the unsuccessful older adult by asserting a positive identity; that of the ‘new’ older adult, actively medicating for success both day and night.

The adaptation of everyday practices in the adoption of chronic illness

Kadi Lubi

This article uses social practice theory to examine the role of information-seeking in the maintenance of existing lifestyle and illness-related adjustments in the context of chronic illnesses. The research findings are derived from a thematic analysis of 16 semi-structured in-depth interviews with Estonian Parkinson’s disease patients. The coding scheme bases on the four practice elements outlined by Schatzki (practical understandings, rules, teleological structures and general understandings) and other categories related to chronic illness self-management skills, bodily movements, daily routines and information-seeking practices. The findings reveal that people with chronic illness value maintaining their existing lifestyles as long as possible and the willingness to seek out illness-related information is related to the severity and duration of the disease. These findings suggest that effective illness-related communication that supports self-management should provide patients with possibilities to adjust and switch between practices in a time and a pace that is natural and acceptable to them.

Disease, illness, affliction? Don’t know’: Ambivalence and ambiguity in the narratives of young people about having acne

Abi McNiven

The popular characterisation of acne as a mundane and insignificant feature of adolescence sits at odds with academic studies showing the detrimental impacts of the condition on people of various ages. Drawing from in-depth qualitative interviews with 13- to 25-year olds living in England, this article will consider some of the tensions between two messages about acne through the ambiguities in young people’s narratives. Consistent with existing literature on skin conditions and visual differences more broadly, participants in the study recounted ways in which acne negatively shaped their lives socially and emotionally. However, there were topics around which participants’ accounts held nuances and complications, in relation to: understandings held about acne causes; uncertainty as to whether acne was a medical concern/problem; and comparisons to other people’s acne or broader health experiences. In attending to these aspects, this article will explore how different and potentially conflicting meanings are negotiated by young people, producing ambiguous and ambivalent experiential accounts about living with acne.

‘The expertness of his healer’: Diagnosis, disclosure and the power of a profession

Annemarie Jutel

Diagnosis is one of medicine’s most important tools. It structures the relationship between patient and diagnostician, organises illness and provides access to resources. In this article, I reveal how the manner in which a serious diagnosis is revealed creates a kind of ‘epistemic posture’ reinforcing the power of medical knowledge, and contributing to medical authority. To achieve this, I explore historical material written by and for doctors about the disclosure of difficult diagnoses. Using historical data for sociological purposes follows Zerubavel, who asserts that phenomena should be studied across eras, media and cultures. I have chosen to focus on how diagnostic disclosure, as described by mid-19th to mid-20th century doctors, serves to promote the profession of medicine. The means of revealing a diagnosis served as a demonstration of, and a means for deflecting threats to, medicine’s esoteric nature. The historical data provide a novel approach for understanding how diagnosis operates, even today, to confirm the professional status of the doctor.

Smoking to fit a stigmatised identity? A qualitative study of marginalised young people in Australia

Marita Hefler,  Stacy M Carter

In countries with comprehensive tobacco control, smoking is increasingly denormalised, with smokers subject to social stigmatisation. Qualitative research and commentary about denormalisation and stigma has largely focused on the impact on current or former smokers. Little attention has been given to the interaction between existing stigma among socially marginalised and disadvantaged young people and its role in smoking uptake, maintenance and resistance to quitting, or remaining a non-smoker. This article draws on a qualitative (grounded theory) study of young people aged 16–25 years who attended social services for at-risk youth in an inner city area in Australia, to explore the intersection between stigmatised identity and smoking in a context of increasing smoking denormalisation. Drawing on theoretical conceptualisations of stigma, we outline processes by which participants accept and apply social labels, internalise or distance themselves from stigmatised identities, and the influence of labelling on smoking trajectories, to demonstrate how the persistent dilemma of stigma shapes and reinforces smoking behaviour. The study highlights the need for tobacco control initiatives to align and integrate with broader initiatives to address structural inequality and social disadvantage.

Depression at work, authenticity in question: Experiencing, concealing and revealing

Damien Ridge, Alex Broom, Renata Kokanović, Sue Ziebland, Nicholas Hill

Australia and the United Kingdom have introduced policies to protect employees who experience mental illness, including depression. However, a better understanding of the experiential issues workers face (e.g. sense of moral failure) is needed for the provision of appropriate and beneficial support. We analysed 73 interviews from the United Kingdom and Australia where narratives of depression and work intersected. Participants encountered difficulties in being (and performing as if) ‘authentic’ at work, with depression contributing to confusions about the self. The diffuse post-1960s imperative to ‘be yourself’ is experienced in conflicting ways: while some participants sought support from managers and colleagues (e.g. sick leave, back-to-work plans), many others put on a façade in an attempt to perform the ‘well’ and ‘authentic’ employee. We outline the contradictory forces at play for participants when authenticity and visibility are expected, yet, moral imperatives to be good (healthy) employees are normative.

International Journal of Social Psychiatry

The double hazard in recovery journey: The experiences of UK Chinese users of mental health services

Lynn Tang

The recent interest in recovery from mental health problems has not meaningfully addressed the perspectives of ethnic minorities. Aim: To contribute to the discussion of recovery-oriented service with a study on the experience of Chinese people using UK mental health services. Methods: In-depth life history interviews were carried out with the users. The qualitative data were analysed using thematic analysis. Results: Four themes emerged as hindrances to personal recovery: (1) language difficulty creates hurdles, (2) diagnostic label is experienced as a double-edged sword, (3) treatment-related stigma and (dis)empowerment are identified, and (4) grievances are found in hospitalisation. Discussion: Having mental illness and being an ethnic minority in the UK experienced double hazard in their recovery journey. While the deprivation of agency and the stigma process in the health care system hinders their recovery, they are further disadvantaged by their ethnic minority status. Four pointers for service improvement, that apply to Chinese users in the United Kingdom and have general implications for users beyond this group, are proposed.

‘From my point of view, my wife has recovered’: A qualitative investigation of caregivers’ perceptions of recovery and peer support services for people with bipolar disorder in a Chinese community

Winnie WY Yuen, Samson Tse, Greg Murray, Larry Davidson

Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover. Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services. Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis. Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified. Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.

Science, Technology and Human Values

Fairness in the Field: The Ethics of Resource Allocation in Randomized Controlled Field Experiments

Margarita S. Rayzberg

Many in the international development community have embraced the randomized controlled field experiment, akin to a biomedical clinical trial for social interventions, as the new “gold evidential standard” in program impact evaluation. In response, critics have called upon the method’s advocates to consider the moral dimensions of randomization, leading to a debate about the method’s ethics. My research intervenes in this debate by empirically investigating how researchers manage the perception of randomization in the field. Without the possibility of a placebo, researchers rhetorically and materially frame the experiment differently for the control and treatment groups. Three technologies allow for this differential framing: geographic separation, temporal delay, and public randomization ceremonies. Geographic separation is a “technology of opacity” designed to obscure unequal resource distribution by disentangling the intervention and research components of the experiment for the control group. The latter two are technologies of transparency designed to expose the element of randomization but downplay conditions that may affect participant buy in. All three technologies work to preclude collective definitions of fair resource allocation, yet they are not fully successful in preventing modes of confrontation and resistance that lie outside of the experiment’s framing.

Public Health as a Matter of Concern: Victorian England, 1834-1848

Michael Strand

Public health is currently evolving, expanding, and reinforcing itself as a governance project in which health authorities’ concerns meet and blend with epidemiology and civil engineering. Rarely, however, are those concerns found worthy of examination, at least not to account for the multiplying involvements of public health, its ability to find political life in things, and its many translations. The shape of public health is dictated as much by its matters of concern as it is by biopolitical and brute matters of fact. This article presents a genealogy of public health in Victorian England between 1834 and 1848 in order to glimpse the matters of concern around which it stabilized. The political medicine that preceded public health holds the clue in its assertion of life as a form of worth, as prominent a criterion for the assessment of sociomaterial arrangements as profitability or efficiency. This article describes public health as an ensemble presence, a unique gathering, in which political will follows medical diagnosis, and life is worth at least as much as money.

Indigeneity, Science, and Difference: Notes on the Politics of How

John Law, Solveig Joks

This paper explores a colonial controversy: the imposition of state rules to limit salmon fishing in a Scandinavian subarctic river. These rules reflect biological fish population models intended to preserve salmon populations, but this river has also been fished for centuries by indigenous Sámi people who have their own different practices and knowledges of the river and salmon. In theory, the Norwegian state recognizes traditional ecological knowledge and includes this in its biological assessments, but in practice this does not happen, so Sámi fishing practices and the realities that they enact are disappearing. This paper explores how to conceptualize colonial differences in knowing. Drawing on recent anthropology, it asks how(scientific) “settler” and (Sámi) “nomadic” enact worlds and their realities, suggesting that, unlike the latter, the former create a single reality intolerant of alternatives. The focus is thus on a “politics of how” and the ways in which colonial realities and knowledges might intersect less destructively.

Geoengineering Justice: The Role of Recognition

Marion Hourdequin

Global-scale solar geoengineering raises critical ethical questions, including questions of distributive, procedural, and intergenerational justice. Although geoengineering is sometimes framed as a response to injustice, insofar as it might benefit those most vulnerable to climate-related harms, geoengineering also has the potential to exacerbate climate injustice, especially if control of research, governance, and potential plans for deployment remains concentrated in the hands of a few. The scope and scale of solar geoengineering, the diverse concerns it raises, and the lack of consensus surrounding it pose particular challenges for justice. I argue that addressing these challenges requires an inclusive, dialogical approach that takes seriously diverse perspectives, particularly the perspectives of those who are most affected by climate change and those who have had the least voice in decisions surrounding it. The concept of recognition––as developed in the work of Nancy Fraser, David Schlosberg, and others––offers a normative ground for this approach and can help guide the development of institutions and practices directed toward geoengineering justice.

STS, Meet Data Science, Once Again

David Ribes

Science and technology studies (STS) and the emerging field of data science share surprising elective affinities. At the growing intersections of these fields, there will be many opportunities and not a few thorny difficulties for STS scholars. First, I discuss how both fields frame the rollout of data science as a simultaneously social and technical endeavor, even if in distinct ways and for diverging purposes. Second, I discuss the logic of domains in contemporary computer, information, and data science circles. While STS is often agnostic about the borders between the sciences or with industry and state—occasionally taking those boundaries as an object of study—data science takes those boundaries as its target to overcome. These two elective affinities present analytic and practical challenges for STS but also opportunities for engagement. Overall, in addition to these typifications, I urge STS scholars to strategically position themselves to investigate and contribute to the breadth of transformations that seek to touch virtually every science and newly bind spheres of academy, industry, and state.

In Search of a Problem: Mapping Controversies over NHS (England) Patient Data with Digital Tools

David Moats, Liz McFall

There is a long history in science and technology studies (STS) of tracking problematic objects, such as controversies, matters of concern, and issues, using various digital tools. But what happens when public problems do not play out in these familiar ways? In this paper, we will think through the methodological implications of studying “problems” in relation to recent events surrounding the sharing of patient data in the National Health Service in the United Kingdom. When a data sharing agreement called was announced in 2013, nearly 1.5 million citizens chose to opt out. Yet, in subsequent years, there has been little evidence of a robust public mobilising around data sharing. We will attempt to track this elusive ‘non problem’ using some digital tools developed in STS for the purpose of mapping issues and problem definitions within science. Although we find these digital tools are unable to capture the “problem,” the process of searching helps us map the terrain of the case and forces us to consider wider definitions.

Selling Smartness: Corporate Narratives and the Smart City as a Sociotechnical Imaginary

Jathan Sadowski, Roy Bendor

This article argues for engaging with the smart city as a sociotechnical imaginary. By conducting a close reading of primary source material produced by the companies IBM and Cisco over a decade of work on smart urbanism, we argue that the smart city imaginary is premised in a particular narrative about urban crises and technological salvation. This narrative serves three main purposes: (1) it fits different ideas and initiatives into a coherent view of smart urbanism, (2) it sells and disseminates this version of smartness, and (3) it crowds out alternative visions and corresponding arrangements of smart urbanism. Furthermore, we argue that IBM and Cisco construct smart urbanism as both a reactionary and visionary force, plotting a model of the near future, but one that largely reflects and reinforces existing sociopolitical systems. We conclude by suggesting that breaking IBM’s and Cisco’s discursive dominance over the smart city imaginary requires us to reimagine what smart urbanism means and create counter-narratives that open up space for alternative values, designs, and models.

Social Science & Medicine

“For how long are we going to take the tablets?” Kenyan stakeholders’ views on priority investments to sustainably tackle soil-transmitted helminths

Mishal S. Khan, Rachel Pullan, George Okello, Mary Nyikuri, … Dina Balabanova

Recent global commitments to shift responsibility for Neglected Tropical Disease (NTD) control to affected countries reflect a renewed emphasis on sustainability, away from aid-dependency. This calls for a better understanding of how domestic stakeholders perceive investments in different strategies for NTD control. Soil transmitted helminths (STH) are among the NTDs targeted for elimination as a public health problem by international agencies through mass drug administration, provided periodically to at-risk population groups, often using drugs donated by pharmaceutical companies. This study was conducted in Kenya at a time when responsibilities for long running STH programmes were transitioning from external to national and sub-national agencies. Following an initial assessment in which we identified key domestic stakeholders and reviewed relevant scientific and government documents, the perspectives of stakeholders working in health, education, community engagement and sanitation were investigated through semi-structured interviews with national level policymakers, county level policymakers, and frontline implementers in one high-STH burden county, Kwale. Our conceptual framework on sustainability traced a progression in thinking, from ensuring financial stability through the technical ability to adapt to changing circumstances, and ultimately to a situation where a programme is prioritised by domestic policymakers because empowered communities demand it. It was clear from our interviews that most Kenyan stakeholders sought to be at the final stage in this progression. Interviewees criticised long-term investment in mass drug administration, the approach favoured predominantly by external agencies, for failing to address underlying causes of STH. Instead they identified three synergistic priority areas for investment: changes in institutional structures and culture to reduce working in silos; building community demand and ownership; and increased policymaker engagement on underlying socioeconomic and environmental causes of STH. Although challenging to implement, the shift in responsibility from external agencies to domestic stakeholders may lead to emergence of new strategic directions.

Towards Universal Health Coverage in Ethiopia’s ‘developmental state’? The political drivers of health insurance

Tom Lavers

With Universal Health Coverage (UHC) now entrenched among the top global development priorities, questions arise as to the conditions under which politicians commit to UHC and why certain strategies for health financing and access are favoured over others. The Ethiopian government has been piloting and scaling-up Community-Based Health Insurance (CBHI) for the informal sector since 2010 and is establishing Social Health Insurance for formal sector workers as a means of achieving UHC. CBHI covers 11 million people making it one of the largest health insurance schemes in Africa. This paper employs a process tracing methodology to examine the political drivers of the adoption and evolution of state health insurance based on 28 key informant interviews conducted between 2015 and 2018 with politicians, policymakers and donor officials. The paper highlights the inadequacy of existing theories—focusing on interest group mobilisation, electoral competition and bureaucratic actors—for explaining the Ethiopian case. Instead the paper proposes an ‘Adapted Political Settlements’ framework that explains the state’s push to expand CBHI and stalled progress on SHI. This framework highlights the interests and ideas of the ruling coalition as important drivers of reform. In a context of ruling party dominance and minimal threat from electoral competition, the ruling coalition has sought to build political legitimacy through the delivery of socioeconomic progress, including health services. The policy idea of health insurance, meanwhile, has secured elite commitment due to its fit with deeply held ideas within the ruling coalition concerning the importance of self-reliance and resource mobilisation for development. Finally, the centralisation of power within the ruling coalition prior to 2012 enabled the emergence of a long-term developmental vision and the marginalisation of opposition to health insurance, while fragmentation of the ruling coalition since 2012 has led SHI to stall.

Sex work-related stigma: Experiential, symbolic and structural forms in the health systems of Delhi, India

Martha S. Ryan, Devaki Nambiar, Laura Ferguson

Sex work-related stigma is prevalent in urban India. While HIV-stigma is often discussed in urban Indian health contexts, rarely is sex work-related stigma investigated as it shapes sex workers’ health experiences. This paper discusses the findings of an ethnographic study with women who practice sex work (WPSW), healthcare providers, and NGO workers in Delhi, India over seven months in 2017. We apply a tri-tiered model of stigma as constituted of experiential, symbolic, and structural forms, to better understand how WPSW experience sex work-related stigma as it relates to their health. Identifying and understanding manifestations and experiences of stigma is crucial to supporting WPSW health. We conclude that in the face of criminalized legal contexts, both non-governmental and governmental interventions to improve WPSW’s health must contend with their own tendencies to reinforce prevailing stereotypes and symbols that stigmatize sex work and the people who engage in it.

Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan

Zainab Afshan Sheikh, Anja M.B. Jensen

The Pakistani population has become particularly interesting for international genetic research due to its high rates of consanguinity. Based on 5 months fieldwork in Faisalabad among Pakistani genetic researchers from December 2015–January 2016 and February–April 2017 and interviews with 36 families and 14 researchers, this article focuses on research encounters. It demonstrates how genetic research figures in the lives of families affected by genetic medical conditions in light of their everyday struggles with disease, and considers their perspectives on destiny and hope. Through examining the potentials of the research encounter, we ask how research becomes meaningful in the lives of Pakistani families affected by genetic disease: how these families and individuals enable different modes of sharing tragic stories, contemplating hope and contesting logics of consanguinity. International genetic research depends on human raw material. If we wish to understand the precarious lives this research relies on, then the everyday struggles with disease, and the perspectives of families must be methodologically and theoretically engaged.

Don’t look at it as a miracle cure: Contested notions of success and failure in family narratives of pediatric cochlear implantation

Laura Mauldin

Cochlear implants (CIs) are a routine treatment for children identified with a qualifying hearing loss. The CI, however, must be accompanied by a long-term and intense auditory training regimen in order to possibly acquire spoken language with the device. This research investigates families’ experiences when they opted for the CI and undertook the task of auditory training, but the child failed to achieve what might be clinically considered “success” – the ability to function solely using spoken language. Using a science and technology studies informed approach that places the CI within a complex sociotechnical system, this research shows the uncertain trajectory of the CI, as well as the contingency of the very notions of success and failure. To do so, data from in-depth interviews with a diverse sample of parents (n = 11) were collected. Results show the shifting definitions of failure and success within families, as well as suggest areas for further exploration regarding clinical practice and pediatric CIs. First, professionals’ messaging often conveyed to parents a belief in the infallibility of the CI, this potentially caused “soft failure” to go undetected and unmitigated. Second, speech assessments used in clinical measurements of outcomes did not capture a holistic understanding of a child’s identity and social integration, leaving out an important component for consideration of what a ‘good outcome’ is. Third, minority parents experience structural racism and clinical attitudes that may render “failure” more likely to be identified and expected in these children, an individualizing process that allows structural failures to go uncritiqued.

“Wasting away”: Diabetes, food insecurity, and medical insecurity in the Somali Region of Ethiopia

Lauren Carruth, Emily Mendenhall

Most research on diabetes has taken place in cities or in high-income countries, even though most diabetes deaths occur in low and middle-income countries, and diabetes disproportionately affects the poor. This research, by contrast, investigates rising concerns about diabetes among Somalis in eastern Ethiopia–in communities where obesity is rare and people face chronic food insecurity, forced displacement, recurrent humanitarian crises, and lack of access to medical care. Findings presented in this article build on ethnographic research with Somalis in eastern Ethiopia since 2007, and include anthropometric and demographic data collection with Somali diabetes patients and select adult siblings of these patients (n = 108) plus in-depth ethnographic interviews with a subset of the diabetes patients, their siblings, and medical providers serving Somali communities (n = 29) in July–August 2018. Most Somali patients we spoke with shared symptoms of progressive weight loss, weakness, and loss of teeth–or what people called “wasting away”–even when complying with prescribed pharmaceutical regimens and/or insulin. Diabetes and “wasting away” were characterized by Somalis as humoral pathologies; but rather than a consequence of obesity or pathological weight gain, these were perceived to be a consequence of stress, trauma, anger, displacement, loss of healthy fatness, and lack of access to fresh and healthy food over their lifetimes. Somalis’ simultaneous experiences of progressive nutritional wasting and adult-onset diabetes echo how “tropical diabetes” was defined and experienced for thousands of years prior to the development of effective early diagnostics and biomedical treatments. This analysis therefore suggests heterogeneity and overlaps within and between categories of “type 1” and “type 2 diabetes” in populations with differential exposures to stress, crisis, and poverty. Exposures to food insecurity and medical insecurity, in particular, are pathogenic, and shape diabetes patients’ clinical presentations and prognoses, as well as local etiologies and patterns of disease.

A comparative ethnography of nutrition interventions: Structural violence and the industrialisation of agrifood systems in the Caribbean and the Pacific

Marisa Wilson, Amy McLennan

Public health interventions that involve strategies to re-localise food fail in part because they pay insufficient attention to the global history of industrial food and agriculture. In this paper we use the method of comparative ethnography and the concept of structural violence to illustrate how historical and geographical patterns related to colonialism and industrialisation (e.g. agrarian change, power relations and tradedependencies) hinder efforts to address diet-related non-communicable diseases on two small islands. We find comparative ethnography provides a useful framework for cross-country analysis of public health programmes that can complement quantitative analysis. At the same time, the concept of structural violenceenables us to make sense of qualitative material and link the failure of such programmes to wider historical and geographical processes. We use ethnographic research carried out from April to August 2013 and from June to July 2014 in Trinidad (with follow-up online interviews in 2018) and in Nauru from February to May 2010 and August 2010 to February 2011. Our island case studies share commonalities that point to similar experiences of colonialism and industrialisation and comparable health-related challenges faced in everyday life.

Traumatic landscapes: Two geographies of addiction

Jesse Proudfoot

The confluence of the contemporary opioid crisis and the Great Recession has renewed interest in theories of addiction that can account for the relationship between individual symptoms and large-scale socio-political forces. Gesler’s (1992) theory of ‘therapeutic landscapes’ examines the ways that social, political, and cultural forces, embedded in place, contribute to health and wellbeing. This article considers the inverse of the therapeutic landscape: the traumatic landscape that harms its inhabitants, proposing it as one way of understanding how addiction is related to place. I draw on research in health geography, medical anthropology, and critical psychology to develop a novel theorization of the relationship between place, trauma, and addiction. Drawing on eighteen months of ethnographic fieldwork with drug users exiting the prison system in Chicago, Illinois, the article considers the life histories of two men whose addictions to drugs and alcohol are profoundly related to place. Through close readings of these cases, I develop two readings of addiction-in-place, one in which addiction is the result of environmental stresses that produce a need to use drugs as a form of self-medication, and another in which the landscape acts as a container for histories of trauma and produces an addiction resembling a psychoanalytic symptom, expressed in self-destructive acts. Finally, through my use of the case history method, I contribute to methodological debates about how to research experiences of place and health, arguing that close attention to lived experience is necessary to draw links between macro-level arguments about structural violence and the subjective experience of trauma that lies at the heart of addiction.

The politics of institutionalizing preventive health

John Boswell, Paul Cairney, Emily St Denny

Prevention is an attractive idea to policymakers in theory, particularly in health where the burden of spending and care is increasingly taken up by complex and chronic conditions associated with lifestyle choices. However, prevention in general, and preventive health in particular, has proven hard to implement in practice. In this paper, we look to one tangible legacy of the recent rise of the prevention agenda: agencies with responsibility for preventive health policy. We ask how this form of institutionalizing preventive health happens in practice, and what consequences it has for the advancement of the prevention agenda. We draw on qualitative data to compare the trajectories of newly formed agencies in Australia, New Zealand and England. We find that building and maintaining legitimacy for such agencies may come at the expense of quick progress or radical action in service of the prevention agenda.

Structuring times and activities in the oncology visit

Laura Sterponi, Cristina Zucchermaglio, Marilena Fatigante, Francesca Alby

In this paper we examine how doctor and patient coordinate actions in interaction towards the smooth accomplishment of the medical visit. Such coordination entails primarily the management of time and praxis, i.e. the apportionment of time to the tasks to be completed during the visit; and it is not an easy enterprise, for a number of reasons: 1) the tasks to be carried out during the visit are not familiar in equal measure to doctor and patient; 2) the extent of attention to be devoted to each task cannot be fully determined in advance but requires ongoing judgment and calibration; 3) generally, the timeframe of the visit is relatively limited. Our ethnographic and conversation analytic study of oncological visits shows that doctor and patient rely on a range of semiotic resources to achieve mutual understanding and coordinated actions. In particular, our analysis has identified textual artifacts and metapragmatic utterances as key semiotic components in the coordination and negotiation of the temporal trajectories and courses of actions that constitute and traverse the oncology visit.

The diagnostic moment: A study in US primary care

John Heritage, Amanda McArthur

This paper conceptualizes the act of diagnosis in primary care as a ‘diagnostic moment,’ comprising a diagnostic utterance in a ‘diagnostic slot,’ together with a patient response. Using a dataset of 201 treated conditions drawn from 255 video recorded medical visits with 71 physicians across 33 clinical practices in the Western United States, we investigate the incidence of diagnostic moments, aspects of their verbal design, and patient responsiveness. We find that only 53% of treated conditions in the dataset are associated with a diagnostic moment. Physicians present 66% of these diagnoses as hedged or otherwise doubtful, and deliver 30% of them without gazing at the patient. In the context of these diagnostic moments, patients are non- or minimally responsive 59% of the time. These findings underscore the different significance that may be accorded diagnosis in primary care in contrast to care in other medical contexts. The paper concludes that the analysis of sequences of action which empirically realize diagnosis are underrepresented in the sociology of diagnosis, and that better understanding of the diagnostic moment would enhance our understanding of diagnostic processes in primary care.

Sociology of Health and Illness

The thing-power of the human-app health assemblage: thinking with vital materialism

Deborah Lupton

Hundreds of thousands of apps are now available that have been designed to monitor, manage or improve users’ health. In this article, I draw on feminist new materialist perspectives, and particularly the vital materialism offered by Jane Bennett, to consider the affordances, relational connections, affective forces and agential capacities that contribute to the thing-power of the human-app health assemblage. The discussion is underpinned by the assumption that digital technologies such as health apps are part of a more-than-human world, in which they generate forces and capacities only with and through their associations and relations with the humans who create and use them—or in some cases, relinquish or resist their use. To demonstrate how this approach can be applied to the analysis of empirical material, I discuss the findings of several of my recent projects involving people talking about their use of health apps. Drawing on these materials, I show that the vibrancy of the thing-power of the human-app assemblage is a complex admixture of affective forces, personal biographies and life trajectories, human and nonhuman affordances and cultural imaginaries. All of these elements contribute to a greater or lesser degree to the agential capacities generated by this assemblage.

Mental health, subjectivities and forms of neuroscience: a critical realist examination

David Pilgrim

The examination of personal experience in human science has been highly variegated. At one end of a spectrum, strong subjectivists prioritise and privilege personal experience as an authentic marker of being human and as a window into our embedding social contexts. At the other end are neuro-reductionists, who explain (or even explain away) personal experience as merely an epiphenomenon of brain activity. With a focus on mental health and psychiatry, critical realism is used to explore this spectrum and it endorses a view that the brain affords our capacity to think, feel and act as human agents in contingent contexts but cannot ultimately explain any of these.

Navigating the uncertainties of screening: the contribution of social theory

Natalie Armstrong

Screening programmes are social interventions as much as they are medical, and as such they benefit from scrutiny informed by social theory. Screening gives rise to a range of uncertainties and the debates and controversies that result are rarely confined to policy makers and health professionals. Contestations about the science underlying screening are common, and frequently enter the public sphere, engaging with wider societal themes and normative questions. The uncertainties of screening and the need to balance potential benefits against possible harms are often underestimated and underrepresented within these. In this paper, I consider the contribution of social theory to navigating the uncertainties of screening. In doing so, I focus in particular on two relatively recent developments: first, the marked shift, at least in policy terms, towards screening based on an individual’s informed consent, having weighed up the possible harms and benefits; and second, the emerging focus on overdiagnosis and overtreatment. I highlight some important ways in which social theory can add value by helping us gain analytical purchase on these issues.

The cultural hegemony of chronic disease association discourse in Canada

Dennis Raphael, Claudia Chaufan, Toba Bryant, Morouj Bakhsh, Jessica Bindra, Allan Puran, Daniel Saliba

In this paper, we explore how corporate domination of two major disease associations in Canada, Heart and Stroke Canada (HSC) and Diabetes Canada (DC), as manifested in membership of their boards of directors may be acting with biomedical complicity to create hegemonic discourse on the nature of cardiovascular disease (CVD) and type 2 diabetes mellitus (T2DM). This is problematic as the activities that derive from this discourse thwart public policy action to address the primary causes and means of managing chronic disease: Canadians’ living and working conditions. Through critical analysis of the membership of HSC and DC boards of directors, we link their corporate and biomedical backgrounds with the limiting of chronic disease association messaging to narrow discredited behavioural approaches. We also draw attention to other means by which the corporate sector is able to shape disease association discourse on the causes and means of managing chronic disease. To rectify this, we call for membership of these boards to include those knowledgeable with broader understandings of health and those most likely to suffer CVD and T2DM: the poor, excluded, and marginalised. Since we recognise these associations will not voluntarily undertake these actions, we present means to force this shift.

Prestige hierarchies of diseases and specialities in a field perspective

Anette Lykke Hindhede, Kristian Larsen

Previous research from Norway on the prestige ranking of medical specialities shows that physicians rank specialities as well as diseases according to social prestige. The aim of this study was to theoretically supplement the Goffman-inspired studies by use of a Bourdieuian field perspective. This study’s relevance is its contribution to a theoretical understanding of stability and change in regard to prestige rankings, as well as social and symbolic acceptance linked to a disease. The paper presents key concepts and offers precision on the theoretical development. Theoretically, the paper suggests that a number of subfields create a complex network that connects and stabilises the field (subfields of institutions, subfields of professions, subfields of diseases, subfields of technology, etc.). Each of them operates with relative autonomy within a broader medical field, and as such they constitute a structural homology. With reference to both Album and Bourdieu, the paper suggests that while a disease can achieve a higher prestige through its association with a new medical technology, its triumphs in the internal struggles with its rivals are limited, since it is still part of a complex network linked with logics from other subfields which regulate its rise and fall in the overall prestige hierarchy. Stability is built (in relations) within medical institutions, medical professions and diseases.

Bricolage as conceptual tool for understanding access to healthcare in superdiverse populations

Jenny Phillimore, Hannah Bradby, Michi Knecht, Beatriz Padilla, Simon Pemberton

This paper applies, for the first time, the concept of bricolage to understand the experiences of superdiverse urban populations and their practices of improvisation in accessing health services across healthcare ecosystems. By adopting the concept of healthcare bricolage and an ecosystem approach, we render visible the agency of individuals as they creatively mobilise, utilise, and re-use resources in the face of constraints on access to healthcare services. Such resources include multiple knowledges, ideas, materials, and networks. The concept of bricolage is particularly useful given that superdiverse populations are by definition heterogeneous, multilingual and transnational, and frequently in localities characterised as ‘resource-poor’, in which bricolage may be necessary to overcome such constraints, and where mainstream healthcare providers have limited understanding of the challenges that populations experience in accessing services. The ‘politics of bricolage’ as neoliberal strategies of self-empowerment legitimising the withdrawal of the welfare state are critically discussed. Conflicting aspects of bricolage are made explicit in setting out tactics of relevance to researching the practices of bricolage.

Stress, domination and basic income: considering a citizens’ entitlement response to a public health crisis

Matthew Thomas Johnson, Elliott Johnson

In 2015/16, stress was found psychologically to be responsible for 37% of all work-related illnesses and 45% of all working days lost due to illness in Great Britain. Stress has also been linked to long-term chronic health conditions—including heart disease, stroke, cancer, type 2 diabetes, arthritis and depression—responsible for 70% of NHS England spend, 50% of GP appointments, 64% of outpatient appointments and 70% of inpatient bed days. It is apparent that medical responses to stress-related illness contribute to the NHS funding crisis without resolving underlying causes. It is necessary to address the social bases of this public healthissue. We argue that one of the primary causes of stress stems from a basic assumption of modern economics: that hierarchies are essential to organizational success. We argue that the combination of hierarchy and possibility of destitution inflicts domination on individuals. We then consider the potential contribution of universal basic income (UBI) to dealing causally with this public health problem. This marks a new development in both the public health and UBI literature studies. We conclude that future trials and studies of UBI ought to measure physiological effects on stress as part of a holistic evaluation of the policy.

Therapeutic citizens and clients: diverging healthcare practices in Malawi’s prenatal clinics

Amy Zhou

This article examines how HIV policies and the funding priorities of global institutions affect practices in prenatal clinics and the quality of healthcare women receive. Data consist of observations at health centres in Lilongwe, Malawi and interviews with providers (N = 37). I argue that neoliberal ideology, which structures the global health field, produces a fragmented healthcare system on the ground. Findings show two kinds of healthcare practices within the same clinic: donor‐funded NGOs took on HIV services while government providers focused on prenatal care. NGO practices were defined by surveillance, where providers targeted pregnant HIV‐positive women and intensively monitored their adherence to drug treatment. In contrast, state‐led practices were defined by rationing. Government providers worked with all pregnant women, but with staff and resource shortages, they limited time and services for each patient in order to serve everyone. This paper builds on concepts of therapeutic citizenship and clientship by exploring how global health priorities produce different conditions, practices and outcomes of NGO and state‐led care.

‘It has to become true genetics’: tumour genetics and the division of diagnostic labour in the clinic

Claire Beaudevin, Ashveen Peerbaye, Catherine Bourgain

Tumour genetics is currently turning into a massive clinical approach. This paper is an enquiry into its practices as they expand beyond expert and experimental contexts and become routinised in clinical hospital settings. Studying a French university hospital, we unpack the content and everyday organization of diagnostic labour in this context. Exploring the sociotechnical frictions that arise in the process, we describe the ways in which they are collectively controlled, and stabilized through organizational fictions, that are instrumental in making tumour genetics doable in the hospital, at a large scale. We further show that the new role of external regulations in the production of clinical values for mutations has a strong impact on diagnostic work, making it possible to be performed locally without resorting to expert bioclinical collectives, and outside the professional jurisdiction of clinical geneticists. This division of labour appears as a necessary condition for the rise in clinical productivity required by a new function assigned to genetics: to guide the prescription of drugs for common diseases. This turn in the way genetics is embedded in the clinic calls for a thorough reassessment of its impacts on clinical discourses, practices and decisions.

‘I didn’t want to pass that on to my child, being afraid to go to the dentist’: making sense of oral health through narratives of connectedness over the life course

Jennifer Emily Kettle, Lorna Warren, Peter Glenn Robinson, Angus Walls, Barry John Gibson

While previous sociological research on oral health has identified the relevance of personal relationships, there is more scope to analyse the mouth through a lens of connectedness. Recent qualitative interviews with 43 older people (65+) in England and Scotland found that participants constructed relational narratives to make sense of their oral health practices. By drawing on ideas of family practices, family display and personal life, we illustrate how the mouth can be understood relationally. Participants presented their own embodied experiences as connected to the actions of their parents. Narratives also reflected how, as parents and grandparents themselves, participants tried to shape the experiences of others. In this way, oral health practices were conceptualised as being about family. This can be seen in self‐narratives that demonstrated how participants located themselves as embedded in webs of ongoing relationships. We highlight the importance of narrated practices of thinking and feeling, whereby participants imagined doing oral health, and indeed family, in different ways. We thereby demonstrate how oral health practices are constituted through family connectedness and at the same time how these practices contribute to the constitution of family. Policy should therefore pay attention to family relations when promoting improvements in oral health practices.

Isolation or interaction: healthcare provider experience of design change

Jane S. VanHeuvelen

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.

Patients’ autonomy as a negotiated order: an ethnographic perspective on the clinical management of childhood obesity

Andrea Giovanni Lutz

The principle of patients’ autonomy has assumed a central place in healthcare. Patients are encouraged to play an active role in the management of their health, especially when they are affected by chronic illnesses that require long‐term follow‐up. In this article, we analyse patients’ and professionals’ conceptions of patients’ autonomy in the context of childhood obesity management. Based on the results of an ethnographic study that we conducted within a paediatric hospital in French‐speaking Switzerland, we put into perspective the discourses that professionals, parents and children construct around their experiences of the therapy. Our study reveals that the conceptions that these three different actors have of patients’ autonomy converge on several points, but they also diverge on many others. While the rise of autonomy in healthcare has mostly been analysed as a form of empowerment of patients, our results show that this principle also introduces new forms of social control over patients’ lives, and it creates new tensions for patients who are unable to match with the normative expectations of professionals in terms of self‐management and self‐care.

Managing food insecurity through informal networks of care: an ethnography of youth practices in the North of England

Louise Laverty

Food insecurity in the UK is a pressing concern that is associated with poor health outcomes. Research to date has focused on the challenges for adults in providing food for families. However, there is little evidence showing how children and young people experience food insecurity, particularly outside of the home and school. This paper, drawing on 14 months of ethnography in a youth club in the North of England, explores how young people manage food insecurity. In this youth club, the circulation of takeaway food is part of an informal network where boys purchase, share and receive food. This practice allows the boys to participate meaningfully within their peer groups whilst also providing stable access to food. This peer practice, however, was not available to everyone. This was a gendered practice that for the girls held little benefit due to their concerns about eating and pressure to provide for others. Instead, some girls depend on romantic relationships for food provision that is equated with affection and care. The findings will be discussed through a ‘materialities of care’ perspective to explore the complex ways in which food as a practice of care is part of everyday routines embedded within local places.

Making the subjects of mental health care: a cross‐cultural comparison of mental health policy in Hong Kong, China and New South Wales, Australia

Jialiang Cui, Kari Lancaster, Christy E. Newman

This article focuses on two different ways of framing and taming the uncertainties of the human papillomavirus (HPV) vaccine in the context of the Finnish welfare state: the bio‐medical rationale of population‐level cancer reduction based on epidemiological assessments, and the meaning formation of Finnish vaccination‐aged girls. Epidemiologists run analyses estimating the cost‐effectiveness and public health benefit of vaccinations, while the adolescent girls face the burdensome choice of whether to undergo vaccination. The processes of framing the complexities and actively taming them are analysed utilising a cultural‐sociological framework. Firstly, the taming work of the epidemiologists is examined by focusing on the creation of the vaccination campaign. The aetiological complexities between some HPV types and cervical cancer are tamed into a clear campaign message of vaccination as a scientifically proven protection against deadly cancer. Secondly, the girls’ own ways of framing the complexities of the HPV vaccine and taming the decision whether to undergo vaccination or not are analysed based on their comments in an Internet discussion forum. Finally, the framings and tamings of both sites are discussed together, and some interesting continuities and disjunctions between the two are revealed.

Neither magic bullet nor a mere tool: negotiating multiple logics of the checklist in healthcare quality improvement

David Kocman, Tereza Stöckelová,  Rupert Pearse, Graham Martin

Over two decades, the checklist has risen to prominence in healthcare improvement. This paper contributes to the debate between its proponents and critics, making the case for an Science and Technology Studies‐informed understanding of the checklist that demonstrates the limitations of both the “checklist‐as‐panacea” and “checklist‐as‐socially‐determined” positions. Attending to the checklist as a socio‐material object endowed with affordances that call upon clinicians to act (Allen 2012, Hutchby 2001), the study revisits the efforts of a recent improvement initiative, the Enhanced Peri‐Operative Care for High‐risk patients trial. Rather than a singularised simple tool, this study discusses four different and relationally enacted logics of the checklist as a stop and check tool, a clinical prompt, an audit tool and a clinical record. Each logic is associated with specific temporality, beneficiaries, relationship with material forms, and interpellates (Law 2002) clinicians to initiate specific actions which can conflict. The paper seeks to make the case for intervention to improve such tools and consciously account for the consequences of their design and materiality and calls for supporting such settings and arrangements in which incoherences collected in tools can be locally negotiated.

From ‘holding pen’ to ‘a space to breathe’: affective landscapes in a newly‐integrated sexual health clinic

Sarah Wright

This paper examines the role of affective landscapes in the formation of attendees’ experiences at a re‐provisioned, integrated sexual and reproductive healthcare facility. The ‘One‐Stop Shop’ (OSS) is an example of the organisational shift towards integrated services occurring across the UK, bringing together in one clinic the historically discreet services of genitourinary medicine, HIV medicine and Family Planning. An ethnographically‐informed study of new spaces of care and changed organisation, this paper focuses on the experiences of 29 attendees as they made their way along the clinic’s care pathways. Drawing on concepts of affect and atmosphere to augment the analytic lens of ‘therapeutic landscapes’, this paper demonstrates how various spaces of the clinic influenced attendees’ experiences. A cramped, featureless ‘holding pen’, the foyer served to exacerbate pre‐existing anxieties while creating new fears. The main waiting room, an organisational sorting space, both soothed and aggravated attendees’ concerns. Serving as an architectural feature to connect the old Victorian hospital with the new clinical extension, the atrium was experienced as a space to breathe, with an affective atmosphere that challenged the assumed unpleasantness of sexual health clinics. This paper demonstrates how affective landscapes of the clinic shape attendee experiences in a novel setting.

Health, Risk & Society

Navigating HIV citizenship: identities, risks and biological citizenship in the treatment as prevention era

Ingrid Young, Mark Davis, Paul Flowers & Lisa M. McDaid

The use of HIV Treatment as Prevention (TasP) has radically changed our understandings of HIV risk and revolutionised global HIV prevention policy to focus on the use of pharmaceuticals. Yet, there has been little engagement with the very people expected to comply with a daily pharmaceutical regime. We employ the concept of HIV citizenship to explore responses by people living with HIV in the UK to TasP. We consider how a treatment-based public health strategy has the potential to reshape identities, self-governance and forms of citizenship, domains which play a critical role not only in compliance with new TasP policies, but in how HIV prevention, serodiscordant relationships and (sexual) health are negotiated and enacted. Our findings disrupt the biomedical narrative which claims an end to HIV through scaling up access to treatment. Responses to TasP were framed through shifting negotiations of identity, linked to biomarkers, cure and managing treatment. Toxicity of drugs – and bodies – were seen as something to manage and linked to the shifting possibilities in serodiscordant environments. Finally, a sense of being healthy and responsible, including appropriate use of resources, meant conflicting relationships with if and when to start treatment. Our research highlights how HIV citizenship in the TasP era is negotiated and influenced by intersectional experiences of community, health systems, illness and treatment. Our findings show that the complexities of HIV citizenship and ongoing inequalities, and their biopolitical implications, will intimately shape the implementation and sustainability of TasP.

Lifestyles are risky, too: the social construction of risk and empowerment in prescription drug direct-to-consumer advertisements

Crystal Adams & Brittany M. Harder

In this article, we examine the portrayal of non-drug related health risks and patient empowerment messages in prescription drug advertising. Little is known about the social construction of non-drug related risks in direct-to-consumer advertisements. In addition, research has failed to investigate to what extent, and how, prescription drug ads use risk messages to construct understandings of empowered medicated patients. To fill these gaps in research, we conducted a content analysis of 136 US prescription drug advertisements that aired on television from 2014–2015. Drawing on the reflexive modernisation framework, we find that ads go beyond disclosing the risks associated with taking the promoted drug by emphasising the risks associated with not taking the prescribed drug. Ads empower patients in two distinct ways, through ‘health empowerment’ and ‘lifestyle empowerment’. These forms of empowerment are portrayed as natural responses to health and lifestyle risks. We also describe two types of ads: medical need and lifestyle ads. The former emphasises health empowerment, and the latter exhibits strong themes of lifestyle empowerment. We extend the findings of previous research by pinpointing how drug companies use risk messages as a strategy to motivate, rather than deter, audiences to learn more about a promoted treatment and by identifying the different marketing strategies used in prescription drug ads based on the lifestyle status of a drug. Our research provides a clearer understanding of the relationship between the presentation of health risks and reflexive modernisation, patient empowerment, and health lifestyles in the risk society.

Health risk perception and shale development in the UK and US

Barbara Herr Harthorn, Laura Halcomb, Tristan Partridge, Merryn Thomas, Catherine Enders & Nick Pidgeon

In this paper, we examine discourse in public deliberations in pre-development locales in the UK and US about advantages and disadvantages of future shale development (‘fracking’). We aimed to understand how people anticipate potential health effects, broadly construed, of environmental toxicity and disturbance in the context of planned, but not yet implemented, energy development. In day-long deliberations with small, diverse groups in two cities in each country (London, Cardiff in the UK; Los Angeles, Santa Barbara in the US), participants discussed impacts on health and well-being using three main rubrics: ‘It’s money or health’, ‘Why take chances?’ and ‘Beyond the tipping point’. Throughout, participants framed health as an intrinsically moral issue, with collective responsibility as a dominant normative frame. We identify the concept of compound risk to underscore effects of multiple risks and hazards on people’s sensibilities about anticipated future health and environmental harm. The findings demonstrate how and why diverse publics in pre-impact sites in both countries saw shale extraction as high stakes development that poses significant, often unacceptable, risks to human and environmental health and well-being. Risks extended beyond toxicity to broad threats to health, including, for some, the end of life as we know it on the planet. Overall, participants’ discussions of health were more connected to social categories and their underlying moral principles than to technological details. This work contributes evidence of blurred boundaries between environment and health as well as the importance people place on social risks in the context of proposed energy system change.

‘It can’t do any harm’: A qualitative exploration of accounts of participation in preventive health checks

Marie Broholm-Jørgensen, Nina Kamstrup-Larsen, Ann Dorrit Guassora, Susanne Reventlow, Susanne Oksbjerg Dalton & Tine Tjørnhøj-Thomsen

Assessing and managing risk are central to participation in preventive health checks, as the purpose is to identify adverse health behaviours and risk factors. Drawing on the cultural theory of risk, we explore why people without formal education participate in preventive health checks and discuss how this is related to their understandings of risk and health. With this aim, we conducted semi-structured qualitative interviews with people without formal education who participated in the intervention study Check-in. Check-in evaluated the effect of an invitation of people aged 45–64 without formal education beyond lower secondary school (grades 7–9) to a prescheduled preventive health check in general practice. In this way, Check-inprovided the empirical context of this study. Within our analysis we identified four participation styles representing different ways of participating in preventive health checks: 1) selective participation, 2) participation to control uncertainty, 3) feeling an obligation to participate and 4) participation to change the healthcare system. Across the participation styles, we found that participants attended the preventive health check for reasons other than getting help to change their health behaviour and that the accounts of participation were socially embedded. Participants ascribed and assessed risk and health in relation to their immediate network and everyday lives and thereby presented risk perceptions differently from the general preventive messages. From these findings we suggest that preventive health checks should be based on participants’ context-dependent needs.

Why people remain inactive during a crisis: Interpreting and dealing with a crisis within a broader social context

Jarim Kim

Public inactivity has been addressed by scholars across different academic disciplines. Risk communication and behaviour change is difficult and costly due to limited attention to various messages in the public sphere. Crises pose particular challenges if organisations are to communicate effectively with the public to protect them from potential risks. The present study attempts to better understand what makes the public inactive when faced with a crisis. Specifically, I focus on how people perceive a crisis and the reasons they remain inactive during the crisis. Using 28 in-depth interviews with Korean citizens during two food-related crises, this study revealed that people interpreted the crisis within a broader social context, made underlying assumptions in understanding the crisis and believed what the media vividly showed. The findings also showed that people remained inactive because they avoided dealing with risks due to being distracted by their daily lives, they trusted social systems to manage the problem, and they felt they had high efficacy in resolving the crisis although they did not expect to make fundamental changes in the long-run.

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