Medical Anthropology Quarterly
Becoming Institutionalized: Incarceration as a Chronic Health Condition
Johanna T. Crane, Kelsey Pascoe
This article examines incarceration as a chronic condition with social, biological, and psychological elements. We do so through the lens of “institutionalization,” a concept that emerged during interviews conducted with 26 people incarcerated in Washington state prisons as a chronic and often disabling state resulting from prolonged incarceration. We argue that institutionalization helps conceptualize how the social inequities of mass incarceration become embodied as health inequities, and how social harms become physical harms.
Like a Grinding Stone: How Crowdfunding Platforms Create, Perpetuate, and Value Health Inequities (open access)
Nora Kenworthy
This article explores how inequities are reproduced by, and valued within, the increasingly ubiquitous world of medical crowdfunding. As patients use platforms like GoFundMe to solicit donations for health care, success stories inundate social media. But most crowdfunders experience steep odds and marginal benefits. Drawing on the problematic figure of the “black box” in health disparities research and technology studies, I offer ethnography as a tool for unpacking often inscrutable and complex pathways through which online platforms amplify inequities. By leveraging both online and traditional research strategies—a platform analysis and paired narratives of crowdfunders’ disparate experiences, drawn from open-ended interviews—this article explores how inequities are created and experienced by users. The analysis highlights how inequities are simultaneously central to the functioning of this marketplace and occluded by its platform design. Consequently, crowdfunding is concealing health inequities while shifting public values about who is entitled to health care, and why.
Cryopreserving Jewish Motherhood: Egg Freezing in Israel and the United States
Daphna Birenbaum-Carmeli, Marcia C. Inhorn, Mira D. Vale, Pasquale Patrizio
Oocyte cryopreservation (i.e., egg freezing) is one of the newest forms of assisted reproduction and is increasingly being used primarily by two groups of women: (1) young cancer patients at risk of losing their fertility through cytotoxic chemotherapy (i.e., medical egg freezing); and (2) single professionals in their late 30s who are facing age-related fertility decline in the absence of reproductive partners (i.e., elective egg freezing). Based on a binational ethnographic study, this article examines the significance of egg freezing among Jewish women in Israel and the United States. As they face the Jewish maternal imperative, these women are turning to egg freezing to relieve both medical and marital uncertainties. In both secular and religious Jewish contexts, egg freezing is now becoming naturalized as acceptable and desirable precisely because it cryopreserves Jewish motherhood, keeping reproductive options open for Jewish women, and serving as a protective self-preservation technology within their pronatalist social environments.
Decolonizing Care at Diagnosis: Culture, History, and Family at an Urban Inter‐tribal Clinic
Carolyn Smith-Morris, Sylvia Rodriguez, Rose Soto, Morningstar Spencer, Luigi Meneghini
The decolonization framework in medical anthropology is slowly reframing tropes of cultural competency toward decolonizing health care. For decolonization of health care to occur, both colonial histories and continuing postcolonial inequities must be recognized from the first diagnostic moment. We report on qualitative research into the role of culture, history, and family experience in person-specific reactions to receipt of a diagnosis. A collaborative approach at an urban inter-tribal clinic was used to interview patients with a recent (within six months) diagnosis of diabetes or related condition. Interviews revealed ways that the Relocation Act eventuated in isolation, poverty, and diabetes among now-urban Native Americans. We discuss how patients may or may not have the ability to (re)connect with their heritage and may simultaneously perceive only recent family contexts as influential in their diabetes. We conclude by acknowledging how postcolonial harms are not captured in diagnoses but should not be left out of diagnostic discussions.
Taming Time: Configuring Cancer Patients as Research Subjects
Ivana Bogicevic, Mette N. Svendsen
This article explores how incurable cancer patients in the affluent Danish welfare state are recruited to clinical trials. We show that patients’ impending death constitutes their potential for being configured as research subjects. To produce valuable data, patients who enroll in trials and health care professionals must engage in daily “time practices” that prolong the threshold between life and death. When death becomes inevitable, the limit of configuring dying cancer patients as research subjects is reached. Navigating this temporal logic, health care professionals balance the boundary between patients’ instrumental worth as research subjects and their intrinsic worth as dying cancer patients. Whereas previous studies have critically uncovered how clinical trials operate at socioeconomic margins, we point to the ways in which clinical trials operate through temporal margins. We argue that clinical trials are dependent on configuring marginal societal spaces and marginal bodies from which to produce knowledge.
“I Could See Little Bits of How I Progressed”: Coordinating Rhythms in a Midwest Gender‐affirming Health Clinic
Ana-Monica Racila
This article examines how staff and patients worked to reconcile the rhythms of the body with those of gender-normative health care bureaucracy in a U.S. Midwest gender-affirming health clinic. Drawing from observations of clinical appointments and routine bureaucratic practice, as well as debriefing interviews with transgender and gender-expansive patients, this article applies Laura Bear’s theory of “time-maps” and a new materialist approach to bodily agency that recognizes the variability of the body’s responses to gender-affirming health care. This evidence demonstrates how health care staff and patients’ labor practices structured patients’ abilities to embody their plans for medical transition. Anticipating the varied trajectories bodies take during medical transition can interrupt the reproduction of harmful cultural assumptions about sex difference in U.S. health care bureaucracy.
Medical Humanities
An intellectual history of suffering in the Encyclopedia of Bioethics, 1978–2014
Charlotte Duffee
Suffering is an important theme in many bioethical debates, yet little historical research is available to contextualise ideas about it. My article proposes a preliminary intellectual history of suffering in bioethics using the field’s most trusted tertiary work, the four editions of the Encyclopedia of Bioethics (1978–2004), later renamed Bioethics (2014). In the first edition, I find suffering roughly conceptualised as either the negation of a good or as a pain. The former acquired a technical connotation beginning in the second edition, when physician Eric Cassell refined the negative aspects of suffering into a full-fledged theory. Now, suffering no longer marked the loss of just any good but instead threatened one’s purpose in relation to that good. Cassell also strongly distinguished suffering from pain which, when combined with his theory of suffering, hardened earlier distinctions between pain and suffering that were present but weak in the first encyclopedia. Both Cassell’s theory and his strong distinction impacted how other contributors moralised suffering in the later encyclopedias, although his influence was not total: utilitarians continued to moralise suffering in ways that still roughly construed it as pain. Consequently, Cassell and the utilitarians conflicted conceptually. Nevertheless, this tension went unfelt in the encyclopedias for reasons I describe. I close by suggesting areas for further historical research and argue for their relevance to bioethical enquiries into suffering.
New-media arts-based public engagement projects could reshape the future of the generative biology
Diaa Ahmed Mohamed Ahmedien
Research in the sciences of new-media arts aims to develop original research questions and borrows many different interdisciplinary research methodologies that often involve collaboration with professionals from non-art fields to provide real investigations. Over the last four decades, new-media arts provided unlimited strategies to integrate the laypeople into real interactive conversations allowing them to express their opinions and reflect their concerns regarding boundless scientific, environmental, political and ethical issues. Within this context, this article illustrates the parallel and growing attention to perform effective joint public engagement projects between both new-media arts and biological science domains and how biological science could benefit from the new-media arts projects to allow the laypeople to actively participate in decision-making processes regarding critical biological issues that seek more open and democratic biological investigations. This article, therefore, monitors the developments of public engagement as a concept in biological sciences and its practical principles, which they have been enhanced under the influence of today’s new-media arts strategies of engagement. As an extension of the existed efforts, the article, finally, highlighted one of the most recent international conversation led by the author regarding an assumed new-media arts protocol to use stem cells in new-media arts labs and the role of such protocol to secure the highest standard level of public engagement, by which the laypeople could control and reshape the future of generative biology and personalised medicine.
‘From disaster, miracles are wrought’: a narrative analysis of UK media depictions of remote GP consulting in the COVID-19 pandemic using Burke’s pentad (open access)
Gilly Mroz, Chrysanthi Papoutsi, Trisha Greenhalgh
During crises (major events characterised by uncertainty, urgency and threat), society must make sense of rapidly unfolding events. This happens mainly through narrativising—depicting a setting, characters and a meaningful sequence of events and actions unfolding over time. In the early months of the pandemic, UK general practice shifted from face-to-face consultations to a remote-by-default model (telephone, video or e-consultation). This shift was initially widely accepted by press and public, but support waned after a politician declared that the change would be permanent. We invoke Burke’s dramatistic pentad of act, scene, agent, agency and purpose to theorise findings from a detailed analysis of media coverage of the remote-by-default policy and reactions to it. We consider the 12 weeks from March to June 2020 (first lockdown, when remote-by-default services had just been introduced) and 1 week from late July 2020 (following the ministerial announcement). The initial introduction of remote consulting had strong narrative coherence in which all parts of the pentad were balanced: scene (a deadly virus threatening the country) aligned with act (lockdown, including avoiding face-to-face appointments unless essential), agents (the National Health Service and digital technology as heroic macro-actors), agency (general practitioners ‘deployed’) and purpose (to control the pandemic). The later period, however, was characterised by a mismatch between scene (a country emerging from lockdown and resuming normal life), act (imposition of the remote model), agent (a politician known for his enthusiasm for technology), agency (top-down directive) and purpose (modernisation). Whereas media narratives in the first period aligned with the genre of heroic adventure (suggesting a worthy battle, bravely fought), those of the second had characteristics of farce (something both comic and grotesque). We conclude that close reading of media narratives may surface potential misalignments between policy decisions and the context in which they must be implemented.
Disputes regarding the denial of obstetrical care in Catholic hospitals are met by well-worn responses from both Catholic and secular ethicists. Catholic ethicists often focus on fetal personhood while secular actors assert that Catholic care disaffirms the mother’s personhood. However, this debate’s focus on maternal and fetal personhood fails to encompass the divergent attitudes towards obstetrical healthcare. Attitudes towards pain, for example, are ignored. Modern medicine often approaches pain as a medical problem which ought to be treated. Catholic stances towards pain may present it as not wholly negative and, perhaps, constitutive of spiritual growth. Spiritually formative pain is commonly mapped onto obstetrical experiences; narratives of maternal sacrifice are found throughout Catholicism. Interrogating pain works to complicate and, perhaps, delegitimise the argument that Catholic care devalues the pain experience of the woman. Rather, pain is used to affirm the woman’s personhood, facilitating spiritual growth and development.
Infectious thinking: the pathophysiology of 19th-century pedagogy
Jonathan Franklin
Systems for improving public health and organisations for providing national education were two of the great reforming achievements of 19th-century Britain. Despite the overlapping personnel and historical contemporaneity, scholars have rarely considered the two projects in tandem. This essay shows that developments in public health were at the heart of two foundational moments in the rise of 19th-century mass schooling. The originators of the monitorial system, a method of peer-educating working-class children cheaply that dominated British mass schooling at the turn of the 19th century, were deeply invested in the origin and spread of vaccination. Similarly, the first state teacher training system was conceived by a medical doctor in the 1830s, who first rose to prominence investigating cholera in Manchester earlier in the decade. Using archives of school providers, training institutions and the educational state apparatus, I show that medical prophylactic interventions of vaccination and sanitary reform helped galvanise the government into educational reform, by imagining the working class as pathological and providing templates for their palliation. By showing that the roots of the modern school system were deeply imbricated in attempts to combat smallpox and cholera, both in form and in epistemology, this paper argue that critical medical humanists should consider the role of epidemiological thinking in institutions and disciplines which seem, on first sight, removed from the clinic and the lab.
Vivisection through the eyes of Wilkie Collins, HG Wells and John Galsworthy
Jill Felicity Durey
The article argues that, unlike Collins’ adamantly negative view towards vivisection in the latter half of the nineteenth century and approaching the end of his writing career and life, Wells and Galsworthy’s changing opinions responded to medical advances, reflected the dynamics of public opinion, and their own knowledge and experience at their time of writing. With its primary focus on Galsworthy, the study also explores the reactions of contemporary critics, readers, scientists and medical practitioners to these depictions of vivisection. Above all, the article argues that popular writers, particularly before modern multimedia, greatly influenced public attitudes towards changes in society, including medical research by vivisection. The ultimate change of heart towards vivisection by Nobel Prize winner Galsworthy, an indirect and eminent beneficiary of vivisection, the article concludes, would have boosted public acceptance and the cause of modern medicine.
Be still, my beating heart: reading pulselessness from Shakespeare to the artificial heart
Claire Hansen, Michael Charles Stevens
Today, patients with heart failure can be kept alive by an artificial heart while they await a heart transplant. These modern artificial hearts, or left ventricular assist devices (LVADs), remove the patient’s discernible pulse while still maintaining life. This technology contradicts physiological, historical and sociocultural understandings of the pulse as central to human life. In this essay, we consider the ramifications of this contrast between the historical and cultural importance placed on the pulse (especially in relation to our sense of self) and living with a pulseless LVAD. We argue that the pulse’s relationship to individual identity can be rescripted by examining its representation in formative cultural texts like the works of William Shakespeare. Through an integration of historical, literary and biomedical engineering perspectives on the pulse, this paper expands interpretations of pulselessness and advocates for the importance of cultural—as well as biomedical—knowledge to support patients with LVADs and those around them. In reconsidering figurative and literal representations of the heartbeat in the context of technology which removes the need for a pulse, this essay argues that narrative and metaphor can be used to reconceptualise the relationship between the heartbeat and identity.
Person-ness of voices in lived experience accounts of psychosis: combining literary linguistics and clinical psychology
Elena Semino, Zsófia Demjén, Luke Collins
In this paper, we use concepts and insights from the literary linguistic study of story-world characters to shed new light on the nature of voices as social agents in the context of lived experience accounts of voice-hearing. We demonstrate a considerable overlap between approaches to voices as social agents in clinical psychology and the perception of characters in the linguistic study of fiction, but argue that the literary linguistic approach facilitates a much more nuanced account of the different degrees of person-ness voices might be perceived to possess. We propose a scalar Characterisation Model of Voices and demonstrate its explanatory potential by comparing two lived experience descriptions of voices in interviews with voice-hearers in a psychosis intervention. The new insights into the phenomenology of voice-hearing achieved by applying the model are relevant to the understanding of voice-hearing as well as to therapeutic interventions.
‘On the different Species of Phobia’ and ‘On the different Species of Mania’ (1786): from popular furies to mental disorders in America
Diederik F Janssen
Benjamin Rush’s twin 1786 letters on the different species of phobia and mania sit at an extended historical juncture at which an early modern quasi-medical troping of mental disorder in American social commentary sobered up to mental medicine. The letters’ satirical drive hinged on a perennial problem still occupying George Beard almost a century onward: which idiosyncratic trepidation or ill-grounded idea warranted the nomination of national and epochal ill? Rush’s mania letter exemplified an established genre identifying popular and especially political crazes; at the same time, it foreshadowed the early 19th-century rise and mid-century fall of monomania as forensic-nosological stopgap. The phobia text established the term’s dictionary (OED) sense of specific morbid fears, but did so in the form of a mobilisation of nosological jargon for social diagnostics purposes: an ambivalent prelude to Rush’s later formal engagement with unreasonable fears and follies. Both letters draw attention to a pervasive duality in early modern and Enlightenment conceptions of hydrophobia, aerophobia, syphilophobia and lyssophobia, between public-health and mental-hygienic follies.
New Genetics and Society
Translating cell biology of ageing? On the importance of choreographing knowledge
Tiago Moreira
This paper describes and explores how translational research models, embedded in institutions and standards, interact with the epistemic and material practices of cell biologists of ageing, a field re-energized by emergent technoscientific promises that hinge on the possibility of eliminating or manipulating senescent cells to tackle age-related diseases. Drawing on a 3-year long lab ethnography, the paper suggests that knowledge making in cell biology of ageing relies on two different epistemic and material cultures, to then argue that these cultures combine in four different types of experimental systems, only one of which can properly be seen as pertaining to translation as usually conceived. The paper further analyses how cell biologists articulate the linear temporality of translational research with the unfolding experimental chains where, by shifting between types of experimental system, cell biologists are able to generatively reconfigure their epistemic objects, and the consequences of this fragile arrangements for the field.
Māori views of forensic DNA evidence: an instrument of justice or criminalizing technology?
Annabel Ahuriri-Driscoll, Juan Tauri, Johanna Veth
DNA profiling is just one of many tools available to police in a criminal investigation. However, unlike any other criminal investigative tool, DNA profiling has captured the public imagination. Its portrayal in popular fiction has given rise to the “CSI effect”, whereby the weight and credibility of science, combined with the predictive potential of DNA, produce an aura of infallibility and certainty only amplified by creative license. Genetic material holds particular significance for Indigenous peoples, establishing identity and group membership, as well as associated rights. This taonga (treasure) status entails particular sensitivities regarding its handling and use; these have been well explored in health, but less so in the forensic context. This article presents professional and lay Māori perspectives on forensic DNA technologies in New Zealand, highlighting the inseparability of these from Indigenous experiences of criminalization but also their value in informing operational, ethical and justice-oriented considerations.
Problematizing consent: searching genetic genealogy databases for law enforcement purposes
G. Samuel, D. Kennett
Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG.
Sequencing BGI: the evolution of expertise and research organisation in the world’s leading gene sequencing facility
Kai Wang, Xiaobai Shen, Robin Williams
The increasing importance of computational techniques in post-genomic life science research calls for new forms and combinations of expertise that cut across established disciplinary boundaries between computing and biology. These are most marked in large scale gene sequencing facilities. Here new ways of organising knowledge production, drawing on industrial models, have been perceived as pursuing efficiency and control to the potential detriment of academic autonomy and scientific quality. We explore how these issues are played out in the case of BGI (Beijing Genomics Institute prior to 2008). BGI (in Pinyin, Hua Da Jiyin– Big China Genome) is today the world’s largest centre for gene sequencing research. Semi-detached from traditional academic institutions, BGI has developed distinctive models for organising research and for developing expertise, informed by practices in US Information Technology and Life Science Laboratories, that differ from existing models of interdisciplinary research in academic institutions.
Long-range familial searches in recreational DNA databases: expansion of affected populations, the participatory turn, and the co-production of biovalue (open access)
Rafaela Granja
Long-range familial searches in recreational DNA databases have been the subject of intense interest since the high-profile case of the Golden State Killer. This technique has raised considerable media attention and has sparked immediate criticism from forensic geneticists and other professionals, regulators, policy advisors, and ethicists. However, the literature on this topic does not capture the complexities resulting from the commodification of genetic data and the marketization of science. In this article, I explore how long-range familial searches conducted in recreational DNA databases reframe the trajectory of forensic genetics. Arguing that the advent and consolidation of long-range familial searches in recreational DNA databases represent the fourth wave of forensic genetics, I detail its implications, namely, the expansion of affected populations, the participatory turn, and the co-production of biovalue.
Science in Context
Rendering Inuit cancer “visible”: Geography, pathology, and nosology in Arctic cancer research
Jennifer Fraser
In August of 1977, Australian pathologist David W. Buntine delivered a presentation at the Annual Meeting of the Royal College of Pathologists of Australia in Melbourne, Victoria. In this presentation, he used the diagnostic category of “Eskimoma,” to describe a unique set of salivary gland tumors he had observed over the past five years within Winnipeg’s Health Sciences Center. Only found amongst Inuit patients, these tumors were said to have unique histological, clinical, and epidemiological features and were unlike any other disease category that had ever been encountered before. To understand where this nosological category came from, and its long-term impact, this paper traces the historical trajectory of the “Eskimoma.” In addition to discussing the methods and infrastructures that were essential to making the idea of Inuit cancer “visible,” to the pathologist, the epidemiologist, and to society at large, this paper discusses how Inuit tissue samples obtained, stored, and analyzed in Winnipeg, Manitoba, came to be codified into a new, racially based disease category – one that has guided Canadian and international understandings of circumpolar cancer trends and shaped northern healthcare service delivery for the past sixty years.
Time, trauma, and the brain: How suicide came to have no significant precipitating event
Stephanie Lloyd, Alexandre Larivée
In this article, we trace shifting narratives of trauma within psychiatric, neuroscience, and environmental epigenetics research. We argue that two contemporary narratives of trauma – each of which concerns questions of time and psychopathology, of the past invading the present – had to be stabilized in order for environmental epigenetics models of suicide risk to be posited. Through an examination of these narratives, we consider how early trauma came to be understood as playing an etiologically significant role in the development of suicide risk. Suicide, in these models, has come to be seen as a behavior that has no significant precipitating event, but rather an exceptional precipitating neurochemical state, whose origins are identified in experiences of early traumatic events. We suggest that this is a part of a broader move within contemporary neurosciences and biopsychiatry to see life as post: seeing life as specific form of post-traumatic subjectivity.
Social Science & Medicine
Digital mediation of candidacy in maternity care: Managing boundaries between physiology and pathology
Nicola Mackintosh, Qian (Sarah) Gong, Michelle Hadjiconstantinou, Nervo Verdezoto
This paper brings together scholarship across sociology, media and communication, and human computer interaction to explore the intersection of digital health and the maternity care system. We draw on data (including interviews, focus groups, observations, and analyses of digital media content) from 19 studies involving over 400 women to explore women’s experiences of using different forms of digital support such as the Internet, mobile technologies (apps and text messaging), social media, and remote monitoring devices in their reproductive journeys. We use a best fit approach to analysis, mapping our findings to the candidacy framework and notions of trajectory work to understand how women engage in digital health practices to negotiate boundaries between physiology and pathology and to enter dialogue with maternity services during conception, pregnancy and the postnatal period. We propose an integrated revised conceptual framework which explicates intersections between digital and care practices, and micro-level negotiations between women and professionals in the maternal health context. Our revised framework retains the dimensions of candidacy, but it introduces a precursor to the identification of candidacy in the form of ‘understanding normality’. It identifies distinct forms of digital work (e.g. information work, navigation work, machine work) which operate across the candidacy dimensions that women (and partners at times) engage in to negotiate legitimacy when entering into encounters with the maternity care system. Operating conditions (norms around expert motherhood; neoliberal discourses around health optimisation, risk and responsibilisation) provide a broader macro-level context, influencing the micro-level dialogic processes between women and healthcare professionals. Our synthesis highlights digital mediation as a useful filter to understand care systems, distribution of lay/professional responsibilities, relational practices and the (dis)enablement of candidacy.
Narrative arcs and shaping influences in long-term medication adherence (open access)
Cheryl Nakata, Lisa K. Sharp, Jelena Spanjol, Anna Shaojie Cui, ElifIzberk-Bilgin, Stephanie Y. Crawford, Yazhen Xiao
Long-term adherence to medications is not well understood and poses a significant challenge for many chronically ill persons. Past research provides insights on adherence in short durations such as a day or several weeks, even though chronically ill patients are required to take medications for periods as long as a lifetime. To fill this important knowledge gap, we study the temporal unfolding of prolonged medication-taking experiences among thirty adults, mostly African American, with chronic hypertension in the U.S. Specifically, we take an extended, experience-centered, narrative approach to examine retrospective patient accounts of adherence efforts over spans of one year to more than four decades. Applying Gergen and Gergen’s concept of narrative forms (1983), we find four distinct narrative arcs, or patterned sequences of medication consumption, that we term Out of the Gate, Existential Turn, Fits and Starts, and Slow Climb, along with individual and social elements that shape and shift practices in the context of time.
‘Known to be unhealthy’: Exploring how social epidemiological research constructs the category of low socioeconomic status (open access)
Ilse Dijkstra, Klasien Horstman
We examine how the category of low socioeconomic status (LSES) was constructed in European social epidemiological research and policy advice from 1977 to 2019. We analysed 22 empirical social epidemiological research publications on LSES and health, as well as six scientific advisory reports that offered government officials an overview of scientific evidence on health inequalities. We show the construction and reification of LSES as a problematic group in dominant thought, which consists of the following components: 1) the proliferation of SES concepts, indicators and groups labelled LSES; 2) generalisation through which LSES is constructed as a single population; 3) problematisation through which LSES is constructed as an inherently unhealthy population; and 4) individualisation by which a LSES personality is presented as an explanation of health differences. We also show how this knowledge is extrapolated into the policy domain in the form of scientific advisory reports. These findings provide evidence of the construction of LSES as an inherently unhealthy population through hyperproliferation and references to the objectivity of scientific research. With respect to the LSES category, the dynamics of research and policy resemble those regarding categories of ethnicity and gender. We conclude that if the construction of LSES remains unquestioned, social epidemiology might continue to (re)produce what it examines: LSES populations ‘known to be unhealthy’
Caring for care: Online feedback in the context of public healthcare services
Fadhila Mazanderani, Susan F. Kirkpatrick, Sue Ziebland, Louise Locock, John Powell
People increasingly provide feedback about healthcare services online. These practices have been lauded for enhancing patient power, choice and control, encouraging greater transparency and accountability, and contributing to healthcare service improvement. Online feedback has also been critiqued for being unrepresentative, spreading inaccurate information, undermining care relations, and jeopardising professional autonomy. Through a thematic analysis of 37 qualitative interviews, this paper explores the relationship between online feedback and care improvement as articulated by healthcare service users (patients and family members) who provided feedback across different online platforms and social media in the UK. Online feedback was framed by interviewees as, ideally, a public and, in many cases, anonymous ‘conversation’ between service users and healthcare providers. These ‘conversations’ were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. Vital to this was the premise that providing feedback was an enactment of care – care for other patients, certainly, but also care for healthcare as such and even for healthcare professionals. Ultimately, feedback was understood as an enactment of care for the National Health Service (NHS), as symbolically encompassing all of the above. Putting these findings in dialogue with STS scholarship on care, we argue that, in this context, the provision of online feedback can be understood as a form of care that is, simultaneously, both directed at healthcare (in the round, including patients, professionals, services, organisations, and, of course, health itself) and part of healthcare. We conceptualise this as ‘caring for care’. This conceptualization moves beyond dominant framings of online feedback in terms of ‘choice’ and ‘voice’. It embeds online feedback within pre-existing healthcare systems, relations and moral commitments, foregrounds the mutuality of care relations, and draws attention to the affective labour of feedback practices.
The modern hospital executive, micro improvements, and the rise of antimicrobial resistance
AlexBroom, Katherine Kenny, Emma Kirby, Mark Davis, Susan Dodds, Jeffrey Post, Jennifer Broom
Antimicrobial resistance (AMR) is now recognised as a social, cultural, economic and political phenomenon, positioning the social sciences as central in responding to this global health threat. Yet efforts to address AMR within hospital settings, for example through antimicrobial stewardship (AMS) programs, continue to focus primarily on the prescribing practices of individual clinicians, often with little effect. There has been less attention to the role of healthcare administration, and managerialism therein, in explaining the limited progress to date in reining in antimicrobial misuse. To explore this, drawing on interviews with senior executives and managers from two Australian hospitals, we examine how these stakeholders navigate between management practice and AMR solutions, revealing that antimicrobial optimisation is frequently obscured by accountability structures attuned to other agendas. This has led, we argue, to the institutionalisation of micro-improvements that frequently ‘tick the box’ of having an AMS program, yet do little to effectively counteract rising AMR. Our analysis illustrates how sociological attention to the structural and ideological settings within which prescribing behaviour is carried out will be crucial to any attempts to successfully rein in AMR.
“Not a free version of a broken system:” Medical humanitarianism and immigrant health justice in the United States
Erin Hoekstra
Medical humanitarian organizations are increasingly the primary healthcare providers for unauthorized migrants in high-income countries. Existing studies of medical humanitarianism in the Global North reveal tensions between principles of traditionally apolitical humanitarianism and human rights. In practice, these tensions translate into organizational debates about prioritizing direct service provision to meet immediate needs or advocacy to effect long-term systemic change. Informed by these debates, this paper asserts the importance of immigration and health policy contexts as central to shaping the relationship between healthcare provision and political advocacy within medical humanitarian NGOs. Drawing from twelve months of fieldwork with medical humanitarian NGOs in Arizona, I analyze data from ethnographic participant observation and interviews with volunteer healthcare providers at a medical humanitarian organization I call Community Clinic of Phoenix (CCP), a free clinic for uninsured, undocumented immigrants. I find that, in the context of Arizona’s anti-immigrant rhetoric and policies, CCP employs medical humanitarianism as both a discourse and a model of care to challenge immigrants’ exclusion from health coverage and criminalization through immigration enforcement. The clinic’s emphasis on immigrant health justice shapes their critiques of the structural failures of U.S. immigration and health systems, their approach to providing equitable access to quality healthcare for uninsured immigrants, and their work to create broad social change for immigrant rights and health justice. Driven by their mission of “not replicating a free version of a broken system,” the clinic’s healthcare provision amid a climate inhospitable to immigrants demonstrates the importance of both conceptualizing and practicing medical humanitarianism as healthcare advocacy.
“The mind may go, but the heart knows”: Emotional care by ethnic minority carers of people living with dementia
Andrew Simon Gilbert, Josefine Antoniades, Samantha Croy, Bianca Brijnath
Drawing on the sociology of emotions, this article investigates the socially and culturally mediated nature of emotions and emotional care within 93 ethnic minority carers’ narratives of dementia care. Adding to the cross-cultural literatures on the sociology of emotions and dementia care respectively, our analysis showed that ‘signals’ of dementia to family carers were often emotional outbursts of anger by the person with dementia. These displays, in turn, created conflict, and aroused emotions such as shame, anger, and depression among carers. To mitigate these tendencies, carers enacted emotional management, which centered on reducing the gravity of negative emotions felt by the person with dementia, and affording them the social space to maintain a positive disposition. To create this positive emotional space, carers deployed different strategies. Some mobilized medical discourses to diffuse the emotional and moral significance of their relative’s behavior and enable emotional distantiation. Others conceived of people with dementia as ‘childlike’ and requiring their protection from emotional negativity. Although, such efforts work took a toll on carers’ emotional energies, it was considered enabling, therapeutic, and integral to care. Such emotional work departs from academic and advocacy efforts that see such behavior as patronizing and infantilizing, and underscores the need for more nuanced discussion around emotions and dementia care in ethnic minority families.
Countervailing powers in the labor room: The doula–doctor relationship in the United States
Crystal Adams, Mica Curtin-Bowen
How do health professionals with fundamentally different philosophies toward health, and different status levels, manage power in their work relationships? This paper argues that taking a negotiated order interactionist approach, which contends that the social order shapes behavior but is continuously negotiated through social interactions, and synthesizing it with a countervailing powers perspective can yield insight into the power dynamics between health professionals. It focuses on the birth field, with attention to the relationship between two very different types of birth professionals: obstetricians and doulas. Unlike doctors, who maintain a dominant place in health care and subscribe to a biomedical perspective of birth, doulas hold a low-status position and take a holistic approach toward birth, which may cause conflict in the labor room. In-depth interviews with 43 birth doulas based in the US (May–July 2018) found that the doula–doctor relationship is a complex story of power, deference, and countervailing responses. Doulas reported that doctors are more receptive to them now than in the past but that this is an outcome of creative countervailing responses involving deferential maneuvers and direct challenges to physician authority. Doulas’ strategic management of their relationships with health professionals has allowed them entry to the hospital, permitting them to represent a holistic voice in the labor room. A minority of doulas have begun to develop relationships with doctors that constitute a collaborative approach toward birth care, indicating that changes in standard care are possible. By revealing how a subordinate actor can challenge physicians and effect change in care, this study contributes to scholarship seeking to understand the nature of unequal relationships between health professionals in a context of biomedical dominance.
Detached co-involvement in interactional care: Transcending temporality and spatiality through mHealth in a social psychiatry out-patient setting (open access)
Anna Schneider-Kamp, Barbara Fersch
This article explores how the integration of digital technology into healthcare processes of social psychiatry impacts the healthcare professional-patient relation. To this end, it adopts a new materialist perspective, viewing the context of social psychiatry as an assemblage of human and technological components and their relations. We draw on a qualitative study of the introduction of an mHealth platform including shared calendars, messaging, and video calls into the care processes of a social psychiatry out-patient setting in Denmark. The study demonstrates how technology acceptance is facilitated by familiarity and relational trust, how the platform streamlines routine care tasks by providing shared structures, and how the platform allows for a multi-channel approach to interactional care. The analysis reveals an emerging type of care interaction, detached co-involvement, which appears to strengthen the healthcare professional-patient relation and concomitantly increase patient autonomy by facilitating temporally and spatially detached albeit more frequent interactions. The implications of these findings extend beyond the context of social psychiatry. First, they demonstrate that the careful integration of digital technology into care processes has the potential to increase the involvement of and even empower mentally vulnerable patients. Second, they demonstrate how adding such technology can extend an assemblage temporally and spatially and, consequently, allow components to remain attached to it while they attach to and detach from other assemblages.
Invisible and unequal: Unincorporated community status as a structural determinant of health (open access)
Cristina Gomez-Vidal, Anu Manchikanti Gomez
Despite increasing awareness of the importance of political determinants of health, place-based research has not interrogated one of the most common political statuses: the impact of living in a community without municipal incorporation. In 2010 an estimated 37% of the U.S. population lived in an unincorporated area; despite their ubiquity, unincorporated communities are largely absent from the public health literature. Residents of unincorporated areas typically do not have their own local (e.g., city or municipal) government. This lack of representation leads to political exclusion and diminished access to resources, especially for low-income communities of color, Furthermore, by not disaggregating health data to unincorporated communities, residents are subsumed into county or census tract data that may not be reflective of their community’s composition or context. Without jurisdictional distinction in research, there is no accountability for the manufacturing of health inequities in unincorporated communities . In the absence of empirical research on unincorporated communities, this paper uses the Commission on Social Determinants of Health (CSDH) Framework of the World Health Organization to argue that lack of municipal status is a structural determinant of health responsible for social conditions which generate cumulative health risks for residents. This includes using existing evidence on social conditions typical of unincorporated communities to describe patterns of residential segregation, neighborhood disadvantage, and environmental hazards that may increase residents’ exposure to unhealthy environments in unincorporated communities. Finally, we provide an agenda for future public health research that can begin to address this health and racial equity gap for low-income unincorporated communities of color who have, until now, been absent in health equity discourse.
“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness
KatharineBloeser, Kelly K.McCarron, Vanessa L.Merker, Justeen Hyde, Rendelle E. Bolton, Nicole Anastasides, Beth Ann Petrakis, Drew A. Helmer, Susan Santos, David Litke, Wilfred R. Pigeon, Lisa M. McAndrew
People living with medically unexplained symptoms (MUS) often have poor quality of life and health outcomes. Many struggle to engage with and trust in healthcare systems. This qualitative study examined how experiences with institutions influence perceptions of medical care for MUS by applying the theoretical framework of institutional betrayal to narratives of U.S. military Veterans living with Gulf War Illness (GWI). Institutional betrayal refers to situations in which the institutions people depend upon for safety and well-being cause them harm. Experiences of institutional betrayal both during active military service and when first seeking treatment appeared to shape perceptions of healthcare in this sample. Veterans expressed the belief that the military failed to protect them from environmental exposures. Veterans’ concerns regarding subsequent quality of healthcare were intrinsically linked to a belief that, despite official documentation to the contrary, the predominant paradigm of both the U.S. Department of Defense and the U.S. Department of Veterans Affairs (VA) is that GWI does not exist. Veterans reported that providers are not adequately trained on treatment of GWI and do not believe Veterans’ descriptions of their illness. Veterans reported taking up self-advocacy, doing their own research on their condition, and resigning themselves to decrease engagement with VA healthcare or seek non-VA care. The study’s findings suggest institutional level factors have a profound impact on perceptions of care and the patient-provider relationship. Future research and policy aimed at improving healthcare for people living with MUS should consider the concept of institutional betrayal.
“We used to get food from the garden”: Understanding changing practices of local food production and consumption in small island states (open access)
Cornelia Guell, Catherine R. Brown ViliamuIese, Otto Navunicagi, Morgan Wairiu, Nigel Unwin on behalf of the Community Food and Health (CFaH) Team
Many Small Island Developing States (SIDS) lead global rates in obesity and non-communicable chronic diseases (NCDs). Drivers for this are complex and include lack of food sovereignty, evidenced by an increasing reliance on cheap nutrient-poor food imports and a focus on export orientated cash crop production for much local agriculture. To better inform SIDS’ policy goals of improving nutrition through increased local food production, we explored in two SIDS current practices of food production and consumption. Teams of researchers from the two main regional universities conducted 28 focus groups in Fiji in the Pacific and Saint Vincent and the Grenadines in the Caribbean with rural and urban communities of different socio-economic or land-owning status. In both countries home gardens were still common, valued as providing staple foods to households and contributing to health and livelihoods. Yet social changes had been experienced over the life course and across generations, such as increased purchase of foods, consumption of processed and often imported foods, and fast foods. While participants associated local foods with better nutrition and health outcomes than imported foods, some local foods were also acknowledged as unhealthy (e.g. locally produced tinned products, pesticide contaminated fresh produce). Finally, as food and related health advice moves globally, crossing national boundaries, and through formal and informal channels, local experiences can be confusing and contested. We suggest the need to understand temporal and spatial aspects of social practices, as social practices and their meaning change over time, travel globally and are experienced locally. To enhance and support re-localising food to counteract unhealthy consumption of ultra-processed, shop-bought, often imported foods, it is vital to understand these lived experiences of changes and resulting uncertainties, and to explicitly build on the longstanding positive relationships that people continue to express about home gardens and local food.
“Going through it together”: Being accompanied by loved ones during birth and abortion (open access)
Anna L. Altshuler, Alison Ojanen-Goldsmith, Paul D. Blumenthal, Lori R. Freedman
We sought to understand the meaning people who have given birth and have had an abortion ascribe to being accompanied by partners, family members and friends during these reproductive experiences. Incorporating this knowledge into clinical practice may contribute to improving the quality of these services, especially in abortion care, in which loved ones are often excluded. The study took place in Northern California in 2014. We conducted semi-structured, intensive interviews with twenty cis-women about their birth and abortion experiences and analyzed their narratives with respect to accompaniment using grounded theory. The roles of loved ones were complementary yet distinct to those of medical personnel. They were also multifaceted. Participants needed familiar individuals to bear witness, share the emotional experience and provide protection from perceived or possible harm associated with medical care. In some cases, more often in the context of abortion than childbirth, participants shielded their loved ones from emotional burdens of the reproductive process. Some pregnant people of color faced gendered racism, which also influenced their accompaniment needs. Male partners played a distinct role of upholding dominant social ideals related to pregnancy. As is commonplace in birth-related care, abortion services could be formally structured to include partners, family members and friends when desired by pregnant people to improve their experiences. Such integration should be balanced with considerations for privacy, safety and institutional resources. Working toward this goal may reduce structural abortion stigma and help alleviate pregnant people’s burdens associated with reproduction.
“Under great anxiety”: Pregnancy experiences of Vietnamese women with physical disabilities seen through an intersectional lens
Thi Vinh Nguyen, Julie King, Niki Edwards, Michael P. Dunne
There is scant research on pregnancy experiences of women with physical disabilities in low and middle-income countries. This qualitative study used an intersectional lens to explore pregnancy experiences of women with physical disabilities in northern Vietnam. Specifically, socio-cultural, economic, and environmental influences were analysed, drawing upon their lived experiences. Two in-depth interviews were conducted at different time-points in 2018 with women with physical disabilities who had given birth in the previous three years. Twenty-nine women participated in the first interview and 27 in the follow-up interview. The interviews were thematically analysed. The women were happy and excited when discovering their pregnancy but they also experienced anxiety, fear, and distress. Their ambivalence related to concerns around having a child with disabilities, their capability to carry a pregnancy, and their mothering abilities. Negative community views of disability were internalised by the women. These socio-culturally constructed beliefs led to lack of confidence in their pregnancy journey. This was exacerbated by inaccessible environments that contributed to increased risk of falls, and women who used wheelchairs experienced particular difficulties. Other powerful influences included poverty, lost income, and costs associated with pregnancy. Single mothers with disabilities experienced additional stigma and discrimination as Vietnamese society judged their pregnancies as socially unacceptable. This study contributes to knowledge and understanding about women with physical disabilities, specifically how the intersection of gender, disability, socio-economic, and marital status shaped their pregnancy experiences in Vietnam. Multiple challenges were encountered by the women in their pregnancy journey, including negative community views, inaccessible environments, and poverty. The findings highlight the necessity for Vietnamese women with physical disabilities to be actively engaged in talking about their experiences to ensure maternal and child health providers become more sensitive to their pregnancy and motherhood needs.
Living with embodied vibrations: Sensory experiences following a traumatic brain injury
Nicole Gombay, Gavin J. Andrews
Based on autoethnography, this article adopts a (neuro)phenomenological lens to explore sensory experiences following a traumatic brain injury (TBI). Although focussing particularly on pain, vision, hearing, and somatic experiences connected with sleep, we also touch on how these are interwoven with other symptoms associated with TBIs. We use these experiences to enliven, and thereby enrich, clinical constructions and understandings of ‘sensitivity’ to light and to noise, as well as ‘sleep disturbance’. We conclude with a discussion of how these sensory experiences can be understood in relation to embodied dynamics of vibration, oscillation, and (stochastic) resonance. The article closes with the suggestion that an embodied, sensorial, and phenomenologically informed analysis of the experiences of people with TBIs, particularly in relation, for example, to embodied sensations and perceptions of vibration, might provide novel insights for research and clinical practice.
Social Theory & Health
Health capital: toward a conceptual framework for understanding the construction of individual health (open access)
Anna Schneider-Kamp
Emerging perspectives of health as individualized and privatized capital seem promising to shed light on the construction of individual health in the face of the growing individualization of healthcare. This article reviews extant perspectives of health as capital, reflecting upon how a conceptualization of health capital might be conceived by two of the main contrasting traditions: human capital theory affiliated with the Chicago School of Economics and Bourdieusian concepts of social field and capital. Arguing that a Bourdieusian perspective is potentially more fruitful to capture the importance of social and cultural dimensions in the construction of individual health, this article arrives at a conceptualization of health capital as the aggregate of the actual or potential resources possessed by a given agent that have the capacity to affect the position of agents in the social field of health. Drawing on Bourdieu’s conceptualization of forms of capital, this article discusses the efficacy, the legitimation, and the positioning of health capital, uncovering its potential for understanding contemporary trends in health practices and health discourse.
This article analyzes the contemporary transformation of the medicalization of pain relief in the organization of the perinatal care system in Quebec. The consequences of this transformation are analyzed specifically through the common recourse to epidural anesthetics to relieve women’s pain during childbirth. Relying on 6 months of ethnographic fieldwork, 26 semi-structured interviews and 24 life history interviews, I discuss the relevance of the concepts of medicalization and demedicalization for a theoretical analysis of this transformation. By taking into account in the analysis the three levels of medicalization suggested by Conrad and Schneider (conceptual, interactional and institutional), I argue that the expertise related to the relief of pain during childbirth is transferred from health professionals to women through a naturalization of women’s competences process. Beyond the notion of social control, I revisit the use of the concept of medicalization to analyze how pain during childbirth could be simultaneously the subject of a double and continuous process of demedicalization and of medicalization. I conclude that the transformations of the Quebec perinatal system cannot be completely part of a demedicalization process but rather part of a form of medicalization where the different levels of medicalization are modulated.
“You don’t like to tell them their job but it’s your foot at the end of the day”: theorising and negotiating ‘resistance’ in clinical encounters
Emily Nicholls, Victoria Robinson, Lisa Farndon, Wesley Vernon
This article draws on the findings of a small-scale, qualitative study exploring patients’ reactions to specialist advice regarding healthy footwear to develop and explore the ways in which the concept of ‘resistance’ can be understood in clinical encounters. Whilst wearing ‘inappropriate’ shoes can cause discomfort and exacerbate existing conditions, foot health professionals may continue to experience resistance to efforts to encourage patients to make footwear changes. Theoretically, resistance to professional advice has been seen not merely as a barrier, but a ‘tool’ to spark further, more personalised consultation to encourage real, long-term changes. Whilst such developments are welcome, we contend that some patients may be more able than others to openly resist, and resistance may not always be overt and obvious, but rather may take the form of an ‘illusion of compliance’. Additionally, some patients may consciously resist advice as a means to retain a sense of control over their treatment and bodies. Our insights extend and develop the concept of resistance in a theoretical and practical sense and have applicability in wider neoliberal healthcare contexts.
Unruly bodies: resistance, (in)action and hysteresis in a public health intervention (open access)
Benjamin Hanckel, Sarah Milton, Judith Green
Schools have long been sites of public health intervention on the bodies of children. Increasingly, these interventions also act on the bodies of educators. Our case study is an intervention focused on the future health of children’s bodies (‘The Daily Mile’), which, we argue, also resulted in the surveillance of educators’ bodies. We draw on Bourdieu’s concept of hysteresis to explore how those bodies can become ‘unruly’ during implementation, in both resisting and being positioned as reluctant. Hysteresis, an under-utilised Bourdieusian concept, proved useful for exploring embodiment at a point when there were mismatches between habitus and the changing field of primary education. We show how the non-participation of some actors (e.g. teachers) was positioned as part of a broader resistance to health as a dominant value, whereas non-participation of less-privileged social actors (e.g. Teaching Assistants) was problematised in different ways. We argue that attending to moments of hysteresis, in which the changing symbolic values of physical capital become explicit, surfaces not just how dominant discourses (e.g. healthism) become reproduced in fields, but also how they change and are resisted, and with what effects.
Bariatric surgery as prophylaxis: an emerging protection discourse
Andrea E. Bombak, Nicholas Eckhart, Jackson H. Bensley, Erin Cameron, Leah J. Markel, Katherine Hughes
As the medicalization of ‘‘obesity’’ has become more formalized, bariatric surgery is taking on new meaning in both medicine and society. Through repeated qualitative interviews (3 interviews every 3 to 5 months) and deploying interpretative phenomenological analysis, we examine the discourses and perceptions of patients post-bariatric surgery (n = 15). Results suggest participants’ perceive bariatric surgery not as a cure, but a tool, alleviant, prophylaxis and suppressant. The findings highlight that responsibility for a healthy future is constructed as a matter of individual responsibility and pressing concern.
Chronic obstructive pulmonary disease (COPD) is an illness associated with intersectional poverty and stigma in old age; people with COPD are susceptible to anxiety, loneliness and isolation. People with COPD who contract COVID-19 are at high risk of serious complications, intensive medical needs and death and are, therefore, required to socially distance particularly assiduously. This paper offers an embodied phenomenological analysis of the emerging theoretical literature exploring the impact of social distancing upon people with COPD. Firstly, people with COPD are aware of how respiratory illness feels, are anxious about COVID-19 and afraid of being denied care. Future research might consider how people with COPD may be susceptible to “coronaphobia” and mental health consequences of the pandemic. Secondly, COPD tends to affect older people within the most intersectionally marginalised socioeconomic groups. Future research should remain mindful that people with COPD may be among the most lonely and least able to access health and social care services online than others. Thirdly, pandemics are known to intensify pre-existing social stigmas. Researchers and practitioners alike should be conscious that people with COPD may become increasingly stigmatised, especially those from intersectionally disadvantaged minorities.
Sociology of Health & Illness
Frying eggs or making a treatment plan? Frictions between different modes of caring in a community mental health team (open access)
Christien Muusse, Hans Kroon, Cornelis L. Mulder, Jeannette Pols
In this article, we conduct an empirical ethics approach to unravel the different perspectives on good care that are present in a community mental health team (CMHT) in Utrecht. With the deinstitutionalisation of mental health care, the importance of a close collaboration between the social and medical domains of care on the level of the local community is put in the foreground. Next to organisational thresholds or incentives, this collaboration is shaped by different notions of what good mental health care should entail. Using the concept of modes of ordering care (Moser 2005), we describe five modes of ordering mental health care that are present in the practice of the CMHT: the medical specialist, the juridical, the community, the relational and the bureaucratic perspective. These different modes of ordering care lead to frictions and misunderstandings, but are mutually enhancing at other times. Unravelling these different modes of ordering care can facilitate collaboration between professionals of different care domains and support a mutual understanding of what needs to be done. More so, the analysis foregrounds that ordering care from a relational approach is important in daily practice, but is in need of stronger legitimation.
Tracking towards care: Relational affordances of self-tracking in gym culture
Dorthe Brogård Kristensen, Alev Pinar Kuruoglu, Signe Banke
In the past few years, self-tracking technologies have been celebrated for the possibilities they offer to ‘optimize’ fitness and wellbeing, yet also criticized for being rigid and isolating. In this article, we identify complex tracking arrangements that consist of a variety of data and multiple modalities of tracking emplaced within arrangements of actors and objects (digital/analog tracking devices and data output). We inquire into how these arrangements afford care. Based on our ethnographic research of gym culture in Denmark, we find that individuals make the technologies ‘work’ for them in ways that shield them from bodily or emotional distress. Fitness practitioners combine digital tracking technologies with analog methods and enrol other human actors in recording, interpreting, questioning and tinkering with their data; in other words, they perform data work in ways that mend or prevent ruptures and brokenness and thus afford ‘care’. We highlight the role of the personal trainer, who often complements or salvages the outputs of digital technologies. We argue that tracking has the capacity to afford care and wellness when it is emplaced within socialities and when actors are able to exercise their capacities and knowledge in ways that mitigate the data outputs.
The COVID-19 pandemic and cause of death (open access)
David Armstrong
This article explores the emergence and development of Death Certificates as a means of establishing the cause of death for individuals and populations. The difficulty in choosing which disease caused death when several are described on the Certificate explains why the number of COVID-19-related deaths has been difficult to determine. This problem also draws attention to the dominant biomedical explanation for the cause of death that both promote and circumscribe what can be recognised as a valid cause.
Appraising screening, making risk in/visible. The medical debate over Non-Rare Thrombophilia (NRT) testing before prescribing the pill
Mauro Turrini, Catherine Bourgain
Non-rare thrombophilia (NRT) are hereditary predispositions to thromboembolism, the most severe side effect of combined hormonal contraception. In the mid-1990s, the identification of NRT stirred up a controversy over the possibility of investigating these genetic variants in women wishing to use contraception. Through a review of literature, this article reconstructs the debate over whether and how this genetic test should be prescribed as a way to reconfigure the risk visibility on pharmacological contraception. The main arguments identified concern the epidemiological, social, economic and clinical aspects of the test. In a context where the overall thrombotic risk for hormonal contraception is largely invisible, the genetic tests turn to embody the thrombotic risk itself. Those who opt for selective screening argue that a better estimation of risk implies a test prescription embed in a global medical assessment of women’s individual risk. To advocates of universal or ‘extended’ screening, the tests are valuable tools to inform women on the thrombotic risk and, as such, appraised as a moral/legal obligation, whatever their predictive power. Risk visibility thus appears as an insightful concept to analyse a complex setting associating clinical, political, social and cultural considerations that touches upon medical power, women’s responsibility and drug safety.
Triage as an infrastructure of care: The intimate work of redistributing medical care in nursing homes (open access)
Nienke van Pijkeren, Iris Wallenburg, Roland Bal
This article explores how professionals in older persons care work on a triage system in the daily care setting. We follow how triage is introduced in older persons care organizations in The Netherlands, to deal with a scarcity of physicians and distribute care among health workers in the region. We offer a sociological analysis in which we use the notion of infrastructure and infrastructural work to study how professionals work with triage in the daily care setting. This study is based on a formative evaluation in which we as researchers both studied and contributed to the construction of the triage system by sharing and participating in reflexive infrastructural work practices. We show how this method enabled to gradually adjust the triage system to the daily practices of care delivery, taking the spatial-temporal setting of care into account. We argue that triage not only structures and simplifies but also opens up new ways of re-placing medical and care work, both professionally and geographically. As our results reveal, re-placing physicians has complex effects above and beyond the efficient deployment of medical staff. Triage as infrastructure not only changes the location, but also reconfigures the relationships physicians have with residents and nurse aids.
When the wheels come off: Actor-network therapy for mental health recovery in the bicycle repair workshop
Nicholas Marks
Professional accounts of emotional distress originate from within mainstream mental illness discourses and are underpinned by largely conjectural biomedical, brain-based conceptions of disorder. Alternative, formulation-based approaches remain delimited by cultural norms and linguistic resources. Service users frequently declare the most ordinary aspects of therapy the most helpful: listening, understanding, and respectfulness; these are not contingent upon the presence of a mental health professional. This paper describes ameliorations in states of emotional distress amongst volunteer trainee mechanics in a bicycle workshop, which has little overtly to do with mental health. Possible explanations for these ameliorations, or ‘recoveries’, are presented. In an enabling setting that offers the social and material resources conducive to particular ways of being, an applied actor-network approach is introduced as a practical way to disentangle the concomitant complexities of bicycles and everyday life. This approach to analysing states of distress—introduced here as ‘actor-network therapy’—combines notions of enactment and enhandedness in the appreciation of ‘engrenage’ – the intriguing intricacy of locally generated, provisional realities.
Theory, Culture & Society
Fanon’s Psychiatric Hospital as a Waystation to Freedom
Nancy Luxon
What does it mean to develop psychiatric method in a colonial context? Specifically, if the aims of psychiatry have traditionally been couched in the language of ‘psychic integration’ and ‘healing’, then what does it mean to practice psychiatry within structures that organize and reinforce the exclusions of colonialism? With these questions, this article examines Frantz Fanon’s psychiatric practices in light of his radical political commitments. I argue that Fanon’s innovations with the institutional form of the psychiatric hospital serve to intervene differently in psychic conflict. Notably, these changes offer different ways to diagnose and respond to patients, along with different strategies for managing psychic disintegration in colonial contexts. The result is a rethinking of the relation between material and imagined worlds, and so the emergence of the hospital as a waystation between a colonial context and a political freedom yet to come.