Here is our “In the Journals” roundup for October. In addition to a rich selection of abstracts, also of interest this month are a Special Issue of Osiris on the “History of Science and Emotions” and two recent articles by Fernando Vidal on brains in literature and cinema (linked below). Enjoy!
Even before the brain’s deterioration became a health problem of pandemic proportions, literature and film rehearsed the fiction of brain transplantations that would allow an aging person to inhabit a younger body, so that successive surgeries may result in that person’s immortality. Such fiction makes the brain operate like an immaterial soul that does not undergo physical decline. This article examines that fiction as elaborated in Hanif Kureishi’s The Body and several films in connection with older fantasies that articulate desire, eternal youth, and personal immortality, with philosophical discussions about brain and personhood, and with people’s assimilation of neuroscientific idioms into their views and practices of personal identity. In conclusion it discusses how, in contrast to philosophical approaches that tend to focus on self-consciousness, first-person perspectives, and individual autonomy, fiction may contribute to direct attention to relationality as constitutive of personhood.
Jean Shoveller, Sarah Viehbeck, Erica Di Ruggiero, Devon Greyson, Kim Thomson and Rodney Knight
Research that fulsomely characterizes context improves our understanding of the processes of implementation and the effectiveness of interventions to improve the health of populations and reduce health inequalities. Context could be a key aspect to understanding what population health interventions best address underlying conditions that contribute to systematic differences in health status at the population level. Here, we present a ‘snapshot’ of representations of context in population health intervention research published recently in some influential journals in the field of public health. In general, we found that context was treated as a ‘black box’, or as something that needs to be ‘controlled for’. Context also was used to help explain intervention ‘failure’. There were few in-depth descriptions of the hypothesized pathways or mechanisms through which context and intervention (in combination or separately) influence population health. Recognizing that research on population health interventions can be less straightforward than research conducted under more ‘controlled’ (i.e. de-contextualized) conditions, we suggest that there is a great need for new theoretical and methodological work in this area.
Sara Paparini and Tim Rhodes
The ‘cascade of care’ construct is increasingly used in public health to map the trajectory of local HIV epidemics and of different HIV populations. The notion of ‘patient engagement’ is key to the progress of people living with HIV through the various ‘steps’ of the cascade as currently conceptualised. The public health literature on the definition, measurement and interpretation of cascade of care frameworks is growing in parallel with critical social science literature analysing patient engagement through the lenses of ‘patient citizenship’ theories. In this paper, we review qualitative literature on HIV treatment, adherence to antiretroviral therapy and care engagement that draws upon the interlinked concepts of therapeutic and biological citizenship. We aim to offer a critique of the cascade of care construct using empirical data from research studies published since 2005 that were influenced by these two concepts. In so doing, the paper places public health literature on the cascade of care in dialogue with in-depth qualitative and ethnographic approaches, to unpack the understandings and processes shaping patient engagement in HIV treatment and care in different settings. The paper also examines the contributions and limitations of the concepts of biological and therapeutic citizenship as argued by a number of scholars here reviewed.
Treena Orchard, Kate Salters, Warren Michelow, Katherine Lepik, Alexis Palmer, and Robert Hogg
People with drug addictions have among the lowest rates of adherence to HIV medications (i.e. HAART) of any infected population, which is often explained through reference to the instability associated with problematic drug use and the ‘chaos’ that is assumed to characterize the lives of people with addictions. Many studies examine the links between addiction and adherence from the perspective of HIV-positive populations, but few explore how HIV care providers think about addictions, their impact on adherence, and how to incorporate the complex health needs of drug-using populations into comprehensive HIV care practices. Using qualitative data from a pilot study on adherence to HAART among people with drug addictions in Vancouver, British Columbia, this paper examines how eight HIV care providers (i.e. physicians, pharmacists, and community-based service providers) approach these interconnected issues. Our findings illustrate that while addictions often complicate adherence to HAART, this is not a universal reality, and the kinds of drugs used as well as the individual capacities of these patients also factor significantly in their adherence success. The organization of the HIV care environment, which is highly stratified and provides certain professionals with more resources and structural capabilities to deliver comprehensive care than others, also plays a large role in our participants’ abilities to address the health needs of their clients with addictions. We recommend that the current HIV care delivery system be adapted to ensure more integrated care and greater equity across the different groups of providers working in the field of HIV care.
Naomi Nichols, Micheal Fridman, Khaled Ramadan, Lee Ford Jones, and Niraj Mistry
This article reports findings from focus group conversations and in-depth interviews about the things that parents do to take care of their children’s health in Toronto, Canada. Our data demonstrate that within a single urban setting, parents are differently positioned to effectively find and engage existing healthcare resources. Parents’ ‘family health work’ is shaped by systemic expectations for health and institutional literacy and inter-institutional navigation skills that not all parents possess in equal measure. The intensive focus in Ontario paediatric healthcare settings on patient and parent education suggests increased interest in cultivating autonomous health information seeking and use strategies among parents. But the degree to which parents’ health-information seeking and use strategies are deemed effective depends on whether they are able to construct coherence between what they know about their child’s health and how to take care of it, and the knowledge the medical system requires to support diagnosis and treatment. Our research suggests that the healthcare system is only interested in information-seeking autonomy insofar as it supports patients’ engagement with the systems’ existing practices, frames of validity and service pathways. People who are unable to demonstrate health knowledge and work that support existing systemic processes cannot effectively use what they know and do to support their children’s health and wellness.
Allison A. Parsons, Katrina M. Walsemann, Sonya J. Jones, Herman Knopf, and Christine E. Blake
The medicalization of obesity encourages the structural and interpersonal regulation and monitoring of people who appear to be overweight or obese, with particular attention paid to low-income and minority populations; these dynamics serve to perpetuate contemporary social inequalities. The purpose of this study was to gain a better understanding of the perceptions of health and obesity among mostly Black parents and mostly White school personnel at a US elementary school serving low-income Black children, compare these perceptions to the dominant obesity discourse, and explore possible differences in child health narratives and obesity discourse based on race. In-depth qualitative interviews were conducted with 20 parents and 20 school personnel, which were part of a larger ethnographic study. Three main themes around dominant obesity discourse were identified from the in-depth interviews with parents and school personnel: (1) reflections of obesity discourse in child health narratives, (2) identifying ‘deviant others’, and (3) challenging obesity discourse. By engaging in dominant obesity discourse, school community members create an environment where children are taught possibly damaging ways to view their bodies and health. The findings from this study are evidence of the need for health messaging within the school environment that recognizes the complexities of child health.
Ola Söderström, Lilith Abrahamyan Empson, Zoé Codeluppi, Dag Söderström, Philipp S. Baumann, and Philippe Conus
Primarily on the basis of epidemiological studies, recent research in psychiatry has established a robust link between urban living and psychosis. This paper argues first, that an experienced-based approach, moving beyond epidemiology, is needed in order to enable more fine-grained understandings of the city/psychosis nexus. The second part of the paper presents preliminary fieldwork results based on video-elicitation sessions with first-episode patients with psychotic disorders. These results lead to the generation of a series of hypotheses for further research on the role of density, sensory overload and social interaction as factors in the onset of non-affective psychoses. The conclusion discusses the insights gained from viewing the city as an experiential milieu rather than as a set of substances. We argue that such insights enable, on the one hand, observation of the role of specific places and situations – and thus to unpack ‘the city’; and, on the other, to envisage the urban milieu as a nexus of possible sites of recovery.
Susan F. Murraya, Ramila Bishtb, and Emma Pitchforth
Plans for ‘medicities’, announced in the Indian press from 2007 onwards, were to provide large scale ‘one-stop-shops’ of super-speciality medical services supplemented by diagnostics, education, research facilities, and other aspects of healthcare and lifestyle consumption. Placing this phenomenon within the recent domestic and global political economy of health, we then draw on recent research literatures on place and health to offer an analysis of the narration of these new healthcare places given in promotional texts from press media, official documents and marketing materials. We consider the implications of such analytic undertakings for the understanding of the evolving landscapes of contemporary health care in middle-income countries, and end with some reflections on the tensions now appearing in the medicity model.
Grace Spencer, Anita Bundy, Shirley Wyver, Michelle Villeneuve, Paul Tranter, and Kassia Beetham
Recent theoretical debates highlight the competing risk logics and varying rationalities mobilised in response to dangers and approaches to risk management. Yet the concept of uncertainty, and how it informs perceived risks, is relatively less well understood. Debates of this kind are illuminated in contexts where risks are managed as part of everyday practice. The school setting provides an example of a context in which risks are continuously negotiated amidst dominant protectionist concerns about children’s well-being and safety. Such protectionist concerns are particularly pronounced for children with disabilities, as assumptions about limited capabilities complicate and structure the everyday play experiences for children. Drawing on findings from the Sydney Playground Project, in this article we aim to unpack the felt discomfort experienced by school staff in their responses to uncertain moments in children’s play. We report qualitative data collected from two schools between October 2014 and September 2015 using video observations of children’s play and teachers’ responses to an online Tolerance of Risk in Play Scale. Our findings point to the competing logics and forms of sense-making operationalised by teachers to manage the unknown. Our analysis explored the ways in which risk strategies were (re)framed by school staff and such reframing explained their action (or inaction) in the playground and how these were underpinned by concerns about professional accountabilities. Their responses located risks within the child with disabilities, rather than the play activity itself. Another approach to uncertainty can be achieved by mobilising a discourse of trust in which ‘letting-go’ offers children opportunities to reflexively engage in risk-taking.
Rusi Jaspal and Brigitte Nerlich
Post-exposure prophylaxis (PEP) is a biomedical approach to HIV prevention that is administered after a potential exposure to the virus. Although it was originally approved in the UK for occupational exposure to HIV among healthcare workers, PEP has remained a controversial method of preventing HIV infection following sexual exposure. To examine emerging social representations of PEP, we undertook a qualitative thematic analysis of 72 articles published in UK newspapers between 1997 and 2015. We focused on print media, as they still reflect broader societal debates, set the agenda for wider discussions in other media and contribute to shaping public perceptions and policy priorities. Our findings show that there were two major social representations of the use of PEP for HIV prevention amongst gay and bisexual men: a positive social representation of PEP as a relatively straightforward solution, where PEP is metaphorically framed as the ‘morning-after pill’, and a more negative social representation of PEP as posing risks and yielding uncertain outcomes. We also found a third social representation for the use of PEP amongst public health care workers, where PEP is represented as needed and deserved. The positive representation generally consisted of anecdotal statements, while the negative representation was substantiated by ‘expert’ and layperson voices, rendering the latter more akin to a hegemonic representation of PEP. We generally found a lack of technical information in all newspapers, and an information gap that might inhibit informed discussion and lead to entrenching polarised social representations and to the stigmatisation of some users of PEP.
Juanne N. Clarke
In this article, I examine the changing representation of medical error in high circulating North American popular magazines in three time periods 1980–1989, 1990–1999 and 2000–2014. Although there were stories of medical error in all the time periods they differed both in their frequency and in the dominant discourses. In the first decade, medical error was represented as an occasional, unique and unusual event. In the next two and a half decades and progressively over time, medical error was represented as commonplace in all parts of the health care system, at all stages of life and from pre-diagnosis to death. Readers are increasingly expected to take responsibility for managing the risk of such errors by continuous, assiduous monitoring of the possible dangers of mistakes made by doctors, in hospitals, in laboratories, that is everywhere in the medical care system. This changing representation of medical error can be linked to the changes in the health care associated with the medicalisation of everyday life, the implementation of neo-liberal ideology and the expansion of the risk society. The individualisation of citizens as isolated, separate units is a bedrock value and assumption of all three of these major discourses. Medicalisation is based on the assumption that health problems develop in the individual body and the individual should follow medical advice to prevent them and should seek medical treatment if such prevention fails. Neo-liberalism devalues the role of the state in ensuring social welfare, emphasising the importance of individual initiative and self-responsibility for health and well-being. In the risk society, the individual is responsible for identifying and managing the risks of everyday life.
In this article, I draw on data from a qualitative study of a group of bodybuilding youth in Poland to examine how these young men form a distinctive subculture in an environment of conflicting influences of a post-communist, lower class environment and those of capitalism, and social advancement. In the study, conducted in 2014 in a small town in north-east of Poland still dealing with aftermath of the collapse of communism, I undertook 26 in-depth interviews with young bodybuilders and, in this article, focus on five cases that highlight the group’s norms, activities, and overall functioning. In this article, I argue that bodybuilding was the foundation of a subcultural style, a means by which individuals could achieve peer respect and a method for them to channel emotions. I found that the activities associated with bodybuilding provided instant gratification. Such activities enabled individuals to see the immediate effect of working out. However, while these activities provided individuals with a way of developing a desirable sculpted body, they also resulted in distortions of self-image and their daily life, which, in turn, cause a deferral in engaging in typical mandated adult roles and, instead, focusing on the individual’s role and position in their group of peers. However, I found that the dynamics and norms of the bodybuilding group did not condone or facilitate, risky behaviours associated with the use of illegal pharmaceuticals that carry significant health risks.
Ellie Lee, Robbie M. Sutton, and Bonny L. Hartley
In this article, we follow the approach taken by Riesch and Spiegalhalter in “Careless pork costs lives’: Risk stories from science to press release to media’ published in this journal, and offer an assessment of one example of a ‘risk story’. Using content and thematic qualitative analysis, we consider how the findings of an article ‘Fetal Alcohol Exposure and IQ at Age 8: Evidence from a Population-Based Birth-Cohort Study’ were framed in the article itself, the associated press release, and the subsequent extensive media coverage. We contextualise this consideration of a risk story by discussing a body of work that critically engages with the development and global proliferation of efforts to advocate for alcohol abstinence to pregnant (and pre-pregnant) women. This work considers the ‘democratisation’ of risk, a term used to draw attention to the expansion of the definition of the problem of drinking in pregnancy to include any drinking and all women. We show here how this risk story contributed a new dimension to the democratisation of risk through claims that were made about uncertainty and certainty. A central argument we make concerns the contribution of the researchers themselves (not just lobby groups or journalists) to this outcome. We conclude that the democratisation of risk was advanced in this case not simply through journalists exaggerating and misrepresenting research findings, but that communication to the press and the initial interpretation of findings played their part. We suggest that this risk story raises concerns about the accuracy of reporting of research findings, and about the communication of unwarrantedly worrying messages to pregnant women about drinking alcohol.
While the majority of colonial public health officials in Africa intermittently used measures for mosquito containment, the government of French West Africa made the creation of what were called mosquito brigades into a vital element of urban sanitary policy. The project seemed to offer a chance to curb the impact of mosquito-borne disease on the colonial economy. Yet, despite the full support of sanitary policy on the federal, colonial, and local levels, the government found that conducting a “War on Mosquitoes” was far more difficult than they originally envisioned. The colonial government’s mosquito brigades were understaffed and often ran into resistance from both the African and European populations. Above all, the government’s urban mosquito control programs failed because their goal of controlling the breeding of mosquitoes lay beyond the limited capabilities of the both local government and the Federation’s health and sanitation services. This paper will examine the origins and fate of the French West African mosquito brigades and provide a context for analyzing their atypical place among colonial efforts at malaria prevention.
This article examines online exchanges of advice and knowledge among patients. It draws a distinction between explicit healthcare knowledge (i.e., facts about symptoms and treatments) and tacit healthcare knowledge (i.e., know-how about navigating the healthcare system). Based on analysis of message board interactions at a prominent online illness community, I find that patients routinely encourage one another to exercise agency strategically in clinical encounters by honing specific interactional skills. I isolate three major techniques that are advocated within the community (affect regulation, information management, and treatment persistence) and frame them as discrete examples of tacit healthcare knowledge. I argue that tacit healthcare knowledge constitutes a potentially potent source of empowerment for patients that can help them to receive their desired form of care from the health system and to negotiate relationships with medical professionals and institutions. I conclude by discussing how the concept of tacit healthcare knowledge further clarifies the wide variety of lay knowledge exchanged among patients online.
Commensuration – the comparison of entities according to a common quantitative metric – is a key process in efforts to rationalize medicine. The push toward evidence-based medicine and quantitative assessment has led to the proliferation of metrics in healthcare. While social scientific attention has revealed the effects of these metrics once institutionalized – on clinical practice, on medical expertise, on outcome assessment, on valuations of medical services, and on experiences of illness – less attention has been paid to the process of developing metrics. This article examines the attempt to create severity scales during the revision to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as a case of failed commensuration. Using data from interviews with participants in the DSM-5 revision (n = 30), I reconstruct the problems that emerged in the DSM-5 Task Force’s effort to develop viable psychometric instruments to measure severity. Framed as a part of a “paradigm shift” in psychiatry, the revision produced ad hoc, heterogeneous severity scales with divergent logics. I focus on two significant issues of metric construction in this case – diagnostic validity and clinical utility. Typically perceived as technical and conceptual challenges of design, I show how these issues were infused with, and undermined by, professional political dynamics, specifically tensions between medical researchers and clinicians. This case reveals that, despite its association with objectivity and transparency, commensuration encompasses more than identifying, operationalizing, and measuring an entity; it demands the negotiation of extra-scientific, non-empirical concerns that get written into medical metrics themselves.
Patricia Kingoria and René Gerretsb
Data fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin – scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive.
We argue that such accounts contain limitations in overlooking data collected in ‘the field’, in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnographies, conducted in 2004–2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers’ accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a ‘tool’ for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socio-economic conditions.
We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication.
Stephanie L. Smith and Jeremy Shiffman
This study investigates a puzzle concerning global health priorities—why do comparable issues receive differential levels of attention and resources? It considers maternal and neonatal mortality, two high-burden issues that pertain to groups at risk at birth and whose lives could be saved with effective intrapartum care. Why did maternal survival gain status as a global health priority earlier and to a greater degree than newborn survival? Higher mortality and morbidity burdens among newborns and the cost-effectiveness of interventions would seem to predict that issue’s earlier and higher prioritization. Yet maternal survival emerged as a priority two decades earlier and had attracted considerably more attention and resources by the close of the Millennium Development Goals era. This study uses replicative process-tracing case studies to examine the emergence and growth of political priority for these two issues, probing reasons for unexpected variance. The study finds that maternal survival’s grounding as a social justice issue spurred growth of a strong and diverse advocacy network and aligned the issue with powerful international norms (e.g. expectations to advance women’s rights and the Millennium Development Goals), drawing attention and resources to the issue over three decades. Newborn survival’s disadvantage stems from its long status as an issue falling under the umbrellas of maternal and child survival but not fully adopted by these networks, and with limited appeal as a public health issue advanced by a small and technically focused network; network expansion and alignment with child survival norms have improved the issue’s status in the past few years.
Sarah L. Bella, Jessica Tyrrella, and Cassandra Phoenix
People’s lived experiences of chronic illness have garnered increasing research interest over the last 30–40 years, with studies recognising the disruptive influence of illness onset and progression, both to people’s everyday lives and to their biographical selves. We extend this body of work, drawing on the experiences of people living with Ménière’s disease; a long-term progressive vestibular disorder characterised by unpredictable episodes of debilitating vertigo, tinnitus and permanent sensorineural hearing loss. In response to calls for more critical examination of the wider biographical contexts in which chronic illnesses are encountered, we draw on 28 in-depth narrative interviews with Ménière’s patients and their family members to discuss how personal chronic illness experiences may be closely entwined with, and deeply shaped by, the life transitions (illness-related and otherwise) of ‘linked others’. Interviews were conducted in south west England from January to June 2015. Focusing on intersecting transitions of parenthood, caregiving and retirement, we explore how and why familial relationships can both facilitate and hinder adaptation to a lifetime of chronically disrupted normalities, contributing to fluctuating experiences of ‘cherished time’, ‘anomalous time’ and ‘turbulent time’. In so doing, we suggest that the onset and progression of chronic illness could usefully be re-conceptualised as one of many ‘biographical oscillations’ encountered during the life course that serve to re-route us between continually shifting life trajectories. In recognising life’s dynamism and challenging the identity-limiting and self-damaging nature of entrenched cultural life course constructions, we suggest value in recognising alternative ways of ‘living well’ when negotiating the wide-ranging biographical maps that life can follow.
Andrea E. Bombaka, Deborah McPhailb, and Pamela Ward
Amidst a barrage of policy documents, bio-medical research, and press items concerned with the “crisis” of obesity, a growing scholarship is concerned with what has come to be known as “obesity stigma.” This scholarship hails from a range of sources including critical obesity scholars who problematize the idea of obesity as a health concern, as well as from “mainstream” organizations and researchers who, while maintaining obesity is a world-wide health problem, also argue that “obese” people are the targets of discrimination. In this paper, we analyze both interpretations of obesity stigma, particularly as that stigma applies to obese women’s experiences of accessing and receiving reproductive care. We describe a qualitative study conducted with 24 overweight and obese women in 2 Canadian cities. Participants related overt and covert experiences of stigma when accessing reproductive care founded in healthcare practitioners’ focus on fetal risk and “mother-blame” which, though partially evidence-based, was interpreted by participants as discriminatory. As such, we maintain that any true interruption of obesity stigma in the reproductive healthcare interaction requires a bridge between critical and mainstream scholarship, and careful attention to the risk-based foci in clinical settings which can be interpreted by clients as moralizing.
Amy Kalera, Nicole Angottib, and Astha Ramaiya
Research on the social impact of ART pivots on questions of individual adherence and community acceptability of treatment programmes. In this paper we examine unexpected and unintended consequences of the scale-up of treatment in rural Malawi, using a unique dataset of more than 150 observational journals from three sites, spanning 2010 to 2013, focusing on men’s everyday conversations. Through thematic content analysis, we explore the emerging perception that the widespread availability of ART constitutes a form of social danger, as treatment makes it difficult to tell who does or does not have AIDS. This ambiguity introduced through ART is interpreted as putting individuals at risk, because it is no longer possible to tell who might be infected – indeed, the sick now look healthier and “plumper” than the well. This ambivalence over the social impact of ART co-exists with individual demand for and appreciation of the benefits of treatment.
Joan H Robinson
This paper explores the settlement process of one of the most common home diagnostic tools currently in use, the home pregnancy test. The controversial new device appeared to threaten the jurisdiction of both doctors and Food and Drug Administration regulations, while it aligned with the women’s health movement’s goals. But this study finds a more nuanced narrative: one of boundaries and positions that at once were blurry, later shifted, and were ultimately aligned without compromising the credibility of doctors or the legal system. To understand this process, the roles of court decisions and regulations are explained by stages of juris-technical accordance. In this case, rather than restricting technological innovation, legal innovation provided pathways for widespread acceptance of the home pregnancy test by various groups. As more tools move from expert users to layperson users, this paper demonstrates the utility of examining existing juris-technical assemblages as we consider the future of self-monitoring and self-diagnosis.
Research on autism and environmental risk factors has expanded substantially in recent years. My analysis draws attention to the regimes of perceptibility that shape how the environment is materialized in post-genomic science. I focus on how more complex narratives of autism’s causes and social anxieties surrounding child development have helped situate autism risk in women’s bodies before and during pregnancy. This has resulted in what I call the maternal body as environment in autism science. I show that this figure involves three characteristics: the molecularization of the environment, an individualization of risk, and the internalization of responsibility. I argue that these three features point to a new spatial and temporal politics of risk and responsibility that may heighten social and medical surveillance of women’s bodies and decisions, eclipsing larger questions about the uneven distribution of exposures in society and more holistic understandings of health that include neurodiversity. I conclude by considering what the maternal body as environment signals for women, social justice, and the politics of environmental health in the post-genomic era.