Jens O. Zinn
The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.
Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson
Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy. In time of pandemic influenza, however, members of the general public are asked to enact non-pharmaceutical infection control measures such as hygiene and social distancing. Drawing on the concepts of manufactured risk and ontological insecurity, we use data from interviews and focus groups we undertook in 2011 and 2012 in Melbourne, Sydney and Glasgow, to examine how members of the general public understood the ‘fuzzy’ nature of the influenza virus and reconciled this with infection control measures. We found that participants in our research acknowledged: the difficulty of avoiding infection from influenza; impediments to accurate diagnosis and that infection control measures proposed by public health messages were compromised by the ‘fuzzy’ nature of the virus. However, we found that participants valued prevention measures, not necessarily because they were seen to be effective, but because they supplied security in the face of influenza’s uncertainties and the wider proliferation of daily and biographical risks.
Alexandra Farren Gibson, Christina Lee & Shona Crabb
Western understandings of breast cancer are primarily shaped both by neo-liberal, individual-oriented approaches to health and illness and by ‘consumer-led’ health movements. In this ‘healthist’ context, diagnosis of breast cancer typically marks a crisis in women’s lives, which may prompt them to account for the development of the illness and reposition themselves as self-governing individuals who have control over their health and who can manage future ‘risks’. We present a thematic discourse analysis of interviews conducted in 2012 with 27 women across Australia who have had breast cancer. Using the lenses of ‘healthism’ and ‘risk management’ in this analysis, we identified a cultural discourse of ‘individual responsibility and empowerment’. Women utilised this discourse while ‘accounting’ for their illness by engaging in ‘health talk’ and ‘risk talk’. While many women emphasised the shock of the diagnosis in light of having been ‘always healthy’, others expressed the inevitability of ‘risk’ on the basis of individual behaviours or genetic history. This discourse provided women one way to explain and make sense of their illness, potentially enabling them to cope with the fear and uncertainty of breast cancer. Drawing on this discourse, women could also position themselves in socially desirable and empowered ways as responsible health consumers, as self-governing and as taking responsibility in dealing with the illness and remaining vigilant for recurrence. We discuss how this neo-liberal approach can be empowering, but also has the effect of positioning women as primarily responsible for managing their health and their illness.
Áine Regan, Afrodita Marcu, Liran Christine Shan, Patrick Wall, Julie Barnett & Áine McConnon
Understanding how consumers react to what is happening as a crisis evolves is crucial for those charged with risk management and risk communication. Responsibility, blame and accountability are important concepts in any crisis, particularly when consumer confidence has been damaged. In this article, we examine to what extent, and to what effect, responsibility, blame and accountability figure in consumer reactions in the immediate aftermath of a food crisis. The data we draw on in this article is derived from an online engagement study that took place in ‘real time’ as the crisis unfolded. Through this study, we were able to explore how consumers responded to the adulteration of processed beef products with horsemeat in early 2013 in Ireland and the UK. We found that consumers attributed causal responsibility and allocated blame for the adulteration to three factors: the deliberately deceitful practices of the food industry, the complexity of the food supply chain and demand from (other) consumers for cheap food. We found that consumers were willing to begin the process of rebuilding their confidence in the food system and accountability was viewed as the primary means for restoring confidence.
In this article, I develop the social amplification of risk framework focusing on organisational strategies that seek to minimise or conceal certain risks rather than amplifying them. I link this analysis to theoretical work on the social production of ignorance. I draw on data from a case study of the French association of salt producers that explores the ways in which the association with limited resources sought to counteract public health messages that salt posed a risk to health. I show that the association used four main strategies in an attempt to manufacture ignorance in relation to the nutritional risks of salt: indirect communication and dissimulation, denial, diversion and undermining or intimidating opponents. I conclude that these strategies are part of a repertoire of action which is available to many industrial organisations that are trying to counteract public health claims that their products are a danger to health. I argue that it is important to integrate studies of the social amplification and attenuation of risk with analysis of the resources and strategies used to minimise or amplify risk. I suggest that the strategies used by certain powerful actors to minimise or conceal certain health or environmental risks should be analysed more closely in risk studies.
Diana Espírito Santo
This article argues that in Cuban Creole espiritismo practices, ritually generated ‘knowledge’ has ontological, rather than just epistemological, effects, independent of the role of cognition. I will show that knowledge is experienced as a fluid, moving ‘substance’ external to the body that can accumulate, weigh down, hang suspended, and dissipate; it is also responsive to mediums‘ descriptive speech, becoming an object of vision-knowledge at the same time that it is seen and spoken of collectively. I will also show that the circulation of knowledge ‘substances’ should be seen not as metaphorical but as tied to processes of making people, and ask whether knowledge can figure not just as something intersubjective or relational but as something substantive, even physiological.
Dogs in the Moscow Metro, some say, have evolved a unique sentience: they navigate a human-scaled infrastructure and interpret human motives there. Such assertions about dogs, and encounters with them on public transit, invoke Soviet-era moral projects that wove sentiment (‘compassion’) and affect (‘attention’) through technical dreams: to erase material suffering and physical violence, to traverse the globe and the cosmos, to end wars and racisms. Dogs, after all, helped defeat the Nazis and took part in the space race. In the Metro now, their wags and barks stir debate about access and exclusion, resonating across assemblages of materials and meanings, social connections and signs. MetroDogs invite us to theorize the ways people extend connections in the moment well beyond the here-and-now.
Lydia Zacher Dixon
Mexican midwives have long taken part in a broader Latin American trend to promote “humanized birth” as an alternative to medicalized interventions in hospital obstetrics. As midwives begin to regain authority in reproductive health and work within hospital units, they come to see the issue not as one of mere medicalization but of violence and violation. Based on ethnographic fieldwork with midwives from across Mexico during a time of widespread social violence, my research examines an emergent critique of hospital birth as a site of what is being called violencia obstétrica (obstetric violence). In this critique, women are discussed as victims of explicit abuse by hospital staff and by the broader health care infrastructures. By reframing obstetric practices as violent—as opposed to medicalized—these midwives seek to situate their concerns about women’s health care in Mexico within broader regional discussions about violence, gender, and inequality.
Were you born deaf?
Yes, I was born deaf.
How come? You have hearing parents, right? [Being born deaf is usually linked to having deaf parents]
(slightly confused) I don’t know … maybe because of witches.
Ama Korkor [Kwame’s younger deaf sister] told me that she was born hearing.
That is not true, we were all born deaf: me, Kofi Pare, Ama Korkor, Yaa Bomo, and Yaa Aketewa [i.e., his four younger deaf siblings]
James B. Waldram
Traditional or indigenous healing is often assumed to involve rich forms of dialogical and symbolic communication between healer and patient that serve to explain its salience and efficacy. An ethnographic study of Q’eqchi Maya healing in Belize suggests, however, that communication in some forms of indigenous healing may also be minimal and peripheral to treatment and more akin to that of biomedicine than so-called traditional medicine. While communication may still involve symbolic, intercorporeal, and other forms of subtle intersubjective connection, anthropologists often overreach in an effort to portray such healing systems in contradistinction to biomedicine. It is argued here that Q’eqchi healing might best be thought of as a form of empirically based restorative medicine in which communication is purely instrumental to the healer’s task of diagnosing and eliminating pathology and restoring the health of the patient.
Dona Lee Davis, Anita Maurstad & Sarah Dean
Pink t-shirts that proclaim “My horse is my therapist” are for sale in a wide variety of horse-sport catalogues. Literature on the healing power of human–nonhuman animal encounters and the practice of a variety of animal-assisted therapy programs, such as hippotherapy and equine-facilitated therapy, show dramatic growth over the last 30 years. Less attention is paid to the role that horse–human interactions may play in more popular accountings of well-being and impairment among a sample of everyday riders. Analysis of 50 lifecycle narratives, collected from accomplished but nonprofessional equestriennes, demonstrates the complex and ambiguous ways in which women draw from their experience of human–horse relationships as they challenge and transgress the borderlands between pleasure and impairment. Combining the perspectives of multispecies ethnography and medical anthropology that engages the complexities of well-being, analysis is informed by and contributes to recent controversies concerning the medicalization of normality and pleasure in DSM 5.
This article examines appetite loss among married women living in a Delhi slum. Research has shown that through feeding, women in South Asia gain domestic authority and become part of the families into which they marry. I use observations and interviews collected over 14 months in one poor urban community to explore the social dimensions of feeding and abstaining from eating in a context of marital and food insecurity. Results show that women report appetite loss in response to domestic violence, the stress of marital fights, and fears about the dissolution of their marriages. In other instances, women report that they forget to eat because of dedication to caregiving or refuse to eat because of their husbands’ failure to attend to their needs. In the context of this research, I show that food insecurity research would benefit from considering the kinship and gender politics involved in feeding and eating behaviors.
Lance D. Laird, Linda L. Barnes, Jo Hunter-Adams, Jennifer Cochran & Paul L. Geltman
The Arabic miswak (Somali, adayge) is a tooth-cleaning stick from the Salvadora persica plant. In this article, we trace the social life of a “thing,” examining meanings inscribed in the stick brush, drawing on interviews with 82 Somali refugees in Massachusetts and an analysis of local and transnational science and marketing. The miswak toothbrush symbolizes relationships to nature, homeland culture, global Islam, globalizing dental medicine, and the divine as it intersects with the lives of producers, marketers, distributors, and users, creating hybrid cultural forms in new contexts.
Devon E. Hinton, Ria Reis & Joop de Jong
“Thinking a lot” (TAL)—also referred to as “thinking too much”—is a key complaint in many cultural contexts, and the current article profiles this idiom of distress among Cambodian refugees. The article also proposes a general model of how TAL generates various types of distress that then cause PTSD-type psychopathology, a model we refer to as the TAL–PTSD model. As tested in this Cambodian refugee sample, the model is supported by the following: (1) the close connection of TAL to PTSD as shown by odds ratio (OR = 19.6), correlation (r = .86), and factor loading; and (2) the mediation of most of the effect of TAL on PTSD by TAL-caused somatic symptoms, catastrophic cognitions, trauma recall, insomnia, and irritability. The questionnaire used in the present study is provided and can be used to examine TAL in other cultural and global contexts to advance the study of this commonly encountered distress form.
Elisa J. Sobo
U.S. media reports suggest that vastly disproportionate numbers of un- and under-vaccinated children attend Waldorf (private alternative) schools. After confirming this statistically, I analyzed qualitative and quantitative vaccination-related data provided by parents from a well-established U.S. Waldorf school. In Europe, Waldorf-related non-vaccination is associated with anthroposophy (a worldview foundational to Waldorf education)—but that was not the case here. Nor was simple ignorance to blame: Parents were highly educated and dedicated to self-education regarding child health. They saw vaccination as variously unnecessary, toxic, developmentally inappropriate, and profit driven. Some vaccine caution likely predated matriculation, but notable post-enrollment refusal increases provided evidence of the socially cultivated nature of vaccine refusal in the Waldorf school setting. Vaccine caution was nourished and intensified by an institutionalized emphasis on alternative information and by school community norms lauding vaccine refusal and masking uptake. Implications for intervention are explored.
Ruth P. Fitzgerald, Michael Legge & Julie Park
Using a Foucauldian biopower analytic, this article combines insights from several ethnographic research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand. We show that divergent or shared public, private, state, individual, and community moral reasoning styles become highly politicized truth discourses that have the potential to, and at times do, affect one another, modifying a dominant, state-supported, principal-based bioethics framework. The styles of moral reasoning that we identify pivot on an aspirational cultural ideal of the provision of choice to citizens, which is taken as an appropriate position from which to regulate selective reproductive technologies.
Ya’arit Bokek-Cohen & Limor Dina Gonen
The article proposes sociological insights into the sperm banking industry, derived from a qualitative study of extended sperm donor profiles in six large American sperm banks. We content analyzed the extended profiles and baby photos of 120 randomly selected donors who appear in the catalogues. Inspired by Baudrillard’s and Illouz’s writings on the postmodern era, we show how sperm banks de-commodify sperm, personify donations, facilitate the romanticization of the donor–recipient bond, and add an emotional context to the economic transaction. The donors’ extended profiles constitute a simulacrum of a living male partner and fulfill recipients’ fantasies. This creates a powerful reenchantment mechanism counterbalancing the anonymity and disenchantment characterizing donor insemination technology in particular and the postmodern spirit in general.
Type 2 diabetes within UK South Asian populations has increasingly become the focus of health science discourse. Growing rates across the globe have been a public health concern for a number of decades. Diabetes discourse has focused on lifestyle and a generalized idea of “cultural” factors as contributory factors. These have become part of what I identify as a South Asian diabetes “risk-package.” This risk formulation is extended to an additional genetic discourse which generates new causal explanations for this heightened “risk.” South Asian groups are already the subject of discursive, racialized risk constructions, which positions them as active owners of “risky culture.” The mobilization of genetic arguments repositions them as additionally passive owners of “risky genes.” I argue that the use of racial categories in genetic diabetes science, despite the relative uncertainty and ambiguity of scientific knowledge claims, is problematic and requires critical re-situating.
Ben Merriman & Santiago J. Molina
In recent years, human genetic research has developed rapidly, and the cost of sequencing and computational technology continues to decline. This research has also been pushed forward by a major organizational innovation: the development of large, open-access databases of human gene sequences or biospecimens known as community resource projects. This article describes a challenge for the governance of these projects: conceptions of population vary significantly across organizational contexts. This makes it difficult to manage risk appropriately, as measures intended to address hazards to one kind of population may be inadequate for others. Unstable conceptions of population may also make it difficult to identify the stakeholders interested in the governance of these projects. This argument is developed by examining two cases, the International HapMap Project and 1000 Genomes Project, which make use of at least six distinct conceptions of population in different organizational segments.
The UK’s publically available blood stem cell infrastructure has undergone significant transformation in recent years as umbilical cord blood has joined adult donors as a viable clinical stem cell source. This paper describes the development of a collaborative governance arrangement between the UK’s two domestic providers of blood stem cells: a public body and a charity. The paper argues that the collaborators, who stand to benefit from the alignment, legitimize their work through appeals to public good. It suggests that appeals to buy British obscure an inevitable requirement to cultivate international, networked stem cell exchange; the paper also explores collaborators’ reinforcement of a supposed connection between human leukocyte antigen tissue type and ethnicity through claiming that the UK’s ethnic minorities face an “unmet need.” By way of this, the paper demonstrates the interconnection of collaborators’ institutional interests with concerns for national health equity.
In 1990, Chile transitioned to democracy after 17 years of military rule. The new democracy built the country’s first environmental institutions and began efforts to revitalize science, among them attempts to connect scientific expertise to public decision-making. Just over a decade into these efforts, conflicts over the environmental impacts of large industrial projects began to multiply. These environmental conflicts were often also credibility contests, where the authority of science to speak to public issues was contested. Two such conflicts, a gold mine called Pascua Lama and a hydroelectric project called HidroAysén, enrolled several scientific teams, yet in each case the state made its final decision on each project autonomously from science. Though some scientists became central participants in each conflict, carving out for themselves access to needed resources that they used to practice ever-narrower forms of science, their credibility was called into question by many of their scientific colleagues. Chile’s scientific community fractured over how to define credible science. Divisive and decisive issues included the source of funding, ethics, access to resources, and being local. Although some scientists and non-scientists used boundary work to try to affirm the authority of science, no stable map of scientific credibility resulted from these efforts. Chile’s new democracy is more plural than its recent military dictatorship but still lacks adequate spaces in which to negotiate what counts as credible science. These experiences highlight the need to better understand how science fares through regime transitions and what it contributes to emerging democracies.
Catharina Landström, Richard Hauxwell-Baldwin, Irene Lorenzoni & Tee Rogers-Hayden
Frequent claims that publics ‘misunderstand’ science ignore the contested definition of scientific uncertainty itself. Scientific uncertainty means different things in the natural sciences, social sciences and the humanities, while public controversies show that interpretations of scientific uncertainty have different implications for policy and decision-making. This prompts analysis of the ways that experts view scientific uncertainty and how they characterise the (mis)understandings of this uncertainty by policy-makers, media and publics. Experts from diverse academic fields define scientific uncertainty differently depending on their disciplinary background. For example, mathematics provides experts from the natural sciences with a practice language that facilitates communication with those sharing this cultural competence, but it does not suffice for engaging with wider audiences. Further, experts’ views of diverse publics come across as folk theories, in Arie Rip’s terms, which, compiled from disparate pieces of information, can be used to fill a gap in the knowledge about publics.
In the winter of 1849–1850 in Königsberg, German physiologist Hermann von Helmholtz (1821–1894) conducted pioneering measurements concerning the propagation speed of stimulations in the living nerve. While recent historians of science have paid considerable attention to Helmholtz’s uses of the graphic method, in particular his construction of an instrument called “myographion,” this paper draws attention to the inscription surfaces that he used in effective ways for capturing and transmitting his findings. Against the background of recent archival findings, I show that Helmholtz used isinglass copies of his graphical recordings in order to communicate the basic principle of previous measurements to the academic public. As the correspondence with his Berlin-based friend and colleague Emil du Bois-Reymond (1818–1896) and the subsequent development of the myographion make clear, these curves were not meant as measurements but functioned as demonstrations. In other words, Helmholtz’s curves did provide “images of precision” (Olesko and Holmes 1993) – but they were not precise images.
Glass vessels such as flasks and test tubes play an ambiguous role in the historiography of modern laboratory research. In spite of the strong focus on the role of materiality in the last decades, the scientific glass vessel – while being symbolically omnipresent – has remained curiously neglected in regard to its materiality. The popular image or topos of the transparent, neutral, and quasi-immaterial glass container obstructs the view of the physico-chemical functionality of this constitutive inner boundary in modern laboratory environments and its material historicity. In order to understand how glass vessels were able to provide a stable epistemic containment of spatially enclosed experimental phenomena in the new laboratory ecologies emerging in the nineteenth and early twentieth century, I will focus on the history of the material standardization of laboratory glassware. I will follow the rise of a new awareness for measurement errors due to the chemical agency of experimental glass vessels, then I will sketch the emergence of a whole techno-scientific infrastructure for the improvement of glass container quality in late nineteenth-century Germany. In the last part of my argument, I will return to the laboratory by looking at the implementation of this glass reform that created a new oikos for the inner experimental milieus of modern laboratory research.
Alexander von Schwerin
This paper brings together the history of risk and the history of DNA repair, a biological phenomenon that emerged as a research field in between molecular biology, genetics, and radiation research in the 1960s. The case of xeroderma pigmentosum (XP), an inherited hypersensitivity to UV light and, hence, a disposition to skin cancer will be the starting point to argue that, in the 1970s and 1980s, DNA repair became entangled in the creation of new models of the human body at risk – what is here conceptually referred to as the vulnerability aspect of body history – and new attempts at cancer prevention and enhancement of the body associated with the new flourishing research areas of antimutagenesis and anticarcinogenesis. The aim will be to demonstrate that DNA repair created special attempts at disease prevention: molecular enhancement, seeking to identify means to increase the self-repair abilities of the body at the molecular level. Prevention in this sense meant enhancing the body’s ability to cope with the environmental hazards of an already toxic world. This strategy has recently been adopted by the beauty industry, which introduced DNA care as a new target for skin care research and anti-aging formulas.
The sect of ancient Greek physicians who believed that medical knowledge came from personal experience also read the Hippocratic Corpus intensively. While previous scholarship has concentrated on the contributions of individual physicians to ancient scholarship on Hippocrates, this article seeks to identify those characteristics of Empiricist reading methodology that drove an entire medical community to credit Hippocrates with medical authority. To explain why these physicians appealed to Hippocrates’ authority, I deploy surviving testimonia and fragments to describe the skills, practices, and ideologies of the reading community of ancient Empiricist physicians over the one-hundred year period 175 to 75 BCE. The Empiricist conception of testimony taken on trust operative within that reading community elided the modern distinction between personal and institutional targets of trust by treating Hippocratic writings as revelatory of the moral character of Hippocrates as an author. Hippocrates’ moral character as an honest witness who accurately observed empirical phenomena aligned with the epistemic virtues of an empirical medical community who believed that medical knowledge came from personal experience. So I argue that Empiricist reading culture constructed a moral authority of honesty and accuracy from Hippocratic writings, enlarged the personal authority of Hippocrates among medical readers, and contributed to the development of Hippocratism.
This paper examines the intertwined relations between eugenics and medical genetics from a Swedish perspective in the 1940s and 1950s. The Swedish case shows that a rudimentary form of genetic counseling emerged within eugenic practices in the applications of the Swedish Sterilization Act of 1941, here analyzed from the phenomenon of “heredophobia” (ärftlighetsskräck). At the same time genetic counseling also existed outside eugenic practices, within the discipline of medical genetics. The paper argues that a demand for genetic counseling increased in the 1940s and 1950s in response to a sense of reproductive responsibility engendered by earlier eugenic discourse. The paper also questions the claim made by theoreticians of biopolitics that biological citizens have emerged only during the last decades, especially in neoliberal societies. From the Swedish case it is possible to argue that this had already happened earlier in relation to the proliferation of various aspects of eugenics to the public.
Cliodhna O’Connor & Helene Joffe
In the burgeoning debate about neuroscience’s role in contemporary society, the issue of brain optimization, or the application of neuroscientific knowledge and technologies to augment neurocognitive function, has taken center stage. Previous research has characterized media discourse on brain optimization as individualistic in ethos, pressuring individuals to expend calculated effort in cultivating culturally desirable forms of selves and bodies. However, little research has investigated whether the themes that characterize media dialogue are shared by lay populations. This article considers the relationship between the representations of brain optimization that surfaced in (i) a study of British press coverage between 2000 and 2012 and (ii) interviews with forty-eight London residents. Both data sets represented the brain as a resource that could be manipulated by the individual, with optimal brain function contingent on applying self-control in one’s lifestyle choices. However, these ideas emerged more sharply in the media than in the interviews: while most interviewees were aware of brain optimization practices, few were committed to carrying them out. The two data sets diverged in several ways: the media’s intense preoccupation with optimizing children’s brains was not apparent in lay dialogue, while interviewees elaborated beliefs about the underuse of brain tissue that showed no presence in the media. This article considers these continuities and discontinuities in light of their wider cultural significance and their implications for the media–mind relationship in public engagement with neuroscience.
Sara Tocchetti & Sara Angeli Aguiton
Biotechnology’s promises has been widely recognized as a major enterprise accelerating the commodification of the biological. After the 9/11 events and the subsequent anthrax letters, biotechnologies have additionally been described as contributing to the construction of biosecurity risks. This paper proposes to investigate the collaboration between the FBI and the DIYbio (Do-It-Yourself biology) network as a case study illustrating the productive entanglement of biological risks and promises. To do so, the paper explores the social construction of risks and promises associated with the vision of distributed biotechnologies as enacted in this collaboration. We argue that the FBI needs to police the DIYbio network in order to disseminate a specific notion of bioterrorist risk, while, in a counter-intuitive manner, the DIYbio network benefits from being policed by the FBI as it helps them disseminate their socio-technological vision. If the entanglement of technoscientific risks and promises is a well established finding of the STS literature, our case study suggests that such entanglement now additionally comprises the sphere of biosecurity and the promises of a distributed biotechnology available to everyone.
Helena Machado & Susana Silva
The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile to be included in the Portuguese forensic DNA database. The analysis is undertaken from the perspective of biological citizenship and the simultaneous empowering and disempowering effects of surveillance. The results indicate a pragmatic ethical framework that is linked to the cultural and emotional elements of altruism, resistance, stigma, and social representations of what is beneficial or harmful to the individual and to society. These subjectivities are anchored in commonplace images and metaphors for genetics, DNA, and forensic science that circulate in the messages transmitted by the media which pervade everyday life; hierarchies of trust in science and the justice system; and moral categories associated with the individual self-judgment in relation to crime, surveillance, and social order.
This paper challenges conventional narratives on the role of international non-governmental organisations (INGOs) in the delivery of health services in Tanzania. Adopting an historical gaze which focuses on the 1960s to mid-1980s the paper argues that the ‘franchise state’ in the Tanzanian health system was not created by collusion between international donors and INGOs, underpinned by a set of health sector reforms that advocated the use of non-state actors; but was rather the legacy of the colonial health system bequeathed to the post-independence state. It was a system in which voluntary non-state actors (but, importantly, not INGOs) were already entrenched as key providers; and in which many of the features of the franchise state – fragmentation, structural weaknesses, lack of accountability to users – were already long established. But if INGOs did not create these features, as their critics attest, they did contribute to the maintenance and extension of these features. The short-term perspectives of NGOs, their small-scale piecemeal engagement, and the extra demands they placed upon their voluntary actor partners, left little scope for the development of sustainable, national and accountable solutions to the health needs of the country. In exploring these ideas, the paper contributes to a more nuanced understanding of the path dependency that created Tanzania’s health system. The analysis also contributes to a deepening of the understanding of the make-up of the voluntary sector beyond a narrow gaze on the institution of the INGO.
Chimaraoke O. Izugbara, Carolyne Egesa & Rispah Okelo
Public health discourses on safe abortion assume the term to be unambiguous. However, qualitative evidence elicited from Kenyan women treated for complications of unsafe abortion contrasted sharply with public health views of abortion safety. For these women, safe abortion implied pregnancy termination procedures and services that concealed their abortions, shielded them from the law, were cheap and identified through dependable social networks. Participants contested the notion that poor quality abortion procedures and providers are inherently dangerous, asserting them as key to women’s preservation of a good self, management of stigma, and protection of their reputation, respect, social relationships, and livelihoods. Greater public health attention to the social dimensions of abortion safety is urgent.
Isabelle Ville & Véronique Mirlesse
Prenatal diagnosis (PND) has gradually established itself as part of the pregnancy monitoring process, with a view to reducing the number of births of children exposed to disability by combining the use of biomedical tools with laws that authorise abortion in cases of foetal pathology. This article looks at how laws which vary from one country to another modulate the way in which PND practices are organised on a daily basis, determine the discourse of practitioners and lead them to adopt specific stances during prenatal consultations with couples coping with a foetal anomaly. We present a comparative ethnographic study, which took place between 2009 and 2011 in France and Brazil, in reference units, based on observation of consultations, professional meetings, and interviews with health practitioners. The fact that access to abortion due to foetal pathology is possible in France, and criminalised in Brazil, conditions how doctors analyse the framework of their medical practice and approach the issue of disability with couples during consultations. In France, practitioners would appear to be satisfied with a professional framework that they themselves created. Faced with prognostic uncertainty, the legal obligation to inform encourages them to discuss all of the potential complications of the diagnosed anomalies and leads them to provide probabilistic information about the life of the child to be, supported by evidence-based medicine. In Brazil, in the public service, the lack of access to abortion has created a malaise among practitioners who criticise this impediment to the objective nature of their practice and to the quality of the information that they provide. Some use prognostic uncertainty to direct the thoughts of women and couples towards the dynamics proper to each individual human trajectory within a given family and a specific social environment.
Paul H. Thibodeau, Victoria L. Perko & Stephen J. Flusberg
In 2013, the American Medical Association made the controversial decision to classify obesity as a “disease” in the hopes of encouraging research, reducing stigma, and ultimately lowering the prevalence of the condition. Critics argued that the disease label would reduce feelings of personal responsibility among the obese and therefore discourage healthy self-regulation, a possibility that has received some recent support in the psychological literature. However, public health issues such as obesity are complex and depend not only on personal action, but also on wider societal trends such as social policy interventions. In the present study, we systematically investigated the relationship between four narrative classifications of obesity (“sin”, “addiction”, “disorder” and “environment”) and support for a variety of policy interventions designed to address the issue. An initial norming study revealed that the obesity narratives differed reliably in how much they attributed blame for the condition to the individual versus the environment. A correlational study showed that participants who agreed with narratives that blamed the individual were more likely to support policy interventions that penalized people for being overweight while participants who agreed with narratives that blamed the environment were more likely to support policy interventions designed to protect people suffering from obesity. A follow-up experiment revealed that these narratives had causal power as well: participants exposed to just one of the narratives were more likely to support policy interventions consistent with the blame attribution of the narrative for both obesity as well as anorexia. Individual differences in political ideology and personal experience with weight issues also influenced agreement with the narratives and support for particular policy interventions across these studies. These findings suggest that public messaging campaigns that utilize extended narratives may be a useful tool for increasing support for effective policy interventions.
Sudhanshu Handa, Amber Peterman, Carolyn Huang, Carolyn Halpern, Audrey Pettifor & Harsha Thirumurthy
There is promising evidence that poverty-targeted cash transfer programs can have positive impacts on adolescent transitions to adulthood in resource poor settings, however existing research is typically from small scale programs in diverse geographic and cultural settings. We provide estimates of the impact of a national unconditional cash transfer program, the Kenya Cash Transfer for Orphans and Vulnerable Children, on pregnancy and early marriage among females aged 12 to 24, four years after program initiation. The evaluation was designed as a clustered randomized controlled trial and ran from 2007 to 2011, capitalizing on the existence of a control group, which was delayed entry to the program due to budget constraints. Findings indicate that, among 1549 females included in the study, while the program reduced the likelihood of pregnancy by five percentage points, there was no significant impact on likelihood of early marriage. Program impacts on pregnancy appear to work through increasing the enrollment of young women in school, financial stability of the household and delayed age at first sex. The Kenyan program is similar in design to most other major national cash transfer programs in Eastern and Southern Africa, suggesting a degree of generalizability of the results reported here. Although the objective of the program is primarily poverty alleviation, it appears to have an important impact on facilitating the successful transition of adolescent girls into adulthood.
Maria Paola Bertone & Sophie Witter
The need for evidence-based practice calls for research focussing not only on the effectiveness of interventions and their translation into policies, but also on implementation processes and the factors influencing them, in particular for complex health system policies. In this paper, we use the lens of one of the health system’s ‘building blocks’, human resources for health (HRH), to examine the implementation of official policies on HRH incentives and the emergence of informal practices in three districts of Sierra Leone. Our mixed-methods research draws mostly from 18 key informant interviews at district level. Data are organised using a political economy framework which focuses on the dynamic interactions between structure (context, historical legacies, institutions) and agency (actors, agendas, power relations) to show how these elements affect the HRH incentive practices in each district. It appears that the official policies are re-shaped both by implementation challenges and by informal practices emerging at local level as the result of the district-level dynamics and negotiations between District Health Management Teams (DHMTs) and nongovernmental organisations (NGOs). Emerging informal practices take the form of selective supervision, salary supplementations and per diems paid to health workers, and aim to ensure a better fit between the actors’ agendas and the incentive package. Importantly, the negotiations which shape such practices are characterised by a substantial asymmetry of power between DHMTs and NGOs. In conclusion, our findings reveal the influence of NGOs on the HRH incentive package and highlight the need to empower DHMTs to limit the discrepancy between policies defined at central level and practices in the districts, and to reduce inequalities in health worker remuneration across districts. For Sierra Leone, these findings are now more relevant than ever as new players enter the stage at district level, as part of the Ebola response and post-Ebola reconstruction.
Jane Farmer, Margaret Currie, Amanda Kenny & Sarah-Anne Munoz
This article explores what happened, over the longer term, after a community participation exercise to design future rural service delivery models, and considers perceptions of why more follow-up actions did or did not happen. The study, which took place in 2014, revisits three Scottish communities that engaged in a community participation research method (2008–2010) intended to design rural health services. Interviews were conducted with 22 citizens, healthcare practitioners, managers and policymakers all of whom were involved in, or knew about, the original project. Only one direct sustained service change was found – introduction of a volunteer first responder scheme in one community. Sustained changes in knowledge were found. The Health Authority that part-funded development of the community participation method, through the original project, had not adopted the new method. Community members tended to attribute lack of further impact to low participation and methods insufficiently attuned to the social nuances of very small rural communities. Managers tended to blame insufficient embedding in the healthcare system and issues around power over service change and budgets. In the absence of convincing formal community governance mechanisms for health issues, rural health practitioners tended to act as conduits between citizens and the Health Authority. The study provides new knowledge about what happens after community participation and highlights a need for more exploration.
Kate Sweeny, Sara E. Andrews, S. Katherine Nelson & Megan L. Robbins
Guided by the uncertainty navigation model, this study examined experiences of uncertainty associated with trying to conceive and identified predictors of this experience using a multi-method approach.
429 American adults from Amazon’s Mechanical Turk who had a child under age three completed online questionnaires regarding their experiences trying to conceive, including recollections of psychological adjustment, use of coping strategies, and individual and situational variability. Then they provided open-ended reflections of their experience trying to conceive. Participants’ descriptions were analyzed for word use using LIWC, a text-analysis software program, to obtain an unobtrusive and pseudo-observational measure of coping resources.
Consistent with the uncertainty navigation model, recollections of distress as individuals tried to conceive were associated with lower levels of dispositional optimism; intolerance of uncertainty; fewer social, emotional, and cognitive resources (reflected in word use); placing greater importance on conception; lower risk for infertility; and less searching for meaning in life.
This study revealed many novel insights regarding the experience of trying to conceive, including protective factors and vulnerabilities that may buffer or heighten the distress associated with this experience.
Joanna Petrasek MacDonald, Ashlee Cunsolo Willox, James D. Ford, Inez Shiwak, Michele Wood, IMHACC Team & Rigolet Inuit Community Government
The Canadian Arctic is experiencing rapid changes in climatic conditions, with implications for Inuit communities widely documented. Youth have been identified as an at-risk population, with likely impacts on mental health and well-being. This study identifies and characterizes youth-specific protective factors that enhance well-being in light of a rapidly changing climate, and examines how climatic and environmental change challenges these. In-depth conversational interviews were conducted with youth aged 15–25 from the five communities of the Nunatsiavut region of Labrador, Canada: Nain, Hopedale, Postville, Makkovik, and Rigolet. Five key protective factors were identified as enhancing their mental health and well-being: being on the land; connecting to Inuit culture; strong communities; relationships with family and friends; and staying busy. Changing sea ice and weather conditions were widely reported to be compromising these protective factors by reducing access to the land, and increasing the danger of land-based activities. This study contributes to existing work on Northern climate change adaptation by identifying factors that enhance youth resilience and, if incorporated into adaptation strategies, may contribute to creating successful and effective adaptation responses.
Graham P. Martin, Lorna McKee & Mary Dixon-Woods
Formal metrics for monitoring the quality and safety of healthcare have a valuable role, but may not, by themselves, yield full insight into the range of fallibilities in organizations. ‘Soft intelligence’ is usefully understood as the processes and behaviours associated with seeking and interpreting soft data—of the kind that evade easy capture, straightforward classification and simple quantification—to produce forms of knowledge that can provide the basis for intervention. With the aim of examining current and potential practice in relation to soft intelligence, we conducted and analysed 107 in-depth qualitative interviews with senior leaders, including managers and clinicians, involved in healthcare quality and safety in the English National Health Service. We found that participants were in little doubt about the value of softer forms of data, especially for their role in revealing troubling issues that might be obscured by conventional metrics. Their struggles lay in how to access softer data and turn them into a useful form of knowing. Some of the dominant approaches they used risked replicating the limitations of hard, quantitative data. They relied on processes of aggregation and triangulation that prioritised reliability, or on instrumental use of soft data to animate the metrics. The unpredictable, untameable, spontaneous quality of soft data could be lost in efforts to systematize their collection and interpretation to render them more tractable. A more challenging but potentially rewarding approach involved processes and behaviours aimed at disrupting taken-for-granted assumptions about quality, safety, and organizational performance. This approach, which explicitly values the seeking out and the hearing of multiple voices, is consistent with conceptual frameworks of organizational sensemaking and dialogical understandings of knowledge. Using soft intelligence this way can be challenging and discomfiting, but may offer a critical defence against the complacency that can precede crisis.
Mengzhu Fu, Daniel J. Exeter & Anneka Anderson
Census-based deprivation indices have been widely used in Aotearoa/New Zealand, Canada and UK to measure area-based socio-economic inequalities. This paper examines the indicators used in census-based area deprivation indices using a political ecology approach. We question whether the current indicators of deprivation derived from census data are meaningful for the all age groups and minority groups in the population, with a particular focus on deprivation indicators used in New Zealand, Canada and the United Kingdom. We comparatively reviewed methodological papers and reports that describe the indicators of deprivation in Aotearoa/New Zealand, Canada and the UK from 1975 to 2014. We consider the relationship between the notion of standards of living and measurements of deprivation and explore how hegemonic cultural constructs are implicit in measures of deprivation that privilege a Eurocentric, ageist and gender normative construction of statistics.
We argue for more political ecological analyses to studying the relationship between social inequalities, geographies, health inequities and political economy to transform structures of oppression and inequality. This requires turning the analytical gaze on the wealthy and privileged instead of defaulting into deficit models to account for inequality. Studies of deprivation and inequality would benefit from understanding the processes and operations of power in the (re)production of socio-economic and health inequities to inform holistic strategies for social justice.
Gerardo Otero, Gabriela Pechlaner, Giselle Liberman & Efe Gürcan
This paper discusses increasing differentiation of U.S. dietary components by socioeconomic strata and its health implications. While upper-income groups have had increasing access to higher-quality foods, lower-to-middle-income class diets are heavily focused on “energy-dense” fares. This neoliberal diet is clearly associated with the proliferation of obesity that disproportionately affects the poor. We provide a critical review of the debate about obesity from within the critical camp in food studies, between individual-focused and structural perspectives. Using official data, we show how the US diet has evolved since the 1960s to a much greater emphasis on refined carbohydrates and vegetable oils. Inequality is demonstrated by dividing the population into households-income quintiles and how they spend on food. We then introduce our Neoliberal Diet Risk Index (NDR), comprised of measures of food-import dependency, the Gini coefficient, rates of urbanization, female labor-force participation, and economic globalization. Our index serves to measure the risk of exposure to the neoliberal diet comparatively, across time and between nations. We conclude that only a societal actor like the state can redirect the food-production system by modifying its agricultural subsidy policies. Inequality-reducing policies will make the healthier food involved in such change widely available for all.
Sarah L. Bell, Cassandra Phoenix, Rebecca Lovell & Benedict W. Wheeler
Recent research suggests coastal environments may promote human health and wellbeing. This article explores the diverse coastal experiences sought out by residents of two towns in south west England to promote and preserve their personal wellbeing in the context of their everyday lives. It draws on the findings of an in-depth interpretive study conducted from May to November 2013 that examined the relative contribution of varied green and blue space experiences to individual wellbeing through the life course. Personalised activity maps produced using accelerometer and Global Positioning System (GPS) data were used to guide in-depth geo-narrative interviews with a purposive sample of 33 participants. This was combined with a subset of nine case study go-along interviews in places deemed therapeutic by the participants themselves, offering deeper insight into the lived experiences and relationships playing out within such places. Situated in a novel adaptation of the therapeutic landscapes framework, this article explores how symbolic, achievement-oriented, immersive and social experiences contributed to participants’ sense of wellbeing in their local coastal areas. Participants expressed particularly strong and often enduring connections to the local coastline, with different coastal stretches perceived to cater for varied therapeutic needs and interests, at multiple scales and intensities. The findings suggest the need for greater acknowledgement of people’s emotional, deeply embodied and often shared connections to the coast within coastal management policy and practice, both nationally and internationally. Importantly, such efforts should recognise the fluid, dynamic nature of this land-sea boundary, and the valued therapeutic experiences linked to this fluidity.
Sandra H. Sulzer
A diagnosis of Borderline Personality Disorder (BPD) often signals the quintessential “difficult patient” status to clinicians, with at least one scholar arguing the condition itself was created to name and group difficult patients. While patients who are deemed difficult are often dispreferred for care, does this have an impact on their overall status as medicalized patients who have successfully achieved a sick role? This study relies on (n = 22) in-depth interviews with mental health clinicians in the United States from 2012 to evaluate how they describe patients with BPD, how the diagnosis of BPD affects the treatment clinicians are willing to provide, and the implications for patients. My findings suggest patients with BPD are routinely labeled “difficult,” and subsequently routed out of care through a variety of direct and indirect means. This process creates a functional form of demedicalization where the actual diagnosis of BPD remains de jure medicalized, but the de facto or treatment component of medicalization is harder to secure for patients.
Kate Hampshire, Gina Porter, Samuel Asiedu Owusu, Simon Mariwah, Albert Abane, Elsbeth Robson, Alister Munthali, Ariane DeLannoy, Andisiwe Bango, Nwabisa Gunguluza & James Milner
The African communications ‘revolution’ has generated optimism that mobile phones might help overcome infrastructural barriers to healthcare provision in resource-poor contexts. However, while formal m-health programmes remain limited in coverage and scope, young people are using mobile phones creatively and strategically in an attempt to secure effective healthcare. Drawing on qualitative and quantitative data collected in 2012–2014 from over 4500 young people (aged 8–25 y) in Ghana, Malawi and South Africa, this paper documents these practices and the new therapeutic opportunities they create, alongside the constraints, contingencies and risks. We argue that young people are endeavouring to lay claim to a digitally-mediated form of therapeutic citizenship, but that a lack of appropriate resources, social networks and skills (‘digital capital’), combined with ongoing shortcomings in healthcare delivery, can compromise their ability to do this effectively. The paper concludes by offering tentative suggestions for remedying this situation.
Kirsten Bell, Simone Dennis, Jude Robinson & Roland Moore
Throughout the twentieth century, packaging was a carefully cultivated element of the appeal of the cigarette. However, the tobacco industry’s control over cigarette packaging has been steadily eroded through legislation that aims to rebrand the packet from a desirable to a dangerous commodity—epitomized in Australia’s introduction of plain packaging in 2012. Evident in both the enactment of cigarette packaging legislation and industry efforts to overturn it is the assumption that packets do things—i.e. that they have a critical role to play in either promoting or discouraging the habit. Drawing on 175 ethnographic interviews conducted with people smoking in public spaces in Vancouver, Canada; Canberra, Australia; Liverpool, England; and San Francisco, USA, we produce a ‘thick description’ of smokers’ engagements with cigarette packets. We illustrate that despite the very different types of cigarette packaging legislation in place in the four countries, there are marked similarities in the ways smokers engage with their packets. In particular, they are not treated as a purely visual sign; instead, a primary means through which one’s own cigarette packet is apprehended is by touch rather than by sight. Smokers perceive cigarette packets largely through the operations of their hands—through their ‘handiness’. Thus, our study findings problematize the assumption that how smokers engage with packets when asked to do so on a purely intellectual or aesthetic level reflects how they engage with packets as they are enfolded into their everyday lives.
Nicole Ackermann, Melody S. Goodman, Keon Gilbert, Cassandra Arroyo-Johnson & Marcello Pagano
Previous analyses of Stand Your Ground (SYG) cases have been primarily descriptive. We examine the relationship between race of the victim and conviction of the defendant in SYG cases in Florida from 2005 to 2013. Using a regression analytic approach, we allow for simultaneous examination of multiple factors to better understand existing interrelationships. Data was obtained from the Tampa Bay Times SYG database (237 cases) which was supplemented with available online court documents and/or news reports. After excluding cases which were, still pending as of January 2015; had multiple outcomes (because of multiple suspects); and missing information on race of victim and weapon of victim, our final analytic sample has 204 cases. We chose whether the case resulted in a conviction as the outcome. We develop logistic regression models using significant bivariate predictors as candidates. These include race of the victim (White, non-White), whether the defendant could have retreated from the situation, whether the defendant pursued the victim, if the victim was unarmed, and who was the initiator of the confrontation. We find race of the victim to be a significant predictor of case outcome in this data set. After controlling for other variables, the defendant is two times (OR = 2.1, 95% CI [1.07, 4.10]) more likely to be convicted in a case that involves White victims compared to those involving non-White victims. Our results depict a disturbing message: SYG legislation in Florida has a quantifiable racial bias that reveals a leniency in convictions if the victim is non-White, which provides evidence towards unequal treatment under the law. Rather than attempting to hide the outcomes of these laws, as was done in Florida, other states with SYG laws should carry out similar analyses to see if their manifestations are the same as those in Florida, and all should remediate any injustices found.
Differential access to healthy foods has been hypothesized to contribute to disparities in eating behaviors and health outcomes. While food deserts have been researched extensively in developed Anglophone countries, evidence from low- and middle-income countries is still scarce. In Mexico, prevalence of obesity is among the highest worldwide. As obesity has increased nationally and become a widespread public health issue, it is becoming concentrated in the low-income population. This mixed-methods study uses a multidimensional approach to analyze food environments in a low-, middle-, and high-income community in a Mexican city. The study advances understanding of the role that food environments may play in shaping eating patterns by analyzing the density and proximity of food outlet types as well as the variety, quantity, quality, pricing, and promotion of different foods. These measures are combined with in-depth qualitative research with families in the communities, including photo elicitation, to assess perceptions of food access. The central aims of the research were to evaluate physical and economic access and exposure to healthy and unhealthy foods in communities of differing socioeconomic status as well as participants’ subjective perceptions of such access and exposure. The findings suggest a need to reach beyond a narrow focus on food store types and the distance from residence to grocery stores when analyzing food access. Results show that excessive access and exposure to unhealthy foods and drinks, or “food swamps,” may be a greater concern than food deserts for obesity-prevention policy in Mexico.
In this paper, I examine how clinicians at a clinic for developmental disabilities in the United States determine whether children being evaluated for autism spectrum disorder (ASD) showed symptoms of that condition. Drawing on a convenience sample of 61 audio and video recorded case conferences from two time periods (1985 and 2011–15), and combining Conversation Analysis with insights from Actor Network Theory, I find that clinicians describe (via a representational practice called “citation”) children’s conduct in ways that advance diagnostic claims. More specifically, they portray key actants in the assessment process in patterned ways: the test instrument is represented as a neutral tool of measurement, the clinician as administrator and instructor; and the child as the focal figure whose conduct is made to appear independent of the other participants and suggestive of diagnostic symptoms. These tacit representational conventions conform to and reproduce the assumptions of standardized testing, according to which clinicians and tests are to be neutral arbiters of the child’s abilities, and thereby provide for objective, warrantable findings. At the same time, however, by designing representations around the child’s symptomatic conduct in this way, clinicians may minimize or elide their own contributions, and those of the test instrument, to the child’s performance, and thereby make the child alone appear responsible for what are, in fact, interactionally-occasioned behaviors.
Those who undergo health screening often experience physical and emotional effects as a result of the screening process. However, the effects of health screening go beyond these physical and mental complications, often having profound social effects for those who are screened. This study explores the social implications of health screening for people who undergo it and are designated as being at risk for potential disease. Through a qualitative analysis of the experiences of individuals with elevated cholesterol levels and men with elevated prostate-specific antigen (PSA) levels, this research offers a description of the experience of being at risk, identifying three primary components: increased medical contact, a restructuring of everyday routines and altered social relationships. Whereas the at-risk health status engendered by current clinical approaches to screening and surveillance has been characterised as proto-disease, this study develops a companion definition of proto-illness to characterise the social experience of life with an identified health risk. Those who are at risk act in ways that are similar to those who are ill. The concept of proto-illness implies that the experience of risk is parallel to the experience of illness and contributes to the sociology of medical screening by establishing a much needed bridge between the two experiences.
Paul R Ward, Cushla Coffey & Samantha Meyer
Colorectal cancer (CRC) has the second highest cancer prevalence and mortality rates in Australia. The Australian National Bowel Cancer Screening Program (NBCSP) aims to increase early detection of CRC by offering free faecal occult blood testing. The NBCSP aims to offer choice to consumers about whether or not to participate in screening. This article presents data on trust, choice and perceived obligation to participate in the NBCSP by population groups with low uptake. A qualitative study was undertaken in South Australia. We interviewed 94 people from four culturally distinct groups: Greek, Iranian, Anglo-Australian and Indigenous peoples. This article demonstrates the complexity of factors shaping the choice, or lack thereof, to participate in the NBCSP. Informed choice is based on adequate knowledge, although this varied among our participants, highlighting the need for more health education in appropriate languages. An obligation to participate was found in the Iranian and Anglo-Australian groups and resulted from an established personal relationship with the doctor, a sense of duty, the acknowledgement of government investment and appreciation. Overall, this article makes a link between trust, choice and obligation, adding to literature on the sociology of trust and medical screening and highlighting important issues in the need of a policy and practice to improve CRC screening rates.
Daryl Martin, Sarah Nettleton, Christina Buse, Lindsay Prior & Julia Twigg
Sociologists of health and illness have tended to overlook the architecture and buildings used in health care. This contrasts with medical geographers who have yielded a body of work on the significance of places and spaces in the experience of health and illness. A review of sociological studies of the role of the built environment in the performance of medical practice uncovers an important vein of work, worthy of further study. Through the historically situated example of hospital architecture, this article seeks to tease out substantive and methodological issues that can inform a distinctive sociology of healthcare architecture. Contemporary healthcare buildings manifest design models developed for hotels, shopping malls and homes. These design features are congruent with neoliberal forms of subjectivity in which patients are constituted as consumers and responsibilised citizens. We conclude that an adequate sociology of healthcare architecture necessitates an appreciation of both the construction and experience of buildings, exploring the briefs and plans of their designers, and observing their everyday uses. Combining approaches and methods from the sociology of health and illness and science and technology studies offers potential for a novel research agenda that takes healthcare buildings as its substantive focus.
Nicolas Henckes & Michael Nurok
This article examines the way that intense emotions, both positive and negative, are collectively regulated at work by pre-hospital emergency teams. We analyse the collective strategies and solutions that are developed in daily medical work by teams and individuals with a view to furthering the action. After a review of the literature on emotion work in work collectives, we discuss the nature of pre-hospital emergency work and the role of emotions in this work. We then examine the collective management of both disruptive and desired emotions by teams during interventions. The last section reflects on the long-term management of emotions at work using Randall Collins’ concepts of interaction ritual and emotional energy. This study relies on fieldwork performed in emergency medical services in New York and Paris.
Simon J. Williams, Catherine Coveney & Robert Meadows
This article critically explores recent trends and transformations in the monitoring and management of sleep in the digital age, taking as its focus the advent of new digital technologies to trace and track the ‘sleep of ourselves’ far away from the conventional sleep laboratory or clinic. Our argument is situated dually in the history of sleep science and medicine on the one hand, and the rise of new digital forms of so-called self-tracking and mobile health (m-Health) on the other hand. While the recent history of sleep science and medicine may rightly we suggest, in Kroker’s terms, be characterised as a concern with the ‘sleep of others’, a new chapter in this story may well be dawning through the advent of these smart new mobile tools and technologies for mapping, or ‘m-apping’ as we term it, the ‘sleep of ourselves’ in the digital age. The problems and prospects this holds are then critically considered – through the interrelated themes of selfhood, sociality and governance – and some preliminary conclusions ventured in this new digital domain.
Catherine Kohler Riessman
First-person accounts of the illnesses experienced by sociologists have taken hybrid experimental forms. I add my voice to this growing tradition with a story about the discovery and treatment of a soft tissue sarcoma in my thigh, chronicled in a journal I kept over many months. The fragments scribbled in the journal became the basis of an extended illness narrative. I interrogate features of the narrative itself, including the handling of time and imagined audiences – those I was writing for. The illness narrative traces how cancer transformed the many identities I enact on a daily basis and how the invisible labour of particular health workers enabled the restoration of several prized identities. These workers – radiation, occupational and physical therapists – are typically subordinated in the medical hierarchy and the interactional work that they do with patients to restore and reconfigure ruptured identities after serious illness needs attention in medical sociology.
The article explores the telling of co-narrated atrocity stories in accomplishing professional identity. Building on previous work, it is argued that group membership is a prerequisite for such stories to be told. Extracts from empirical data from interviews with social work approved mental health professionals are analysed using an ethnomethodological approach. The findings show how atrocity stories can be co-narrated, not only by longstanding colleagues, but also by two unacquainted persons who share the same professional identity. The article concludes that the ethnomethodological concepts of vulgar competency, unique adequacy, indexicality and the documentary method of interpretation are key to understanding the accomplishment of co-narrated atrocity stories.
Pranee Liamputtong & Dusanee Suwankhong
In this article we draw on Bury’s theory of biographical disruption to discuss the meanings of, and emotional experiences related to, being diagnosed with breast cancer among southern Thai women. Qualitative methods, including in-depth interviewing and drawing methods, were used to collect data from 20 women with breast cancer. The women perceived breast cancer to be a rhok raai; an evil or dread disease. They believed that breast cancer would lead to death. The disruption in their biography occurred when they detected abnormalities indicating breast cancer. The women’s narratives revealed their chaotic lives upon this diagnosis and the news precipitated in them shock, fear, anxiety and loss of hope. Although they experienced chaos and disruption, the women cultivated strategies that helped them cope with their experiences by accepting their fate and adhering to Buddhist beliefs and practices. Through their narratives of biographical disruption, the women in our study offer healthcare providers knowledge that could lead to an appreciation of their needs and concerns. This knowledge is crucial for health professionals who wish to provide emotional support to women who have been diagnosed with breast cancer in Thailand and elsewhere.
Since the emergence of type 2 diabetes as a public health threat around the middle of the 20th century, accounts of disease causation have focused predominately on lifestyle or genetics, or both, while the role of broader structural issues such as psychosocial distress has been downplayed. Yet in the years prior to this emergence, when diabetes remained the preserve of the upper classes, medical experts drew upon multiple narratives when considering the condition, the most popular of which being the role of social organisation and the interplay between mind, body and environment. This article is based on a discourse analysis of the writings of the most prominent diabetes experts between 1800 and 1950 about both the causes and management of the illness. It highlights how, although the connection between lifestyle and diabetes was well established among physicians, individual-level explanations only fully supplanted the emphasis on social organisation as diabetes began to make the transition from being a disease of the rich to one of the poor. It argues that this discursive shift was shaped by the dynamics of class relations rather than any new forms of scientific evidence developed at the time.
What happens to our academic writing when we are invited by our interactants to realize that what is serious for a situated set of practices might not be as serious for another set of practices? In this article I explore such situations by considering the relations among eaters, ecologies and the circulation of different types of food in the context of ontological pluralism in Southern Chile. Inspired by debates on eating and subjectivities coming from empirical philosophy, as well as by theorizations on how to take others’ worlds seriously offered by ‘the ontological turn’ in anthropology, I explore how ethnographic situations related to eating and to foods transform epistemological distances between subjects and objects. More specifically, I show how taking our interactants seriously may lead us to eat our academic wor(l)ds, making room for unexpected ethnographic transactions emerging beyond ethnographic theorization.
In this article, I ask what a Heideggerian analysis of subjectivity can do for disability politics, and to the investigation of subject formation more generally. I begin by outlining the historically dominant ‘social model of disability’, which frames disability as a form of oppression. In the section ‘Michael Oliver and the politics of disablement’, I suggest that a re-reading of Heidegger on subjectivity allows us to chart aspects of disabled personhood missed by the social model. Heidegger argues human existence (Dasein) defies subjectivity; I argue it is more primordial, but that the two can co-exist, particularly when disabled persons shape their own subjectivity. I provide a threefold ontological structure, Dasein-Mitdasein-Subjectivity, sensitive to the politics of subject formation. Finally, I turn to two cases of ontological disability politics, those of the French Muscular Dystrophy Association and global thalidomider politics, to show how my reading of subjectivity is preferable to the social model’s.
Since the 1990s, the concept of ‘recovery in/from serious mental health problems’ has been iterated internationally as the new paradigm in mental health policy and practice. A constitutive element of recovery discourse is a struggle over what defines a ‘good’ life-in-time; yet temporalities of recovery remain under-investigated. This article offers an empirical exploration of recovery enacted in an NHS ‘arts for mental health’ service called Create. I present an analysis of several intersecting temporalities at play within Create through the lens of one service-user’s story. The temporal orderings of the situated aesthetic care practices at Create encapsulate competing articulations of recovery, hope and aspiration. These different temporalities enact different subjectivities, revealing recovery to be a set of socio-political struggles over what lives are deemed liveable in the context of global neo-liberal capitalism.
C Fred Alford
Studies have shown that many children of Holocaust survivors suffer from the experiences of their traumatized parents. Indeed, many of these children call themselves second-generation survivors. Drawing on over 250 interviews with Holocaust survivors from the Fortunoff Video Archive at Yale University, as well as interviews with the children of survivors, this manuscript argues that the transmission of historical trauma from one generation to another is best explained in terms of how trauma disrupts the attachment system. Children want and need to experience their parents’ trauma. However, they need to do so in an age-appropriate way, and in a way that is adequately symbolized. To be excluded from their parents’ subjectivity is as damaging as being overwhelmed by unintegrated parental experience. Attachment theory turns out to be an especially good medium for making sense of this delicate balance.
The aim of this research is to transmit and comment on the authentic voices of socially withdrawn subjects and to contribute toward refining subjective inquiry in contemporary Japan. Here, I detail the cases of four individuals visiting Japanese Non Profit Organizations between August 2011 and August 2012. In accordance with my findings, I define socially withdrawn individuals as post-modern social renouncers. Hikikomori should not be reduced to a mental disorder but should be seen as an idiom of distress and a modality where one can recognize him/herself as a subject, or a mode of enjoyment. I suggest ways of improving qualitative methodology and directions for future research at the intersection of cultural history, anthropology, and subjectivity theory.
James Burton & Daisy Tam
The parasite is widely conceived as a negative figure that takes without giving; perceived as an agent of corruption and destruction, it is subjected to programmes of eradication and expulsion across cultural, economic, political and ethical contexts. This paper offers an alternative approach to the status of parasitic relations in light of Michel Serres’s The Parasite, elaborated through ethnographic research into the after-hours culture and hidden economy of London’s Borough Market. We highlight the mutual dependence of agents in host-parasite networks according to what we term ‘general parasitism’, while inquiring into its ethical potential. Ultimately, we argue that while taking into account the near ubiquity of parasitic relations cannot form the basis for any concrete axiomatic ethical paradigm, it should at least encourage an ethics of hesitation before judgement when faced with any apparent instance of parasitism: to presume that parasitism is undesirable and unethical is itself undesirable and unethical.
Yulia E. Chentsova-Dutton, Eunsoo Choi, Andrew G. Ryder & Jenny Reyes
The meanings of “anhedonia” and “depressed mood,” the cardinal emotional symptoms of major depression, may be shaped by cultural norms regarding pleasure and sadness. Thirty-two European Americans, 26 Hispanic Americans, 33 Asian Americans, and 20 Russian Americans provided reports of (a) depressive symptoms, (b) momentary emotions and pleasure, and (c) global subjective well-being. Momentary reports were collected over 10 days using handheld personal digital assistants. Reports of anhedonia were associated with heightened levels of momentary low arousal negative emotions (e.g., sadness), whereas reports of depressed mood were associated with dampened levels of momentary positive emotions (e.g., happiness). Symptoms of anhedonia and depressed mood interacted in their associations with momentary pleasure. In addition, the associations of anhedonia and depressed mood with positive emotions and life satisfaction differed across cultural groups. Specifically, these symptoms were associated with dampened positive emotions in the Asian American group only. Additionally, anhedonia was associated with dampened global life satisfaction in the European American group only. These results suggest that reports of anhedonia and depressed mood cannot be interpreted at face value as specific and culture-free indicators of emotional deficits. Instead, they appear to signal changes in the balance of positive and negative emotions, with the exact nature of these signals shaped at least in part by cultural context. This conclusion has important consequences for the clinical interpretation of depressive symptoms in multicultural societies.
Mpoe Johannah Keikelame & Leslie Swartz
The experience of epilepsy is profoundly culturally mediated and the meanings attributed to the condition can have a great impact on its social course. This qualitative study used Kleinman’s Explanatory Model framework to explore traditional healers’ perspectives on epilepsy in an urban township in Cape Town, South Africa. The healers who participated in the study were Xhosa-speaking, had experience caring for patients with epilepsy, and had not received any training on epilepsy. Six individual in-depth interviews and one focus group with nine traditional healers were conducted using a semi-structured interview guide. Traditional healers identified several different names referring to epilepsy. They explained epilepsy as a thing inside the body which is recognized by the way it presents itself during an epileptic seizure. According to these healers, epilepsy is difficult to understand because it is not easily detectable. Their biomedical explanations of the cause of epilepsy included, among others, lack of immunizations, child asphyxia, heredity, traumatic birth injuries and dehydration. These healers believed that epilepsy could be caused by amafufunyana (evil spirits) and that biomedical doctors could not treat the supernatural causes of epilepsy. However, the healers believed that western medicines, as well as traditional medicines, could be effective in treating the epileptic seizures. Traditional healers were supportive of collaboration with western-trained practitioners and highlighted that the strategy must have formal agreements in view of protection of intellectual property, accountability and respect of their indigenous knowledge. The findings suggest a need for interventions that promote cultural literacy among mental health practitioners. Research is urgently needed to assess the impact of such collaborations between biomedical services and traditional healers on epilepsy treatment and care.
The following essay is the first ever in the new first-person perspectives column recently initiated by Transcultural Psychiatry. This column is intended to give voice to people of diverse ethnic, cultural, and national backgrounds with current or previous emotional distress or mental illness. This first article is written by Katrina Bartellas, a courageous young Newfoundlander who struggled with an eating disorder early in life, since making a full recovery and now herself working in the mental health field. Katrina writes poignantly about growing up in the fog-soaked intimacy of St. John’s, Newfoundland in an ambitious family of first-generation immigrant medical professionals.
Andrew R. Hatala & James B. Waldram
Theory and research on the healing practices of Indigenous communities around the globe have often been influenced by models of “symbolic healing” that privilege the way patients consciously interpret or derive meaning from a healing encounter. In our work with a group of Q’eqchi’ Maya healers in southern Belize, these aspects of “symbolic healing” are not always present. Such empirical observations force us to reach beyond models of symbolic healing to understand how healing might prove effective. Through the extended analysis of a single case study of rahil ch’ool or “depression,” we propose to advance understanding of forms of healing which are not dependent on a shared “mythic” or “assumptive world” between patient and healer or where therapeutic efficacy does not rely on the patient’s ability to “believe” in or consciously “know” what is occurring during treatment. In this we demonstrate how the body, as a site of experience, transformation, and communication, becomes the therapeutic locus in healing encounters of this kind and argue that embodied mediums of sensorial experience be considered central in attempts to understand healing efficacy.
Manjula O’Connor & Erminia Colucci
In many parts of the world, young adult women have higher levels of common mental disorders than men. The exacerbation of domestic violence (DV) by migration is a salient social determinant of poor mental health. Ecological models describe factors contributing to DV as operating at individual, family, cultural, and societal levels. We explored the interplay among these factors in an Indian community living in Melbourne, Australia, in a qualitative participatory action research study using a modified Forum Theater approach. We here present findings on connections between migration, societal factors, and social/family/cultural factors in DV. The study captured the voices of women living in the community as they describe how DV contributes to their emotional difficulties. Improved understanding of the sociocultural dynamics of DV and the associated social distress in this migrant Indian community can be used to guide the development of culturally sensitive prevention and response programs to assist migrant women from the Indian subcontinent who present with psychopathology and suicidal behaviors associated with DV.