Here are some of the articles published in February. Enjoy!
Cultural Anthropology (Open Access)
Gestures of Care and Recognition: An Introduction
Lauren Cubellis
This collection of essays offers an exploration of care as a gesture of recognition. As both object of inquiry and ethnographic representation, care is examined as the work of discerning and representing traces. The introduction and subsequent essays grapple with the work of writing about absent others, and how the anthropological endeavor might itself be considered a form of care.
Looking Away
Lisa Stevenson
This essay turns to Roland Barthes’s concept of the punctum and John Berger’s writing on portraiture to describe the care involved in both anthropological encounters and ethnographic writing. It addresses how images—whether, photographic, painted, or written—may come to be seen as “just.” The essay considers the possibility that it might be necessary to look away from our interlocutors, or the images we have of them, in order to be able to sense, and then communicate to others, their singularity. The traces they leave behind in our memories can allow us to register an aliveness that exceeds our existing labels, categories, and styles of thinking.
Sympathetic Care
Lauren Cubellis
German clinicians working with psychiatric crises employ an alternative therapy called Open Dialogue to excavate the family histories and interpersonal relationships of their clients. In learning to do this, they perform role-play exercises in which familial narratives are imagined and improvised. Through this process, they develop an embodied practice in which they attune to misalignments in the network through words.
Care and the Nonhuman Politics of Veteran Drunk Driving
Ken MacLeish
Military veteran drunk driving is a field of pathologized behavior in which traces of military excess meet the surveillance and banality of home-front safety. In communities with significant veteran populations, drunk driving blurs the lines between battlefield dangers and more familiar modes of domestic disorderliness, and the deployment of special mechanisms for dealing with law-breaking veterans gives rise to novel combinations of dangerous and deserving, criminal and cared-for. This article recognizes and questions the production of knowledge that is as ambivalent as the scenes of life from which it emerges.
Underground Inscriptions
Michele Lancione
This essay examines the politics of home in underground Bucharest, and the ways relationships of care among homeless drug users emerge amid everyday violence and exclusion, illuminating the unconventional practices of belonging that take shape in transient communal spaces such as underground electric, transportation, and waste-management systems. The traces of systemic exclusion in these experiences converge in makeshift forms of kinship and care, provoking questions of solidarity, fragility, and the political potential of recognizing such forms through ethnographic collaboration.
Mourning, Affect, Sociality: On the Possibilities of Open Grief
Zoë Wool
This essay examines mourning and the possibilities for open grief among veterans, asking how the traces of what has been lost persist into the present in ways that find no easy resolution. It questions the normative value of an end to mourning, proposing instead that grief—and indeed our anthropological formulations of the meaning of such affects and events—might be held open, trace and memory maintained, imagining recognition as something open-ended that might recast discomfort as the potential for a different kind of sociality.
Improvisation, therapeutic brokerage and antibiotic (mis)use in India: a qualitative interview study of Hyderabadi physicians and pharmacists (open access)
Alex Broom, Katherine Kenny, Emma Kirby, Nimesh George & Mahati Chittem
Antimicrobial resistance (AMR) is widely reported to be a rapidly escalating global health threat. Investigations into the social dimensions of AMR have tended to focus on economically wealthier nations, even though economically poorer countries are a site of considerable and often increasing antibiotic (mis)use. Understanding the global and local dynamics of antibiotic resistance, we propose, requires critical sociological investigation at the nexus of economic development, structural constraints, cultural norms, and infection-management practice. Here, to begin to unpack these intersections, we draw on qualitative interviews with physicians and pharmacists in Hyderabad to explore their accounts of the social dynamics of AMR in India. In particular, we focus on their accounts of practices of improvisation and self-medication with antibiotics; the nexus of informal and formal pharmaceutical economies and the vested interests therein; and the everyday brokering of antibiotics. We posit that responses to AMR need to be deeply embedded in the specificities of everyday practice, local market forces, and regulatory (im)possibilities with attention paid to the locally prevailing cultural norms.
The construction of mental health as a technological problem in India (open access)
China Mills & Eva Hilberg
This paper points to an underexplored relationship of reinforcement between processes of quantification and digitisation in the construction of mental health as amenable to technological intervention, in India. Increasingly, technology is used to collect mental health data, to diagnose mental health problems, and as a route of mental health intervention and clinical management. At the same time, mental health has become recognised as a new public health priority in India, and within national and global public health agendas. We explore two sites of the technological problematisation of mental health in India: a large-scale survey calculating prevalence, and a smartphone app to manage stress. We show how digital technology is deployed both to frame a ‘need’ for, and to implement, mental health interventions. We then trace the epistemologies and colonial histories of ‘psy’ technologies, which question assumptions of digital empowerment and of top-down ‘western’ imposition. Our findings show that in India such technologies work both to discipline and liberate users. The paper aims to encourage global debate inclusive of those positioned inside and outside of the ‘black box’ of mental health technology and data production, and to contribute to shaping a future research agenda that analyses quantification and digitisation as key drivers in global advocacy to make mental health count.
‘Heroin is the devil’: addiction, religion, and needle exchange in the rural United States (open access)
Kelly Szott
Like many rural and suburban counties in the Midwestern United States, George County, Indiana is facing increased rates of heroin use, drug-related overdose, and hepatitis C. Following an outbreak of HIV in 2015 in a nearby county, the George County department of health launched an effort to open a needle exchange despite considerable opposition from the community, including ambivalent stances among current and former users of opiates. This article examines these conflicted perspectives noting their grounding in a moral approach to addiction and seeks to explain opposition to the needle exchange program by examining locals’ depictions of the religious and moral landscape of the county. This analysis is based on 29 qualitative interviews conducted with 20 people who have experience using heroin or prescription opioid painkillers and 13 other community members involved in local efforts to address addiction. Ethnographic observation of public events was undertaken. Examining the contours of the local moral economy and its links to religious spirituality and practice reveals that the moral model of addiction both mitigates and produces social exclusion and begets conflicted stances towards the presence of an initiative to open a modest needle exchange program. Interviewees expressed a variety of stances towards the initiative feeling that it might decrease the spread of disease, but may not be used effectively. Though it is situated on morally contested terrain, it may be a step towards social inclusion and empowerment for addicted individuals who stake their right to health and a place in the community.
A systematic search and critical thematic, narrative review of lifestyle interventions for the prevention and management of diabetes (open access)
Andrea E. Bombak, Natalie D. Riediger, Jackson Bensley, Samuel Ankomah & Adriana Mudryj
Moralism, myths, and presumptions regarding relationships between diet, exercise, weight, and disease incidence persist. It is unclear to what extent researchers contribute to presumptions concerning weight, lifestyle, and diabetes, and how often these relationships are thoroughly, distinctly delineated in intervention literature. Our purpose in this paper is to focus on interventions designed to prevent the onset of diabetes and to explore how weight is framed and discussed within randomized controlled trials (RCTs), to examine how diabetes prevention is constructed. We completed a search of several electronic databases for records published between 2007 and November 2016. Selection criteria included RCTs with a follow-up period of ≥12 months; adult participants with type 2 diabetes/pre-diabetes; and lifestyle interventions classified as dietary, exercise, and/or behavioral. Nineteen articles were identified for inclusion and subject to thematic content analysis. Two superordinate themes emerged from the analysis – entangled mechanisms and the meaning of weight and prevention through compliance. The relationship between obesity and adverse health outcomes was presented in some studies as taken-for-granted but underlain by unspecified mechanisms. Participants’ behaviors were also presented as central to forestalling diabetes, and behaviors were depicted as ‘compliance’, ‘resistance’, or ‘adherence’. Researchers’ biases and assumptions contribute to the discursive construction of diabetes as a product of patients’ irresponsible behaviors and subsequent fatness. This work extends previous critiques of RCTs in general to ‘diabesity’ RCTs by exploring how interventions are constructed as failures due to participants’ noncompliance despite evident etiological uncertainty.
Receptionists, doctors, and social workers: Examining undocumented immigrant women’s perceptions of health services
Amada Armenta, Heidy Sarabia
In this paper, we examine the attitudes, experiences, and perceptions of health care among unauthorized immigrant women in Philadelphia, Pennsylvania. Research on health care utilization among undocumented immigrants usually focuses on barriers to securing health care access, but little attention has been paid to how these barriers shape patients’ experiences. Patients’ experiences are important because they affect persistence in care seeking, adherence to treatment regimens, and self-reported health. Drawing from interviews with undocumented Mexican women, we find that receptionists, staff, and social workers play an important role in shaping women’s perceptions of health care. In contrast to previous research which finds that negative experiences with providers lead undocumented immigrants to withdraw from seeking medical services, without fail, our respondents persisted and sought care elsewhere. This strategy ensured that all women eventually found care with which they were satisfied, but sometimes after significant delays.
Uncertainty in times of medical emergency: Knowledge gaps and structural ignorance during the Brazilian Zika crisis
Ann H. Kelly, Javier Lezaun, Ilana Löwy, Gustavo Corrêa Matta, Carolina de Oliveira Nogueira, Elaine Teixeira Rabello
Uncertainty was a defining feature of the Brazilian Zika crisis of 2015–2016. The cluster of cases of neonatal microcephaly detected in the country’s northeast in the second half of 2015, and the possibility that a new virus transmitted by Aedes mosquitoes was responsible for this new syndrome, created a deep sense of shock and confusion in Brazil and around the world. When in February 2016 the WHO declared a Public Health Emergency of International Concern (PHEIC), it noted that it did so on the basis of what was not known about the virus and its pathogenic potential. To better understand the role that non-knowledge played in the unfolding of the Brazilian Zika crisis we differentiate between three different kinds of uncertainty: global health uncertainty, public health uncertainty, and clinical uncertainty. While these three forms of uncertainty were difficult to disentangle in the early weeks of the crisis, very soon each one began to trace a distinct trajectory. Global health uncertainty centered on the question of the causative link between Zika virus infection and congenital malformations, and was declared resolved by the time the PHEIC was lifted in November 2016. Public health and clinical uncertainty, in contrast, persisted over a longer period of time and did, in some important ways, become entrenched. This taxonomy of uncertainties allows us to explore the systematic nonproduction of knowledge in times of medical emergency, and suggests structural limitations in the framework of “emergency research” that global health institutions have developed to deal with unexpected threats.
Using autoimmune strategically: Diagnostic lumping, splitting, and the experience of illness
Kelly Joyce, Melanie Jeske
Experience of illness and sociology of diagnosis literatures offer valuable insights into how people live with chronic illness. In this article, we argue that investigating autoimmune illnesses contributes to the sociological understanding of illness experiences and diagnosis practices. Autoimmune is a broad category of illnesses in which a person’s immune system identifies healthy cells as pathological. Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, this article shows how both broad diagnostic classifications (lumping) and narrow diagnostic classifications (splitting) are integral to diagnostic work and illness experiences. Combining the illness experience and sociology of diagnosis literatures, we theorize diagnosis as an iterative process in which people strategically use broad illness categories such as autoimmune in combination with specific illness categories such as multiple sclerosis a way to negotiate heterogeneity and uncertainty and to make sense of what is happening in their bodies. In this article, we argue that in an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness.
Medical technologies and abortion care in Eastern Uganda
Alexander Kagahaa, Lenore Manderson
Manual Vacuum Aspirators (MVA), Dilation and Curettage (D&C), and medical abortifacients (Misoprostol, Mifepristone and Divabo) are available in clinical settings that offer abortion and post-abortion care in Uganda. While these technologies imply appropriate and safe abortion care, legal and policy ambiguities impact health outcomes. In this article, we draw on an ethnography of abortion care delivery practice conducted in one district in Eastern Uganda between August 2018 and March 2019, with data from interviews and observations, both of interactions and during quality of care improvement and training meetings. We illuminate how, in the context of a financialized healthcare system and legal restrictions, the meanings and use of medical technologies and abortion care vary across different health facility types. In public health facilities, health workers become state agents in the control of women’s bodies. In private health facilities, they become transgressors, who use medical technologies to help women attain termination surreptitiously. Health workers offset risks associated with any involvement in termination, such that pecuniary interests dominate their motivation. Normalized and disciplinary power enact and reproduce unsafe and risky conditions, leading to poor abortion care outcomes. We illustrate the mechanisms of domination and tactics of resistance in abortion care, and expose conditions upon which unsafe and risky outcomes are contingent.
The collaborative management of antipsychotic medication and its obstacles: A qualitative study
Ángel Martínez-Hernáez, Asun Pié-Balaguer, Mercedes Serrano-Miguel, Nicolás Morales-Sáez, Andrea García-Santesmases, Deborah Bekele, Elisa Alegre-Agís
Antipsychotic medication is the primary treatment for psychotic conditions such as schizophrenia and schizoaffective disorders; nevertheless, its administration is not free from conflicts. Despite taking their medication regularly, 25–50% of patients report no benefits or perceive this type of treatment as an imposition. Following in the footsteps of a previous initiative in Quebec (Canada), the Gestion Autonome de la Médication en Santé Mentale (GAM), this article ethnographically analyses the main obstacles to the collaborative management of antipsychotics in Catalonia (Spain) as a previous step for the implementation of this initiative in the Catalan mental healthcare network. We conducted in-depth interviews with patients (38), family caregivers (18) and mental health professionals (19), as well as ten focus groups, in two public mental health services, and patients’ and caregivers’ associations. Data were collected between February and December 2018. We detected three main obstacles to collaboration among participants. First, different understanding of the patient’s distress, either as deriving from the symptoms of the disorder (professionals) or the adverse effects of the medication (patients). Second, differences in the definition of (un)awareness of the disorder. Whereas professionals associated disorder awareness with treatment compliance, caregivers understood it as synonymous with self-care, and among patients “awareness of suffering” emerged as a comprehensive category of a set of discomforts (i.e., symptoms, adverse effects of medication, previous admissions, stigma). Third, discordant expectations regarding clinical communication that can be condensed in the differences in meaning between the Spanish words “trato” and “tratamiento”, where the first denotes having a pleasant manner and agreement, and the second handling and management. We conclude that these three obstacles pave the way for coercive practices and promote patients’ de-subjectivation, named here as the “total patient” effect. This study is the first GAM initiative in Europe.
Imperfect biomarkers for adjuvant chemotherapy in early stage breast cancer with good prognosis
Catherine Bourgain, Lionel Pourtau, Chafika Mazouni, Martine Bungener, Julia Bonastre
The proliferation of biomarkers has raised concerns regarding the possibility for clinical judgment to be improperly removed from clinician’s jurisdiction and included in laboratory tests. To evaluate the ways in which the diffusion of biomarkers questions the autonomy of clinicians, we consider the case of chemotherapy prescription to women with early stage breast cancer and a good prognosis. Drawing on a qualitative study of clinicians working in a diversity of institutional contexts, we follow three biomarkers available to guide this routinely made decision. We show that, biomarkers able to reduce all the uncertainties associated with, what we analyse as an uncomfortable decision, are sought more than dreaded by clinicians. If such ideal tools are unavailable, the fact is well acknowledged by the profession. Rather than precluding their usage, the imperfection of existing biomarkers is controlled by the profession, through their integration as additional tools in the decision process. The fact that the biomarkers are recognized as imperfect biomedical entities reinforces the importance of local material, organizational and financial constraints over that of international science, technology and clinical data, in their diffusion. The regulation of the uncertainties associated with these imperfections is organized at the professional level. Through an important work, relying on guidelines and enforced in collective bodies, the series of heterogeneous bioclinical evidences available are articulated. Biomarkers tend to be subordinated to the clinic. While maintaining the professional autonomy, the process also strengthens the internal professional hierarchy. When the most expert clinicians manage to inhabit a space for clinical autonomy, the nonexpert are torn between stronger professional rules and patient preferences. In this alliance between biomarkers and experts, their clinical autonomy tends to be the price for the professional autonomy.
Translating healthcare research evidence into practice: The role of linked boundary objects
Sara Melo, Simon Bishop
Recent years have seen widespread interest in the process of evidence implementation and growth of implementation science. Whilst this work has drawn attention to the challenges and complexities of implementing evidence into everyday practice, for the most part, studies of implementation uphold the ideal of a linear ‘pipeline’ between research and front-line care. In contrast, this paper adopts a practice perspective on knowledge, and draws on science and technology studies concepts to identify how the socio-material environment contributes to the translation of evidence across multiple organisational and professional boundaries. Findings report on a qualitative case study of implementing fall prevention research evidence at a large teaching hospital in Portugal. Data is from forty-six in-depth semi-structured interviews with clinical and non-clinical staff. The case highlights how linked boundary objects bridge temporally sequential boundaries between research and different practice communities, hence facilitating the translation of research evidence into everyday practice. The initial boundary object (the ‘Morse’ fall risk assessment scale) contributed to evidence being taken up by specialist nurses within the hospital, while a second boundary object (a pink patient wristband) engendered a change in practice of a wider network of actors. Nevertheless, the symbolic connection between the two linked boundary objects remained precarious, dependent on networks of interaction and communication. The study highlights the role of material objects in the ongoing translation of research evidence into everyday clinical practice.
Painful lives: Chronic pain experience among people who use illicit drugs in Montreal (Canada)
Lise Dassieu, Jean-Luc Kaboré, Manon Choinière, Nelson Arruda, Élise Roy
The current opioid crisis in North America has strengthened the boundary between “genuine chronic pain patients” and “drug addicts,” though these categories are not mutually exclusive. Despite its high prevalence —more than double the general population rate— chronic pain among people who use illicit drugs (PWUD) remains an overlooked issue in both health and social sciences. Using the theoretical framework of sociology of illness experience, the aim of this qualitative study was to understand how the experience of illicit drug use shapes the chronic pain experience. We conducted in-depth interviews with 25 individuals who used street opioids and/or cocaine (with or without any other drug) and had suffered from chronic pain for three months or more. Participants were recruited from July 2017 to May 2018, in Montreal (Canada). Social deprivation and drug use increased PWUD’s exposure to a wide range of health issues including chronic pain. Even when intense, pain was often described as peripheral in their life given their many other problems. They experienced double stigmatization due to the cumulation of two socially devalued statuses, “drug addicts” and “chronic pain sufferers.” Their attempts to avoid stigma included valuing their toughness/endurance and pursuing physical activities despite the pain. Some reported using substances like cocaine or heroin to meet social expectations of performance regardless of pain. This study improves the knowledge on illness experiences within deprived social settings by showing how marginalization and stigma render PWUD’s pain clinically and socially invisible.
“Is there a medicine for these tensions?” Barriers to treatment-seeking for depressive symptoms in rural India: A qualitative study (open access)
Tessa Roberts, Ritu Shrivastava, Mirja Koschorke, Vikram Patel, Rahul Shidhaye, Sujit D. Rathod
Rationale and objective. Fewer than 15% of adults who meet criteria for a depression diagnosis in India seek treatment for these symptoms. It is unclear whether this reflects limited supply of mental health services or lack of demand for medical intervention for these experiences. This paper aims to identify and describe self-reported barriers that contribute to this “treatment gap” in a rural district in central India, where depression treatment had recently become available in primary care facilities.
Method. In this qualitative study we conducted in-depth interviews with 35 adults who screened positive for depression and who had not sought treatment for their condition, and 15 of their relatives. We analysed the data using the framework approach.
Results. A key barrier to seeking health care for psychological symptoms was lack of perceived need for treatment for these symptoms. Low perceived need for health interventions arose because participants frequently attributed depression-like symptoms to their socio-economic circumstances, or to the stress of physical illness, which conflicted with the biomedical approach associated with health services. Despite widespread recognition of the links between psychological symptoms, social circumstances and physical health, it was believed that health care providers are equipped to treat only somatic symptoms, which were commonly reported.
Conclusions. Low demand for depression treatment reflected discrepancies between the community’s perceived needs and a narrow biomedical model of mental health. Meeting their needs may require a radical change in approach that acknowledges the social determinants of distress, and the interactions between mental and physical health. The capabilities approach may provide a framework for more holistically conceptualising people’s needs.
Dealing with the unknown. Functional neurological disorder (FND) and the conversion of cultural meaning
Maddalena Canna and Rebecca Seligman
Functional Neurological Disorder (FND), otherwise known as Conversion Disorder, is characterized by abnormal sensory or motor symptoms that are determined to be “incompatible” with neurological disease. FND patients are a challenge for contemporary medicine. They experience high levels of distress, disability, and social isolation, yet a large proportion of those treated do not get better. Patients with FNDs are often misdiagnosed and suffer from stigma, dysfunctional medical encounters and scarcity of adequate treatments. In this paper we argue that an anthropological understanding of these phenomena is needed for improving diagnosis and therapies. We argue that cultural meaning is pivotal in the development of FND on three levels. 1) The embodiment of cultural models, as shared representations and beliefs about illnesses shape the manifestation of symptoms and the meanings of sensations; 2) The socialization of personal trauma and chronic stress, as the way in which individuals are socially primed to cope or to reframe personal trauma and chronic stress affects bodily symptoms; 3) Moral judgment, as stigma and ethical evaluations of symptoms impact coping abilities and resilience. In particular, we focus on the disorder known as PNES (Psychogenic-Non-Epileptic Seizure) to show how cultural meaning co-determines the development of such seizures. We introduce the notion of interoceptive affordances to account for the cultural scaffolding of patients’ bodily experiences. Finally, we suggest that effective treatments of FND must act upon meaning in all of its aspects, and treatment adequacy must be assessed according to the cultural diversity of patients.
“Can naughty be healthy?”: Healthism and its discontents in news coverage of orthorexia nervosa
Amy A. Ross Arguedas
Orthorexia nervosa was first proposed as a diagnosis in 1997, referring to a pathological obsession with healthy food. While not formally accepted by the medical establishment, since its inception, it drew the attention of news outlets around the world. This paper examines almost two decades of news coverage about orthorexia to understand how writers have made sense of the proposed diagnosis. Based on an inductive thematic analysis of 492 articles, I find news stories have overwhelmingly framed orthorexia as a medical problem but relied on narratives that mix moral and medical beliefs to explain what is problematic about it, depicting it as absurd, obnoxious, paradoxical, and dangerous. I also examine how shifting explanations of orthorexia’s causes differentially allocate responsibility, presenting it as a matter of personal choice when associating it with diets, while presenting orthorexics as victims in technology-focused explanations. I compare orthorexia coverage with discourses about obesity and eating disorders to show how the label simultaneously draws from and contests preceding health discourse. While narratives about orthorexia demonstrate the pervasiveness of medicalization, I suggest they can also be read as a backlash against healthism, relying on metaphors of mental health, illness, and risk to speak to healthism in its own language.
Invoking death: How oncologists discuss a deadly outcome
Alexandra Tate
Existing sociological research documents patient and physician reticence to discuss death in the context of a patient’s end of life. This study offers a new approach to analyzing how death gets discussed in medical interaction. Using a corpus of 90 video-recorded oncology visits and conversation analytic (CA) methods, this analysis reveals that when existing parameters are expanded to look at mentions of death outside of the end-of-life context, physicians do discuss death with their patients. Specifically, the most frequent way physicians invoke death is in a persuasive context during treatment recommendation discussions. When patients demonstrate active or passive resistance to a recommendation, physicians invoke the possibility of the patient’s death to push back against this resistance and lobby for treatment. Occasionally, physicians invoke death in instances where resistance is anticipated but never actualized. Similarly, death invocations function for treatment advocacy. Ultimately, this study concludes that physicians in these data invoke death to leverage their professional authority for particular treatment outcomes.
Rethinking decision-making in the context of preventive medication: How taking statins becomes “the right thing to do”
Louisa Polak, Judith Green
To understand decision-making in the context of longterm preventive medication, we explore the way “deciding” articulates with household medication practices and other everyday routines. Taking statins as a case study, we use qualitative data from interviews with 34 participants in the UK who had all been offered statins; 19 were currently taking them. Although all participants reference similar information about statins, the way they assemble and use their knowledge varies: there is a marked asymmetry between participants taking statins and those not taking them. Deliberation is a prominent feature of accounts of deciding not to take statins, but seldom visible within accounts of those taking them. Statin-takers emphasise that they have “no choice” about taking them, while non-takers stress the need to “think about it”; statin-takers’ accounts prioritise biomedical tests over experiential knowledge, whereas non-takers sometimes prioritise experiential knowledge. All participants reference similar theoretical and experiential knowledge about side-effects, but whereas non-takers often use this knowledge to explain their decision to decline statins, those taking statins downplay both their own experiences and the likelihood that these are due to statins. To account for these asymmetries, we propose a model of decision-making in which deciding upon a course of action entails constructing a narrative presentation of medication use that frames it as “the right thing to do”. This model helps us examine the two-way interactions between decision-making and the material practices through which regular medication gets taken, interactions often elided from accounts both of decision-making and of medication practice. In the context of longterm medication, the boundaries between “deciding” and “doing” are blurred; decision-making is situated within a web of collaborative, discursively-informed practices.
The will of Congress? Permissive regulation and the strategic use of labeling for the anti-influenza drug Relenza (open access)
Shai Mulinari, Courtney Davis
Through an analysis of the FDA’s approval of the controversial anti-influenza drug Relenza (zanamivir), we interrogate distinct social scientific theories of pharmaceutical regulation. We investigate why, despite internal negative opinions and an Advisory Committee’s non-approval recommendation, the FDA approved Relenza in the late 1990s. Based on a close reading of FDA documents, we show how agency officials guided the manufacturer’s analyses and participated in constructing a tenuous argument for approval. We show how regulators may strategically design drug labels that can justify their permissive regulation. We consider the explanatory power of official accounts and alternative, partially overlapping, theories of pharmaceutical regulation in the Relenza case, and develop new insights into the institutional dynamics of regulator-industry relations. We find little or no evidence that the FDA was primarily driven by public health concerns, pressure from disease-based patient activism, or a consumerist and neoliberal regulatory logic, although some of these explanations provided managers with convenient rhetoric to rationalize their actions. Rather, we argue that the Relenza case highlights contradictions between a scientific culture at FDA, conducive to rigorous product evaluations, and the agency’s attempts to accommodate higher-level political (i.e. Congress) and industry demands conducive of permissive regulation – consistent with some aspects of reputational and capture theories, as well as with corporate bias theory.
Sociology of Health and Illness
DIY gerontechnology: circumventing mismatched technologies and bureaucratic procedure by creating care technologies of one’s own (open access)
Jenny M. Bergschöld, Louis Neven, Alexander Peine
This study analyses ‘Do‐It‐Yourself’ (DIY) gerontechnologies and shows that they can be viable and valuable alternatives to ‘ready‐made’ gerontechnologies. Using the concept of innosumption, we analyze the work of care workers in gerontechnology showrooms in Norway. We show how and why care workers will sometimes advice older adults to assemble DIY‐gerontechnologies. Such DIY‐gerontechnologies are not high‐tech solutions made by technology producers, but creative solutions that older adults’ suit to their specific needs and assemble for themselves from mundane objects that are available in shops. So far, analyses of the design, implementation and use of gerontechnologies have almost exclusively focused on professionally designed and produced ‘ready‐made’ gerontechnologies. But for various reasons, ready‐made gerontechnologies often do not fit in well with the lives of older people. In such cases, care workers guide older people to the innosumption of DIY‐gerontechnologies that offer workable solutions that are useful, quickly implemented, easily understandable and often cheap. We show that and how the existence of DIY‐gerontechnologies questions the reasons behind the strong and widely accepted assumption that only high‐tech innovations are a proper solution to the needs of older people.
Attending to difference: enacting individuals in food provision for residents with dementia
Annelieke Driessen, Rebeca Ibáñez Martín
In the face of warnings about total institutions and growing concern about the quality of care, healthcare professionals in Western Europe and North America have increasingly been exhorted to tailor their services to individuals in their care. In this article, we invite our readers to become more interested in the kinds of differences care is being tailored to, and with what effects. Focusing on food provision for residents with dementia, we present three repertoires through which care workers attend to, and enact different sets of differences between individuals: providing choice allows residents to express fleeting preferences; knowing residents places emphasis on care providers’ familiarity with a person; and catering to identities brings to the fore the tastes which make up part of who someone is. The analysis brings attending to difference to the fore as a practical process and suggests that tailoring care requires sensitivity to the different kinds of individuals enacted when attending to difference.
Where next for understanding race/ethnic inequalities in severe mental illness? Structural, interpersonal and institutional racism (open access)
James Y. Nazroo, Kamaldeep S. Bhui, James Rhodes
In this article we use the example of race/ethnic inequalities in severe mental illness to demonstrate the utility of a novel integrative approach to theorising the role of racism in generating inequality. Ethnic minority people in the UK are at much greater risk than White British people of being diagnosed with a severe – psychosis related – mental illness, and this is particularly the case for those with Black Caribbean or Black African origins. There is entrenched dispute about how we might understand the drivers of this inequality. To address this dispute we build on, and to a certain extent refine, established approaches to theorising structural and institutional racism, and integrate this within a theoretical framework that also incorporates racist/discriminatory interactions (interpersonal racism). We argue that this provides a conceptually robust and thorough analysis of the role of inter‐related dimensions of racism in shaping risks of severe mental illness, access to care, and policy and practice responses. This analysis carries implications for a broader, but integrated, understanding of the fundamental drives of race/ethnic inequalities in health and for an anti‐racism public health agenda.
‘Every single minute and hour is scrutinised’: neoliberalism and Australian private mental health care
Lisa Dawson, Jo River, Andrea McCloughen, Niels Buus
There is little understanding of how recovery‐oriented approaches fit within contemporary mental healthcare systems, which emphasise biomedical approaches to care, increased efficiency and cost‐cutting. This article examines the established models of service delivery in a private, youth, mental health service and the impacts of the current system on staff. It explores whether the service is prepared or capable of adopting recovery‐oriented approaches to care. Qualitative interviews were undertaken with staff and thematically analysed to understand the everyday practices on the unit. Data suggest that economic efficiencies and biomedical dominance largely shaped how health care was organised and delivered, which was perceived by staff as inflexible to change. Additionally, findings suggest that market‐oriented principles associated with neoliberalism restricted the capacity of individuals to transform services in line with alternative models of care and lowered staff morale. These finding suggest that, while neoliberal ideologies and biomedical approaches remain dominant in organisations, there will be challenges to adopting alternative recovery‐oriented models of care and promoting healthcare systems that understand mental health issues in broader socio‐political contexts and can flexibly respond to the needs of service users.
Gender norms and social norms: differences, similarities and why they matter in prevention science (open access)
Beniamino Cislaghi and Lori Heise
Two streams of theory and practice on gender equity have begun to elide. The first is work conducted to change social norms, particularly using theory that emerged from studies in social psychology. The second is work done on gender norms, emerging historically from feminist scholars working to counter gender inequality. As these two streams of work intersect, conceptual clarity is needed to understand differences and similarities between these two traditions. Increased clarity will improve efforts to address harmful norms and practices. In this article, we review similarities and differences between social and gender norms, reviewing the history of the concepts and identifying key tension points of contrast. We identified six areas of comparison that might be helpful for practitioners working for the promotion of global health as they make sense of social and gender norms. We then offer a definition of gender norms for practitioners and researchers working at the intersection between these two theories. Our definition draws from the two different streams of thought of how norms influence people’s actions, acknowledging the double nature of gender norms: beliefs nested in people’s minds and embedded in institutions that profoundly affect health‐related behaviours and shape differential access to health services.