What drives distress? Rethinking the roles of emotion and diagnosis among people with diabetes in Nairobi, Kenya
Emily Mendenhall, Abednego Musau, Edna Bosire, Victoria Musito, David Ndetei, Melanie Rock
Type 2 diabetes mellitus is a condition that both results from and produces social and psychological suffering. As ‘diabetes’ increases among low income patients in poorer nations, new challenges arise that drive, co-occur, and result from the condition. In this article, we describe how social suffering produces diabetes by way of addressing the varied social, psychological, and biological factors that drive diabetes and are reflected in diabetes experiences among patients seeking care at a public hospital in Nairobi, Kenya. We recruited a non-probability sample to participate in a cross-sectional study of 100 patients (aged 35–65 years), where half of the participants sought care from a diabetes clinic and half sought care from the primary healthcare clinic. We obtained informed consent in writing, and collected life history narratives, surveys, anthropometrics, and biomarkers. This paper evaluates survey data using frequencies and regression tables. We found that social factors as opposed to disease factors were major drivers of psychological distress among those with and without diabetes. Psychological distress was associated with female gender and feelings of financial and personal insecurity. We also found insulin resistance was common among those undiagnosed with diabetes, suggesting that many seeking primary care for other health conditions did not receive a routine diabetes test (most likely because it is an out-of-pocket cost, or other competing social factors) and therefore delayed their diagnosis and care. Thus, social and economic factors may drive not only emotional distress among people with diabetes but also delayed care seeking, testing, and self-care as a result of cost and other social challenges.
Evaluating herbal medicine preparation from a traditional perspective: insights from an ethnopharmaceutical survey in the Peruvian Amazon
Giorgia Tresca, Olivia Marcus, Matteo Politi
The field of medical ethnobotany has historically contributed to the advancement of modern pharmaceutical and biomedical science through bringing discoveries from the field into the laboratory. In ethnopharmacology, a sub-field of ethnobotany, there is a concerning lack of ethnographic methods reported in the literature. The ethnographic approach is essential for detailing traditional methods of preparation and administration of plant medicines, yet pharmaceutical researchers overemphasize western epistemologies of medicinal discovery and production. In the present work, we propose an ethnopharmaceutical survey as a model to investigate the culturally recognized standards necessary for the formulation of herbal medicines. Fieldwork based on participant observation and semi-structured interviews examined the modes of preparation employed by traditional healers in the Amazonian region of San Martín, Peru. The authors draw on anthropological insight into plural epistemological encounters and propose an ethnopharmaceutical approach that takes seriously the Amazonian methods and perceptions for the preparation of traditional plant medicines.
Alternative health care and holistic spiritual practices have become increasingly popular in many Western countries, especially among women, who often claim them to be deeply transformative. This paper presents an ethnographic study of women’s tantric retreats in Northwest Europe that aimed to help women reconnect with their vital sexual energy, rediscover the sacredness of their female bodies, and possibly heal from damaging and even traumatic experiences regarding their femininity and sexuality. It draws on Turner’s influential view on ritual as a liminal space in order to account for the transformative potential of these workshops. Specifically, it applies Hinton and Kirmayer’s flexibility hypothesis, which suggests that healing rituals shift people’s mode of being-in-the-world, including their cognitive, emotional, and physical state or stance, towards openness to new ways of being. First, it highlights different ontological domains where shifts took place, notably somatic state, self-image and relationality. Subsequently, it identifies the main modalities that were used for enabling transformation: the embodiment of the metaphor of the goddess/the divine as present in each woman and the use of intimate, loving touch and meditative awareness. The process of transformation and healing elucidated in this way engaged the physical, emotional and cognitive levels as interacting dimensions, relying foremost on the activation of a vital energy that both gave participants a deep sense of self and connected beyond the self.
This paper discusses notions of health in alcohol use among new Japanese immigrants in a Japanese pub in Honolulu, Hawaiʻi. Japanese-style pubs are a space mediating sociability and subjective health through alcohol consumption, a symbol of good health. In the context of the pub, Japanese immigrants form strong intragroup bonds reinforcing a therapeutic narrative; the sensory experience created through social drinking offers a method of resolving stress, validating affect, and positively shaping well-being. However, positive health outcomes are stratified by social position, gender, and cultural capital, leading to negative health experiences for staff and the marginalization of problems. Therapeutic potential is embedded in a commercial space and regularly available to affluent clients. Health becomes a plural, contradictory concept tied to the body, biomedicine, and economy. This paper contributes towards broader understandings of the intricacies of substance use and the production of health knowledge and lacunae within transcultural contexts.
Men with cancer and their experiences of marital relationships: a struggle for control and balance
Helle Ploug Hansen & Tine Tjørnhøj-Thomsen
Presently, there is a general understanding that health, illness and rehabilitation should be studied in a relational context, and that people’s experiences, perceptions and practices in relation to health and recovery are formed relationally and contextually. The aim of this paper is to consider and discuss how men experienced their marital relationships, after being diagnosed with cancer. The empirical material is based on the authors’ ethnographic fieldworks, including participant observation and interviews with men who have or have had cancer. The analysis is informed by the anthropologist Michael Jackson’s notion of intersubjectivity and his argument that intersubjectivity continually and dialectically moves between the complementary poles of compassion and conflict. We demonstrate how the men appreciated their partners’ support and care, but also that the cancer disease and the treatment could cause marital friction and tension. Due to their new life circumstances and subject positions, the men continuously shifted between the poles of compassion and conflict, struggling for balance and control, including negotiations of how to perform their masculinity.
Medical pluralism in the aftermath of cancer: health seeking actions and cancer patients’ shaping of trajectories to healing
Frank Hansen, Gro Rosvold Berntsen, Anita Salamonsen
Improved treatment methods for cancer are increasing the number of survivals in Norway. In turn, the group of people struggling with late effects after the treatment is growing. Late effects could be physical, psychological or existential conditions caused by treatment or the experience of illness. This qualitative study explores health-seeking actions among nine Norwegian people with cancer, and how they shape their trajectories to healing. Various health-seeking actions were identified through content analysis, and categorized as conventional, CAM, self-care, religious coping and traditional healing. Medical pluralism particularly flourished in the aftermath of cancer. We found that the phenomenon is characterized by: 1) implementation of contradicting models of reality and making pragmatic choices, 2) continuity and change of health seeking actions, 3) medical pluralism as a process, and 4) increased use of CAM and self-care to improve health and well-being in situations where the conventional care system has few available treatment options. To support people with long-term conditions, we need to know how they choose and make sense of their health-seeking activities. We argue that trajectories to healing are dynamic and shaped by people making choices. This process could be understood in greater depth by applying the concept of medical landscapes.
The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term ‘resilience’. During treatment and care, nurses used the term ‘resilience’ in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son’s experience, creating emotional distress for him. She discovered that the everyday use of resilience, devoid of its research connotations, has the potential to create barriers in understanding these experiences for the patient and the caregiver. For example, this everyday use did not account for the relationship that resilience has with growth. It is not just important in terms of diagnosing a tumour, it is also important for supporting the agency of a child and the cultivation of trustworthiness. A focus on growth supports the notion of an “active resilience,” a process informed by research literature to help medical staff and families develop the child patient’s capability for growing into resilience throughout the survivorship experience. By neglecting this relationship with growth, resilience was found to silence the agency and voice of the author’s child which added to the difficulty that she had in providing care. As more children survive cancer, a meaningful use of the term resilience can support their recovery from the adversities of treatment and a life of adverse outcomes. The ethnographic detail provides the context necessary for contributing to and unpacking the normative use of the term resilience in paediatric oncology.
Medical Anthropology Quarterly
This article draws on a decade of ethnographic work with injured U.S. soldiers and veterans to show the collateral effects of military medicine’s salvific promise. In tracing these effects through recent changes in amputation protocols and less spectacular conditions such as posttraumatic stress disorder, I show that the prevalent model of “veteran therapeutics,” which posits cure as the aim of post‐war, has perverse and cruel effects. Drawing on disability theory, I explore alternative ways to read the frictions that soldiers and veterans experience, stretched between the medical model of veteran therapeutics and an emergent sense that cure may be an impossible goal. Alternatively, the article turns to moments when veterans learn to live with disability, rather than living in anticipation of its end. Though small, such moments contain possibilities for a less cruel mode of inhabiting disability, offering incipient signs of what we might call a crip art of failure.
This article considers the ways in which the concept of volume is deployed to create and sustain surgical expertise. Drawing on research at a large plastic and orthopedic surgery hospital in Tamil Nadu, India, I explore the ways in which a steady supply of trauma is converted into medical expertise, reputation, and care. Volume functions as a key metric by which this conversion takes place. This hospital is particularly well known for its cutting‐edge treatment of severe trauma, and, while some Indian hospitals have used their combination of low cost and high expertise to attract foreign patients for medical tourism, this hospital has converted its supply of trauma patients into surgical expertise that brings foreign surgeons there to learn. This article therefore also considers the role of visiting foreign doctors in this form of clinical tourism.
Ethnographers of clinical rationality often assume that the goal of biomedical practice is to eliminate uncertainty to produce definitive diagnoses. In this ethnography of an academic cardiac intensive care unit (CCU) in the United States, bodies are conceived instead as ever‐changing constellations of problems that make diagnostic certainty irrelevant and require clinicians to construct and reconstruct temporary models to facilitate action. They suspend their uncertainty to “convince themselves” enough to “make moves” on patients, driven by the relentless tempo of critical illness. This necessitates a practice‐oriented model of professional rationality that can account for the flow of time, with implications beyond the biomedical.
Health Care Quality Improvement and the Ambiguous Commodity of Care
Ethan Balgley Manelin
Quality of care has become a major concern of the U.S.’s health care system in recent decades thanks to an energetic social movement and, more recently, interest from health insurers. Ethnographic research at a primary care clinic engaged in an array of quality improvement efforts revealed that physicians navigate two incommensurable views of quality: one aligned with the metric‐oriented quality movement, and the other based on a humanistic vision of their professional role. Against the backdrop of a financialized health care system, these two views represent “differentiated ties” with respect to health care as a commodity. Furthermore, they are used to justify a broad division of labor where support staff and clinic leaders relieve physicians of responsibility for managing, implementing, and reporting quality efforts. These differentiated ties reveal the fundamental ambiguity of health care as a commodity, the resolution of which is a central—albeit implicit—motive of the quality movement.
Reworking the Social Determinants of Health: Responding to Material‐Semiotic Indeterminacy in Public Health Interventions (open access)
Both public health experts and medical anthropologists are concerned with how health is shaped by environmental forces. This creates an important cross‐disciplinary alliance, yet crucial differences in how the two disciplines tend to evaluate health remain. In this article, I compare public health’s “social determinants of health” framework with anthropological interest in the sociality of health and illness. I draw on ethnographic fieldwork in Guatemala’s highlands, to unpack (1) “the social,” (2) “determinants,” and (3) “of health.” Ultimately, I show how the social determinants framework is deployed in ways that risk undermining its stated health justice goals, and highlight the benefits of an approach that does not know what health is ahead of doing research and which works closely with communities to respond to the effects of its own intervention. The article argues for the need to rework the emphasis on social determinants to make space for health’s material‐semiotic indeterminacy
In Kenya, globally circulating HIV surveillance techniques are implicated in an emergent experimental terrain that merges scientific interest with health administration agendas. Sex worker activists reroute and repurpose this technocratic knowledge to more precisely pinpoint and defy the undemocratic imperatives of an encroaching experimental order that aims to govern the health of key populations. Reconstructing the conditions of emergence of these evidentiary politics reveals growing interdependencies between sex workers and scientific and technical experts as they are brought into increasing interaction with each other.
Weak Data: The Social Biography of a Measurement Instrument and How It Failed to Ensure Accountability in Home Care (open access)
Klaus Hoeyer, Malene Bødker
Contemporary health and social care is saturated by processes of datafication. In many cases, these processes are nested within an ostensibly simple logic of accountability: Define a politically and morally desirable goal, then measure the level of achievement. This logic has come to permeate public health initiatives globally and today it operates in most health care systems in various ways. We explore here a particular instantiation of the logic associated with the introduction of a measurement instrument used in Danish home care. Building on ethnographic fieldwork, interviews, and analysis of policy documents, we show how the instigated processes of datafication—despite hopeful political claims—erode care levels and disempower older people. We believe that these findings can be of relevance for other settings that subscribe to the same accountability logic and to similar forms of measurement instruments.
There is a growing anthropological literature analyzing the place that epidemiological surveillance occupies in contemporary global health. In this article, I build on this literature and take it into new directions by exploring what I call the epidemiological imaginaries of the social. Drawing on science and technology studies, I suggest that epidemiologists help make up the world, articulating complex and normatively loaded visions of social life that both enable and constrain action. More specifically, I argue that epidemiologists tell stories about the type of societies and people that compose the world and that these stories often shape global health policies and programs in powerful ways. To substantiate this argument, I examine epidemiologists’ efforts to map smoking in postcolonial Africa, documenting how they have imagined smokers and smoking through the lense of modernization theory and showing how these imaginaries have shaped tobacco control policies in the region up to this day.
‘A small cemetery’: death and dying in the contemporary British operating theatre (open access)
Surgeon Henry Marsh begins his autobiography, Do No Harm, with a quotation from the French practitioner René Leriche, “Every surgeon carries within himself a small cemetery, where from time to time he goes to pray—a place of bitterness and regret, where he must look for an explanation for his failures”. This article uses memoirs and oral history interviews to enter the operating theatre and consider the contemporary history of surgeons’ embodied experiences of patient death. It will argue that these experiences take an under-appreciated emotional toll on surgeons, but also that they are deployed as a narrative device through which surgeons construct their professional identity. Crucially, however, there is as much forgetting as remembering in their accounts, and the ‘labour’ of death has been increasingly shifted out of the operating theatre, off the surgeons’ hands and into the laps of others. The emotional costs of surgical care remain understudied. Indeed, while many researchers agree that undergoing surgery can be a troubling emotional experience for the patient, less scholarly attention has been paid to the emotional demands performing surgery makes on surgical practitioners. Is detachment the modus operandi of the modern surgeon and if so, is it tenable in moments of emotional intensity—like patient death?
Awaking insomnia: sleeplessness in the 19th century through medical literature
Gaspard Aebischer, Philip Alexander Rieder
Sleep disorders have received growing public and scientific attention in the last decades. Scientific research and publications on sleeplessness are ongoing and considerable progress has been made on the medical understanding of sleep. And yet, insomnia affects an ever-growing number of people around the globe and remains both a difficult and common complaint general practitioners have to deal with on a daily basis. Sleeplessness is not new, although its transformation from a state of accepted wake to that of exasperating insomnia is a relatively recent transition in which, this article argues, Western medicine took an active part. In the 19th century, the theorisation of different nervous disorders and later of neurasthenia shaped the transformation of insomnia from a constituent of everyday life into a pathology. Based on research in French medical journals published in the second half of the 19th century, this article retraces a succession of medical paradigms for sleeplessness, including ‘symptomatic insomnia’, ‘nervous insomnia’ and interestingly, ‘insomnia’ as a key element in neurasthenia theories. The analysis of medical discourse in all successive theories reveals the decisive influence of physicians in the medicalisation of insomnia, their sociocultural representations echoing patient’s complaints as well as professional imperatives.
Synthetic biology represents a recent and explicit attempt to make biology easier to engineer, and through this to open up the design space of genetic engineering to a wider range of practitioners (including, but not limited to, engineers). Proponents of this approach emphasize the standardization of practices as key to successful biological engineering; yet, meaningful transatlantic differences are emerging with respect to the constitution of key concerns and the governance of synthetic biology in the United States (US) and the United Kingdom (UK). In this article, I tease out how national approaches to governing synthetic biology are being framed against different salient past experiences with recombinant DNA technology. In the US, the governance of synthetic biology is consistently articulated in relation to the early days of recombinant DNA technology and the self-governance mechanisms pioneered in response to Asilomar. In the UK, more recent experiences with genetically modified crops provide the overarching imaginary against which governance initiatives are being proposed. I suggest that these differing sociotechnical imaginaries have implications for how new “groups of concern” are being defined in relation to synthetic biology and how measures to contain perceived risks are being pursued in the US and Britain.
From anatomy to patient experience in pelvic floor surgery: Mindlines, evidence, responsibility, and transvaginal mesh
Ariel Ducey, Claudia Donoso, Sue Ross, Magali Robert
Beginning in the late 1990s, surgeons around the world widely adopted the transvaginal placement of permanent synthetic mesh for the treatment of several common pelvic floor disorders in women. By 2012 it had become the subject of extensive litigation, including one of the biggest mass-tort cases in U.S. history, with litigants reporting debilitating and unexpected complications. Based on qualitative research that includes interviews with surgeons, observations of medical conferences, and analysis of archival materials, we argue the adoption of transvaginal mesh cannot be fully explained without recognizing the role of mindlines, or collective moral-epistemological ways of knowing and acting responsibly. The adoption of mesh was anchored in a mindline focused on repairing anatomy. The harms that resulted from transvaginal mesh necessitated a shift to a focus on patient experience. We analyze the role of evidence-based medicine (EBM) in the re-organization of these surgeons’ mindlines, showing that mindlines are not reducible to evidence as defined by EBM and that evidence thus defined facilitated the adoption of transvaginal mesh.
Expanding boundaries in psychiatry: uncertainty in the context of diagnosis‐seeking and negotiation (open access)
Psychiatric diagnosis has become pervasive in modern culture, exerting an increasing influence on notions of personhood, identity practices and forms of self‐governing. The broadening of diagnostic categories and increasing awareness regarding popular diagnostic categories has led to an increased demand for formal diagnosis within clinical encounters. However, there is continuing ‘epistemological uncertainty’ (Fox 2000) surrounding these entities, in part due to their lack of associated clinical biomarkers and their ‘fuzzy boundaries’. Meanwhile, this diagnostic expansion has encountered resistance from those concerned with the alleged ‘over‐pathologisation’ of emotional distress. Drawing upon the concepts of ‘diagnostic cultures’ (Brinkmann 2016) and the ‘looping effects of human kinds’ (Hacking 1995), this article considers some of the competing forces acting upon the contested boundaries of diagnostic categories as they play out within diagnostic interactions. The study involved ethnographic observations of diagnostic encounters within several UK‐based mental health clinics. By focusing on interactions where diagnosis is negotiated, findings illustrate the role played by different kinds of diagnostic uncertainty in shaping these negotiations. It is argued that diagnostic reification plays a key role in the moral categorisation of patients, particularly where there is uncertainty regarding individual diagnostic status.
Determining the boundaries around processes of ‘normal’ ageing and pathological cognitive deterioration associated with Alzheimer’s disease (AD) is a difficult process, complicated further by the expansion of the disease category to include mild cognitive impairment (MCI). MCI is a label used to identify individuals with the symptoms of cognitive deterioration not attributable to ‘normal ageing’ but deemed to be ‘at risk’ of developing AD despite clinical uncertainty around whether individuals will go on to develop the condition in the future. Drawing on qualitative data gathered across an out‐patient memory service, this article examines practitioners’ accounts of the complexity associated with constructing the boundaries around MCI, AD and age in the clinic. Practitioners utilise uncertainty by classifying patients with MCI to keep them on for review to account for the possibility that patients may go on to develop AD but they also recognise the difficulty in predicting future progression to AD. Negotiating classification boundaries in the clinic is, however, not only about managing uncertainty regarding potential future risk but also about navigating the wider social and political context in which ageing and cognitive deterioration intersect, and are constructed and managed.
Learning to manage uncertainty: supervision, trust and autonomy in residency training
Naike Bochatay, Nadia M. Bajwa
Sociologists have debated whether and how medical trainees are socialised to deal with uncertainty for decades. Recent changes in the structure of medical education, however, have likely affected the ways that resident physicians learn to manage uncertainty. Through ethnographic case studies of academic medical centres in Switzerland and the United States, this article provides new insights into the processes through which residents learnt to manage uncertainty. These processes included working under supervision, developing relationships of trust with supervisors and gaining autonomy to practise independently. As a result, residents developed different attitudes towards uncertainty. Residents at the Swiss medical centre tended to develop a more pragmatic attitude and viewed uncertainty as something to be addressed and controlled. On the other hand, residents at the American medical centre tended to develop an acceptive attitude towards uncertainty. More broadly, residents learnt to reproduce their supervisors’ attitudes towards uncertainty. This article therefore provides new perspectives on continuity and the reproduction of social phenomena in medical education.