Science, Medicine, and Anthropology
Lots and lots to read this month, starting with an article by our In the Journals contributor Julia Kowalski in Political and Legal Anthropology Review:
Bureaucratizing Sensitivity: Documents and Expertise in North Indian Antiviolence Counseling
Julia Kowalski
Following transnational legal standards, India’s antidomestic violence legislation is designed to sensitize the state to gendered violence by appointing nongovernmental organizations to help plaintiffs document abuse. Drawing on fieldwork at a family counseling center in Rajasthan, I show that staff balanced their roles as family counselors and “service providers” to plaintiffs as sensitization discourse revalued the complex documentary practices required by both activities. In this context, bureaucratic elements of counselors’ practices were highlighted, and the role of documents in supporting expert interactions with clients was erased, consolidating expertise along existing hierarchies of class and status that organized activists and staff at the center. By consolidating expertise, “gender‐sensitive” state policies may erase precisely the vernacular modes of responding to gendered inequality that they are meant to incorporate.
(C)ELSI‐us: Reducing Friction with Indigenous Communities in Genomic Research
Māui Hudson, Phillip Wilcox, Barry Smith, Angela Beaton, Moe Milne, Khyla Russell
The importance of culture in framing how Indigenous communities engage with researchers and the context of genetics research does not often get the focus it deserves. Roderick R. McInnes (2011) made an effort to change this by using his 2010 Presidential Address to the American Society of Human Genetics to explore the topic “Culture: The Silent Language Geneticists Must Learn—Genetic Research with Indigenous Populations.” The following quotation from his speech outlines the broader social context in which engagement with Indigenous communities has occurred and its usual outcome:
As geneticists and genomicists have reached out to study the world’s populations, particularly indigenous populations, the opportunities for cultural misunderstanding have grown … the cultural perspective of the researchers, and their more powerful cultural position in society, has prevented them from fully considering the priorities of the study population, well‐intended research could not be undertaken or completed, and the population under study has been left with a sense of mistrust, stigmatization, or weakened political authority. (McInnes 2011)
“Pop‐Up” Métis and the Rise of Canada’s Post‐Indigenous Formation
Jessica Kolopenuk
The study of DNA has changed the way that many disciplines are practiced and is altering the way that human variation is understood. Further, DNA‐based understandings of human ancestry are affecting how identities of difference are formed.1 What is commonly called “the genomic revolution” is contributing to the formation of what some describe as a posthuman condition, in which modern markers of “the human” are increasingly colonized by “the code” (Kroker 2014, 5; see also Fox Keller 1995; Haraway 2016).2 The unprecedented politics of the shifting times appear to be “popping up” suddenly as DNA‐based techno‐sciences and discourses proliferate. However, what appears as a revolution does not, in actuality, mark a moment of transformation, but “a continuous and accelerating pattern of technological development based on scientific advances” (Babbitt 1965, 106).
Genomics and Working with Indigenous Communities in the Pacific
Elizabeth Matisoo‐Smith
As a biological anthropologist, I am interested in understanding human history and human diversity. I started studying mtDNA in the early 1990s during my PhD research, using it to try to understand population origins and to reconstruct the migration pathways that resulted in the human settlement of the Pacific. When I started my research, it was about the time that the Human Genome Diversity Project was proposed and debates about engaging with Indigenous communities were becoming more public and vocal. I saw that this was a serious issue and very pertinent in New Zealand and the Pacific, so I tried to think of a way to obtain data that would allow me to answer the questions I was interested in from an academic perspective but without using samples collected from Indigenous people.
From Genetics to Identity and Back Again: Genetic Continuity and Indian Reemergence in Uruguay
Mónica Sans, Gonzalo Figueiro
In Uruguay, population genetic studies focused on ancestry began in the 1980s. Around the same time, in 1989, the first association of Native descendants, the self‐denominated Charrúa Indian descendants association (Asociación de Descendientes de la Nación Charrúa, or ADENCH) was founded. Until that moment, Uruguayan national identity was built upon the idea that, in sharp contrast to all other South American countries, the country lacked Native populations; this idea is still predominant in the Uruguayan self‐image. Following studies based on morphology proposing a significant Native contribution (e.g., Sans, Mañé‐Garzón, and Kolski 1986), and after the first comprehensive study based on classical markers showing Native contributions varying from 1 to 20 percent depending on the region (Sans, Salzano, and Chakraborty 1997), interest in the Native genetic background of the population increased. The introduction of mitochondrial DNA (mtDNA) markers in the late 1990s introduced new possibilities for analysis (Bravi et al. 1997), as mtDNA allows researchers to determine the existence of Native maternal ancestors independent of their closeness or remoteness in time. We use mtDNA as an important marker in two different ways: it is the first analysis we do with people who want to confirm a possible Native ancestor, and we use it for our own research about Native origin haplogroups, their dispersion, and their chronology. Surprisingly, the study of the maternal contribution in a city of the northeastern region showed 62 percent Native contribution (Bonilla et al. 2004). As in other regions in Latin America, mtDNA showed directional mating (i.e., regular reproductive events involving men from one population and women from another population) of Native women with European or European‐descendant men. This can be explained by several different causes—though mainly by the killing of Native men in several violent events (Sans 2000).
Thurka Sangaramoorthy
Growing numbers of immigrants work and live in rural, geographically isolated areas throughout the United States, places without previously settled immigrant populations. Rapid immigration to such areas already struggling with poverty, weak public infrastructures, and high concentrations of uninsured residents has given way to an increasingly precarious landscape of care. The neoliberal logics of American health care and contentious debates over immigration reform shape this landscape and condition relations among providers, immigrants, and others. Through what I call “band‐aid” care and the informal transactions that characterize it, such as rationing, bartering, hoarding, willful noncompliance, and goodwill, providers and immigrants counter these logics of exclusion and inequality by participating in the dynamic improvisation of care considered illicit and often prohibited under the market‐based economic rationale of health‐care provision. Social obligations and moral legitimacy benefit otherwise marginalized providers who engage in this landscape of care, while vulnerable immigrants gain entry and access to vital resources within this landscape through sociality and interdependence, which engender opportunities (however fraught) for living. Yet providers and immigrants understand band‐aid care to be necessary, just, moral, and legitimate in response to precarity characterized by geographical isolation, economic scarcity, civic inequality, market‐based health care, and exclusionary policies.
Conceptualising metabolic disorder in Southern Africa: Biology, history and global health
Megan Vaughan
This paper traces the history of the concept of metabolic disorder in global health and its application to the collection of health metrics relating to the ‘epidemic’ of non-communicable diseases in Southern Africa, with a focus on Malawi. Although the contemporary science of metabolism points to complexity and contingency, the application of a simplified version of ‘metabolic disorder’ or ‘metabolic syndrome’ as the supposed central driver of non-communicable disease in low- and middle-income countries runs the risk of obscuring the ways in which local circumstances and histories interact with global forces to produce epidemiological change. The paper discusses health data collection and its interpretation in Malawi to demonstrate how the use of this concept has led to a narrowing of the category of non-communicable disease and a neglect of the role of infectious disease in producing chronic conditions. Finally, the paper points to alternative approaches which might yield a better understanding of pressing health problems.
Emily Xi Lin
Drawing upon 18 months of ethnographic fieldwork in China from 2013 to 2014, this article argues that moral hierarchies within autism parenting in fact reproduce local socioeconomic inequalities. In China, medical specialists, special education teachers and prominent parent advocates attempt to manage autism in a context of scarce resources by teaching parents how to serve as their children’s lifelong therapists. Yet, by focusing primarily on parents’ love for their children, while neglecting pragmatic issues related to social–economic disparities, autism advocates fail to understand the difficulties of parents with few socioeconomic resources. I illustrate my arguments by delving deeply into two case studies which illustrate both extremes of the moral hierarchy in autism parenting within China. In ethnographically attending to how parents are made into behavioral therapists and the moral hierarchies within autism parenting in China, this paper describes a culturally specific adoption of ABA. This article argues that scholars and local disability advocates need to pay closer attention to local particularities, including cultural histories of parenting, as well as the complex interactions between disability and social and economic inequalities, so as to better comprehend and address the immediate, existential, and long-range challenges which parents with little social capital face in managing autism.
The Golden Helix: Origins, ethnicity and preconception genetic screening in Israel
Anna C. Zielinska, Ilana Löwy
The unique Israeli nation-wide programme of voluntary, free-of-charge programme of “population genetic screening for reproductive purposes” screens for “frequent and severe” genetic diseases. It is grounded in the observation that specific groups in Israeli population carry “founder mutations”: changes in DNA appearing with a high frequency in a given population. The Israeli enthusiasm for genetic testing and screening was linked with the Zionist ideology, traditional Jewish valorization of the family, a shared understanding of difficulties of life in Israel, fear of disastrous consequences of a pregnancy and, for some, also a lingering influence of eugenic ideas. This article proposes a somewhat different view. It argues that the development of state-sponsored genetic screening in Israel was to an important extent a result of a partly contingent encounter between a national ideology, a traditional Jewish respect for science – or for some the absence of a critical view of science – the development of new biomedical technologies, and the multilevel professional interests of physicians and geneticists: from curiosity and a wish to help mutation carriers – Jewish and non-Jewish – to have healthy children, to financial interests in the development of genetic testing and a widespread apprehension of juridical pursuits.
Mie S. Dam, Mette N. Svendsen
This paper explores how animal modelling is negotiated and practised in the field of translational neonatology research in Denmark. Based on ethnography from a biomedical research centre, NEOMUNE, in which veterinary and medical scientists worked on developing a ‘preterm pig brain model’, we examine how they strived to balance traditional scientific norms of standardisation against clinical researchers’ requests for clinical care in the modelling practice. We develop the notion of ‘patientising’ to capture how the research piglets are made to model not only the biological consequences of prematurity, but also the suffering of the human patient entitled to individual care. Based on this ethnographic fieldwork we argue that the demand for clinical relevance in translational research highlights the animal laboratory as also being a “moral laboratory” (Mattingly, 2014). In seeking to align research piglets and human infants, the researchers engage closely interdependent scientific and moral uncertainties as they work out the proper relations between the suffering of the research animal and the health of the human infant.
Neil Stephens, Emma King, Catherine Lyall
Tissue engineering is a set of biomedical technologies, including stem cell science, which seek to grow biological tissue for a diversity of applications. In this paper, we explore two emergent tissue engineering technologies that seek to cause a step change in the upscaling capacity of cell growth: cultured blood and cultured meat. Cultured blood technology seeks to replace blood transfusion with a safe and affordable bioengineered replacement. Cultured meat technology seeks to replace livestock-based food production with meat produced in a bioreactor. Importantly, cultured meat technology straddles the industrial contexts of biomedicine and agri-food. In this paper, we articulate (i) the shared and divergent promissory trajectories of the two technologies and (ii) the anticipated market, consumer, and regulatory contexts of each. Our analysis concludes by discussing how the sectoral ontologies of biomedicine and agri-food impact the performative capacity of each technology’s promissory trajectory.
Else Vogel
In this article, drawing on ethnographic fieldwork in the Netherlands, I explore how weight management practices adapt scientific knowledge to the pragmatics of daily life. I contrast two ‘metabolic logics’: one premises calculating food and exercise to ensure energy balance; the other, operating as a critique to the first, puts its hope in activating people’s metabolic rate. Metabolic logics, I stress, do not just present ideas on bodily functioning. They are also and importantly a practical and material affair. The first approach incites a desire and sense of responsibility in people to have control over and correct their bodies, while the second, foregrounding less measurable forms of health, hinges on a person’s responsivity and trust in other active entities. Metabolic practices do not merely follow scientific insights into how fat comes about; they include estimations of what knowledge is helpful in daily life when overweight is a concern. However, innovation is difficult, as in exercise machines, recommended dietary intakes or diet shakes, figures of food as fuel and bodies as machines stubbornly sediment. In conclusion, I suggest that when ‘thinking metabolically’ we address metabolism as part of the socio-material practices that narrate eating, bodies and moving together in particular ways.
The multiplicity and situationality of enacting ‘ethnicity’ in Dutch health research articles
Alana Helberg-Proctor, Anja Krumeich, Agnes Meershoek, Klasien Horstman
Previous research has problematised the diversity of conceptualisations and operationalisations of ethnicity within health research and the field of Ethnicity and Health. In this article, we explore how practices in health research and the field of Ethnicity and Health themselves contribute to the enactment of different versions of ethnicity. Using a qualitative content analysis of contemporary peer-reviewed Dutch biomedical and health research, we identified various dynamics in research practices and the research situation, which are relevant to understanding the enactment of multiple versions of ethnicity and specific ethnic and racial categories in health research in the Netherlands. Specifically, we discuss the production of academic publications and the manner in which researchers must establish the premises for ethnicity-specific health research; the organisation and ethnic and racial labelling of the data; and the discussion of new research findings in comparison with previous ethnicity-specific research. Ultimately, our analysis illustrates that, in health research and publications, ethnicity and its relation to health are not simply discovered or found; rather we discuss how the manner in which ethnicity and specific categories of ethnicity are enacted is contingent upon these everyday dynamics of research practices and the specific research situation in which research takes place.
Abril Saldaña-Tejeda
This paper explores scientific and medical discourses on genetics and epigenetics in the context of the increasing rates of obesity and diabetes among Mexican mestizos. It draws on semi-structured interviews with 9 Mexican geneticists that are currently involved in genomic population or genomic medical research linked to diabetes and/or obesity and with 10 medical staff working directly or indirectly with the child obesity clinic at Federico Gómez Children’s Hospital in Mexico City. It looks briefly at scientific discourses that link the very high rates of obesity among Mexican mestizos to an alleged genetic predisposition seen as part of their indigenous heritage. The paper argues that this reinforces the gendered and racialized meanings of mestizaje (mixture) and the hierarchies that this biocultural construct has historically entailed. The paper then looks in depth at the tensions in epigenetic research on obesity, analysing the narratives of the geneticists and doctors interviewed. It shows how mothers are defined as the main channel for the epigenetic modification of bodies and generations, thus intensifying women’s maternal responsibilities for the health of the nation.
Marked ‘h’ for human: Chimeric life and the politics of the human
Amy Hinterberger
Chimeric life forms constitute mergers between two or more distinct beings. This article explores the making of interspecies mammalian chimeras in biomedical research where the availability of human embryonic stem cells and induced pluripotent stem cells has opened the way to radically humanize the biology of other organisms. By showing how chimeric life forms are foundational to biology, however, I loosen the compelling grip that chimeras have as liminal and monstrous. To the story of the chimera, this article replies with another story, that of the human as it is differently enacted at the levels of cells, tissues and organisms. Drawing on fieldwork conducted at a stem cell laboratory and farm animal research institute, the paper argues that meanings of the human become elusive and unknown when intertwined with chimeric life. In conclusion, the article reflects on the transforming politics of the human in biomedical research.
Karen C. Lloyd
HIV treatment as prevention is an emerging biomedical prevention approach utilising routine HIV testing, immediate engagement in HIV care, and the consumption of antiretrovirals to suppress individuals’ viral loads, greatly reducing or eliminating the risk of onward transmission of HIV. Drawing on interviews with HIV scientists, policymakers, clinicians, and advocates, ethnographic field work at three global HIV scientific meetings, and analysis of textual and visual discourse data, I argue that several meso-level discursive practices are transforming the conditions of possibility for living with HIV. I explore three empirical sites—The Elite Society of the Undetectables, Housing Works’ The Undetectables Project, and AIDS Vancouver’s ‘reimagining’ of the Red Ribbon—where ‘being undetectable’, that is, having an HIV viral load that is so low as to be non-infectious, is coming to be centred as the best, perhaps only, way to live as a person with HIV. The centring of ‘being undetectable’ as a technoscientific identity has critical implications for transformations in subjectivity, for the configuring of the moral borders between those who achieve viral suppression and those who do not, and also for the future it becomes possible to anticipate, including the achievement of the so-called ‘End of AIDS’.
Erik Aarden
The social implications of recent developments in the life sciences have widely been theorized in terms of ‘biological citizenship’; a notion that suggests that claims on collective resources are increasingly brought forward by groups of individuals organized around shared molecular biological characteristics, outside of traditional institutional formations centered on the state. In this paper, I propose to amend this notion by situating biological citizenship in its specific context of emergence. I suggest that the notion of molecular biological citizenship from below, with its focus on individual responsibility for disease risks, was in part facilitated by the development of ideas of individual responsibility for phenotypic ‘risk factors’ in the government-funded Framingham Heart Study in the United States. I reconstruct how the federal government retreated from direct operational responsibility for the Study, defined and maintained the boundaries of the population and contributed particular risk-based notions of life over more than six decades of cardiovascular disease research. I suggest that government, population, and life as defined in the Study are indispensable for contemporary notions of biological citizenship and that analysts need to attend to these situated origins in order to productively understand biological citizenship in relation to wider transformations of citizenship at present.
Meat cultures: Lab-grown meat and the politics of contamination
Andy Murray
The prospect of lab-grown meat has attracted a lot of attention. The peak of this attention occurred after the public tasting of the first ‘lab-grown burger’ in August 2013. However, the discourse surrounding lab-grown meat is limited, and largely shaped by the technology’s proponents. This limited narrative restricts the potential for public discussions and debates about the details of lab-grown meat’s development. Such restrictions clash with lab-grown meat proponents’ stated goal of openness and complicate some of their ethical claims. To begin to overcome these restrictions, this paper introduces contamination as a method that brings important excluded elements to bear on narratives of technological development, particularly those that emphasize biological immanence and plasticity. Reading proponent’s narrative alongside related discourses – the industrialization of agriculture, the biomedical history of cell culture, and the work of bioartists and science fiction writers – reveals systematically excluded contaminants that could threaten the technology’s viability. The nature of these contaminants is both material (e.g., microorganisms, fetal bovine serum) and semiotic (e.g., associations with factory farming and fictional dystopias), revealing the usefulness of contamination as a tactic that both encourages paying attention to the ways in which discourse and matter coshape each other and broadens the scope of consideration and discussion around technological development.
Biometric Bodies, Or How to Make Electronic Fingerprinting Work in India
Ursula Rao
The rapid spread of electronic fingerprinting not only creates new regimes of surveillance but compels users to adopt novel ways of performing their bodies to suit the new technology. This ethnography uses two Indian case studies – of a welfare office and a workplace – to unpack the processes by which biometric devices become effective tools for determining identity. While in the popular imaginary biometric technology is often associated with providing disinterested and thus objective evaluation of identity, in practice ‘failures to enrol’ and ‘false rejects’ frequently cause crises of representation. People address these by tinkering with their bodies and changing the rules, and in the process craft biometric bodies. These are assembled bodies that link people and objects in ways considered advantageous for specific identity regimes. By using assemblage theory, the article proposes an alternative interpretation of new surveillance regimes as fluid practices that solidify through the agency of multiple actors who naturalize particular power/knowledge arrangements.
Drugs, Brains and Other Subalterns. Public Debate and the New Materialist Politics of Addiction
Suzanne Fraser, kylie valentine, Mats Ekendahl
Over the last few decades feminists, science and technology studies scholars and others have grappled with how to take materiality into account in understanding social practices, subjectivity and events. One key area for these debates has been drug use and addiction. At the same time, neuroscientific accounts of drug use and addiction have also arisen. This development has attracted criticism as simplistically reinstating material determinism. In this article we draw on 80 interviews with health professionals directly involved in drug-related public policy and service provision in three countries to identify the main ways the neuroscience of addiction (and thus the agency of the brain) is understood. We analyse these understandings using contemporary posthumanist theory to develop new options for conceptualizing matter in public responses to addiction. We close by calling for a new approach to addiction and the brain based on a process model of materiality and public debate.
Sean M. Williams, Kari Nyheim Solbraekke
Cancer patienthood and survivorship are often narrated as stories about hair and wigs. The following article examines cultural representations of cancer in mainstream memoirs, films, and on TV across Western European and American contexts. These representations are both the ideological substrate and a subtly subversive staging of a newly globalized cancer culture that expresses itself as an embodied discourse of individual experience. Wigs have become staples of an alternative story of especially women’s cancer experience, one that contrasts with the advertising slogans of what has been termed ‘Cancer Inc.’ But wigs are also a prop for consumerist self-(re)invention and can be appropriated stereotypically, with regard to stock gendered expectations – despite and alongside their subversive potential.
Culture, Medicine and Psychiatry
Beyond V40.31: Narrative Phenomenology of Wandering in Autism and Dementia
Olga Solomon, Mary C. Lawlor
Research on autism spectrum disorder (ASD) and on Alzheimer’s Disease (AD) and other types of dementia describes a behaviour called ‘wandering’, a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S., ‘wandering’ in both ASD and AD has been examined mostly from a management and prevention perspective. It prioritizes safety while primarily overlooking personal experiences of those who ‘wander’ and their families, thus limiting the range of potentially effective strategies to address this issue. Communicative challenges faced by many people diagnosed with ASD and AD further obscure the experiential, existential aspects of ‘wandering’. This article reflects an increasing concern of social science scholars interested in whether and how the conceptual and practical strategies to address ‘wandering’ are informed by the situated experiences of people with cognitive and developmental disabilities and their families. We examine ‘wandering’ at the intersections of personal experience, family life, clinical practice, public health policy, and legislation, as a conceptually rich site where notions of personhood, subjectivity, intentionality, and quality of life powerfully and consequentially converge to impact the lives of many people with ASD and AD, and their families. We draw upon critical autism studies describing how attributions of personhood, subjectivity, intentionality, rational agency, and moral autonomy of people with ASD have been contingent upon the norms and conventions governing movement of the human body through space (Hilton, Afr Am Rev 50(2):221–235, 2017). When this movement is deemed aberrant, the person may be construed as irrational, a danger to self because of a lack of self-awareness, and a danger to others because of a lack of empathy. These attributions put the person at risk of being excluded from the considerations and, more importantly, the obligations of the ‘moral community’ to ensure that he or she has a ‘good human life’ (Barnbaum, The Ethics of Autism: Among Them but not of Them. Indiana University Press, Bloomington, 2008; Silvers and Francis, Metaphilosophy 40(3/4):475–498, 2009). Using ethnographic, narrative phenomenological (Mattingly, The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press, 2010), and medical humanities (Charon, JAMA 286:1897–1902, 2001; Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press, 2006) approaches, we examine multiple perspectives on ‘wandering’ in ASD and AD across narrative discourse genres, institutional contexts, and media of representation. We argue for an extension of the prevention and management view to focus not only on safety but also on what phenomenologist Merleau-Ponty (1962) called “having a world” (p. 146). The analysis is intended to inform clinical practice, policy and public health efforts to enhance understanding of first and second person perspectives on ‘wandering’ in order to improve the participation and quality of life of people with ASD and AD who ‘wander’, and their families.
Devon E. Hinton, Ria Reis, Joop de Jong
This article profiles visual auras among traumatized Cambodian refugees attending a psychiatric clinic. Thirty-six percent (54/150) had experienced an aura in the previous 4 weeks, almost always phosphenes (48% [26/54]) or a scintillating scotoma (74% [40/54]). Aura and PTSD were highly associated: patients with visual aura in the last month had greater PTSD severity, 3.6 (SD = 1.8) versus 1.9 (SD = 1.6), t = 10.2 (df = 85), p < 0.001, and patients with PTSD had a higher rate of visual aura in the last month, 69% (22/32) versus 13% (7/55), odds ratio 15.1 (5.1–44.9), p < 0.001. Patients often had a visual aura triggered by rising up to the upright from a lying or sitting position, i.e., orthostasis, with the most common sequence being an aura triggered upon orthostasis during a migraine, experienced by 60% of those with aura. The visual aura was often catastrophically interpreted: as the dangerous assault of a supernatural being, most commonly the ghost of someone who died in the Pol Pot period. Aura often triggered flashback. Illustrative cases are provided. The article suggests the existence of local biocultural ontologies of trauma as evinced by the centrality of visual auras among Cambodian refugees.
The Making of Informed Choice in Midwifery: A Feminist Experiment in Care
Margaret E. MacDonald
This paper is about the clinical principle of informed choice—the hallmark feature of the midwifery model of care in Ontario, Canada. Drawing on ethnographic history interviews with midwives, I trace the origins of the idea of informed choice to its roots in the social movement of midwifery in North America in the late 1960s and 1970s. At that time informed choice was not the distinctive feature of midwifery but was deeply embedded what I call midwifery’s feminist experiment in care. But as midwifery in Ontario transitioned from a social movement to a full profession within the formal health care system, informed choice was strategically foregrounded in order to make the midwifery model of care legible and acceptable to a skeptical medical profession, conservative law makers, and a mainstream clientele. As mainstream biomedicine now takes up the rhetoric of patient empowerment and informed choice, this paper is at once a nuanced history of the making of the concept and also a critique of the ascendant ‘regime of choice’ in contemporary health care, inspired by the reflections of the midwives in my study for whom choice is impossible without care.
John Henryism, Gender and Self-reported Health Among Roma/Gypsies in Serbia
Jelena Čvorović, Sherman A. James
We describe how self-reported health (SRH) varies with gender and John Henryism (a strong behavioral predisposition to engage in high-effort coping to overcome adversity) in a low income sample of Serbian Roma. Data were collected in 2016 in several Roma settlements around Belgrade, Serbia. The sample consisted of 90 men and 112 women. In addition to John Henryism (JH), measured by a Serbian version of the John Henryism Scale, demographic data and data on SRH and family relationships dynamics were collected. SRH was positively correlated with age and JH, and negatively correlated with a history of chronic disease. Roma males and females differed significantly on JH and a number of other variables. For Roma women, multiple regression analyses revealed that a history of chronic disease, unemployment, age and daily stress level were negatively associated with SRH, while JH, SES and harmonious relationships with one’s family/children were positively associated with SRH. For Roma men, there was no association between JH and SRH, but older age, being on welfare, a diagnosis of hypertension and extended family disputes were associated with poorer SRH. Hence, despite economic disadvantage and social exclusion from mainstream society, some Roma report good health and the ability to cope actively with economic disadvantage and social exclusion. This study adds to the literature on the cross-cultural relevance of JH theory for understanding health variations within socially and economically marginalized populations.
Violence Against Women in Cambodia: Towards a Culturally Responsive Theory of Change
Maurice Eisenbruch
Almost one in four women in Cambodia is a victim of physical, emotional or sexual violence. This article brings together two seldom connected fields: Theory of Change (ToC) and cultural responsiveness in international development. It applies these approaches to a priority in global health, which is to prevent violence against women (VAW) and, drawing on my research on the epigenesis of VAW in Cambodia, develops an argument on the need for interventions to work with tradition and culture rather than only highlight it in problematic terms. The research draws on an ethnographic study carried out in Cambodia with 102 perpetrators and survivors of emotional, physical and sexual VAW and 228 key informants from the Buddhist and healing sectors. The eight ‘cultural attractors’ identified in the author’s prior research highlight the cultural barriers to acceptance of the current Theory of Change. ToC for VAW prevention in Cambodia seems to assume that local culture promotes VAW and that men and women must be educated to eradicate the traditional gender norms. There is a need for interventions to work with tradition and culture rather than only highlight it in problematic terms. The cultural epigenesis of VAW in Cambodia is an insight which can be used to build culturally responsive interventions and strengthen the primary prevention of VAW.
Hsuan-Ying Huang
This article focuses on the psychotherapy debate in China that was triggered by the country’s mental health legislation. Seeing the release of the draft Mental Health Law in 2011 as a “diagnostic event” (Moore in Am Ethnol 14(4):727–736, 1987), I examine the debate in order to unravel the underlying logic and ongoing dynamics of the psycho-boom that has become a conspicuous trend in urban China since the early 2000s. Drawing on my fieldwork in Beijing and Shanghai, I use the two keywords of the debate—“jianghu” (literally “rivers and lakes”), an indigenous term that evokes an untamed realm, and “profession,” a foreign concept whose translation requires re-translation—to organize my delineation of its contours. I describe how anticipation of state regulation prompted fears and discontents as well as critical reflections and actions that aimed to transform the field into a profession. The efforts to mark out a professional core against the backdrop of unruly jianghu further faced the challenge of an alternative vision that saw popularization as an equally noble cause. The Mental Health Law came into effect in 2013; ultimately, however, it did not introduce substantive regulation. Finally, I discuss the implications of this debate and the prospects of the psycho-boom.
Listening to Bedouin Mothers of Children with Autism
Iris Manor-Binyamini, Avihu Shoshana
This article examines how Bedouin mothers in Israel describe, perceive, and interpret their experiences raising a child with autism. Data were collected using semi-structured ethnographic interviews with 18 Bedouin mothers of children with autism, aged 6–16, living in recognized and unrecognized settlements in the Negev. Analysis of the study findings shows how the subaltern status of Bedouin women, which includes their husbands’ constant threats of divorce or taking a second wife, makes it difficult for them to be mobile and interact in the public sphere without the presence of a man and creates an experience unique to these mothers, which we call “Exclusion within Exclusion”. The Bedouin mothers report not only stigmatization, a lack of social support and loneliness but also structural–cultural characteristics that prevent them from obtaining information and participating in decision-making about the child with autism and that restrict their agency in dealing with and coping with their child’s autism. In light of this situation, the discussion highlights the unique connection between local cultural scripts and the phenomenology of autism.
“Getting Better”. The Politics of Comparison in Addiction Treatment and Research
Suzanne Fraser, Mats Ekendahl
The alcohol and other drug field is characterized by great diversity in kinds of treatment and treatment philosophies. Even the kinds of problems treatment is expected to address vary significantly, although agreement seems to exist that the general purpose is to help people “get better.” This article considers this diversity, drawing on a qualitative project conducted in three countries: Australia, Canada, and Sweden. Inspired by the project’s multisite approach and the questions it raises about comparative research, the article critically engages with the notion of “comparison” to think through what is at stake in making comparisons. Analyzing 80 interviews conducted with policy makers, service providers, and peer advocates, the article maps key ways treatment is conceptualized, identifying in them a central role for comparison. Participants in all sites invoked the need to consider addiction a multifaceted problem requiring a mix of responses tailored to individual differences. Related notions of “holism” were also commonly invoked, as was the need to concentrate on overall improvements in well-being rather than narrow changes in consumption patterns. In conducting this analysis, this article poses a series of critical questions. What kinds of comparisons about quality of life, the self, and well-being do treatments for addiction put into play? What categories and criteria of comparison are naturalized in these processes? What kinds of insights might these categories and criteria authorize, and what might they rule out? In short, what does it mean to understand alcohol and other drug use and our responses to it as intimately intertwined with the need to “get better,” and what happens when we scrutinize the politics of comparison at work in getting better through addiction treatment? We conclude by arguing for the need to find new, fairer, ways of constituting the problems we presently ascribe to drugs and addiction.
Susan Calnan, Martin P. Davoren, Ivan J. Perry, et al.
The proposal to introduce a Public Health (Alcohol) Bill marks a significant development in Ireland’s alcohol policymaking landscape. While the Bill has generated support from public health advocates, it has also raised considerable opposition, particularly from industry. This analysis aims to examine the debate around this Bill using the theoretical framework of critical discourse analysis and applying Carol Bacchi’s What’s the Problem Represented To Be critical mode of analysis. A key objective is to analyze the current prevailing representations of alcohol and its regulation in Ireland but also to consider what they reveal about the underlying governing rationality in relation to alcohol regulation. In particular, it questions whether the Bill signals a shift in the official governing rationality regarding alcohol regulation. The analysis illustrates how alcohol is problematized in markedly different ways in the debates and how such debates are often underpinned by multifaceted elements. Despite such differences, it argues that there are still signs of a neoliberal rhetoric emerging within the public health discourses, raising a question over whether the Bill and its supporting discourses signal a paradigmatic shift or are more indicative of a policy embracing hybrid forms of rule.
The Supply of Cannabis for Medical Use Through Cannabis Social Clubs in Belgium
Mafalda Pardal, Frédérique Bawin
Cannabis Social Clubs (CSCs) are nonprofit associations of adult cannabis users, which collectively organize the supply of cannabis among their members. As CSCs currently also serve members using cannabis for medical purposes, this article aims to detail the particular features of Belgian CSCs as suppliers of cannabis for medical use, and how those are perceived by CSC members. In this article, we draw on data gathered through interviews with the managing staff (n = 21) of seven currently active Belgian CSCs. In addition, we conducted interviews (n = 21) and an online survey (n = 80) with members of Belgian CSCs using cannabis for medical reasons. We present Belgian CSCs’ practices building on an adapted version of the health services analytical framework proposed by Belle-Isle et al. This article thus provides a first overview of the features of Belgian CSCs as suppliers of cannabis for medical use as well as members’ perceptions. Structural differences emerged as to how the Belgian CSCs have accommodated medical members’ needs (in mixed CSCs where no formal distinction is made between recreational and medical members, in a separate CSC subunit or in a CSC admitting medical members only). Candidate medical members must fulfill specific criteria, particularly when applying for the medical units. The CSCs have adopted two different types of distribution methods, and the cannabis supplied is produced organically—systematic quality control is, however, lacking. We noted some flexibility in relation to frequency and quantity distributed to medical members. Affordability was positively appreciated by CSC members. Collaboration between CSCs and the health sector remains challenging. Some degree of diversity in practices among CSCs remains, as well as common issues which continue to affect the model in Belgium and are important in understanding the role and potential of CSCs as providers of cannabis for medical use.
Anne Schanche Selbekk, Peter J. Adams, Hildegunn Sagvaag
The main aim of this article is to explore the dynamics of encounters between treatment institutions and families dealing with substance use. What kind of possibilities do such encounters offer, and what kind of processes do they facilitate? Based on interviews with 10 families recruited from three alcohol and other drug treatment centers in Norway, positioning theory is used as an analytical tool to address the dynamics and negotiation (1) between service providers and families when it comes to the possibilities for treatment and support and (2) between family members during the course of treatment. Three main storylines are analyzed in interviews with families about encounters with treatment: (1) the medical storyline, (2) storylines of autonomy, and (3) storylines of connection. These storylines positioned affected family members, respectively, as outsiders, as in need of help in their own right, and as part of an affected family. The medical storyline is revealed as being insufficient to deal with the problems associated with substance use—it needs to be extended by family-involving storylines facilitating processes of reintegration and repositioning within families.
Gendered Citizen Constructs in Beer Commercials as a Metatext of Alcohol Control Policies
Matilda Hellman, Anu Katainen, Janne Seppänen
This study examines gender constructs in advertising in European beer commercials (N = 59). It employs a lens of “citizenship” for discerning techniques by which male and female realms are portrayed as nonrelated, competing, and of unequal worth. This lens provides an explanation for why the connotations are problematic from a public health perspective. The citizenship-related tensions that the commercials entailed concerned taking the lead versus being governed, being free versus being controlled, being seen as a threat versus being welcomed as a friend, and being worthy of solidarity versus being excluded from group bonding. The article argues that these tensions not only involve the ethical issue of encouraging the consumption of potentially harmful substances (alcohol) and reproducing repellent gender stereotypes. The controlling, moralizing, and dull female characters are construed as infringing on the knowledgeable, skillful, and free alcohol-consuming male citizens. Gender thus unfolds as a crucial dimension in the mediation of commercial views on the relationship between the consumer and the state in alcohol policy.
East Asian Science, Technology, and Society
Koichi Mikami
On 28 January 2014, Haruko Obokata and her colleagues held a press conference regarding their new method of producing stem cells. The cells, named STAP (stimulus-triggered acquisition of pluripotency) cells, were of considerable interest not only for stem cell scientists but also for the wider society in Japan because both its government and citizens enjoyed the international reputation earned for the country by Shinya Yamanaka’s earlier success in developing a novel technique of cell reprogramming. However, it was soon pointed out that the data in the research article seemed fabricated and was hence suggested that their claims lacked scientific credibility. What was initially considered another triumph of Japanese stem cell research thus resulted in a major national scandal. Instead of seeing this case merely as one of scientific misconduct, this article examines it as a window into the local culture of stem cell research and argues that the socio-institutional background of Obokata’s work incited the researchers involved to infer doability of STAP cell research. The problem with this inference surfaced after those who did not share the culture challenged the robustness of her work, suggesting some cultures of science may be more vulnerable to scientific misconduct than others.
Between Fraud and Hope: Stem Cell Research in Korea after the Hwang Affair
Myungsim Kim, Jongyoung Kim, Hee-Je Bak
This study analyzed the influence of the Hwang scandal on the stem cell research community and research governance systems in South Korea. In contrast to the claims of some critics that the fraud scandal might raise doubts about Korean stem cell science, the impact of the Hwang scandal on publications by Korean stem cell researchers in international scientific journals proved limited, with only a temporary halt in research and publications. On the one hand, Korea’s scientific community has moved toward the ethical turn through which the Korean government tightened its research-ethics standards and regulations. On the other hand, the government and scientific community remain hopeful about stem cell research. Consequently, the politics of hope have led to the quick recovery of Korean stem cell science from the potential damage caused by the Hwang scandal. The scandal accelerated the South Korean government’s efforts toward research ethics reform: it mandated universities and research institutes to create and strengthen institutional review boards and other research-integrity committees. In addition, the Korean government, maintaining its optimism about the economic value of stem cell science, continued to fund stem cell research. Despite the seemingly prompt recovery from the scandal, however, stem cell research governance systems in Korea face a serious new challenge: the ethical and safety concerns associated with the rapid commercialization of stem cell science. Therefore, this article views the changes in the scientific community as a process of conflict and negotiation between the accountability crisis in the Korean scientific community and the politics of hope in science.
Autism and the Proficiency of Social Ineptitude: Probing the Rules of “Appropriate” Behavior
Ben Belek
Autistic people typically struggle to abide by social conventions: a constituent element of their social exclusion. Drawing on ethnographic fieldwork within a group of autistic university students in England, I show that although participants would continuously work to uncover the underlying principles of social etiquette, they nevertheless remained unsuccessful in putting their acquired knowledge into practice. Consequently, they turned to subtly shaping their social environments in attempts to redefine the terms under which the appropriateness of their actions is evaluated. I conclude by suggesting that social ineptitude consists of contemplative craft and is a meaningful component of all social interaction.
Living with a Thousand Cuts: Self‐Cutting, Agency, and Mental Illness among Adolescents
Thomas J. Csordas, Janis H. Jenkins
The phenomenon of self‐cutting has attracted increasing attention in scholarly and popular venues. Most of the literature is written from clinical, historical, or psychometric standpoints, and what has been missing is an ethnographic understanding of self‐cutting as a lived experience. The present discussion begins to fill this gap drawing on data from our project on adolescent psychiatric inpatients in the American Southwest, during which we followed these youths and their families for between one and two years as they moved from the hospital back to their homes or to other treatment facilities. Of the 47 young people (22 females and 25 males) who participated in this project, 27 or 57% had cut themselves at some point. Focusing on illustrations from case studies that highlight their cutting experience, we examine self‐cutting as the cultural and experiential locus of a crisis of agency in the relation between body and world and thus as the enactment of a fundamental human process in the context of individual experience.
Carol A. Kidron
This comparative study examines the way Israeli Holocaust descendants and Cambodian genocide descendants differentially reconstitute “discontinued” descendant‐ancestor relations with the genocide dead they never knew. Empirically examining the way distant bonds “discontinued” in contexts of warfare and mass suffering are restored in everyday life, this study fills a lacuna in the scholarship on genocide legacies, continuing bonds, and person‐dead contact. Descendants depict channels of engagement with the dead entailing person‐ person‐dead contact, person‐object interaction, and imaginal conversations, constituting copresence and intersubjectivity. Contrary to trauma theory, Holocaust and genocide studies, and the anthropology of absence that reduce relations with the dead to maladaptive identification or the burdensome presence of voided absence, the data points to normalized and empowering relations. Comparative findings contribute to our understanding of the way cross‐cultural meaning making differentially conceptualizes the porous border between the living and their ancestors and informs the restoration of (dis)‐continued bonds.
International Journal of Social Psychiatry
Lily Kpobi, Leslie Swartz
Background:
Traditional healing methods are considered central to mental health care in low-income countries such as Ghana, because they are perceived to be more easily accessible, more affordable and generally ascribe similar causal beliefs to those of the patients. However, not much is known about the work of traditional healers largely because their methods are shrouded in mysticism and secrecy. There is a need to understand the ideology and beliefs of traditional healers surrounding mental disorders, including knowledge about their practices in mental health care.
Aims:
In this article, we discuss the causal beliefs and treatment methods of traditional medicine-men from Accra, Ghana. We also describe their diagnostic and treatment methods for mental disorders.
Methods:
Eight medicine-men, indigenous to the Greater Accra Region, were interviewed through individual semi-structured interviews. The data were analysed through thematic analysis.
Results:
The medicine-men’s beliefs about mental illness were dominated by supernatural ideas. Mental illness was also seen as a form of punishment or resulting from envy, and there was a strong reliance on spiritual direction from the gods for diagnosis and treatment.
Conclusion:
These themes are discussed with emphasis on their potential implications for patients, as well as for collaborative efforts.
Wanlian Li, Fei Sun, Steven Anderson
Purpose:
This study aimed to examine differences in depressive symptoms between urban and rural workers in mainland China and to identify community factors that could contribute to such residential differences.
Methods:
This study used nationally representative data from the 2014 China’s Labor Force Dynamic Survey. Data were collected through face-to-face interviews on a sample of 22,073 participants from 29 provinces of China, including 15,098 rural workers (Mage = 44.92, standard deviation (SD) = 14.85) and 6,975 urban workers (Mage = 43.28, SD = 13.62). Mediators included community cohesion, foreseeable community threat, supportive network size and medical benefit coverage. Mediation analyses were conducted using Hayes’ SPSS Macro Process for multiple mediators.
Results:
Urban participants reported fewer depressive symptoms than their rural counterparts. Lower levels of community cohesion, higher community foreseeable threat and poorer medical coverage were related to fewer depressive symptoms. Rural–urban differences were mediated by community cohesion (B = −0.12, p < .01), foreseeable community threat (B = −0.08, p < .01) and medical benefit coverage (B = 0.25, p < .01).
Conclusion:
This study sheds light on distinctive roles of community factors in explaining rural–urban differences in depressive symptoms. Policies or programs should be designed to promote strengths and address weaknesses in rural communities.
Ann Sheridan, Donal O’Keeffe, Barbara Coughlan, et al.
Background:
Social opportunities can be limited in the lives of people with enduring mental illness (EMI) due to psychiatric stigma, restricted home environments and employment barriers. Supported socialisation programmes have the potential to redress the impact of social isolation.
Aim:
To explore the experiences of service users with EMI taking part in a supported socialisation programme, using written diary entries.
Methods:
This article reports on the qualitative component of a randomised controlled trial of supported socialisation for people with EMI (published previously in this journal). Trial participation involved (1) being matched with a volunteer partner and engaging in social/leisure activities while receiving a stipend of €20 or (2) receiving this stipend only and engaging in self-driven socialisation. Participants completed written diaries documenting their perspectives on their experiences of supported socialisation. Data were analysed using Thematic Analysis.
Results:
Experiences of participation were characterised by involvement ‘normalising’ life, fostering a sense of connectedness, improving physical health, and facilitating engagement with culture. Taking part helped participants integrate socialising into their identity, enhanced their perceived capacity to be social, and cemented/expanded social networks. Participants also experienced significant obstacles to socialisation.
Conclusion:
Supported socialisation can increase confidence, social competence and self-agency; buffer against psychiatric stigma; build social capital; and afford opportunities to enhance social integration, inclusion and belonging.
Public attitude towards restrictions on persons with mental illness in greater Hanoi area, Vietnam
Carolin Laqua, Eric Hahn, Kerem Böge, et al.
Background and Aims:
In recent years, there has been a growing awareness of the need to protect human rights in psychiatry. Within the last years, considerable effort has been made to reduce restrictive measures in mental health settings. Reducing restrictive measures within mental health care has also moved increasingly into the focus of public debate. This study aims, for the first time in a Southeast Asian sample, to explore whether socio-demographic factors affect public attitudes toward restrictions on mentally ill people in Hanoi, Vietnam.
Methods:
A general population-based survey (self-report questionnaire) was carried out in 2013 in the greater Hanoi area. The survey sample (N = 813) was recruited according to the latest published census (2009) and micro-census (2013) in Vietnam and Hanoi with regard to the socio-demographic factors gender, age, urbanity, household size and marital status. Multinomial logistic regressions for odds ratios with 95% confidence intervals were calculated to examine the influence of epidemiological variables, like gender and age, on the public attitude toward restrictions imposed on mentally ill people in Vietnam.
Results:
This study found, for the first time in a large Vietnamese sample, that gender and age were associated with public attitudes toward restrictions on mentally ill people. In detail, significantly fewer men endorsed compulsory admission to a hospital and abortion than Vietnamese women. In addition, endorsement of abortion was significantly higher in older people.
Conclusion:
The results offer some insight into roles of women in the Vietnamese society and might reflect the traditional gender expectations in Vietnamese families. Moreover, the results emphasize the need for supporting female psychiatric patients and their families within their communities and in the Vietnamese society.
Social inclusion of the people with mental health issues: Compare international results
Jussara Cavalho dos Santos, Sonia Barros, Peter John Huxley
Background:
Social inclusion of people with mental health issues is an aim of the World Health Organisation. Many countries have adopted that objective, including Brazil and the United Kingdom and both have focused treatment in the community. The aim of this article is to compare international results using the same inclusion instrument.
Methods:
The samples in this study were 225 people with mental health issues in community services in São Paulo, Brazil. Their results are compared to findings from 168 people with similar mental health issues in Hong Kong, China, and from the United Kingdom – a nationally representative sample of 212 people without mental health issues. The instrument used to measure a social inclusion called Social and Communities Opportunities Profile (SCOPE) has been validated for use in the United Kingdom, China and Brazil.
Results:
The results are that people with mental health issues have worse social inclusion when compared to general population. Between the people with mental health issues, the sample of São Paulo has the lowest social inclusion index but, in relation to access to the Brazilian revised mental health services, that sample has a similarly high inclusion rating to the general population of the United Kingdom.
Conclusion:
Findings are important to understand mental health in the community context, as well as their adversities and potentialities.
Taylore Jennelle Fitch, Xiao Yu, Lung-Chang Chien, et al.
Background:
Post-traumatic stress disorder (PTSD) may be more prevalent and burdensome in developing countries.
Aims:
The goals of this study were to (1) determine the prevalence of PTSD, (2) identify types and number of traumas related to screening positive for PTSD and (3) determine other sociodemographic risk factors and health/medical conditions that may be correlated to PTSD among garment-factory workers and a comparable working population in Bangladesh.
Method:
A survey was administered to a convenient sample of 607 lower socio-economic status (SES) working women in Bangladesh, 310 of who were garment workers. The primary outcome PTSD was measured by the PTSD Checklist. The Life Events Checklist determined the number and type of traumatic events.
Results:
The prevalence of PTSD was found to be 17.79% – 7.25% in garment workers and 21.55% in the comparison worker group. In multivariate analysis, PTSD was found to be significantly associated with age, income, chronic pain and number of stressful events. Participants between 45–50 years of age had the greatest odds of reporting PTSD – 15.68 fold (95% confidence interval (CI) = 4.08, 60.29) compared with those younger than 24 years. PTSD was more common in those with lower income (2,000–4,000 taka) (odds ratio (OR) = 1.60; 95% CI = 0.79, 3.26), who had chronic pain (OR = 2.48; 95% CI = 1.51, 4.07) and who experienced over three traumatic life events (OR = 11.25; 95% CI = 4.59, 27.59). The mean number of traumatic events experienced by this entire population was 4.9 with PTSD being more likely in those who experienced physical assault (OR = 6.35; 95% CI = 4.07, 9.90), who caused serious harm or death to someone else (OR = 4.80; 95% CI = 1.36, 16.87) and who had exposure to combat or war (OR = 4.76; 95% CI = 1.17, 19.34).
Conclusion:
Undiagnosed and untreated PTSD impacts the quality of life and decrease worker productivity among working-age women in this developing country.
Ruth Abraham, Lars Lien, Ingrid Hanssen
Background:
The links between migration and health are well documented. Being a refugee exacerbates migrants’ vulnerability through trauma and loss. The aim of this study is to identify sources of resilience, coping and posttraumatic growth in female Eritrean refugees living in Norwegian asylum reception centres.
Method:
The study had a qualitative, descriptive and explorative design with two focus group interviews and 10 individual in-depth interviews. Participants included 18 female Eritrean refugees aged 18–60, who had obtained refugee status and were still living in an asylum reception centre. A content-focused hermeneutic analytic approach was used.
Results:
Interviewees described the challenges of pre-flight and flight trauma, conditions at the refugee centre, communication difficulties and the ‘endless’ waiting for transfer to a municipality. To cope, they found it helpful to focus on the future and to think positively. Fellowship with and support from fellow Eritrean refugees were essential as they became a proxy family and provided a strong ethnic identity. Their religious belief also helped them cope and gave them hope for the future.
Discussion:
The interviewees in this study perceived their psychological problems as a normal reaction to what they had been through. Religious belief was an important resilience factor, as was social support, especially from peers.
Conclusion:
The interviewees’ coping was based on the realization of their psychological reactions being normal while doing their utmost to focus on their aims and hopes for the future.
Talking to children about parental mental illness: The experiences of well parents
Divya Ballal, Janardhana Navaneetham
Background:
Children of parents with mental illness are not routinely included in psychoeducational and supportive family interventions provided by adult mental health systems. The family, therefore, is an important and, sometimes, the only source of information and support for them.
Aim:
To understand the experiences of well parents in talking to their children about parental mental illness.
Method:
This article presents the findings of a qualitative study of the experiences of well parents in talking to their children about parental mental illness. Ten well parents whose spouses were diagnosed with a severe mental illness participated in the study. Socio-demographic information, family details and history of the spouse’s mental illness along with their experiences of talking to children about parental mental illness, the perceived risks and benefits, challenges they faced and the role of others in the process were recorded. Qualitative data were analysed using interpretative phenomenological analysis.
Findings:
The themes of ‘distancing children from parental mental illness’, ‘avoiding conversations about the illness’, ‘giving and receiving emotional support’, ‘providing explanations of the illness’ and ‘regulating other sources of information’ show the complex ways in which well parents influence their children’s understanding of parental mental illness. The findings are examined in the background of what is known about this topic from the perspective of children or of the parent with illness. Possible ways to support well parents in families affected by parental mental illness are discussed.
Conclusion:
This study is a step forward in the understanding of how families talk to children about parental mental illness and provides the perspective of the well parent.
Factors influencing the level of self-stigmatisation in people with mental illness
Lucie Kalisova. Jiri Michalec, Demetra Hadjipapanicolaou
Aim:
The aim of this study was to assess sociodemographic factors and factors connected with treatment of mental illness and to decide whether they can influence the level of self-stigma.
Method:
Sociodemographic characteristics (age, gender, family status, level of employment, level of education) and characteristics related to illness and treatment (diagnosis, length of treatment, adherence to treatment) were gathered in a group of patients in stable mental condition, without acute symptoms of mental illness. Self-stigma was measured using the Self-stigma of Mental Illness Scale – short form (SSMIS-SF).
Results:
The sample included 197 patients: 99 patients in group 1 (G1) with psychosis and 98 in group 2 (G2) with anxious and affective disorders. The average age was 44.15 ± 12.91 years, the length of illness was 11.67 ± 9.21 years and 48% of patients were men. The total average SSMIS-SF score was 61.54 ± 23.34. We found no statistically significant difference in the total level of self-stigmatisation between these groups (t(197) = 0.77; p = .441). The level of self-stigmatisation (total score of SSMIS-SF) in patients in G1 (psychosis) increased with the length of illness r(99) = .253; p = .011. Employment status seems to correlate with the level of self-stigmatisation (F(3, 184) = 5.27; p = .002). Patients unemployed and on disability pension had higher levels of self-stigmatisation than patients working full-time. Patients who took medication regularly (full medical adherence) had lower scores of SSMIS-SF total scores in comparison with patients with lower compliance (t(195) = 3.476; p = .001; Cohen’s d = .25).
Conclusion:
According to our results, with regard to the factors that were followed, self-stigmatisation correlates with the presence of employment (social inclusion), duration of illness in patients with psychosis and treatment adherence. We did not find a statistically significant influence of age, gender, marital status or clinical diagnosis on the level of self-stigma.
Physical health problems in people with psychosis: The issue for informal carers
Juliana Onwumere, Sophia Howes, David Shiers, et al.
Background:
Reduced life expectancies are recorded in adults with psychotic disorders. Informal carers play key roles in improving illness outcomes for patients, including significantly reducing rates of relapse and hospitalisation. There is, however, a dearth of literature detailing carers’ perspectives on physical health problems in the relatives they care for and implications for those in the caregiving role. The study sought to explore carers’ subjective experiences of supporting a relative with psychosis and physical health problems.
Methods:
Carers of adults with psychosis were interviewed individually, or as part of a group, about physical health problems in the relatives they care for.
Results:
Five key themes were identified from the interviews that reflected (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers’ role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.
Conclusion:
Service initiatives that are designed to improve patient physical health in psychosis should not overlook the role that informal carers might have in supporting this process. The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.
The tragedy of becoming tired of living: Youth and young adults’ suicide in Greenland and Denmark
Larissa Bolliger, Gabriel Gulis
Background:
Suicide is a tremendous public health issue and worldwide the second leading cause of death among young people. In 2015, Greenland had the highest burden of disease due to self-harm with loss of 2,952.97 disability-adjusted life years per 100,000 inhabitants, more than six times as many as Denmark.
Aims:
What are possible reasons for Greenland’s higher youth suicide rate compared to Denmark, despite being one kingdom of Denmark?
Method:
Mixed methods in the form of qualitative, semi-structured interviews, the analysis of available data for 2003–2016 and a literature review were conducted with the aim to answer this question.
Results:
Several exposures cause this difference, most significantly adverse effects of the colonial past, such as social issues and experienced traumas in Greenland compared to its former coloniser Denmark.
Conclusion:
The ongoing burden of youth suicide in Greenland requires enhanced actions of all stakeholders involved in suicide prevention, intervention and postvention.
Society and ‘good woman’: A critical review of gender difference in depression
Sucharita Maji
Background:
Worldwide, women are found to suffer from depression significantly more than men. This has puzzled the scientists since no biological explanation can completely resolve the matter.
Method:
Extant empirical work has been conducted to solve the mystery of the issue. However, most of the research has pivoted their attention to biology. Therefore, based on the previous literature from the disciplines of medicine, psychology and sociology, the author aimed at looking and reviewing the matter critically. Specifically, the present critical review aims at conceptualising the psychological, social and cultural factors in the context of gender difference in depression.
Discussion:
The work reveals that psychological variables such as women’s unique attachment patterns, relational self-construal, as well as a macro-level issue like power dynamics based on gender, and the skewed division of labour play an important role in gender difference in depression. The work also suggests that focusing solely on biological underpinnings may result in losing the entire scenario; therefore, social and cultural issues that place women in a socially disadvantaged position are equally important.
Journal of the Royal Anthropological Institute
Marek Mikuš
This article analyses the discourse surrounding, implementation of, and struggles over the new disability policy in Serbia to show how its founding principles of human rights became partially co‐opted by neoliberal welfare restructuring. As a result, it sought to make disabled people not only equal but also economically ‘independent’ in the sense of relying on wage labour instead of welfare. Owing to its inadequate assumptions and instruments, the policy has largely failed to deliver on these objectives. Disabled people mobilized against neoliberalization by defending material welfare entitlements inherited from Yugoslav socialism. At the same time, they appropriated the register of human rights to demand a substantive political and civic equality. This points to the possibility of rights‐based projects that fuse rather than oppose the politics of recognition and redistribution.
Frédéric Keck
This article describes relations between humans, animals, artefacts, and pathogens in simulations of disasters, taking bird diseases in three Chinese sentinel posts as ethnographic cases. Drawing on distinctions between simulation, ritual, and play, it shows that the engagement of actors in the imaginary of simulations, which they describe as ‘realism’, reflectively reverses the oppositions between humans and nonhumans, active and passive, fiction and reality that shape ordinary life. Borrowing from the anthropology of hunting societies, it argues that simulations of bird diseases, considered as signs of future species extinction, rely on cynegetic techniques of power, in which humans and animals symmetrically shift perspectives, and not only on pastoralist techniques, in which humans are above the population they monitor and sometimes sacrifice.
Medical Anthropology Quarterly
Corporate Mortality Files and Late Industrial Necropolitics
Peter C. Little
This article critically examines the corporate production, archival politics, and socio–legal dimensions of corporate mortality files (CMFs), the largest corporate archive developed by IBM to systematically document industrial exposures and occupational health outcomes for electronics workers. I first provide a history of IBM’s CMF project, which amounts to a comprehensive mortality record for IBM employees over the past 40 years. Next, I explore a recent case in Endicott, New York, birthplace of IBM, where the U.S. National Institute for Occupational Safety and Health studied IBM’s CMFs for workers at IBM’s former Endicott plant. Tracking the production of the IBM CMF, the strategic avoidance of this source of big data as evidence for determining a recent legal settlement, alongside local critiques of the IBM CMF project, the article develops what I call “late industrial necropolitics.”
Living the Social Determinants of Health: Assemblages in a Remote Aboriginal Community
Richard D. Chenhall, Kate Senior
This article provides a critical discussion of the social determinants of health framework and compares it with theoretical perspectives, such as that offered by assemblage theory, offering an alternative view of the complex interplay between human relationships and the structures around us. We offer an ethnographic perspective, discussing the lived experiences of the social determinants in an Indigenous community in a remote part of northern Australia.
Care in the Context of a Chronic Epidemic: Caring for Diabetes in Chicago’s Native Community
Margaret Pollak
American Indians have some of the highest rates of diabetes worldwide, and they are disproportionately affected by the secondary complications of the disease. While most research on Native populations focuses on reservations, this study investigates diabetes care in Chicago’s Native community. People living with diabetes manage blood sugar levels to prevent the development of secondary complications. As with many diabetics, the majority of their health care work is completed outside of the biomedical setting. In this article, I explore how, in a community facing epidemic rates of disease, care is enmeshed in the everyday lives of not just those living with the disease but also significant others. As care in this context is accomplished across multiple spheres, from inside individual households to community‐wide considerations, Chicago’s intertribal community ties are strengthened. Care, in this sense, becomes a (perhaps tragic) means of Native American community building tied to cultural identity.
Tarryn Phillips, Tyson Rees
Sufferers of medically unexplained conditions that are not observable in the clinic can experience multiple layers of invisibility: a lack of biomedical diagnosis; legal skepticism; political disinterest; and a loss of their prior social identity. For those with environmental sensitivities, this is compounded by literal hiddenness due to often being housebound. Drawing on an online survey of people with multiple chemical sensitivity, this article examines how the everyday experience of invisibility is mitigated by engaging with other patients online. Respondents used online forums to undertake various forms of “visibility work,” including attempts to crystallize their suffering into something recognizable medically, legally, and politically, and to reconstruct an identity considered valid and deserving—although the therapeutic potential of online support was contingent on intra‐group politics. This study demonstrates that online forums allow biomedicine’s “invisible others” to struggle for alternative forms of recognition beyond the clinical gaze.
Christina M. Getrich, Jacqueline M. García, Angélica Solares, Miria Kano
We conducted a study in early 2014 to document how the initial implementation of the Affordable Care Act (ACA) affected health care provision to different categories of immigrants from the perspective of health care providers in New Mexico. Though ACA navigators led enrollment, a range of providers nevertheless became involved by necessity, expressing concern about how immigrants were faring in the newly configured health care environment and taking on advocacy roles. Providers described interpreting shifting eligibility and coverage, attending to vulnerable under/uninsured patients, and negotiating new bureaucratic barriers for insured patients. Findings suggest that, like past efforts, this recent reform to the fragmented health care system has perpetuated a condition in which safety‐net clinics and providers are left to buffer a widening gap for immigrant patients. With possible changes to the ACA ahead, safety‐net providers’ critical buffering roles will likely become more crucial, underscoring the necessity of examining their experiences with past reforms.
Tsipy Ivry, Elly Teman
This article explores the way that surrogacy and normal pregnancy share cultural assumptions about pregnancy. Through a juxtaposition of our ethnographic studies of two groups of Jewish–Israeli women—women who have undergone “normal,” low‐risk pregnancies and women who have given birth as gestational surrogates—we argue that surrogacy and pregnancy emerge as potent metaphors for one another. Both pregnant women and surrogates divided their bodies into two separate realms: fetus and maternal pregnant body. Both trivialized the effect of gestational influence on fetal health, making the fetus seem detached from gestational capacities of the mother. We argue for closer scrutiny of the way local cultural priorities and experiences of pregnancy shape surrogacy and for bringing the scholarship on pregnancy and on surrogacy into deeper conversation.
Toni Copeland
The HIV/AIDS crisis continues in sub‐Saharan Africa, where nearly 70% of infections are found. Despite recent efforts to supply antiretroviral therapy to those infected, most are not receiving medication and are forced to rely on self‐management to remain healthy. In Kenya, many of those infected are women living in extreme poverty. This article presents the findings of research among poor women in Nairobi that examined the relationship between knowledge of a cultural model of self‐managing HIV/AIDS, cultural consonance, and health. This biocultural study expands on earlier findings showing that knowledge of the model (competence) is a significant predictor of health by examining here how behavior consistent with that knowledge (consonance) affects health outcomes, as measured by CD4 counts, perceived stress, depressive symptoms, and recent illnesses.
Martina Thomas, Jason A. DeCaro
Obesity among low‐income African American women has been studied using the concepts of both satisfaction and acceptance. The satisfaction frame suggests greater satisfaction with their bodies than their white counterparts, irrespective of size. The acceptance frame suggests that alternative aesthetics serve as resistance against intersectional marginalization. Yet, while these women accept their body size in defiance of thinness ideals, they may not be satisfied. We describe cultural models of body image among mothers and daughters in Alabama. We found that respectability, material consumption, and parental support were important factors determining positive body image, exceeding descriptions of physical features. We further found that those expressing greater body dissatisfaction emphasized respectability, whereas those with less dissatisfaction assigned importance to consumerism and physical form. These findings suggest divergences between biomedical messaging and lived experience. They also challenge uncritical or universalist applications of these frames when interpreting African American women’s perceptions of their own bodies.