Here is the first installment of articles published in March. There is a special issue of East Asian Science, Technology and Society on “Body and Enhancement Technology,” and I also want to note that there are reviews of several recently published books about disability collected in this month’s Sociology of Health & Illness.
DSM over time: From legitimisation of authority to hegemony
Katia Romelli, Alessandra Frigerio and Monica Colombo
The proposed revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), has reignited a protracted debate in psychiatry and clinical psychology regarding the criteria used to diagnose and classify mental disorders. Drawing on the concepts of legitimisation and hegemony, the aim of this study is to deconstruct how the authoritativeness of the DSM was discursively constructed, legitimised and consolidated over time. To fulfil this purpose, we combine a critical psychology perspective with critical discourse analysis and adopt a multi-level model of analysis that embraces the notions of genre and repertoire in scientific discourse. The materials were approached considering the following interrelated dimensions: (a) semantic macro-areas; (b) discursive strategies; and (c) linguistic means. The data set is constituted by the Forewords and Introductions of different editions of the DSM, from the DSM-I through to the DSM-5. The analysis highlights the discursive strategies that play an important role in self-legitimisation and the construction of a dominant hegemonic discourse.
At the end of 2011, microbiologists created a scientific and media frenzy by genetically engineering mutant avian flu viruses that transmitted through the air between ferrets, the animal most widely used to model human flu. Though the studies offered new evidence of avian flu’s pandemic potential, they were nevertheless restricted from publication because of concerns about their possible threat to human health and security. In this article, I examine the mutant flu controversy to show how nascent biosecurity regulations engender transformations in experimental systems; namely, in the use and interpretation of experimental organisms, and in the establishment of a culture of security among a globalizing community of scientists. Drawing on analyses of academic publications, interviews with microbiologists and biosecurity regulators, and ethnographic observations at a biosecure laboratory, I show how these experimental transformations are structured by the local demands of scientific production as well as by broader concerns about biosecurity made visible in formal and informal regulations on scientific conduct. I further argue that while the controversy signals unprecedented controls over publication in the biological sciences, such controls build upon and extend on-going shifts in scientific thought and practice in the wake of pandemic threats.
Silenced uses and moral ideals in the exchange of Danish blood and plasma
Zainab Sheikh, Ida Deleuran and Klaus Hoeyer
This article explores the interplay between cultural discourses, moral reasoning and silenced uses in the international exchange of Danish blood plasma. Campaigns, policymakers, health professionals working in the blood banks – and even donors – consistently refer to ideals portraying blood as ‘beyond trade’. This stands in remarkable contrast to the fact that the donated plasma is sold to an international pharmaceutical company in consequence of rules of tender set by the European Union. Donors are not aware of this, and when asked in hypothetical terms about trade, they strongly oppose it. However, we find that available cultural discourses poorly capture the moral reasoning among many donors. In fact, when informed about the existing forms of tender, plasma trade sounds like a good idea to most of them. Furthermore, they are not particularly interested in information. We argue that the silencing of trade is infusing the system with an unnecessary vulnerability that could easily be avoided with a different communication strategy towards donors. To arrive at new and better strategies, however, one must move beyond the immediate words and reactions of donors contemplating trade and seek to understand their reasoning and valuations. This move also allows us theoretical reorientation with respect to studies of the gift/commodity dichotomy.
Standardization as performative accountability in biobanking
Dragana Lassiter, Rose Jean Cadigan, Kaaren M Haldeman, Erik Reavely and Gail Henderson
In the last two decades, biobanks have become critical components in researchers’ efforts to cure, treat or prevent cancer, diabetes and many other diseases. At the same time, the amassing of specimens has been brought into question by recognition that the lack of standardization across highly diverse collections presents an impediment for future biomedical research. By looking at standardization as a practice of accountability in biobanking, this article examines the relationship between standardization and ethics in the work of six biobanks in the United States. Standards, we argue, are necessary to biobanking, yet there is also an unquestioned faith put into the standardization of biobank practice and products. This, we argue, reveals that beyond their immediate function, standards do other work. Using interview data, we show how standardization can serve as a performance of accountability, which, as we explain using the concept of audit cultures, constitutes biobanks as an ethical subject. We conclude by pointing out that while efforts to standardize are important for making best use of samples and data, when calling for standardization, we should be mindful of the other (ethical) work that standardization does and contemplate its particular consequences.
This article investigates the environment of the laboratory animal as a site where animal welfare and behavioral neuroscience intersect, creating opportunities for cross-pollinations between the concepts and practices of each field. Laboratory animal welfare is organized around a distinction between the care of animals and their use in experiments, and while best practices for animal handling and the management of animal housing may appear to fall firmly within the ambit of animal care, behavioral researchers’ own histories of work on ‘experimenter effects’ and ‘enriched environments’ complicate this distinction. Using historical and ethnographic data from animal behavioral neuroscience laboratories, this article examines how welfare professionals have drawn on behavioral science as a source of new data and techniques, and how researchers in turn employ concepts from animal welfare in their scientific thinking. This investigation provides insight into how changes in animal welfare oversight are changing scientific practice, but it also reveals one reason why taking seriously the idea of the animal as a situated, interactive being in laboratory practice remains difficult. Professional conflicts over the management of the animal’s environment and rhetorical troubles created by the association of gene-environment interaction research with welfare agendas complicate both the management and meaning of interaction in the animal behavioral neuroscience laboratory.
Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain
Emery R. Eaves, Mark Nichter, and Cheryl Ritenbaugh
In this paper, we explore hope in the context of living with chronic pain. Individuals with chronic pain from temporomandibular disorder(s) were interviewed four to five times over the course of their 18-month participation in a clinical trial investigating the effectiveness of Traditional Chinese Medicine. We sought to understand shifts in participants’ descriptions of expectations and hopefulness, particularly with regard to the work involved in counterbalancing positive thinking with buffers against disappointment. We found hope to be a dynamic and multifaceted mindset as distinct from being a single entity to be measured. Drawing upon Polanyi’s concept of tacit knowing, we explore how different ways of hoping emerge and index one another in participant narratives. We offer a working typology of hope and raise as an issue the manner in which the paradox of hope—hoping enough to carry on while keeping hopes in check to avoid the ever-present possibility of despair—complicates simplistic notions of the relationship between positive thinking and the placebo response.
An Illness of Power: Gender and the Social Causes of Depression
Alex B. Neitzke
There is considerable discourse surrounding the disproportionate diagnosis of women with depression as compared to men, often times cited at a rate around 2:1. While this disparity clearly draws attention to gender, a focus on gender tends to fall away in the study and treatment of depression in neuroscience and psychiatry, which largely understand its workings in mechanistic terms of brain chemistry and neurological processes. I first consider how this brain-centered biological model for depression came about. I then argue that the authoritative scientific models for disorder have serious consequences for those diagnosed. Finally, I argue that mechanistic biological models of depression have the effect of silencing women and marginalizing or preventing the examination of social-structural causes of depression, like gender oppression, and therein contribute to the ideological reproduction of oppressive social relations. I argue that depression is best understood in terms of systems of power, including gender, and where a given individual is situated within such social relations. The result is a model of depression that accounts for the influence of biological, psychological, and social factors.
Traumatic Experience and Somatoform Dissociation Among Spirit Possession Practitioners in the Dominican Republic (open access)
Yvonne Schaffler , Etzel Cardeña, Sophie Reijman, Daniela Haluza
Recent studies in African contexts have revealed a strong association between spirit possession and severe trauma, with inclusion into a possession cult serving at times a therapeutic function. Research on spirit possession in the Dominican Republic has so far not included quantitative studies of trauma and dissociation. This study evaluated demographic variables, somatoform dissociative symptoms, and potentially traumatizing events in the Dominican Republic with a group of Vodou practitioners that either do or do not experience spirit possession. Inter-group comparisons revealed that in contrast to non-possessed participants (n = 38), those experiencing spirit possession (n = 47) reported greater somatoform dissociation, more problems with sleep, and previous exposure to mortal danger such as assaults, accidents, or diseases. The two groups did not differ significantly in other types of trauma. The best predictor variable for group classification was somatoform dissociation, although those items could also reflect the experience of followers during a possession episode. A factor analysis across variables resulted in three factors: having to take responsibility early on in life and taking on a professional spiritual role; traumatic events and pain; and distress/dissociation. In comparison with the non-possessed individuals, the possessed ones did not seem to overall have a remarkably more severe story of trauma and seemed to derive economic gains from possession practice.
Negative emotions such as anger, and community responses to their expression are culturally and politically conditioned, including by dominant medical discourse on anger’s somatic and psychic effects. In this article I examine local genres of anger expression in Beijing, China, particularly among marginalized workers, and address culturally specific responses to them. Through majie (rant), xiangpi ren (silenced rage), and nande hutu (muddledness as a more difficult kind of smartness), workers strategically employ anger to seek redress for injustices and legitimate their moral indignation while challenging official psychotherapeutic interventions. Those who seek to regulate anger, mostly psychosocial workers acting as arm’s-length agents of the state, use mixed methods that draw on Western psychotherapy and indigenous psychological resources to frame, medicalize or appease workers’ anger in the name of health and social stability. I demonstrate how the two processes—anger expression and responses to it—create tensions and result in an ambiguous and multivalent social terrain which Chinese subjects must negotiate and which the state attempts to govern. I argue that the ambivalence and multi-valence of anger expressions and state-sponsored reactions to them render this emotion both subversive vis-à-vis power and subject to manipulations that maintain social order.
It is widely assumed that the social and economic conditions of poverty can be linked to common mental disorders in low-, middle- and high-income countries. Despite the considerable increase in quantitative studies investigating the link between poverty and mental health, the nature of the connection between poverty and emotional well-being/distress is still not fully comprehended. In this qualitative study, exploring how one group of Coloured South African women, diagnosed with depression and residing in a semi-rural low-income South African community, subjectively understand and experience their emotional distress, data was collected by means of in-depth semi-structured interviews and social constructionist grounded theory was used to analyse the data. We will attempt to show (1) that the depressed women in this group of respondents frequently refer to the emotional distress caused by hungry children and (2) that the emotional distress described by the respondents included emotions typically associated with depression (such as sadness, hopelessness and guilt), but also included emotions not necessarily associated with depression (such as anxiety, anger and anomie). In our attempt to understand (both psychologically and politically) the complex emotional response of mothers to their children’s hunger, we argue that powerful gender and neo-liberal discourses within which mothers are interpellated to care for children, and more specifically, to make sure that children are not hungry, mean that the mothers of hungry children felt that they were not fulfilling their responsibilities and thus felt guilty and ashamed. This shame seemed, in turn, to lead to anger and/or anomie, informing acting out behaviours ranging from verbal and physical aggression to passive withdrawal. A vicious cycle of hunger, sadness and anxiety, shame, anger and anomie, aggression and withdrawal, negative judgement, and more shame, are thus maintained. As such, the unbearable rebukes of hungry children can be thought of as evoking a kind of “madness” in low-income mothers.
Body and Enhancement Technology: An Introduction (open access)
This special issue brings together original scholarly articles whose research concerns the interrelationship of the body and technology. Human enhancement is about applying science and technology to expand our cognitive and physical capacities. Enhancement technologies point to interventions to improve human functions or characteristics beyond what is necessary to sustain health, blurring the boundaries between therapeutic and augmentative (Hogle 2005). Contributions to human enhancement come from developments in fields as diverse as surgery, sports medicine, stem cell research, gene therapy, pharmaceuticals, cybernetics, prosthetics, nanotechnology, and computer science and engineering. Enita A. Williams (2006) has pointed out that one major factor driving the development of enhancement technologies is the convergence of four research areas: nanotechnology, biotechnology, information technology, and cognitive science.
There has been a growing concern about a new way of thinking about race in genomics. STS scholars have tried to make sense of the ways race came to be a part of the scientific, medical, and legal fields in the name of genomics. This article adds to this STS literature on race and genomics with an analysis of antidoping science, a circuit of knowledge making that reifies race in terms of genomics but that thus far has been ignored by STS scholars. By engaging with the STS perspective on genomics and race, in this article I examine how antidoping regulatory knowledge on doping markers travels and how its operations are carried out both inside and outside this regulatory science. This study traces knowledge making about steroid doping regulations and its journey through the media and cyberspace, thus showing that regulatory efforts against doping were incidentally linked to the shaping of the idea of race in relation to genomics and personalized medicine, and especially that of Asian race. While the regulations, recommendations, and debates on the use of race in terms of genomics focused on biomedical research and practice, antidoping scientists are regulatory scientists on the periphery of biomedicine. Antidoping scientists did not, then, engage with debates on the use of racial categories when applying concepts of personalized medicine and pharmacogenomic studies in biomedicine. They used racial categories in their studies of the UGT2B17 gene without concern, and their research reinforced the shaping of racialist discourses on the idea of Asians as a doping-friendly race in the media and cyberspace. This case study suggests that, to improve academic and political intervention on race and genomics, STS scholars should expand their studies into peripheral disciplines of biomedicine such as antidoping science and other human regulatory sciences.
Embodying Progress: Aesthetic Surgery and Socioeconomic Change in South Korea (open access)
Eduardo Zachary Albrecht
Since the early 1960s South Korea has had one of the fastest-growing economies in the world. These developments have had a deep impact on the structure of society, but what impact have they had on the body? This article examines the relationship between such rapid socioeconomic transformations and the changes in uses and perceptions of the physical body among Koreans. This article uses a phenomenological theoretical framework to look at the narratives of embodiment of young Koreans that have had experiences with aesthetic surgery. The research examines the hypotheses that (1) the rapid transformations occurring in the South Korean economy are partly enabled by a specific ideology—a kind of ideology of progress in which economic productivity is valued above other aspects of everyday life, and (2) this ideology is articulated in the way individuals view and manage their bodies. In particular, it is evident in the embodied practices of Korean youths, such as the relatively recent popularization of aesthetic surgery. Thus, through surgical technologies the body is made to be more economically “productive” and may better contribute to the progress of the country as a whole.
This study investigates the widely recognizable discourse that characterizes South Korea as a plastic surgery nation by tracing media coverage of plastic surgery as published in two major Korean newspapers from 1960 to 2009.This study attempts to enrich our understanding of plastic surgery in modern times within the Korean context by delineating three distinctive periods of plastic surgery: legitimization (1960–79), popularization (1980–99), and industrialization (2000s). I show how the discourse of South Korea as a plastic surgery nation is both a local and a global construction. This paper further aims to deepen our understanding of enhancement technology by showing how the plastic surgery discourse in South Korea demonstrates the permeability of the boundaries between therapy and enhancement, bodily and social enhancement, and the individual and collective body. While the discourse has reinforced these complementary and intertwined relationships, what enhancement means for whom has not been questioned. I argue that statistics have variously been used to proclaim the ubiquity of plastic surgery, which works to “make up people” without attending to the actual experiences and effects of plastic surgery, either for individuals or the nation. In this way, the characterization of South Korea as a plastic surgery nation is a dubious construction.
This article provides a theoretical basis for reconsidering current discussions on the relation between the body, technology, and enhancement. Using the conceptual distinctions of model 1 (which is based on the notion of the unmediated body and technology) and model 2 (which begins with the techno-body complex) types of understanding of enhancement, and emphasizing a reappraisal of Vygotskian tradition for demarcating the role of mediating signs and tools in psychology, I compare two existing controversies regarding enhancement: the various disputes concerning technological enhancement in elite sports competition, and the recent controversy about using digital technology for memory enhancement. The framework used for this comparison is the concept of regime, consisting of the following layers of criteria: (1) the nature of each specific domain where enhancement is defined and measured, (2) the structure of agencies or institutions concerned with the issue, and (3) the underlying value that implicitly affords such an effort toward enhancing our capacity. With regard to the elite sports regime, the focus is rather tightly structured, whereas for memory enhancement, the controversy is diffuse and widely distributed. The sharp contrast in these two regimes is shown to be deeply related to the different types of understanding enhancement. In conclusion, this article suggests that the discussion on enhancement is a probe for the larger system of values, which inevitably forces us to reexamine our own values with the help of the tentative conceptual scheme provided herein.
Culture and the Jitters: Guild Affiliation and Online Gaming Eustress/Distress (open access)
Jeffrey G. Snodgrass, Michael G. Lacy, H.J. Francois Dengah II, Greg Batchelder, Scarlett Eisenhower, Rory Sascha Thompson
We examine how online sociocultural context influences play experience in the popular online role-playing game, World of Warcraft (WoW). We focus on how guilds, in-game associations of like-minded players, establish social relationships and cultural understandings that shape online play experience. Some guilds help their members regulate the stressful arousal emerging from challenging gaming activities—such as collaborative raids, where multiple players together try to defeat challenging opponents termed bosses—maximizing stress’ positive eustressful potential. By contrast, so-called “hard-core” raiding guilds, the primary focus of this article, push their members to more extreme forms of online gaming, linking in-game arousal with problematic patterns of play, potentially transforming pleasurable gaming eustress into harmful distress. Overall, we treat guilds as emergent communities of play, which, in the manner they differentially regulate their members’ gaming experiences, sharply illuminate the deep sociocultural shaping of the stress process. We suggest that these cultural processes are less visible in studies focusing more narrowly on distress or eustress alone—typically, medical anthropology in the first case, games studies in the second—making a balanced approach such as ours critical to psychological anthropologists hoping to clarify how culture lends psychobiological arousal its positive or negative valence.
Lay knowledge, social movements and the use of medicines: Personal reflections
Nicky Britten, Kath Maguire
This article consists of two personal reflections about the changing status of lay knowledge over the last 20?years. The first reflection is by Nicky Britten from the perspective of a sociologist working in medical schools whose interest in this topic was motivated by my own personal experience of health care and of teaching general practitioners. Starting with the problematic deficit model of ‘ignorant patients’, I trace the literature on patient-centredness, shared decision-making, lay knowledge, public involvement in research and social movements. Looking at medicines use in particular, I deplore the continued hegemony of the concept of compliance in the face of extensively documented problems with the licensing, regulation, prescribing and monitoring of medicines. I argue that lay knowledge is now taken more seriously, not so much because of advocacy by clinicians and academics, but because of social movements and social action. We may have moved from ‘anecdotes’ to ‘lived experience’ but there is still a way to go, particularly when it comes to medicines use. I end with a possible future scenario. The second reflection is by Kath Maguire and is a response from the perspective of someone who came to work in this field with the express purpose of improving engagement with lay knowledge. It questions my own ‘layness’ and explores the issues raised by Nicky Britten using the lens of lived experience. Finally, it questions the paradigm of social movements and highlights the importance of developing different ways of listening.
The aim of this qualitative study was to analyse counselling with regard to prenatal screening in midwifery consultations in the Netherlands where a national prenatal screening programme has only existed since 2007, after years of social and political debates. The methodology is based on in situ observations of 25 counselling consultations in four midwifery practices in two main cities in the Netherlands. The results of this study show that, since midwives are obliged to offer information on Down syndrome screening to all pregnant women (2007), they have to deal with the communication of medical screening information using biostatistical concepts to explain risks, calculations, probabilities and chromosomal anomalies. In order to avoid the risk of medicalization of their consultation, midwives develop strategies that allow them to integrate this new biomedical discourse while maintaining their low medicalized approach of midwife-led care. One of their main strategies is to switch from ‘alarming’ biomedical messages to ‘reassuring words’ in order to manage the anxiety induced by the information and to keep the control over their low medicalized consultation. They also tend to distance themselves from the obligation to talk about screening. The way midwives handle these counselling consultations allows them to respect their obligation to propose information, and to remain faithful to their struggle to protect the natural process of pregnancy as well as their professional autonomy.
Photovoice in mental illness research: A review and recommendations (open access)
Christina S Han, John L Oliffe
In the past few decades, photovoice research has gained prominence, providing context rich insights through participants’ photographs and narratives. Emergent within the field of photovoice research have been health studies embracing diverse illness issues. The goal of this scoping review article was to describe the use of photovoice in mental illness, paying particular attention to the following: (1) the study design and methods, (2) empirical findings, and (3) dissemination strategies. Nine qualitative studies (seven drawing from primary and two secondary analyses) featuring diverse approaches to analysis of data comprising individual and/or focus group interviews using participant-produced photographs were included in the review. Described were participant’s experiences of living with mental illness and/or substance overuse, including feelings of loneliness and being marginalized, along with their support care needs (e.g. physical, emotional, and spiritual) to garner self-confidence, respite, and/or recovery. Empirically, the reviewed articles confirmed the value of participant-produced photographs for obtaining in-depth understandings about individual’s mental illness experiences while a focus on stigma and recovery was prominent. In terms of dissemination, while most of the published articles shared some participants’ photographs and narratives, less evident were strategies to actively engage the public or policymakers with the images. Recommendations for future photovoice research include conducting formal analyses of participant photographs and strategically lobbying policymakers and raising public awareness through virtual and “in person” photo exhibitions while de-stigmatizing and affirming the experiences of those who are challenged by mental illness.
Silent subjects, loud diseases: Enactment of personhood in intensive care
Gitte Hanssen Koksvik
The topic of this article is personhood in the case of verbally inexpressive, typically unconscious patients or patients with a low level of lucidity. My aim is to show how personhood is done and undone in a close-knit network of personnel, patients, disease, technology, and treatment, borrowing the concept of enactment as developed by Annemarie Mol. The empirical data are based on grounded ethnographic fieldwork conducted in three separate intensive care units in three European countries: Spain, Norway, and France in the spring of 2014. Four weeks were spent at each site. The method used was participant observations and semi-structured interviews with 24 intensive care unit staff members (9 doctors, 12 nurses, and 3 nurses’ aides).
The significance of socially-assigned ethnicity for self-identified Maori accessing and engaging with primary healthcare in New Zealand
Jennifer Reid, Donna Cormack, Marie Crowe
Despite increased focus in New Zealand on reducing health inequities between Maori and New Zealand European ethnic groups, research on barriers and facilitators to primary healthcare access for Maori remains limited. In particular, there has been little interrogation of the significance of social-assignment of ethnicity for Maori in relation to engagement with predominantly non-Maori primary healthcare services and providers. A qualitative study was undertaken with a subsample (n=40) of the broader Hauora Manawa Study to examine experiences of accessing and engaging with primary healthcare among adult urban Maori. Thematic analysis of in-depth interviews identified that participants perceived social-assignment as New Zealand European as an efficacious form of capital when interacting with predominantly non-Maori health professionals. Skin colour that was ‘white’ or was perceived to identify Maori as belonging to the ‘dominant’ New Zealand European ethnic group was reported as broadly advantageous and protective. In contrast, social-assignment as Maori was seen to be associated with risk of exposure to differential and discriminatory healthcare. Reducing the negative impacts of racialisation in a (neo)colonial society where ‘White’ cultural capital dominates requires increased recognition of the health-protective advantages of ‘White’ privilege and concomitant risks associated with socially-assigned categorisation of ethnicity as non-‘White’.
This article examines how discourses on mental illness are negotiated in mental health practice and their implications for the subjective experiences of psychiatric patients. Based on a Foucauldian analysis of ethnographic data from two mental health institutions in Denmark—an outpatient clinic and an inpatient ward—this article identifies three discourses in the institutions: the instability discourse, the discourse of “really ill,” and the lack of insight discourse. This article indicates that patients were required to develop a finely tuned and precise sense of the discourses and ways to appear in front of professionals if they wished to have a say in their treatment. We suggest that the extent to which an individual patient was positioned as ill seemed to rely more on his or her ability to navigate the discourses and the psychiatric setting than on any objective diagnostic criteria. Thus, we argue that illness discourses in mental health practice are not just materialized as static biomedical understandings, but are complex and diverse—and have implications for patients’ possibilities to understand themselves and become understandable to professionals.
Integration of acupuncture into conventional medicine from health professionals’ perspective: A thematic synthesis of qualitative studies
Esther García-Escamilla, Beatriz Rodríguez-Martín, Vicente Martínez-Vizcaíno
Acupuncture is a prominent Complementary Medicine. Although health professionals’ conceptions of acupuncture may affect its utilisation and integration within conventional medicine, these aspects have not been well studied. The aim of this review was to analyse the integration of acupuncture into conventional medicine from the perspective of health professionals.
We conducted a systematic review and a thematic synthesis of qualitative studies that analysed the integration of acupuncture into conventional medicine grounded in participants’ perspectives. A systematic search was undertaken in PubMed, Web of Science, the Cochrane Library Plus, Scopus and CINAHL.
This review included 18 articles: 6 analysed the viewpoint of physicians, 3 of nurses and 9 comprised different health-related professionals. Most of these studies included healthcare professionals practising acupuncture and took place in sites where the relation between acupuncture and biomedicine is favourable. The most used research techniques were convenience sampling, semi-structured interviews and interpretative approach. The holistic approach of acupuncture and its lack of adverse effects were highlighted by the analysed studies. This led to health professionals encouraging its integration into conventional medicine. The main obstacles perceived for the integration were lack of knowledge and institutional support. In general, acupuncture has been adapted to the biomedical model (often practised in an unsystematic and individual manner), and it is conceived as a supplement of Western medicine.
‘Working together’ and overcoming the biomedical model are recognised by the participants as key conditions for successful integration of acupuncture.
“I’m running my depression:” Self-management of depression in neoliberal Australia (open access)
Bianca Brijnath, Josefine Antoniades
The current study examines how the neoliberal imperative to self-manage has been taken up by patients, focusing specifically on Indian-Australians and Anglo-Australians living with depression in Australia. We use Nikolas Rose’s work on governmentality and neoliberalism to theorise our study and begin by explicating the links between self-management, neoliberalism and the Australian mental health system. Using qualitative methods, comprising 58 in-depth interviews, conducted between May 2012 and May 2013, we argue that participants practices of self-management included reduced use of healthcare services, self-medication and self-labour. Such practices occurred over time, informed by unsatisfactory interactions with the health system, participants confidence in their own agency, and capacity to craft therapeutic strategies. We argue that as patients absorbed and enacted neoliberal norms, a disconnect was created between the policy rhetoric of self-management, its operationalisation in the health system and patient understandings and practices of self-management. Such a disconnect, in turn, fosters conditions for risky health practices and poor health outcomes.
Adherence to medication has been identified as a key issue in the treatment of many chronic illnesses, however such a perspective fails to account for the lived experience of medication usage and its effects on the body as lived. Parkinson’s Disease, a neurological disease predominantly affecting movement and mobility, and which is treated via a wide range of medications provides a useful opportunity to explore experiences of medication usage in chronic illness. Reporting on findings of a study exploring men’s experience of living with Parkinson’s Disease, this paper adopts a lived body perspective to explore lived experiences of medication usage and adherence in PD. Findings are reported from 30 narrative in depth interviews with 15 men of various ages living with Parkinson’s disease of mild to severe intensity. Findings first discuss PD’s effects on men’s sense of the lived body, in which a fluctuating embodiment is linked to medication regimes and their bodily effects. Second, as PD disrupts the body’s place with the everyday and habitual experience of lived time, medication regimens come to place new structures upon the men’s everyday experience of time. Finally, the paper explores the role medications play in men’s attempts to create and sustain narratives for the individual progression of their illness, and how these narratives differ from clinical narratives associated with PD’s treatment. This paper concludes by discussing debates around adherence to medication within the treatment of PD and the need to consider lived experience of medication usage and their effects at the level of the lived body.
Introducing smoking cessation to Indonesian males treated for tuberculosis: The challenges of low–moderate level smoking
Mark Nichter, Siwi Padmawati, Nawi Ng
There is a dearth of information about the smoking habits of people currently and formerly treated for tuberculosis (TB) in low- and middle-income countries (LMICs). In this paper we describe research carried out in Indonesia between 2007 and 2011 designed to investigate both the impact of TB-specific quit smoking messages in the TB clinic and at home, and shifts in patterns of smoking among those formerly treated for TB who continue to smoke. The results of a modest two-arm smoking cessation trial involving 87 patients undergoing Directly Observed Therapy Short course treatment (DOTS) for TB are presented. In one arm patients received a TB-specific quit smoking message delivered by doctors and a TB and smoking educational booklet and quit smoking guide. In the second, family support arm, patients also received on-going cessation messages delivered by family members trained to be DOTS supporters. The study followed patients twice during their six months of DOTS treatment and twice six months post treatment. Both arms of the study reduced rates of smoking during and following TB treatment significantly with 73% of patients in the doctor arm and 71% in the family support arm remaining quit at the end of the treatment (month 6). When complete abstinence at six months after treatment was taken as a primary outcome measure, no statistical difference was found in the effectiveness of the two arms of the intervention. Notably, 67% of higher-level smokers at baseline and 33% of low–moderate level smokers at baseline quit entirely. Many of those who resumed smoking did so at low–moderate levels (<6 cigarettes a day). Eighty-four percent of patients who quit during treatment maintained their abstinence six months after treatment, 13% resumed smoking at a low–moderate level (<6 cigarettes), and only 3% resumed smoking at a higher level. A purposeful sample of 15 patients who shifted from heavy smoking (20–40 cigarettes per day) to low–moderate levels of smoking post treatment were followed for an additional 12 months. We report on their ability to sustain lower levels of smoking and self-perceived smoking status given their dramatic reduction in cigarette consumption. This is the first study of low–moderate level smoking among patients formerly treated for TB conducted anywhere in South-East Asia.
Advice, authority and autonomy in shared decision-making in antenatal screening: the importance of context
Alison Pilnick and Olga Zayts
Shared decision-making (SDM) has been widely advocated across many branches of healthcare, yet there is considerable debate over both its practical application and how it should be examined or assessed. More recent discussions of SDM have highlighted the important of context, both internal and external to the consultation, with a recognition that decisions cannot be understood in isolation. This paper uses conversation analysis (CA) to examine how decision-making is enacted in the context of antenatal screening consultations in Hong Kong. Building on previous CA work (Collins et al. 2005, Toerien et al. 2013), we show that, whilst previously identified formats are used here to present the need for a decision, the overriding basis professionals suggest for actually making a decision in this context is the level of worry or concern a pregnant woman holds about potential foetal abnormality. Professionals take an unknowing ‘epistemic stance’ (Heritage 2012) towards this worry, and hence step back from involvement in decision-making. We argue that this is linked to the non-directive ethos that prevails in antenatal screening services, and suggest that more research is needed to understand how the enactment of SDM is affected by wider professional contexts and parameters.
In this article, I revisit the question of whether HIV can ever be reimagined and re-embodied as a potentially non-infectious condition, drawing on a current qualitative study of couples with mixed HIV status (serodiscordance) in Australia. Recent clinical trials have consolidated a shift in scientific understandings of HIV infectiousness by showing that antiretroviral treatment effectively prevents the sexual transmission of HIV. Contrary to common critiques, I explore how the increasing biomedicalisation of public health and the allied discourse of ‘normalisation’ can in fact de-marginalise stigmatised relationships and sexualities. Invoking Ecks’s concept of ‘pharmaceutical citizenship’, I consider whether the emerging global strategy of HIV ‘treatment-as-prevention’ (TasP) can open up new trajectories that release serodiscordant sexuality from its historical moorings in discourses of risk and stigma, and whether these processes might re-inscribe serodiscordant sexuality as ‘normal’ and safe, potentially shifting the emphasis in HIV prevention discourses away from sexual practice toward treatment uptake and adherence.
Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention (open access)
Ingrid Young, Paul Flowers and Lisa McDaid
This article examines how biomedicalisation is encountered, responded to and negotiated within and in relation to new biomedical forms of HIV prevention. We draw on exploratory focus group discussions on pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP) to examine how the processes of biomedicalisation are affected by and affect the diverse experiences of communities who have been epidemiologically framed as ‘vulnerable’ to HIV and towards whom PrEP and TasP will most likely be targeted. We found that participants were largely critical of the perceived commodification of HIV prevention as seen through PrEP, although this was in tension with the construction of being medical consumers by potential PrEP candidates. We also found how deeply entrenched forms of HIV stigma and homophobia can shape and obfuscate the consumption and management of HIV-related knowledge. Finally, we found that rather than seeing TasP or PrEP as ‘liberating’ through reduced levels of infectiousness or risk of transmission, social and legal requirements of responsibility in relation to HIV risk reinforced unequal forms of biomedical self-governance. Overall, we found that the stratifying processes of biomedicalisation will have significant implications in how TasP, PrEP and HIV prevention more generally are negotiated.
Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying
John I MacArtney, Alex Broom, Emma Kirby, Phillip Good, Julia Wootton and Jon Adams
Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in-patient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.