This article ethnographically analyses how groups (and not just individuals) are produced in business process outsourcing (BPO) workplaces. In order to mitigate an unstable labour pool, corporations hire deaf workers to perform identical BPO work regardless of their qualifications and backgrounds. These hiring practices serve to cement existing relationships and produce deaf workers as a group marked only by deafness. This article explores how engaging in the same work articulates with deaf young adults’ ‘sameness work’ to produce ambivalent deaf groups. It also analyses the everyday practices of deaf employees, their relationships with their normal co-workers who ‘love’ them, and the ways that value is reconfigured in the workplace through the existence of disabled workers. This article argues that in contrast to dominant representations of disabled people as unemployable, the (re)inscription of deafness as a source of multiple forms of value begs for a broader analysis of the role of disability in late capitalism.
Bodily Rights and Collective Claims: The Work of Legal Activists in Interpreting Reproductive and Maternal Rights in India
Carolyn Heitmeyer and Maya Unnithan
This article engages with anthropological approaches to the study of global human rights discourses around reproductive and maternal health in India. Whether couched in the language of human rights or of other social justice frameworks, different forms of claims-making in India exist in tandem and correspond to particular traditions of activism and struggle. Universal reproductive rights language remains a discourse aimed at the state in India, where the primary purpose is to demand greater accountability in the domain of policy and governance. Outside of these spheres, other languages are strategically chosen by activists for their greater resonance in addressing individual cases of women claiming reproductive violence within the context of the family as well as localized histories of feminist struggle and social justice. In focusing on the work of legal activists and the discourses which inform their interventions, this article seeks to understand how the language of reproductive rights is used in the context of India, not as a `Western import’ which is adapted to local contexts, but rather as one of multiple frameworks of claims-making drawn upon by legal activists emerging from distinct histories of struggle for gender equality and social justice.
Waldorf education, an independent alternative to public schooling, aims to produce holistically healthy graduates in a formulation that rejects the conventional distinction between education and health. Also striving to bridge that divide, this article characterizes the pedagogically salutogenic techniques Waldorf teachers use in pre-kindergarten (pre-K) and lower grade classes and explicates the ethnomedical understandings underlying them. Waldorf teachers position children as budding participants in a unified field of spiritual and other forces, prioritizing whole-child activities that keep these forces healthfully motile. Their work entails a critique not only of mainstream public schooling’s ostensibly pathogenic “head-to-head” focus, but also of the biomedical approach to pediatric health. My analysis of this conjoined critique takes into account the cultural, structural, and existential realities within which Waldorf education’s salutary pedagogy is daily framed and fabricated. Further, it explores the implications for anthropology of attending to movement as a key feature of healthful human experience.
Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD
Emery R. Eaves, Mark Nichter, Cheryl Ritenbaugh, Elizabeth Sutherland, and Samuel F. Dworkin
Temporomandibular Disorders (TMD) represent a particular form of chronic pain that, while not outwardly debilitating, profoundly impacts interactions as fundamental to human existence as smiling, laughing, speaking, eating, and intimacy. Our analysis, informed by an expanded “works of illness” assessment, draws attention to work surrounding social and physical risk. We refer to these as the work of stoicism and the work of vigilance and identify double binds created in contexts that call for both. Conflicting authorial stances in informants’ narratives are shown to be essential in maintaining a positive identity in the face of illness. While earlier ethnographic studies report TMD sufferers’ experience of stigma and search for diagnosis and legitimacy, we present a group of individuals who have accepted diagnosis at face value and soldier through pain as a fundamental aspect of their identity.
This article employs a multi-species perspective in investigating how life’s worth is negotiated in the field of neonatology in Denmark. It does so by comparing decision-making processes about human infants in the Danish neonatal intensive care unit with those associated with piglets who serve as models for the premature infants in research experiments within neonatology. While the comparison is unusual, the article argues that there are parallels across the decision-making processes that shape the lives and deaths of infants and pigs alike. Collectivities or the lack thereof as well as expectations within linear or predictive time frames are key markers in both sites. Exploring selective reproductive processes across human infants and research piglets can help us uncover aspects of the cultural production of viability that we would not otherwise see or acknowledge.
In this article, I examine the various meanings of Mexican and Central American migrant women’s utilization of private food assistance programs. I present findings from 20 months of ethnographic fieldwork conducted between 2008 and 2011 with migrant women, public health workers, and staff and volunteers of food assistance programs in Santa Barbara County, California. I discuss the barriers undocumented women face in accessing formal health care and the social and moral obligations that underpin these women’s role in feeding others. I also document the ways in which private food assistance programs are orienting toward a focus on health in service delivery, and how women depend on provisions from these programs to support feeding practices at home. I argue that these findings are significant for current engagement by critical medical anthropologists in studying framings of “the clinic” and cultural beliefs about “deservingness.”
Communicating ‘Evidence’: Lifestyle, Cancer, and the Promise of a Disease-Free Future
Kirsten Bell and Svetlana Ristovski-Slijepcevic
In the era of evidence-based health care, conferences aimed at disseminating scientific knowledge perform an essential role in shaping policy and research agendas and transforming physician practice. Drawing on observations at two U.S. cancer prevention conferences aimed at knowledge translation, we examine the ways that evidence regarding the relationship between cancer and lifestyle is articulated and enacted. We show that characterizations of the evidence base at the conferences far outstripped what is presently known about the relationship between cancer and lifestyle. The messages presented to conference participants were also personalized and overtly moralistic, with attendees engaged not merely as practitioners but as members of the public at risk for cancer. We conclude that conferences seeking to bring together knowledge “makers” and knowledge “users” play a potentially important role in the production of scientific facts and are worthy of further study as distinct sites of knowledge production.
Global Health Care-seeking Discourses Facing Local Clinical Realities: Exploring the Case of Cancer
Rikke Sand Andersen, Marie Louise Tørring, and Peter Bedsted
Using cancer as an example and drawing on Pierre Bourdieu’s concepts of field and on prolonged fieldwork in Danish general medical practice settings, we examine how discourses about what counts as legitimate help-seeking practices are negotiated in local clinical encounters. Overall, we identify competition between two discourses on help-seeking practices. This competition is present most when people seek help with unspecific, vague, or diffuse illness complaints, voicing uncertainty as to what counts as signs of illness, characteristic of proactive discourses emanating from global, scientific biomedicine. Such indistinct help-seeking conflicts with the dominant discourse in the local clinical setting and is characterized by an overt focus on identification of the chief complaint. The analysis illustrates how competing discourses may result in conflicting expectations to the clinical encounter and prove counterproductive to ensuring early diagnosis of cancer.
A Chilling Example? Uruguay, Philip Morris International, and WHO’s Framework Convention on Tobacco Control
Andrew Russell, Megan Wainwright, and Hadii Mamudu
The World Health Organization’s Framework Convention on Tobacco Control (FCTC) is the first international public health treaty to address the global spread of tobacco products. Ethnographic research at the fourth meeting of the FCTC’s Conference of the Parties in Uruguay highlights the role of the FCTC in recalibrating the relationship between international trade and investment agreements and those of global public health. Specifically, we chart the origins and development of the Punta del Este Declaration, tabled by Uruguay at the conference, to counter a legal request by Philip Morris International, the world’s largest tobacco transnational, for arbitration by the International Centre for the Settlement of Investment Disputes over Uruguay’s alleged violations of several international trade and investment treaties. We argue that medical anthropologists should give greater consideration to global health governance and diplomacy as a potential counterweight to the ‘politics of resignation’ associated with corporate capitalism.
Drawing on multiple literatures from history, geography, anthropology, sociology and literature, this essay asks questions about what we mean by region and why narratives of region should matter to the medical humanities. The essay surveys how region can be used as a lens of analysis, exploring the various academic approaches to region and their limitations. It argues that regions are dynamic but also unstable as a category of analysis and are often used uncritically by scholars. In encouraging scholars working in the medical humanities to be aware that regions are not simple objective or analytical boxes, the essay shows how an awareness of region helps challenge metropolitan whiggism and ideas of core and periphery to give a more prominent place to hinterlands, market towns and rural environments. Furthermore, the essay considers how incorporating region into our understanding of illness can offer new insights. It demonstrates the need for scholars to be attuned to the narratives constructed around regions, suggesting that regions can be viewed as discursive formations that provide a frame for understanding both collective and personal ideas of, and responses to, health and illness, disease and healing, to create what Megan Davies calls a more nuanced ‘intellectual cartography’.
Henry’s Voices: The Representation of Auditory Verbal Hallucinations in an Autobiographical Narrative
Zsófia Demjén and Elena Semino
The book Henry’s Demons (2011) recounts the events surrounding Henry Cockburn’s diagnosis of schizophrenia from the alternating perspectives of Henry himself and his father Patrick. In this paper, we present a detailed linguistic analysis of Henry’s first-person accounts of experiences that could be described as auditory verbal hallucinations. We first provide a typology of Henry’s voices, taking into account who or what is presented as speaking, what kinds of utterances they produce and any salient stylistic features of these utterances. We then discuss the linguistically distinctive ways in which Henry represents these voices in his narrative. We focus on the use of Direct Speech as opposed to other forms of speech presentation, the use of the sensory verbs hear and feel and the use of ‘non-factive’ expressions such as I thought and as if. We show how different linguistic representations may suggest phenomenological differences between the experience of hallucinatory voices and the perception of voices that other people can also hear. We, therefore, propose that linguistic analysis is ideally placed to provide in-depth accounts of the phenomenology of voice hearing and point out the implications of this approach for clinical practice and mental healthcare.
Choreographing Lived Experience: Dance, Feelings and the Storytelling Body
Karin Eli and Rosie Kay
Although narrative-based research has been central to studies of illness experience, the inarticulate, sensory experiences of illness often remain obscured by exclusively verbal or textual inquiry. To foreground the body in our investigation of subjective and intersubjective aspects of eating disorders, we—a medical anthropologist and a contemporary dance choreographer—designed a collaborative project, in which we studied the experiences of women who had eating disorders, through eight weeks of integrating dance practice-based, discussion-based and interview-based research. Grounded in the participants’ own reflections on choreographing, dancing and watching others perform solos about their eating disordered experiences, our analysis examines the types of knowledge the participants used in choreographing their dance works, and the knowledge that they felt the dance enabled them to convey. We find that the participants consistently spoke of feeling as guiding their choreographic processes; they also said the experiences they conveyed through their dance works were centred in feelings, rather than in practices or events. Through dance, the participants said they could communicate experiences that would have remained unspoken otherwise. Yet, notably, dance practice also enabled participants to begin defining and describing their experiences verbally. We suggest, therefore, that through engaging participants in contemporary dance practice, we can begin to identify and address embodied experiences of illness and recovery that may be silenced in speech or writing alone.
The Impact of an Arts-Based Programme on the Affective and Cognitive Components of Empathic Development
Joyce Zazulak, Camilla Halgren, Megan Tan, and Lawrence E.M. Grierson
Medical education research demonstrates that empathic behaviour is amenable to positive change when targeted through educational programmes. This study evaluates the impact of an arts-based intervention designed to nurture learner empathy through the provision of facilitated visual literacy activities. Health Sciences students (N=19) were assigned to two learning groups: a group that participated in a visual literacy programme at the McMaster Museum of Art and a control group that participated in the normal Health Sciences curriculum. All participants completed an inter-reactivity index, which measures empathy on affective and cognitive levels, prior to and following the programme. Those individuals assigned to the visual literacy programme also completed open-ended questions concerning the programme’s impact on their empathic development. The index scores were subjected to independent within-group, between-test analyses. There was no significant impact of the programme on the participants’ overall empathic response. However, sub-component analyses revealed that the programme had a significant positive effect on cognitive aspects of empathy. This finding was substantiated by the narrative reports. The study concludes that the affective focus of humanities-based education needs to be enhanced and recommends that learners are educated on the different components that comprise the overall empathic response.
In this paper, I firstly situate the current rise of interest in epigenetics in the broader history of attempts to go “beyond the gene” in twentieth-century biology. In the second part, after a summary of the main differences between epigenetic and genetic mutations, I consider what kind of implications the sui generis features of epigenetic mutations may have for the social sciences. I focus in particular on two sites of investigation: (a) the blurring of the boundaries between natural and social inequalities in theories of justice and their possible implications for public policy and public health and (b) a deepening of the notion that the constitution of the body is deeply dependent on its material and socially shaped surroundings (“embodied constructivism”). In conclusion, I advance some cautionary reflections on some of the (known and unprecedented) problems that the circulation of epigenetics in wider society may present.
How the Genome Got a Life Span
Martine Lappé and Hannah Landecker
In the space of little more than a decade, ideas of the human genome have shifted significantly, with the emergence of the notion that the genome of an individual changes with development, age, disease, environmental inputs, and time. This paper examines the emergence of the genome with a life span, one that experiences drift, instability, and mutability, and a host of other temporal changes. We argue that developments in chromatin biology have provided the basis for this genomic embodiment of experience and exposure. We analyze how time has come to matter for the genome through chromatin, providing analysis of examples in which the human life course is being explored as a set of material changes to chromatin. A genome with a life span aligns the molecular and the experiential in new ways, shifting ideas of life stages, their interrelation, and the temporality of health and disease.
Epigenetic Determinism in Science and Society
Miranda R. Waggoner and Tobias Uller
The epigenetic “revolution” in science cuts across many disciplines, and it is now one of the fastest-growing research areas in biology. Increasingly, claims are made that epigenetics research represents a move away from the genetic determinism that has been prominent both in biological research and in understandings of the impact of biology on society. We discuss to what extent an epigenetic framework actually supports these claims. We show that, in contrast to the received view, epigenetics research is often couched in language as deterministic as genetics research in both science and the popular press. We engage the rapidly emerging conversation about the impact of epigenetics on public discourse and scientific practice, and we contend that the notion of epigenetic determinism – or the belief that epigenetic mechanisms determine the expression of human traits and behaviors – matters for understandings of the influence of biology and society on population health.
Metaphors in Search of a Target: The Curious Case of Epigenetics
Aleksandra Stelmach and Brigitte Nerlich
Carrying out research in genetics and genomics and communicating about them would not be possible without metaphors such as “information,” “code,” “letter” or “book.” Genetic and genomic metaphors have remained relatively stable for a long time but are now beginning to shift in the context of synthetic biology and epigenetics. This article charts the emergence of metaphors in the context of epigenetics, first through collecting some examples of metaphors in scientific and popular writing and second through a systematic analysis of metaphors used in two UK broadsheets. Findings show that while source domains for metaphors can be identified, such as our knowledge of electrical switches or of bookmarks, it is difficult to pinpoint target domains for such metaphors. This may be indicative both of struggles over what epigenetics means for scientists (natural and social) and of difficulties associated with talking about this, as yet, young field in the popular press.
Epigenetics: Localizing Biology Through Co-Laboration
This paper reports on a co-laborative laboratory ethnography in a molecular biology laboratory conducting research on environmental epigenetics. It focuses on a single study concerned with the material implications of social differentiation. The analysis briefly raises biopolitical concerns. Its main concern lies with an understanding of the human body as local in its working infrastructure or “inner laboratory”, an understanding that emerges from the co-laborative inquiry between biologists and anthropologist. This co-laborative mode of inquiry raises productive tensions within biology as to the universal or local nature of human nature and within anthropology as to the status of human biology within social theory. The paper cannot resolve this tension. Rather it explores it as an epistemic object in the context of interdisciplinarity, ontography and co-laboration. In concluding, it specifies co-laboration as temporary, non-teleological joint epistemic work aimed at producing new kinds of reflexivity.
Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.
Regenerative medicine (RM) in Japan lays strong emphasis on a specific trajectory of its development, which deploys human induced pluripotent stem (iPS) cells as the primary sources for the technology. The technique to create these stem cells was developed in 2006 by a Japanese stem cell scientist, Shinya Yamanaka, and since its applicability to human cells was established about a year later, this new type of cells has become to be considered as a potential substitute for human embryonic stem cells. While the clinical value of these cells are yet to be confirmed, the Japanese Ministry of Education, Culture, Sports, Science and Technology decided to concentrate its support on iPS cells research and turned it into a national project. This decision reflected the state’s vision of initiating the transition to a knowledge-based society, which was adopted in the 1990s to tackle the prolonged deflation in the country. As the research became intertwined with this policy vision, however, the Ministry came to see bringing its success as more important than ever, while other trajectories of RM were left underrated and largely unsupported. Industrial actors counteracted this situation and developed an initiative to recognize existing technical capability in the country, but its impact has been so far negligible. This indicates that the nation is locked in the particular trajectory of RM. Hence, this Japanese RM research enterprise presents an interesting case to understand how states’ commitment may not only shape the course of scientific research but also reduce flexibility in technological development.
Across different kinds of modern influences on human sleep—from communication and media technologies, to medical interventions and chemicals used to modify sleep and wakefulness, to the organization of social life—some are seen as interfering with human nature. Others, like many institutions, are accepted as natural. This is apparent in the example of school start times, which are widely assumed to be based on an agrarian past. Unlike modern media technologies, school start times are often implicitly accepted as based in nature, and help constitute a sense of a historical primordial natural state in which humans lived in harmony with nature. The presumed naturalness of institutional times stands in opposition to modern media technologies and laboratory-derived chemicals, which are often criticized for being disruptive to our human natures and as having negative impacts on our sleep patterns. In some cases, technology may be serving as a distraction, interfering with a child’s sleep, but technology also provides an easy object of criticism, for physicians, scientists, and parents. In doing so, normative social expectations and the institutions that frame them escape criticism in the face of blaming the disorderly behavior of individuals.
Real-world experiments that test new technologies can affect policy and practice by introducing new objects of intervention through tinkering; the ad hoc work of realigning relations in the face of frictions, surprises, and disturbances that occur when introducing a technology. In a pilot study on aggression detection, tinkering moved aggression in and out of the human body. In the end, the pilot defined aggression as a set of acoustic-physical variables representing the aroused human body, alongside other signals of aggression. How aggression as an object intervention was shaped by tinkering is relevant because it involved inclusions and exclusions by the authorities who identified aggression, the methods they applied, and mandate for intervention. A focus on relations that are tinkered within a real-world experiment permits critical engagement with this format. Although the real-world experimental format is credited with producing knowledge about a technology’s ‘actual’ performance, actors and events at the pilot study location were made only selectively relevant. Analyses of real-world experiments should therefore explain how experiments selectively make the world relevant, giving only particular objects of intervention a truth status.
Racial health disparities in the United States are produced and perpetuated through public policies that differentially allocate risks and resources for health. Elected officials have the ability modify the structural determinants of racial health disparities through policy decisions and, through voting, the electorate can influence the extent to which these policy decisions promote health equity. In this commentary, I synthesize research on the voting behavior of electorates and policy decisions and present strategies to foster sociopolitical environments that are conducive to the implementation and enforcement of racial health disparity reduction initiatives. There is a need for research that contributes to a more comprehensive understanding of the role of voting in health policy making processes and further development of empirically-based policy advocacy strategies.
Birth-Cohort Trends in Older-Age Functional Disability and their Relationship with Socio-Economic Status: Evidence From a Pooling of Repeated Cross-Sectional Population-Based Studies for the U.K.
Marcello Morciano, Ruth M. Hancock, and Stephen E. Pudney
We examine birth-cohort trends behind recent changes in the prevalence of functional disability in the older population living in private households in the United Kingdom (UK). By using three different socio-economic indicators available in the nationally representative cross-sectional data on older individuals interviewed between 2002 and 2012 in the Family Resource Survey (FRS) (96,733 respondents), we investigate the extent to which the overall trends have been more favourable among more advantaged than disadvantaged socioeconomic groups. Compared to the cohort of people born in 1924, successive cohorts of older men have lower odds of having at least one functional difficulty (FD), whereas no significant trend was found for women. Among people with at least one FD, however, the number of disabilities increases for each successive cohort of older women (incidence rate ratio 1.027, 95% confidence interval 1.023 to 1.031, P < 0.001) and men (incidence rate ratio 1.028, 95% confidence interval 1.024 to 1.033, P < 0.001). By allowing interactions between birth cohort and SES indicators, a significant increasing cohort trend in the number of reported FDs was found among older men and women at lower SES, whereas an almost stable pattern was observed at high SES. Our results suggest that the overall slightly increasing birth-cohort trend in functional difficulties observed among current cohorts of older people in the UK hides underlying increases among low SES individuals and a relative small reduction among high SES individuals. Further studies are needed to understand the causes of such trends and to propose appropriate interventions. However, if the SES differentials in trends in FDs observed in the past continue, this could have important implications for the future costs of the public system of care and support for people with care needs.
Neighborhood Effects in Depressive Symptoms, Social Support, and Mistrust: Longitudinal Analysis with Repeated Measurements
Jaako Airaksinen, Christian Hakulinen, Marko Elovainio, Terho Lehtimäki, Olli Raitakari, Liisa Keltikangas-Järvinen, and Markus Jokela
While many associations between neighborhood characteristics and individual well-being have been reported, there is a lack of longitudinal studies that could provide evidence for or against causal interpretations of neighborhood effects. This study examined whether neighborhood urbanicity and socioeconomic status were associated with within-individual variation in depression, mistrust and social support when individuals were living in different neighborhoods with different levels of urbanicity and socioeconomic status. Participants were from the Young Finns prospective cohort study (N = 3074) with five repeated measurement times in 1992, 1997, 2001, 2007, and 2011. Neighborhood urbanicity and socioeconomic status were measured at the level of municipalities and zip-code areas. Within-individual variation over time was examined with multilevel regression, which adjusted the models for all stable individual differences that might confound associations between neighborhood characteristics and individual well-being. Social support from friends was higher in urban areas and in areas with higher socioeconomic status, whereas social support from the family was higher in rural areas. These associations were observed also in the within-individual analyses, and they were partly accounted for by employment and socioeconomic status of the participants. There were no associations between neighborhood characteristics and depression or mistrust. These findings suggest that people receive less support from their families and more support from their friends when living in urban compared to rural regions of Finland. These differences are partly explained by people’s changing socioeconomic and employment statuses.
Climate Change Influences on Environment as a Determinant of Indigenous Health: Relationships to Place, Sea Ice, and Health in an Inuit Community
Agata Durkalec, Chris Furgal, Mark W. Skinner, and Tom Sheldon
This paper contributes to the literature on Indigenous health, human dimensions of climate change, and place-based dimensions of health by examining the role of environment for Inuit health in the context of a changing climate. We investigated the relationship between one key element of the environment – sea ice – and diverse aspects of health in an Inuit community in northern Canada, drawing on population health and health geography approaches. We used a case study design and participatory and collaborative approach with the community of Nain in northern Labrador, Canada. Focus groups (n = 2), interviews (n = 22), and participant observation were conducted in 2010–11. We found that an appreciation of place was critical for understanding the full range of health influences of sea ice use for Inuit. Negative physical health impacts were reported on less frequently than positive health benefits of sea ice use, which were predominantly related to mental/emotional, spiritual, social, and cultural health. We found that sea ice means freedom for sea ice users, which we suggest influences individual and collective health through relationships between sea ice use, culture, knowledge, and autonomy. While sea ice users reported increases in negative physical health impacts such as injuries and stress related to changing environmental conditions, we suggest that less tangible climate change impacts related to losses of health benefits and disruptions to place meanings and place attachment may be even more significant. Our findings indicate that climate change is resulting in and compounding existing environmental dispossession for Inuit. They also demonstrate the necessity of considering place meanings, culture, and socio-historical context to assess the complexity of climate change impacts on Indigenous environmental health.
Internal Migration, Area Effects and Health: Does Where You Move to Impact Upon Your Health?
Mark A. Green, S.V. Subramanian, Daniel Vickers, and Danny Dorling
Evidence surrounding the importance of neighbourhood on health has been mostly restricted to observational data analyses. However, observational data are often the only source of information available to test this association and can fail to accurately draw out casual effects. This study employs a pseudo-experimental design to provide a novel test for the evidence of neighbourhood effects on health, using migration as a mechanism for assessing the role of neighbourhood. Coarsened exact matching was employed on the British Household Panel Survey (2006–2008) to analyse the association between migration (by area type, measured using a classification of mortality patterns) and health. Although an overall significant positive association between migration and health was observed, once the effect was disaggregated by location and destination it disappeared. Rather, evidence of health selective migration was found whereby individuals of poorer health migrated to areas that displayed poorer health and social characteristics (and vice versa). Migration is an important process that through the social sorting of individuals in terms of their health, contributes to the growing polarisation and inequality in health patterns. The study helps to build upon previous research through providing a new and stronger form of analysis that reduces the influence of bias on results. Incorporating this under-utilised methodology and research design in future studies could help develop public health and geographical research.
A Systematic Approach to Implementing and Evaluating Clinical Guidelines: The Results of Fifteen Years of Preventive Child Health Care Guidelines in the Netherlands
Margot A.H. Fleuren, Paula van Dommelen, and Trudy Dunnink
Preventive Child Health Care (PCHC) services are delivered to all children in the Netherlands by approximately 5500 doctors, nurses and doctor’s assistants. In 1996, The Dutch Ministry of Health, Welfare and Sports asked for the development of evidence-based PCHC guidelines. Since 1998, twenty-five guidelines have been published. Levels of implementation affect outcomes and so implementation and evaluation of the actual use of guidelines are essential. At the outset, there was a national implementation plan with six main activities: a) determinant analysis before the implementation of a guideline, b) innovation strategies tailored to the determinants, c) dissemination to all professionals, d) ongoing evaluation of the awareness and use of the guidelines, e) trained implementation coordinator(s) in each PCHC organization and f) a national help desk. The awareness and use of the guidelines in random samples of doctors, nurses and doctor’s assistants were surveyed using questionnaires. The respondents stated (on a 7-point scale) the proportion of all children they had exposed to given core elements in a guideline. The aim is for at least 90% of the professionals to be aware of the guideline and for 80% to perform the core elements for all (or nearly all) children. The six main activities, with the exception of ongoing evaluation, were gradually put into place, albeit only gradually, between 1998 and 2015 for all guidelines. In 2012, the use of individual core elements in all guidelines, dating from before 2012, varied from 28% to 100%. One guideline met both criteria of 90% awareness and 80% use, and three guidelines nearly met these criteria. Looking back on fifteen years of PCHC guidelines, we may conclude that the guidelines produced recently are implemented in accordance with the national implementation plan. Unfortunately, the evaluation of guideline use continues to be a difficulty.
The Effect of a Severe Health Shock on Work Behavior: Evidence from Different Health Care Regimes
Nabanita Datta Gupta, Kristin J. Kleinjans, and Mona Larsen
In this paper, we use the policy variation of two different types of health insurance in the US and in Denmark – employer-provided and universal insurance combined with substantial differences in expected and actual medical out-of-pocket expenditures – to explore the effect of new severe health shocks on the labor force participation of older workers. Our results not only provide insight into how relative disease risk affects labor force participation at older ages, but also into how different types of health care and health insurance systems affect individual decisions of labor force participation. Although employer-tied health insurance and greater out-of-pocket medical expenditures give US Americans greater incentives to continue to work, we find only small differences in the work response between the two countries. We provide compelling evidence that our somewhat counterintuitive finding is the result of differential mortality and baseline health differences coupled with distinct treatment regimes under the respective health care systems.
Globalization, Democracy, and Child Health in Developing Countries
Anna Welander, Carl Hampus Lyttkens, and Therese Nilsson
Good health is crucial for human and economic development. In particular poor health in childhood is of utmost concern since it causes irreversible damage and has implications later in life. Recent research suggests globalization is a strong force affecting adult and child health outcomes. Yet, there is much unexplained variation with respect to the globalization effect on child health, in particular in low- and middle-income countries. One factor that could explain such variation across countries is the quality of democracy. Using panel data for 70 developing countries between 1970 and 2009 this paper disentangles the relationship between globalization, democracy, and child health. Specifically the paper examines how globalization and a country’s democratic status and historical experience with democracy, respectively, affect infant mortality. In line with previous research, results suggest that globalization reduces infant mortality and that the level of democracy in a country generally improves child health outcomes. Additionally, democracy matters for the size of the globalization effect on child health. If for example Côte d’Ivoire had been a democracy in the 2000–2009 period, this effect would translate into 1200 fewer infant deaths in an average year compared to the situation without democracy. We also find that nutrition is the most important mediator in the relationship. To conclude, globalization and democracy together associate with better child health in developing countries.
In hospital care, management of the risk of infection represents a crucial issue. Nevertheless, this question remains a neglected area in anthropological research, especially in African countries. To shed new light on this question, we conducted an anthropological investigation in the infectious disease department of a hospital in Niger. Daily observation of the work of the hospital staff for a total period of 6 months was spread out over 2008 and 2009. During our prolonged stay, we also collected 64 in-depth interviews of health care workers and attendants in the department. This study method made it possible to describe many of the practices and discourses related to the issues of medical and personal care and hospital hygiene and to compare the practices observed to standard principles for preventing hospital-acquired infections. Our ethnographic attention to the behavior of the actors showed the absence of formal spatial segmentations between different activities. The care provided by the untrained relatives serving as personal attendants introduced territorial enclaves governed by home hygiene standards into the interior of technical spaces. At the same time, privatizing equipment and space for their diverse activities, the medical staff disrupted technical chains and generated the recurrent crossing of microbial geographies. These results allow us to offer two principal guidelines for improving the quality of care and the management of risks of infection in hospitals in West Africa: (1) the essential role of the attendants in the care provided to hospital inpatients must be officially taken into account, especially by including them in the organization of medical hygiene procedures; (2) the different overlapping technical activities and social activities in the work space must be limited by their geographic and architectural segmentation.
Epidemics in Ming and Qing China: Impacts of Changes of Climate and Economic Well-Being
Qing Pei, David D. Zhang, Guodong Li, Bruce Winterhalder, and Harry F. Lee
We investigated the mechanism of epidemics with the impacts of climate change and socio-economic fluctuations in the Ming and Qing Dynasties in China (AD 1368–1901). Using long-term and high-quality datasets, this study is the first quantitative research that verifies the ‘climate change → economy → epidemics’ mechanism in historical China by statistical methods that include correlation analysis, Granger causality analysis, ARX, and Poisson-ARX modeling. The analysis provides the evidences that climate change could only fundamentally lead to the epidemics spread and occurrence, but the depressed economic well-being is the direct trigger of epidemics spread and occurrence at the national and long term scale in historical China. Moreover, statistical modeling shows that economic well-being is more important than population pressure in the mechanism of epidemics. However, population pressure remains a key element in determining the social vulnerability of the epidemics occurrence under climate change. Notably, the findings not only support adaptation theories but also enhance our confidence to address climatic shocks if economic buffering capacity can be promoted steadily. The findings can be a basis for scientists and policymakers in addressing global and regional environmental changes.
Occupational Closure in Nursing Work Reconsidered: UK Health Care Support Workers and Assistant Practitioners: A Focus Group Study
Michael Traynor, Nina Nissen, Carol Lincoln, and Niels Buus
In healthcare, occupational groups have adopted tactics to maintain autonomy and control over their areas of work. Witz described a credentialist approach to occupational closure adopted by nursing in the United Kingdom during the 19th and early 20th centuries. However, the recent advancement of assistant, ‘non-qualified’ workers by governments and managers forms part of a reconfiguration of traditional professional work. This research used focus groups with three cohorts of healthcare support workers undertaking assistant practitioner training at a London university from 2011 to 13 (6 groups, n = 59). The aim was to examine how these workers positioned themselves as professionals and accounted for professional boundaries. A thematic analysis revealed a complex situation in which participants were divided between articulating an acceptance of a subordinate role within traditional occupational boundaries and a usurpatory stance towards these boundaries. Participants had usually been handpicked by managers and some were ambitious and confident in their abilities. Many aspired to train to be nurses claiming that they will gain recognition that they do not currently get but which they deserve. Their scope of practice is based upon their managers’ or supervisors’ perception of their individual aptitude rather than on a credentialist claim. They ‘usurp’ nurses claim to be the healthcare worker with privileged access to patients, saying they have taken over what nursing has considered its core work, while nurses abandon it for largely administrative roles. We conclude that the participants are the not unwilling agents of a managerially led project to reshape the workforce that cuts across existing occupational boundaries.
From Substance Use to Homelessness or Vice Versa?
Duncan McVicar, Julie Moschion, Jan C. van Ours
Homelessness is associated with substance use, but whether substance use precedes or follows homelessness is unclear. We investigate the nature of the relationship between homelessness and substance use using data from the unique Australian panel dataset Journeys Home collected in 4 surveys over the period from October 2011 to May 2013. Our data refer to 1325 individuals who were homeless or at risk of becoming homeless. We investigate dynamics in homelessness and substance use over the survey period. We find that the two are closely related: homeless individuals are more likely to be substance users and substance users are more likely to be homeless. These relationships, however, are predominantly driven by observed and unobserved individual characteristics which cause individuals to be both more likely to be homeless and to be substance users. Once we take these personal characteristics into account it seems that homelessness does not affect substance use, although we cannot rule out that alcohol use increases the probability that an individual becomes homeless. These overall relationships also hide some interesting heterogeneity by ‘type’ of homelessness.
Choice and Compassion at the End of Life: A Critical Analysis of Recent English Policy Discourse
Erica Borgstrom and Tony Walter
End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done. Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity. Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries.
How do Living Arrangements and Intergenerational Support Matter for Psychological Health of Elderly Parents? Evidence from Myanmar, Vietnam, and Thailand
Bussarawan Teerawichitchainan, Wiraporn Pothisiri, and Giang Thanh Long
Living arrangements and family support for older persons have become an increasingly important policy concern in developing and rapidly aging Asia. Formulating a sound elderly care policy for the region will benefit from empirically examining how living arrangements, particularly coresidence, and intergenerational exchanges of financial, instrumental, and emotional support are associated with old-age psychological health. This study analyzes data from nationally representative aging surveys in Myanmar, Vietnam, and Thailand for 2011–2012 to offer a comparative perspective from Southeast Asia where various kinship systems coexist. Results suggest that coresidence with a child of culturally preferred gender significantly improves the emotional health of Vietnamese and Thai elders but with different implications. In Vietnam, living with a married son is more beneficial to parents’ psychological wellbeing than living with other children. In Thailand, coresidence regardless of the child’s gender improves old-age psychological wellbeing but living with a daughter brings greater benefits than living only with son. Evidence points to the importance of understanding the dominant kinship system that may shape normative filial expectations and gender role expectations within the family. In Vietnam and Thailand, the positive association holds even after intergenerational support is controlled, suggesting that the value of culturally preferred coresidence goes beyond practical functions. In Myanmar, there are almost no significant differences in psychological wellbeing among elderly across various living arrangements, except between coresidence and network living arrangements. For all settings, we do not find evidence in support of network family arrangements as a complete substitute for coresidence in terms of promoting old-age psychological wellbeing after filial support is controlled. Our study highlights important cultural nuances for theorizing the nature of the relationship between living arrangements and old-age psychological health, and presents the important need for more rigorous investigation of the causal links between these two phenomena in future research.
Does the socioeconomic status (SES) that one’s (ego’s) network members (alters) occupy indicate social resources or social comparison standards in the dynamics of health across culture? Using nationally representative data simultaneously collected from the United States and urban China, this study examines two competing theories—social capital and comparative reference group—in the two societies and compares their different application across the two societies using two cultural explanations, relational dependence and self-evaluation motive. Social capital theory expects absolute accessed SES and the size of higher accessed socioeconomic positions to protect health, and the size of lower accessed socioeconomic positions to harm health. But comparative reference group theory predicts the opposite. Additionally, the relational dependence explanation anticipates social capital theory to be more applicable to urban China and comparative reference group theory to be more applicable to the United States. The self-evaluation motive explanation expects the same pattern across the two societies in the examination of the size of lower accessed socioeconomic positions but the opposite pattern in the analysis of absolute accessed SES and the size of higher accessed socioeconomic positions. This study focuses on depressive symptoms and measures accessed occupational status. Results are consistent with the self-evaluation motive explanation. They support both social capital theory and comparative reference group theory in the United States but only the latter theory in urban China.
In this article, the concept of medical dominance is “unfolded” into four different components: 1) professional autonomy; 2) superiority over other healthcare professions; 3) influence on policy makers; 4) authority with respect to patients. These four components will serve to bring to surface the transformations which the medical profession in Italy is currently undergoing. Special emphasis is placed on the challenges that Italian physicians are facing and the strategies they are adopting to try to maintain their dominant position. Coming to conclusions, Italian physicians seem to retain their supremacy over other healthcare professions, and are particularly adept at controlling the legislative process on healthcare issues. Conversely, Italian physicians are losing their influence on patients (as evidenced by the growing number of allegations of malpractice) and complain that their professional autonomy is diminishing and their work has become far too bureaucratized.
Self-Reported Health and Socio-Economic Inequalities in England, 1996-2009: Repeated National Cross-Sectional Study
Hendramoorthy Maheswaran, Emil Kopek, and Stavros Petrou
Tackling social inequalities in health has been a priority for recent UK governments. We used repeated national cross-sectional data for 155,311 participants (aged ≥16 years) in the Health Survey of England to examine trends in socio-economic inequalities in self-reported health over a recent period of sustained policy focus by successive UK governments aimed at tackling social inequalities in health. Socio-economic related inequalities in self-reported health were estimated using the Registrar General’s occupational classification (1996–2009), and for sensitivity analyses, the National Statistics Socio-Economic Classification (NS-SEC; 2001–2011). Multi-level regression was used to evaluate time trends in General Health Questionnaire (GHQ-12) scores and bad or very bad self-assessed health (SAH), as well as EQ-5D utility scores. The study found that the probability of reporting GHQ-12 scores ≥4 and ≥ 1 was higher in those from lower social classes, and decreased for all social classes between 1997 and 2009. For SAH, the probability of reporting bad or very bad health remained relatively constant for social class I (professional) [0.028 (95%CI: 0.026, 0.029) in 1996 compared to 0.028 (95%CI: 0.024, 0.032) in 2009], but increased in lower social classes, with the greatest increase observed amongst those in social class V (unskilled manual) [0.089 (95%CI: 0.085, 0.093) in 1996 compared to 0.155 (95%CI: 0.141, 0.168) in 2009]. EQ-5D utility scores were lower for those in lower social classes, but remained comparable across survey years. In sensitivity analyses using the NS-SEC, health outcomes improved from 2001 to 2011, with no evidence of widening socio-economic inequalities. Our findings suggest that socio-economic inequalities have persisted, with evidence of widening for some adverse self-reported health outcomes.
The SPIRIT Action Framework: A Structured Approach to Selecting and Testing Strategies to Increase the Use of Research in Policy
Sally Redman, Tari Turner, Huw Davies, Anna Williamson, Abby Haynes, Sue Brennan, Andrew Milat, Denise O’Connor, Fiona Blyth, Louisa Jorm, and Sally Green
The recent proliferation of strategies designed to increase the use of research in health policy (knowledge exchange) demands better application of contemporary conceptual understandings of how research shapes policy. Predictive models, or action frameworks, are needed to organise existing knowledge and enable a more systematic approach to the selection and testing of intervention strategies. Useful action frameworks need to meet four criteria: have a clearly articulated purpose; be informed by existing knowledge; provide an organising structure to build new knowledge; and be capable of guiding the development and testing of interventions. This paper describes the development of the SPIRIT Action Framework. A literature search and interviews with policy makers identified modifiable factors likely to influence the use of research in policy. An iterative process was used to combine these factors into a pragmatic tool which meets the four criteria. The SPIRIT Action Framework can guide conceptually-informed practical decisions in the selection and testing of interventions to increase the use of research in policy. The SPIRIT Action Framework hypothesises that a catalyst is required for the use of research, the response to which is determined by the capacity of the organisation to engage with research. Where there is sufficient capacity, a series of research engagement actions might occur that facilitate research use. These hypotheses are being tested in ongoing empirical work.
‘It’s Safer To…’ Parent Consulting and Clinician Antibiotic Prescribing Decisions for Children with Respiratory Tract Infections: An Analysis Across Four Qualitative Studies
Christie Cabral, Patricia J. Lucas, Jenny Ingram, Alastair D. Hay, and Jeremy Horwood
This paper reports a cross-study analysis of four studies, aiming to understand the drivers of parental consulting and clinician prescribing behaviour when children under 12 years consult primary care with acute respiratory tract infections (RTI). Qualitative data were obtained from three primary studies and one systematic review. Purposeful samples were obtained for (i) a focus group study of parents’ information needs and help seeking; (ii) an interview study of parents’ experiences of primary health care (60 parents in total); and (iii) an interview study of clinicians’ experiences of RTI consultations for children (28 clinicians). The systematic review synthesised parent and clinician views of prescribing for children with acute illness. Reoccurring themes and common patterns across the whole data set were noted. Through an iterative approach involving re-examination of the primary data, translation of common themes across all the studies and re-organisation of these themes into conceptual groups, four overarching themes were identified. These were: the perceived vulnerability of children; seeking safety in the face of uncertainty; seeking safety from social disapproval; and experience and perception of safety. The social construction of children as vulnerable and normative beliefs about the roles of parents and clinicians were reflected in parents’ and clinicians’ beliefs and decision making when a child had an RTI. Consulting and prescribing antibiotics were both perceived as the safer course of action. Therefore perception of a threat or uncertainty about that threat tended to lead to parental consulting and clinician antibiotic prescribing. Clinician and parent experience could influence the perception of safety in either direction, depending on whether previous action had resulted in perceived increases or decreases in safety. Future interventions aimed at reducing unnecessary consulting or antibiotic prescribing need to consider how to make the desired action fit with social norms and feel safer for parents and clinicians.
Associated with overweight, obesity and chronic diseases, the nutrition transition process reveals important socioeconomic issues in Mexico. Using panel data from the Mexican Family Life Survey, the purpose of the study is to estimate the causal effect of household socioeconomic status (SES) on nutritional outcomes among urban adults. We divide the analysis into two steps. First, using a mixed clustering procedure, we distinguish four socioeconomic classes based on income, educational and occupational dimensions: (i) a poor class; (ii) a lower–middle class; (iii) an upper–middle class; (iv) a rich class. Second, using an econometric framework adapted to our study (the Hausman-Taylor estimator), we measure the impact of belonging to these socioeconomic groups on individual anthropometric indicators, based on the body-mass index (BMI) and the waist-to-height ratio (WHtR). Our results make several contributions: (i) we show that a new middle class, rising out of poverty, is the most exposed to the risks of adiposity; (ii) as individuals from the upper class seem to be fatter than individuals from the upper–middle class, we can reject the assumption of an inverted U-shaped relationship between socioeconomic and anthropometric status as commonly suggested in emerging economies; (iii) the influence of SES on central adiposity appears to be particularly strong for men.
Simulated patient encounters, in which a trained layperson role-plays a patient, have become increasingly important in medical education. One such type is the gynecological teaching associate (GTA), who teaches medical students how to perform the pelvic examination using her own body. This paper considers the role that simulation like the GTA session plays in medical students’ professional socialization. Drawn from interviews and archival sources gathered from medical students, medical faculty, and GTAs, this paper explores the tensions between artificiality and authenticity in order to understand how, through pedagogical practice, medical students come to embody medical culture through simulation. This paper uses the theoretical framework of the medical habitus to understand the role of emotion in medical student socialization. It argues that simulation is an example of affective practice: any rehearsal of techniques or styles of expressing, experiencing, or managing emotion that reshape the body’s capacity to feel.
Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004
Javier M. Rodriguez, Arline T. Geronimus, John Bound, and Danny Dorling
Excess mortality in marginalized populations could be both a cause and an effect of political processes. We estimate the impact of mortality differentials between blacks and whites from 1970 to 2004 on the racial composition of the electorate in the US general election of 2004 and in close statewide elections during the study period. We analyze 73 million US deaths from the Multiple Cause of Death files to calculate: (1) Total excess deaths among blacks between 1970 and 2004, (2) total hypothetical survivors to 2004, (3) the probability that survivors would have turned out to vote in 2004, (4) total black votes lost in 2004, and (5) total black votes lost by each presidential candidate. We estimate 2.7 million excess black deaths between 1970 and 2004. Of those, 1.9 million would have survived until 2004, of which over 1.7 million would have been of voting-age. We estimate that 1 million black votes were lost in 2004; of these, 900,000 votes were lost by the defeated Democratic presidential nominee. We find that many close state-level elections over the study period would likely have had different outcomes if voting age blacks had the mortality profiles of whites. US black voting rights are also eroded through felony disenfranchisement laws and other measures that dampen the voice of the US black electorate. Systematic disenfranchisement by population group yields an electorate that is unrepresentative of the full interests of the citizenry and affects the chance that elected officials have mandates to eliminate health inequality.
Exploring the Use of Social Network Analysis to Measure Communication Between Disease Programme and District Managers at Sub-National Level in South Africa
Mary Kawonga, Duane Blaauw, and Sharon Fonn
With increasing interest in maximising synergies between disease control programmes (DCP) and general health services (GHS), methods are needed to measure interactions between DCP and GHS actors. In South Africa, administrative integration reforms make GHS managers at decentralised level (district managers) responsible for the oversight of DCP operations within districts, with DCP managers (programme managers) providing specialist support. The reforms necessitate interdependence, but these actors work together ineffectively. Communication is crucial for joint working, but no research to assess communication between these actors has been done. This study explores the use of social network analysis (SNA) to measure the extent to which programme and district managers in South Africa communicate, using HIV monitoring and evaluation (M&E) as an exemplar. Data were collected from fifty one managers in two provinces during 2010–2011, to measure: a) one-on-one task-related communication – talking about the collation (verification, reporting) and use of HIV data for monitoring HIV interventions; and b) group communication through co-participating in management committees where HIV data are used for monitoring HIV interventions in districts. SNA measures were computed to describe actor centrality, network density (cohesion), and communication within and between respective manager groups. Block modelling was applied to identify management committees that connect respective manager groups. Results show HIV programme managers located at higher level communicated largely amongst themselves as a group (homophily), seldom talked to the district managers to whom they are supposed to provide specialist HIV M&E support, and rarely participated with them in management committees. This research demonstrates the utility of SNA as a tool for measuring the extent of communication between DCP and GHS actors at sub-national level. Actions are needed to bridge observed communication gaps in order to promote collaborative monitoring of HIV programme interventions within districts.
Doubt, Defiance, and Identity: Understanding Resistance to Male Circumcision for HIV Prevention in Malawi
Justin O. Parkhurst, David Chilongozi, and Eleanor Hutchinson
Global policy recommendations to scale up of male circumcision (MC) for HIV prevention tend to frame the procedure as a simple and efficacious public health intervention. However, there has been variable uptake of MC in countries with significant HIV epidemics. Kenya, for example, has embraced MC and has been dubbed a ‘leader’ by the global health community, while Malawi has been branded a ‘laggard’ in its slow adoption of a national programme, with a strong political discourse of resistance forming around MC. Regardless of any epidemiological or technical evidence, the uptake of international recommendations will be shaped by how a policy, and the specific artefacts that constitute that policy, intersect with local concerns. MC holds particular significance within many ethnic and religious groups, serving as an important rite of passage, but also designating otherness or enabling the identification of the social and political self. Understanding how the artefact of MC intersects with local social, economic, and political contexts, is therefore essential to understand the acceptance or resistance of global policy recommendations. In this paper we present an in-depth analysis of Malawi’s political resistance to MC, finding that ethnic and religious divisions dominating recent political movements aligned well with differing circumcision practices. Political resistance was further found to manifest through two key narratives: a ‘narrative of defiance’ around the need to resist donor manipulation, and a ‘narrative of doubt’ which seized on a piece of epidemiological evidence to refute global claims of efficacy. Further, we found that discussions over MC served as an additional arena through which ethnic identities and claims to power could themselves be negotiated, and therefore used to support claims of political legitimacy.
Neighbourhood Vitality and Physical Activity Among the Elderly: The Role of Walkable Environments on Active Ageing in Barcelona, Spain
Orion Marquet and Carme Miralles-Guasch
This study investigated whether neighbourhood vitality and walkability were associated with active ageing of the elderly. Immobility, activity engagement and physical activity were explored in relation with age, gender and walkability of the built environment. Number of trips per day and minutes spent on walking by the elderly were extracted from a broad travel survey with more than 12,000 CATI interviews and were compared across vital and non-vital urban environments. Results highlight the importance of vital environments for elderly active mobility as subpopulations residing in highly walkable neighbourhoods undertook more trips and spent more minutes walking than their counterparts. The results also suggest that the built environment has different effects in terms of gender, as elderly men were more susceptible to urban vitality than elderly women.
Migrants and ethnic minorities are under-represented in spaces created to give citizens voice in healthcare governance. Excluding minority groups from the health participatory sphere may weaken the transformative potential of public participation, (re)producing health inequities. Yet few studies have focused on what enables involvement of marginalised groups in participatory spaces. This paper addresses this issue, using the Participation Chain Model (PCM) as a conceptual framework, and drawing on a case study of user participation in a Dutch mental health advocacy project involving Cape Verdean migrants. Data collection entailed observation, documentary evidence and interviews with Cape Verdeans affected by psychosocial problems (n = 20) and institutional stakeholders (n = 30). We offer practice, policy and theoretical contributions. Practically, we highlight the importance of a proactive approach providing minorities and other marginalised groups with opportunities and incentives that attract, retain and enable them to build and release capacity through involvement. In policy terms, we suggest that both health authorities and civil society organisations have a role in creating ‘hybrid’ spaces that promote the substantive inclusion of marginalised groups in healthcare decision-making. Theoretically, we highlight shortcomings of PCM and its conceptualisation of users’ resources, suggesting adaptations to improve its conceptual and practical utility.
Increased Incidence of Coronary Heart Disease Associated with ‘Double Burden’ in a Cohort of Italian Women
Fabrizio D’Ovidio, Angelo d’Errico, Cecilia Scarinzi, and Guiseppe Costa
Objective of this study was to assess the risk of coronary heart disease (CHD) associated with the combination of employment status and child care among women of working age, also examining the sex of the offspring. Only two previous studies investigated the effect of double burden on CHD, observing an increased risk among employed women with high domestic burden or providing child care, although the relative risks were marginally or not significant. The study population was composed of all women 25–50 years old at 2001 census, living in Turin in families composed only by individuals or couples, with or without children (N = 109,358). Subjects were followed up during 2002–2010 for CHD incidence and mortality through record-linkage of the cohort with the local archives of mortality and hospital admissions. CHD risk was estimated by multivariate Poisson regression models. Among employed women, CHD risk increased significantly by 29% for each child in the household (IRR = 1.29) and by 39% for each son (IRR = 1.39), whereas no association with the presence of children was found among non-employed women or among employed women with daughters. When categorized, the presence of two or more sons significantly increased CHD risk among employed women (IRR = 2.23), compared to those without children. The study found a significant increase in CHD risk associated with the presence of two or more sons in the household, but not daughters, among employed women. This is a new finding, which should be confirmed in other studies, conducted also in countries where the division of domestic duties between males and females is more balanced, such as the European Nordic countries.
Gender, Coping Strategies, Homelessness Stressors, and Income Generation Among Homeless Young Adults in Three Cities
Kristin M. Ferguson, Kimberly Bender, Sanna J. Thompson
This study examined gender differences among homeless young adults’ coping strategies and homelessness stressors as they relate to legal (e.g., full-time employment, selling personal possessions, selling blood/plasma) and illegal economic activity (e.g., selling drugs, theft, prostitution). A sample of 601 homeless young adults was recruited from 3 cities (Los Angeles, CA [n = 200], Austin, TX [n = 200], and Denver, CO [n = 201]) to participate in semi-structured interviews from March 2010 to July 2011. Risk and resilience correlates of legal and illegal economic activity were analyzed using six Ordinary Least Squares regression models with the full sample and with the female and male sub-samples. In the full sample, three variables (i.e., avoidant coping, problem-focused coping, and mania) were associated with legal income generation whereas eight variables (i.e., social coping, age, arrest history, transience, peer substance use, antisocial personality disorder [ASPD], substance use disorder [SUD], and major depressive episode [MDE]) were associated with illegal economic activity. In the female sub-sample, three variables (i.e., problem-focused coping, race/ethnicity, and transience) were correlated with legal income generation whereas six variables (i.e., problem-focused coping, social coping, age, arrest history, peer substance use, and ASPD) were correlated with illegal economic activity. Among males, the model depicting legal income generation was not significant yet seven variables (i.e., social coping, age, transience, peer substance use, ASPD, SUD, and MDE) were associated with illegal economic activity. Understanding gender differences in coping strategies and economic activity might help customize interventions aimed at safe and legal income generation for this population.
The “rightness” of a technology for completing a particular task is negotiated by medical professionals, patients, state institutions, manufacturing companies, and non-governmental organizations. This paper shows how certain technologies may challenge the meaning of the “job” they are designed to accomplish. Manual vacuum aspiration (MVA) is a syringe device for uterine evacuation that can be used to treat complications of incomplete abortion, known as post-abortion care (PAC), or to terminate pregnancy. I explore how negotiations over the rightness of MVA as well as PAC unfold at the intersection of national and global reproductive politics during the daily treatment of abortion complications at three hospitals in Senegal, where PAC is permitted but induced abortion is legally prohibited. Although state health authorities have championed MVA as the “preferred” PAC technology, the primary donor for PAC, the United States Agency for International Development, does not support the purchase of abortifacient technologies. I conducted an ethnography of Senegal’s PAC program between 2010 and 2011. Data collection methods included interviews with 49 health professionals, observation of PAC treatment and review of abortion records at three hospitals, and a review of transnational literature on MVA and PAC. While MVA was the most frequently employed form of uterine evacuation in hospitals, concerns about off-label MVA practices contributed to the persistence of less effective methods such as dilation and curettage (D&C) and digital curettage. Anxieties about MVA’s capacity to induce abortion have constrained its integration into routine obstetric care. This capacity also raises questions about what the “job,” PAC, represents in Senegalese hospitals. The prioritization of MVA’s security over women’s access to the preferred technology reinforces gendered inequalities in health care.
Educational Trajectories After Childhood Cancer: When Illness Experience Matters
A. Duman, I. Cailbault, C. Perrey, O. Oberlin, F. De Vathaire, and P. Amiel
With the increase in survival from childhood cancer, research has increasingly focused on the educational and professional achievements of childhood cancer survivors. Yet, if large-scale studies provide an acute description of the current situation of childhood cancer survivors, little is known about their trajectories and the social processes shaping these trajectories. Using a qualitative methodology, drawing from a life course perspective, this study sought to describe the role of childhood cancer and its side effects in educational trajectories, as perceived by the participants. We investigated related processes of social adjustment to cancer, that is to say, choices or decisions that survivors related to the illness in the making of their career plans. Eighty long-term French childhood cancer survivors participating in the Euro2K longitudinal study were interviewed through in-depth, face-to-face interviews undertaken in 2011–2012. There were various types of impact described by respondents of the diagnosis of cancer on their trajectories. These varied according to gender. In women, childhood cancer tended to result in poor educational achievement, or in steering the individual towards a health care or child care occupation. This was justified by a desire to return the support that had been offered to them as patients. In men, however, childhood cancer led to a shift in career plans, because of physical sequelae, or because of concerns about their future health. Paradoxically, this limitation had a positive impact in their occupational achievement, as most of these men disregarded blue-collar jobs and chose more qualified white-collar occupations. Overall, findings suggest that childhood cancer influenced educational trajectories and, thus, socioeconomic status in adulthood, through mechanisms embedded in gender norms. These mechanisms could explain gender inequalities in educational achievement after childhood cancer reported in large-scale cohort studies.
Access to Critical Medicines: When are Compulsory Licenses Effective in Price Negotiations?
Shyama V. Ramani and Eduardo Urias
Governments of developing countries can be in a vulnerable position with respect to patent protected drugs supplied by foreign firms, if the technology cannot be licensed or independently developed by local firms. In such instances, one possible solution is to negotiate for a price-drop with the patent holder in lieu of issuing a compulsory license. The present paper develops a game theoretic model of such bargaining and shows that while compulsory licenses do not occur under complete information, they can be issued under incomplete information. The model is tested against real episodes of compulsory licenses to derive policy insight.
Power Relations and Contrasting Conceptions of Evidence in Patient-Involvement Processes Used to Inform Health Funding Decisions in Australia
Edilene Lopes, Drew Carter, and Jackie Street
We collected and analysed views of key stakeholders on the processes used to involve patient organisations in health care funding decision making in Australia. We conducted 12 semi-structured interviews with patient organisation representatives and members of Advisory Committees that provide advice to the Australian Department of Health and employ Health Technology Assessment (HTA) as an evaluation framework. Using two theoretical frameworks, we analysed structural and contextual elements pertaining to the involvement processes. The findings reported in this article relate to interviewees’ perspectives on contextual elements, analysed using a Foucauldian lens. These elements include: the perspectives of marginalised voices; the diversity of views on what ought to be considered valid evidence in a HTA setting; and the relationships between stakeholders, along with how these relationships impact on involvement processes and the outcomes of those processes. The findings demonstrate that the involvement processes currently used are deemed inadequate by both patient organisation representatives and Advisory Committee members, but for different reasons connected to how different stakeholders conceptualise evidence. Advisory Committee members viewed evidence as encompassing clinical outcomes and patient preferences, whereas patient organisation representatives tended to view evidence as encompassing aspects not directly related to a disease entity, such as the social and emotional aspects of patients’ experiences in living with illness. Patient organisation representatives reported interacting with other stakeholders (especially industry) to increase the influence of their conception of evidence on decision making. The use of this strategy by interviewees illustrates how power struggles occur in government decision-making processes which involve both medical expertise and patients’ accounts. Such struggles, and the power differentials they reflect, need to be considered by those responsible for designing and implementing meaningful public- and patient-involvement processes.
Coping with Breast Cancer and Relapse: Stability of Coping and Long-Term Outcomes in an Observational Study Over 10 Years
Siegfried Geyer, Heike Koch-Giesselmann, and Dorothee Noeres
Many studies dealing with relationships between coping and breast cancer were based on a single measurement of coping behaviour. Assessments were taking place soon after surgery of primary breast cancer, and effects on long-term outcomes were considered. In our study it was examined whether coping behaviours are stable over time and whether they were associated with breast cancer recurrence.
The analyses were based on a long-term study with initially 254 patients with three interviews and an outcome assessment within a total study period of 10 years. Data were collected by means of qualitative interviews and standardized questionnaires. Ways of coping in terms of helplessness, denial, mastery, and hope/optimism were classified by interviewer-based ratings within the framework of a standardized rating procedure. The reliability of rating standards was assured by continuous training and by estimating inter-rater agreements. Outcome measures were drawn from registries and patients’ files. Coping behaviours over three interviews within six years after surgery turned out to be highly variable, and the respective correlations were low. For none of the four ways of coping associations with recurrence emerged. Coping in response to breast cancer was not stable over time, so we may conclude that the results of one measurement assessed early in the disease course should not be considered as constant over longer time periods. Coping behaviours were unrelated with recurrence, a finding that might be relieving from a patient perspective.
Longitudinal Association of Neighborhood Variables with Body Mass Index in Dutch School-Age Children: The KOALA Birth Cohort Study
Swantje C. Schmidt, Ester F.C. Sleddens, Sanne I. de Vries, Jessica Gubbels, and Carel Thijs
Changes in the neighborhood environment may explain part of the rapid increase in childhood overweight and obesity during the last decades. To date few theory-driven rather than data-driven studies have explored longitudinal associations between multiple neighborhood characteristics and child body weight development. We aimed to assess the relationship between physical, social and perceived safety related characteristics of the neighborhood and Body Mass Index (BMI) development in children during early school age, using a longitudinal design. We included an examination of moderating and confounding factors based on a conceptual model adapted from the EnRG framework (Environmental Research framework for weight Gain prevention) and empirical research. Analyses included 1887 children from the KOALA Birth Cohort Study followed from baseline age 4–5 years until 8–9 years. For children age 4–5 years, parents completed a questionnaire measuring characteristics of the neighborhood. Reliability and factor analyses were used to identify constructs for neighborhood characteristics. Linear regression analysis was performed to assess the relationship between neighborhood constructs and BMI z-scores cross-sectionally at age 4–5 years and longitudinally using Generalized Estimating Equations with BMI z-scores over 5 repeated measurements until age 8–9 years. Fourteen constructs were identified and grouped in three domains including perceived physical, social, or safety related characteristics of the neighborhood. Cross-sectionally, a lower BMI z-score was associated with higher perceived physical attractiveness of the neighborhood environment (standardized regression coefficient (β) −0.078, 95% CI −0.123 to −0.034) and a higher level of social capital (β −0.142, −0.264 to −0.019). Longitudinally, similar associations were observed with potentially even stronger regression coefficients. This study suggests that BMI in children is mainly related to the modifiable physical and social environment of the conceptual model and not related to safety as perceived by parents.
Rationalising Prescribing: Evidence, Marketing and Practice-Relevant Knowledge
Sarah Wadmann and Lia E. Bang
Initiatives in the name of ‘rational pharmacotherapy’ have been launched to alter what is seen as ‘inappropriate’ prescribing practices of physicians. Based on observations and interviews with 20 general practitioners (GPs) in 2009–2011, we explored how attempts to rationalise prescribing interact with chronic care management in Denmark. We demonstrate how attempts to rationalise prescribing by informing GPs about drug effects, adverse effects and price do not satisfy GPs’ knowledge needs. We argue that, for GPs, ‘rational’ prescribing cannot be understood in separation from the processes that enable patients to use medication. Therefore, GPs do much more to obtain knowledge about medications than seek advice on ‘rational pharmacotherapy’. For instance, GPs also seek opportunities to acquaint themselves with the material objects of medication and medical devices. We conceptualise the knowledge needs of GPs as a need for practice-relevant knowledge and argue that industry sales representatives are granted opportunity to access general practice because they understand this need of GPs.
Who Benefits from Removing User Fees for Facility-Based Delivery Services? Evidence on Socioeconomic Differences from Ghana, Senegal and Sierra Leone
Britt McKinnon, Sam Harper, and Jay S. Kaufman
Coverage of skilled delivery care has been increasing across most low-income countries; however, it remains far from universal and is very unequally distributed according to socioeconomic position. In an effort to increase coverage of skilled delivery care and reduce socioeconomic inequalities, governments of several countries in sub-Saharan Africa have recently adopted policies that remove user fees for facility-based delivery services. There is little rigorous evidence of the impact of these policies and few studies have examined effects on socioeconomic inequalities. This study investigates the impact of recent delivery fee exemption policies in Ghana, Senegal, and Sierra Leone on socioeconomic differences in the use of facility-based delivery services. Using Demographic and Health Survey data from nine sub-Saharan African countries, we evaluated the user fee policy changes using a difference-in-differences approach that accounts for underlying common secular trends and time invariant differences among countries, and allows for differential effects of the policy by socioeconomic position. Removing user fees was consistent with meaningful increases in facility deliveries across all categories of household wealth and maternal education. We found little evidence of differential effects of removing user fees across quartiles of household wealth, with increases of 5.4 facility deliveries per hundred live births (95% CI: 2.1, 8.8) among women in the poorest quartile and 6.8 per hundred live births (95% CI: 4.0, 9.7) for women in the richest quartile. However, our results suggest that educated women benefited more from removing user fees compared to women with no education. For women with at least some secondary education, the estimated effect was 8.6 facility deliveries per hundred live births (95% CI: 5.4, 11.9), but only 4.6 per hundred live births (95% CI: 2.2, 7.0) for women with no education (heterogeneity p-value = 0.04). Thus, while removing fees at the point of service increased facility deliveries across the socioeconomic gradient, it did not reduce inequalities defined by household wealth and may have contributed to a widening of educational inequalities. These findings emphasize the need for concerted efforts to address financial and other barriers that contribute to large and persistent socioeconomic inequalities in delivery care.
Water Systems, Sanitation, and Public Health Risks in Remote Communities: Inuit Resident Perspectives from the Canadian Arctic
Kiley Daley, Heather Castleden, Rob Jamieson, Chris Furgal, and Lorna Ell
Safe drinking water and wastewater sanitation are universally recognized as critical components of public health. It is well documented that a lack of access to these basic services results in millions of preventable deaths each year among vulnerable populations. Water and wastewater technologies and management practices are frequently tailored to local environmental conditions. Also important, but often overlooked in water management planning, are the social, cultural and economic contexts in which services are provided. The purpose of this qualitative case study was to identify and understand residents’ perceptions of the functionality of current water and wastewater sanitation systems in one vulnerable context, that of a remote Arctic Aboriginal community (Coral Harbour, Nunavut), and to identify potential future water related health risks. Semi-structured interviews were conducted with 28 Inuit residents and 9 key informants in 2011 and 2012. Findings indicate that the population’s rapid transition from a semi-nomadic hunting and gathering lifestyle to permanent settlements with municipally provided utilities is influencing present-day water usage patterns, public health perceptions, and the level of priority decision-makers place on water and wastewater management issues. Simultaneously environmental, social and cultural conditions conducive to increased human exposure to waterborne health risks were also found to exist and may be increasing in the settlements. While water and wastewater system design decisions are often based on best practices proven suitable in similar environmental conditions, this study reinforces the argument for inclusion of social, cultural, and economic variables in such decisions, particularly in remote and economically challenged contexts in Canada or elsewhere around the world. The results also indicate that the addition of qualitative data about water and wastewater systems users’ behaviours to technical knowledge of systems and operations can enhance the understanding of human–water interactions and be valuable in risk assessments and intervention development.
Moderators, Mediators, and Bidirectional Relationships in the International Classification of Functioning, Disability and Health (ICF) Framework: An Empirical Investigation Using a Longitudinal Design and Structural Equation Modeling (SEM)
Alexandra Rouquette, Elizabeth M. Badley, Bruno Falissard, Timothée Dub, Alain Leplege, and Joël Coste
The International Classification of Functioning, Disability and Health (ICF) published in 2001 describes the consequences of health conditions with three components of impairments in body structures or functions, activity limitations and participation restrictions. Two of the new features of the conceptual model were the possibility of feedback effects between each ICF component and the introduction of contextual factors conceptualized as moderators of the relationship between the components. The aim of this longitudinal study is to provide empirical evidence of these two kinds of effect. Structural equation modeling was used to analyze data from a French population–based cohort of 548 patients with knee osteoarthritis recruited between April 2007 and March 2009 and followed for three years. Indicators of the body structure and function, activity and participation components of the ICF were derived from self-administered standardized instruments. The measurement model revealed four separate factors for body structures impairments, body functions impairments, activity limitations and participation restrictions. The classic sequence from body impairments to participation restrictions through activity limitations was found at each assessment time. Longitudinal study of the ICF component relationships showed a feedback pathway indicating that the level of participation restrictions at baseline was predictive of activity limitations three years later. Finally, the moderating role of personal (age, sex, mental health, etc.) and environmental factors (family relationships, mobility device use, etc.) was investigated. Three contextual factors (sex, family relationships and walking stick use) were found to be moderators for the relationship between the body impairments and the activity limitations components. Mental health was found to be a mediating factor of the effect of activity limitations on participation restrictions.
Tracing Shadows: How Gendered Power Relations Shape the Impacts of Maternal Death on Living Children in Sub Saharan Africa
Alicia Ely Yamin, Junior Bazile, Lucia Knight, Mitike Molla, Emily Maistrellis, and Jennifer Leaning
Driven by the need to better understand the full and intergenerational toll of maternal mortality (MM), a mixed-methods study was conducted in four countries in sub-Saharan Africa to investigate the impacts of maternal death on families and children. The present analysis identifies gender as a fundamental driver not only of maternal, but also child health, through manifestations of gender inequity in household decision making, labor and caregiving, and social norms dictating the status of women. Focus group discussions were conducted with community members, and in depth qualitative interviews with key-informants and stakeholders, in Tanzania, Ethiopia, Malawi, and South Africa between April 2012 and October 2013. Findings highlight that socially constructed gender roles, which define mothers as caregivers and fathers as wage earners, and which limit women’s agency regarding childcare decisions, among other things, create considerable gaps when it comes to meeting child nutrition, education, and health care needs following a maternal death. Additionally, our findings show that maternal deaths have differential effects on boy and girl children, and exacerbate specific risks for girl children, including early marriage, early pregnancy, and school drop-out. To combat both MM, and to mitigate impacts on children, investment in health services interventions should be complemented by broader interventions regarding social protection, as well as aimed at shifting social norms and opportunity structures regarding gendered divisions of labor and power at household, community, and society levels.
Approaches to the organization and conduct of cancer research changed dramatically throughout the 20th century. Despite marked differences between the epidemiological approaches of the first half of the century and molecular techniques that gained dominance in the 1980s, prominent 20th-century researchers investigating the link between sexual activity and anogenital cancers continuously invoked the same 1842 treatise by Italian surgeon Domenico Rigoni-Stern, who is said to originate the problem of establishing a causal link between sex and cancer. In this article, I investigate 20th-century references to Rigoni-Stern as a case of a broader phenomenon: scientists situating their work through narratives of venerated ancestors, or originators. By explaining shifting versions of originator narratives in light of their authors’ cultural context and research practices, we can reimagine as meaningful cultural symbols the references that previous scholars have treated as specious rhetorical maneuvers. In this case, references to Rigoni-Stern provide an interpretive anchor for American scientists to construct continuity between their work and a diverse historical legacy of cancer research.
Working for the Public Health: Politics, Localism, and Epistemologies of Practice
Gemma Phillips and Judith Green
The recent move of public health back to English local government has reignited debates about the role of a medicalised public health profession. The explicit policy rationale for the move was that local government is the arena in which the social determinants of health can be addressed, and that public health specialists could provide neutral evidence to support action on these. However, if a discourse of ‘evidence-based’ policy is in principle (if not practice) relatively unproblematic within the health arena, within the more overtly politicised local government space, rather different policy imperatives come to the fore. Responding to calls for research on evidence in practice, this article draws on ethnographic data of local authorities in the first year of the reorganised public health function. Focusing on alcohol policy, we explore how decisions that affect public health are rationalised and enacted through discourses of localism, empiricism and holism. These frame policy outcomes as inevitably plural and contingent: a framing which sits uneasily with normative discourses of evidence-based policy. We argue that locating public health in local government necessitates a refocusing of how evidence for public health is conceptualised, to incorporate multiple, and political, understandings of health and wellbeing.
Re/creating Entrepreneurs of the Self: Discourses of Worker and Employee ‘Value’ and Current Vocational Rehabilitation Practices
Joanna Fadyl, Kathryn McPherson, and David Nicholls
Vocational rehabilitation for people experiencing work disability is a social practice often situated within health services, but the social and political drivers and effects of this practice are rarely critically analysed in health research or policy. In this study we used a Foucauldian theoretical perspective to analyse the ways in which current vocational rehabilitation practices in New Zealand re/produce notions of worker and employee ‘value’, and how different approaches to vocational rehabilitation deploy current discourses about value. We also consider the subject positions produced through these different approaches and the identities and actions they make possible for people experiencing work disability. The analysis showed that notions about the importance of worker and employee value in a job market are pervasive in vocational rehabilitation, and reflect wider societal discourses. However, the deployment of those discourses in different approaches to vocational rehabilitation practice are diverse, producing different opportunities and constraints for people experiencing disability. We argue that an examination of these various opportunities and constraints at the level of practice approaches is important, as considerable time and resources are allocated to developing solutions to help those who do not thrive in the current systems, yet we rarely critique the premises on which the systems are based.
This study is an attempt to describe an interactional strategy that psychiatrists use in making decisions for treatment in ongoing outpatient psychiatric consultations in Japan. Using conversation analysis (CA), we compare sequential environments where psychiatrists use two turn designs for proposing a treatment: the inclusive ‘we’ form (for example ‘let’s’ and ‘how about’) and the declarative evaluation (for example, ‘it might be better’). The inclusive ‘we’ form is used to create the moment for decision when the sequential environment is ready for decision-making. The declarative evaluation is used to propose a treatment cautiously when the sequential environment is not yet ready for decision-making. Taken together, psychiatrists fit the turn design of a proposal to its sequential environment in such a way as to display their attention to the patients’ perspectives. In conclusion, we argue that our finding provides further evidence for the claim made by a growing body of CA research that, unlike the traditional sociological understanding of doctor–patient interaction, doctors do not simply impose their perspectives upon the patients but steer medical encounters to their preferred direction by orienting to the patients’ perspectives.
Pastoral Power and Gynaecological Examinations: A Foucauldian Critique of Clinician Accounts of Patient-Centred Consent
Catherine Cook and Margaret Brunton
Invasive non-sedated clinical procedures such as gynaecological examinations are normalised; however, there is limited research highlighting the relational and technical skills required for clinicians to ensure patients’ continued consent. A considerable body of research emphasises that women dislike examinations, leading to their non-compliance or a delayed follow up for gynaecological and sexual health problems. However, medical research focuses on ‘problem’ women; the role of clinicians receives limited appraisal. This article draws on interviews with sexual health clinicians in New Zealand, from metropolitan and provincial locations. The gynaecological care of women in New Zealand attained international notoriety with the 1988 publication of Judge Cartwright’s inquiry into ethical shortcomings in cervical cancer research at the National Women’s Hospital. Judge Cartwright’s recommendations included patient-centred care in order to ensure informed consent had been received for clinical procedures and research participation. This article’s critical analysis is that, although clinicians’ language draws on humanistic notions of patient-centredness, Foucault’s notion of secularised pastoral power enables a more nuanced appreciation of the ethical work undertaken by clinicians when carrying out speculum examinations. The analysis highlights both the web of power relations present during examination practices and the strategies clinicians use to negotiate women’s continued consent; which is significant because consent is usually conceptualised as an event, rather than an unfolding, unstable process.
Engineering Behaviour Change in an Epidemic: The Epistemology of NIH-Funded HIV Prevention Science
Adam Green and Kat Kolar
Social scientific and public health literature on National Institutes of Health-funded HIV behavioural prevention science often assumes that this body of work has a strong biomedical epistemological orientation. We explore this assumption by conducting a systematic content analysis of all NIH-funded HIV behavioural prevention grants for men who have sex with men between 1989 and 2012. We find that while intervention research strongly favours a biomedical orientation, research into the antecedents of HIV risk practices favours a sociological, interpretive and structural orientation. Thus, with respect to NIH-funded HIV prevention science, there exists a major disjunct in the guiding epistemological orientations of how scientists understand HIV risk, on the one hand, and how they engineer behaviour change in behavioural interventions, on the other. Building on the extant literature, we suggest that the cause of this disjunct is probably attributable not to an NIH-wide positivist orientation, but to the specific standards of evidence used to adjudicate HIV intervention grant awards, including randomised controlled trials and other quantitative measures of intervention efficacy.
Transplantation as an Abstract Good: Practising Deliberate Ignorance in Deceased Organ Donation in Denmark
Klaus Hoeyer, Anja M.B. Jensen, and Maria Olejaz
This article investigates valuations of organ transfers that are currently seen as legitimising increasingly aggressive procurement methods in Denmark. Based on interviews with registered donors and the intensive care unit staff responsible for managing organ donor patients we identify three types of valuation: the needs of recipients, respect for donors’ autonomy and support of donors’ relatives in their grieving process. Sometimes these modes of valuation conflict with each other, and we show how our informants then respond with a form of deliberate ignorance. We suggest that deliberate ignorance has a more general salience in the organ transplant field by way of facilitating a perception of organ transplantation as an abstract moral good rather than a specific good for specific people. Furthermore, we suggest that multiple forms of ignorance sustain each other: a desire for ignorance with respect to the prioritisation of recipients sustains pressure for more organs; this pressure necessitates more aggressive measures in organ procurement and these measures increase the need for ignorance in relation to the actual procedures as well as the actual recipients. These attempts to avoid knowledge are in remarkable contrast to the otherwise widespread policy emphasis on education and information in this medical domain.
Why do Women Seek Ultrasound Scans from Commercial Providers During Pregnancy?
Julie Roberts, Frances E. Griffiths, Alice Verran, and Catherine Ayre
The commercial availability of ultrasound scans for pregnant women has been controversial yet little is known about why women make use of such services. This article reports on semi-structured interviews with women in the UK who have booked a commercial scan, focusing on the reasons women gave for booking commercially provided ultrasound during a low-risk pregnancy. Participants’ reasons for booking a scan are presented in five categories: finding out the sex of the foetus; reassurance; seeing the baby; acquiring keepsakes and facilitating bonding. Our analysis demonstrates that women’s reasons for booking commercial scans are often multiple and are shaped by experiences of antenatal care as well as powerful cultural discourses related to ‘good’ parenting and the use of technology in pregnancy. Sociological and public debate about the availability of commercial ultrasound and its social and personal impacts should consider the wider sociocultural context that structures women’s choices to make use of such services.
Taboo and the Different Death? Perceptions of Those Bereaved by Suicide or Other Traumatic Death
Alison Chapple, Sue Ziebland, and Keith Hawton
Views differ on how far the subject of death has ever been taboo in Western Society. Walter (1991) criticised the way the ‘taboo thesis’ has been presented, arguing that it has often been ‘grossly overdrawn and lacking in subtlety’. Research suggests that suicide and other traumatic death may be particularly difficult for people to talk about or even acknowledge. We interviewed 80 people bereaved due to suicide, or other traumatic death and used interpretative thematic analysis to consider whether the ‘death taboo’ is evident in these bereavement narratives. People referred to suicide as a different, even stigmatised, death but we also found that those bereaved through other traumatic death felt that their reactions had to be contained and relatively silent. The exception was those bereaved through terrorism or train crash, who were encouraged to grieve openly and angrily: reactions to deaths which are seen as ‘private troubles’ differ from reactions to deaths which are seen as ‘public issues’. Using a symbolic interactionist approach we conclude that the shock and suddenness of the death is tied up both with the circumstances of the death (suicide, murder, accident, terrorism) and the attendant consequences for the social acceptance of public displays of mourning.
Taking Care of Themselves: How Long-Term Injection Drug Users Remain HIV and Hepatitis C Free
Peter Meylakhs, Samuel R. Friedman, Pedro Mateu-Gelabert, Milagros Sandoval, and Nastia Meylakhs
Though prevalence of HIV and especially Hepatitis C is high among people who inject drugs (PWID) in New York, about a third of those who have injected for 8–15 years have avoided infection by either virus despite their long-term drug use. Based on life history interviews with 35 long-term PWID in New York, this article seeks to show how successful integration and performance of various drug using and non-drug using roles may have contributed to some of these PWID’s staying uninfected with either virus. We argue that analysis of non-risk related aspects of the lives of the risk-takers (PWID) is very important in understanding their risk-taking behaviour and its outcomes (infection statuses). Drawing on work-related, social and institutional resources, our double-negative informants underwent both periods of stability and turmoil without getting infected.