In the Journals

In the Journals – January 2017

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu. The objectives of the study were to understand sources and extent of health knowledge, diabetes explanatory models, and the impact of illness on individual, social, and familial roles. Several cultural, socioeconomic, and political factors appear to contribute to diabetes in rural regions of India, highlighting the need to address structural inequities and empower individuals to pursue health and well-being on their own terms.

Indigenous Healing Knowledge and Infertility in Indonesia: Learning about Cultural Safety from Sasak Midwives
Linda Rae Bennett

In this article I demonstrate what can be learned from the indigenous healing knowledge and practices of traditional Sasak midwives on Lombok island in eastern Indonesia. I focus on the treatment of infertility, contrasting the differential experiences of Sasak women when they consult traditional midwives and biomedical doctors. Women’s and midwives’ perspectives provide critical insight into how cultural safety is both constituted and compromised in the context of reproductive health care. Core components of cultural safety embedded in the practices of traditional midwives include the treatment of women as embodied subjects rather than objectified bodies, and privileging physical contact as a healing modality. Cultural safety also encompasses respect for women’s privacy and bodily dignity, as well as two-way and narrative communication styles. Local understandings of cultural safety have great potential to improve the routine practices of doctors, particularly in relation to doctor–patient communication and protocols for conducting pelvic exams.

Local Biologies, Leaky Things, and the Chemical Infrastructure of Global Health
Alex M. Nading

This article examines how two chemical substances are woven into the infrastructure of global health as well as into the social lives of health workers in urban Nicaragua. One chemical is temephos, an organophosphate used to control mosquitoes. The other is chlorine-based products, which are used to disinfect surfaces and water. While global health projects tend to treat these substances as stable objects, there are three ways in which they might be understood as leaky things, implicated in fluid social interactions. First, global health chemicals are tracked through rigid accounting, but because of numerical leakages, they become vehicles for fashioning new forms of concern. Second, chemicals leak structurally: They can be dissolved and reproduced at a molecular level, although that dissolution is never absolute, and that reproduction is not everywhere the same. Third, chemicals leak in a sensory fashion. Sensory interactions with chemicals produce an entanglement of knowledge about bodies and environments.

Discourses on the Toxic Effects of Internal Chemical Contamination in Catalonia, Spain
Cristina Larrea-Killinger, Araceli Muñoz, Jaume Mascaró, Eva Zafra & Miquel Porta

Human exposure to and contamination by environmental toxic compounds generates discourses and practices that merit greater attention. In this article, we assess internal chemical contamination and the risk of toxic effects as an experience related to the production of meaning in everyday life. Drawing on the analysis of semantic networks of narratives from semi-structured interviews conducted with 43 informants in Catalonia, Spain, we consider participants’ perceptions of the health risks of toxic compounds, including social discourses on exposure, toxicity, and internal chemical contamination, and on responsibilities, consequences, and proposed strategies for controlling toxic compounds. Informants’ narratives on the relationships between nature and nurture suggest that they no longer perceive rigid boundaries separating the human body from the external environment and its chemical pollutants.

Blaming Machismo: How the Social Imaginary is Failing Men with HIV in Santa Cruz, Bolivia
Carina Heckert

Drawing from an ethnography of HIV care in Santa Cruz, Bolivia, in this article I explore how the social imaginary surrounding gender relations shapes men’s experiences of seeking care for and living with HIV. Popular understandings of gender relations, which draw heavily on the machismo concept, intersect with a global health master narrative that frames women as victims in the AIDS epidemic in a way that generates a strong sentiment of blaming machismo within local HIV/AIDS-related services. Statements such as, “it’s because of machismo” are used to explain away epidemiological trends. Participant observation in the context of HIV care, coupled with illness narrative interviews, illuminate how blaming machismo shapes men’s experiences of care and the ways that they feel excluded from various forms of support. Thus, the illness experiences of men with HIV problematize the machismo concept and how it is drawn upon in the context of care.

There is also a themed section of Medical Anthropology titled “Between Biopolitical Governance and Care: Rethinking Health, Self, and Social Welfare in East Asia.” See the abstracts here.

Health and Place

Negotiating and valuing spaces: The discourse of space and ‘home’ in care homes
Andrea Kenkmann, Fiona Poland, Diane Burns, Paula Hyde, Anne Killett 

This paper examines how space in care homes is experienced and negotiated by people who live and work in them. The analysis of qualitative data of five in-depth case studies of care homes in England revealed three key ways in which space is negotiated: a) the way in which values affect interactions inside versus outside the care home environment, b) the negotiation of boundaries and domains within the homes, and c) the sense of being at ‘home’. The paper illuminates how the design of the buildings and organisational factors can reinforce or bridge dichotomies between inside and outside spaces. Residents’ abilities to re-negotiate boundaries, domains and communal spaces within homes are shown to be affected by organisational factors such as priorities of staff members. Despite ‘home’ being a common discourse, the spaces within care homes were often organised, ordered and experienced as two distinct, co-present worlds: the dwelling place of residents and the workplace of staff.

Managing mosquito spaces: Citizen self-governance of disease vectors in a desert landscape
Nicolena vonHedemann, Paul Robbins, Melinda K. Butterworth, Katheryn Landau, Cory W. Morin

Public health agencies’ strategies to control disease vectors have increasingly included “soft” mosquito management programs that depend on citizen education and changing homeowner behaviors. In an effort to understand public responses to such campaigns, this research assesses the case of Tucson, Arizona, where West Nile virus presents a serious health risk and where management efforts have focused on public responsibility for mosquito control. Using surveys, interviews, and focus groups, we conclude that citizens have internalized responsibilities for mosquito management but also expect public management of parks and waterways while tending to reject the state’s interference with privately owned parcels. Resident preferences for individualized mosquito management hinge on the belief that mosquito-borne diseases are not a large threat, a pervasive distrust of state management, and a fear of the assumed use of aerial pesticides by state managers. Opinions on who is responsible for mosquitoes hinge on both perceptions of mosquito ecology and territorial boundaries, with implications for future disease outbreaks.


The uses and implications of standards in general practice consultations (open access)
Maria Laura Lippert, Susanne Reventlow, Marius Brostrøm Kousgaard

Quality standards play an increasingly important role in primary care through their inscription in various technologies for improving professional practice. While ‘hard’ biomedical standards have been the most common and debated, current quality development initiatives increasingly seek to include standards for the ‘softer’ aspects of care. This article explores the consequences of both kinds of quality standards for chronic care consultations. The article presents findings from an explorative qualitative field study in Danish general practice where a standardized technology for quality development has been introduced. Data from semi-structured interviews and observations among 17 general practitioners were analysed using an iterative analytical approach, which served to identify important variations in the uses and impacts of the technology. The most pronounced impact of the technology was observed among general practitioners who strictly adhered to the procedural standards on the interactional aspects of care. Thus, when allowed to function as an overall frame for consultations, those standards supported adherence to general recommendations regarding which elements to be included in chronic disease consultations. However, at the same time, adherence to those standards was observed to narrow the focus of doctor–patient dialogues and to divert general practitioners’ attention from patients’ personal concerns. Similar consequences of quality standards have previously been framed as manifestations of an inherent conflict between principles of patient-centredness and formal biomedical quality standards. However, this study suggests that standards on the ‘softer’ aspects of care may just as well interfere with a clinical approach relying on situated and attentive interactions with patients.

Treating the binge or the (fat) body? Representations of fatness in a gold standard psychological treatment manual for binge eating disorder (open access)
Amy Brown-Bowers, Ashley Ward, Nicole Cormier

This article reports the results of a Foucauldian-informed discourse analysis exploring representations of fatness embedded within an empirically based psychological treatment manual for binge eating disorder, a condition characterized by overvaluation of weight and shape. Analyses indicate that the manual prioritizes weight loss with relatively less emphasis placed on treating the diagnostic symptoms and underlying mechanisms of binge eating disorder. We raise critical concerns about these observations and link our findings to mainstream psychology’s adoption of the medical framing of fatness as obesity within the “gold standard” approach to intervention. We recommend that psychology as a discipline abandons the weight loss imperative associated with binge eating disorder and fat bodies. We recommend that practitioners locate the problem of fat shame in society as opposed to the individual person’s body and provide individuals with tools to identify and resist fat stigma and oppression, rather than provide them with tools to reshape their bodies.

Understanding the health of lorry drivers in context: A critical discourse analysis (open access)
Nick Caddick, Veronica Varela-Mato, Myra A Nimmo, Stacey Clemes, Tom Yates, James A King

This article moves beyond previous attempts to understand health problems in the lives of professional lorry drivers by placing the study of drivers’ health in a wider social and cultural context. A combination of methods including focus groups, interviews and observations were used to collect data from a group of 24 lorry drivers working at a large transport company in the United Kingdom. Employing a critical discourse analysis, we identified the dominant discourses and subject positions shaping the formation of drivers’ health and lifestyle choices. This analysis was systematically combined with an exploration of the gendered ways in which an almost exclusively male workforce talked about health. Findings revealed that drivers were constituted within a neoliberal economic discourse, which is reflective of the broader social structure, and which partly restricted drivers’ opportunities for healthy living. Concurrently, drivers adopted the subject position of ‘average man’ as a way of defending their personal and masculine status in regards to health and to justify jettisoning approaches to healthy living that were deemed too extreme or irrational in the face of the constraints of their working lives. Suggestions for driver health promotion include refocusing on the social and cultural – rather than individual – underpinnings of driver health issues and a move away from moralistic approaches to health promotion.

Using liminality to understand mothers’ experiences of long-term breastfeeding: ‘Betwixt and between’, and ‘matter out of place’ (open access)
Sally Dowling, David Pontin

Breastmilk is widely considered as the optimum nutrition source for babies and an important factor in both improving public health and reducing health inequalities. Current international/national policy supports long-term breastfeeding. UK breastfeeding initiation rates are high but rapidly decline, and the numbers breastfeeding in the second year and beyond are unknown. This study used the concept of liminality to explore the experiences of a group of women breastfeeding long-term in the United Kingdom, building on Mahon-Daly and Andrews. Over 80 breastfeeding women were included within the study, which used micro-ethnographic methods (participant observation in breastfeeding support groups, face-to-face interviews and online asynchronous interviews via email). Findings about women’s experiences are congruent with the existing literature, although it is mostly dated and from outside the United Kingdom. Liminality was found to be useful in providing insight into women’s experiences of long-term breastfeeding in relation to both time and place. Understanding women’s experience of breastfeeding beyond current usual norms can be used to inform work with breastfeeding mothers and to encourage more women to breastfeed for longer.

What led health professionals to study and practise acupuncture in Spain? (open access)
Esther García-Escamilla, Beatriz Rodríguez-Martín Vicente Martínez-Vizcaíno

Acupuncture is the most widespread practice of Traditional Chinese Medicine in the Western world. This confers special relevance to the experiences and circumstances of life to explain the health-illness process. Recent research has reported an increasing interest of Western health professionals in its practice. The aim of this study was to map and understand the motivation of health professionals to study and practise acupuncture in Spain. A total of 27 in-depth interviews were conducted with Spanish health professionals trained in acupuncture. Participants were selected following a theoretical sampling. Grounded theory dimensional analysis guided this research in order to obtain a theoretical explanation of the motivations of health professionals to study and practise acupuncture. Their motivations were focused on six categories: humanisation of medicine, acquiring additional therapeutic resources, efficacy and far-reaching healing potential of acupuncture, attraction to acupuncture philosophy, external influences (other professionals and relevant sources of information) and work-related motivation. Our results show that health professionals were attracted to acupuncture because of the Traditional Chinese Medicine worldview (a philosophical approach) and therapeutic benefits of acupuncture (a practical approach). Acupuncture offers the possibility to improve the healthcare assistance by transcending the reification of human beings resulting from the pre-eminence of the biomedical paradigm and facilitating cooperation between disciplines. Participants consider acupuncture as a complete medicine, not merely as a technique, and highlight the importance of traditional Chinese concepts to practise it.

Critical Public Health 

Embodied, clinical and pharmaceutical uncertainty: people with HIV anticipate the feasibility of HIV treatment as prevention (TasP)
Peter Keogh

Evidence of the efficacy of HIV treatment as prevention (TasP) precipitated a highly optimistic global response and a radical redesign of HIV policy. Sociologists and others have framed TasP within promissory or enterprising discourses which require HIV prevention planners and people with HIV to engage in anticipatory assessments of risk and uncertainty. In 2013, I conducted focus groups with people with HIV in London, UK, to explore their understandings and anticipations of TasP. An environment of economic constraint obliged participants to triage clinical need and presentation, and they expressed scepticism about the sustainability of pharmaceutical investment in treatment innovation. These perceptions were informed by an embodied knowledge of HIV which implies a construction of health as a form of capital that is finite and must be conserved. This is contrasted with a biomedical construction of health as a form of capital that can be exponentially generated through investment. The imperative of conservation entailed by people with HIV’s anticipations contrasts with the speculative economy of biomedical production entailed in planners’ anticipations of TasP. Rather than researching ‘TasP acceptability’ and considering whether people with HIV’s behaviours constitute an obstacle to TasP’s effectiveness, we should recognise that people with HIV are already involved in shaping what TasP is, what it will be and ultimately how it ‘works’.

Young bisexual women’s perspectives on the relationship between bisexual stigma, mental health, and sexual health: a qualitative study
Corey E. Flanders, Cheryl Dobinson & Carmen Logie

Young bisexual women experience worse mental and sexual health outcomes in comparison to their heterosexual and lesbian peers. These disparities are associated with stigma and devaluation of bisexual identities. The current paper addresses a community-based focus group project in which participants discussed bisexual stigma in regard to bisexual erasure and other stereotypes. Specifically, participants detailed experiences of feeling pressured to provide evidence of their bisexual identity, modifying their relationship or sexual behavior to conform to these expectations, as well as feeling excluded from queer community. Further, participants discussed how these experiences were related to decreased mental and sexual health. Future research should further investigate the relationship between bisexual stigma, pressure to provide evidence of bisexual identity, and negative mental and sexual health outcomes.

‘I’m not sure if they speak to everyone about this option’: analyzing disparate access to and use of genetic health services in the US from the perspective of genetic counselors
Susan Markens

Much research has documented disparities in access to and uses of health care services in the US. With the rise of genomic medicine and its use of complex technology, some scholars are concerned that such inequalities of health care will not only continue but also grow. Drawing on 27 semi-structured interviews with front-line genetic workers – master’s-level genetic counselors – this qualitative study explores the factors they view as contributing to variable uptake of genetic health services among US population groups. Patient-centered factors such as attitudes, norms, and education were perceived by some genetic counselors as explanations for disparities in uptake of genetic services. However, genetic counselors more frequently discussed structural and institutional factors (e.g. cost, insurance, type and location of hospital/clinic, and/or staffing issues) when accounting for different rates of usage of genetic services among populations. The prominence of structural impediments to access found in genetic counselors’ narratives about population differences in the uptake of genetic services suggests that genetic medicine could exacerbate rather than ameliorate health disparities in the US.

A Feminist Quality Appraisal Tool: exposing gender bias and gender inequities in health research
Tessa Morgan, Lisa Ann Williams & Merryn Gott

Quality appraisal tools used in systematic reviews to evaluate health literature do not adequately address issues related to gender. This oversight is significant because disparities between genders have been identified as a major health equity concern, and systematic reviews are regarded as a powerful means for informing policy that could redress gender inequities. In this paper, we present our Feminist Quality Appraisal Tool that offers researchers a template to undertake a comprehensive gendered analysis of studies they review. Informed by a feminist perspective, the tool addresses issues of power, gender and inequity, thereby giving researchers the means to interrogate the scientific rigour of systematic reviews that focus on gender. Specifically, our tool outlines ways gender can be critically examined in terms of study design, data collection, analysis, discussion and recommendations. We argue that this tool has the potential to improve the provision of public health by providing solid understandings and critical reflections on the reasons why women continue to face barriers in their access to optimal health care.

Social Science & Medicine

Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough
Melody E. Morton Ninomiya, Nathaniel J. Pollock

Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas. We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the ‘real-world’ context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.

Two approaches, one problem: Cultural constructions of type II diabetes in an indigenous community in Yucatán, Mexico
Sarah M. Frank, T. Elizabeth Durden

The emerging epidemic of obesity and type II diabetes in Mexico has recently propelled the nation into the public health spotlight. In the state of Yucatán, the experience of diabetes is greatly impacted by two cultural constructions of disease. In this setting, elements of Yucatec Mayan health practices as well as the biomedical model affect the approach to type II diabetes. Both frameworks offer unique understandings of the etiology of diabetes and recommend different ways to manage the condition. Based on in-depth and semi-structured interviews with both community members and clinicians, the present study seeks to understand how diabetes is understood and treated in indigenous settings in rural Yucatán. We explore the context in which community members navigate between locally available healthcare options, choose one over the other, or incorporate strategies from both into their diabetes care regimens. The tension between indigenous community members and their biomedical healthcare providers, the changing food environment of this community, and the persistence of traditional gender constructions affect the management of type II diabetes and its associated symptoms.

Public health and public trust: Survey evidence from the Ebola Virus Disease epidemic in Liberia
Robert A. Blair, Benjamin S. Morse, Lily L. Tsai

Trust in government has long been viewed as an important determinant of citizens’ compliance with public health policies, especially in times of crisis. Yet evidence on this relationship remains scarce, particularly in the developing world. We use results from a representative survey conducted during the 2014–15 Ebola Virus Disease (EVD) epidemic in Monrovia, Liberia to assess the relationship between trust in government and compliance with EVD control interventions. We find that respondents who expressed low trust in government were much less likely to take precautions against EVD in their homes, or to abide by government-mandated social distancing mechanisms designed to contain the spread of the virus. They were also much less likely to support potentially contentious control policies, such as “safe burial” of EVD-infected bodies. Contrary to stereotypes, we find no evidence that respondents who distrusted government were any more or less likely to understand EVD’s symptoms and transmission pathways. While only correlational, these results suggest that respondents who refused to comply may have done so not because they failed to understand how EVD is transmitted, but rather because they did not trust the capacity or integrity of government institutions to recommend precautions and implement policies to slow EVD’s spread. We also find that respondents who experienced hardships during the epidemic expressed less trust in government than those who did not, suggesting the possibility of a vicious cycle between distrust, non-compliance, hardships and further distrust. Finally, we find that respondents who trusted international non-governmental organizations (INGOs) were no more or less likely to support or comply with EVD control policies, suggesting that while INGOs can contribute in indispensable ways to crisis response, they cannot substitute for government institutions in the eyes of citizens. We conclude by discussing the implications of our findings for future public health crises.

Separating, replacing, intersecting: The influence of context on the construction of the medical-nursing boundary
Elisa Giulia Liberati

The distribution of work, knowledge, and responsibilities between doctors and nurses is a longstanding object of interest for medical sociologists. Whereas the strategies through which nurses and doctors construct their professional boundary have been thoroughly examined, little is known about why the regulation of the medical-nursing boundary varies across care settings. In the article, I argue that this gap in knowledge can be attributed to insufficient examination of the ‘negotiation context’, namely the features of the social and organisational environment that directly affect doctor-nurse boundary negotiations. Adopting a negotiated order perspective, and drawing data from a hospital ethnography, the article describes the different ways of constructing the medical-nursing boundary (separating, replacing, and intersecting) which were observed in three different care settings (a neurology ward, a neurosurgical ward, and an intensive care unit). Constant comparison of the observed interactional patterns led to the identification of three factors that significantly affected the construction of the medical-nursing boundary, specifically: patients’ state of awareness, the type of clinical approach adopted by nurses and doctors, and the level of acuity on the ward. The article advances our knowledge of the medical-nursing boundary by shedding light on its flexible and contextual nature and by adding further nuance to the boundary-blurring/boundary-reinforcing dichotomy. New features of the ‘negotiation context’ are identified that enable more convincing explanations of why the medical-nursing boundary varies across care settings. Finally, the study advances the negotiated order theory by offering a framework for considering the structural differences that shape local negotiations.

Gifts and influence: Conflict of interest policies and prescribing of psychotropic medications in the United States
Marissa King, Peter S. Bearman

The pharmaceutical industry spends roughly 15 billion dollars annually on detailing – providing gifts, information, samples, trips, honoraria and other inducements – to physicians in order to encourage them to prescribe their drugs. In response, several states in the United States adopted policies that restrict detailing. Some states banned gifts from pharmaceutical companies to doctors, other states simply required physicians to disclose the gifts they receive, while most states allowed unrestricted detailing. We exploit this geographic variation to examine the relationship between gift regulation and the diffusion of four newly marketed medications. Using a dataset that captures 189 million psychotropic prescriptions written between 2005 and 2009, we find that uptake of new costly medications was significantly lower in states with marketing regulation than in areas that allowed unrestricted pharmaceutical marketing. In states with gift bans, we observed reductions in market shares ranging from 39% to 83%. Policies banning or restricting gifts were associated with the largest reductions in uptake. Disclosure policies were associated with a significantly smaller reduction in prescribing than gift bans and gift restrictions. In states that ban gift-giving, peer influence substituted for pharmaceutical detailing when a relatively beneficial drug came to market and provided a less biased channel for physicians to learn about new medications. Our work suggests that policies banning or limiting gifts from pharmaceutical representatives to doctors are likely to be more effective than disclosure policies alone.

Requests for cesarean deliveries: The politics of labor pain and pain relief in Shanghai, China
Eileen Wang

Cesarean section rates have risen dramatically in China within the past 25 years, particularly driven by non-medical factors and maternal requests. One major reason women request cesareans is the fear of labor pain, in a country where a minority of women are given any form of pain relief during labor. Drawing upon ethnographic fieldwork and in-depth interviews with 26 postpartum women and 8 providers at a Shanghai district hospital in June and July of 2015, this article elucidates how perceptions of labor pain and the environment of pain relief constructs the cesarean on maternal request. In particular, many women feared labor pain and, in a context without effective pharmacological pain relief or social support during labor, they came to view cesarean sections as a way to negotiate their labor pain. In some cases, women would request cesarean sections during labor as an expression of their pain and a call for a response to their suffering. However, physicians, under recent state policy, deny such requests, particularly as they do not view pain as a reasonable indication for a cesarean birth. This disconnect leads to a mismatch in goals for the experience of birth. To reduce unnecessary C-sections, policy makers should instead address the lack of pain relief during childbirth and develop other means of improving the childbirth experience that may relieve maternal anxiety, such as allowing family members to support the laboring woman and integrating a midwifery model for low-risk births within China’s maternal-services system.

“Not there yet”: Examining community support from the perspective of people with dementia and their partners in care
R.V. Herron, M.W. Rosenberg

People with dementia can live meaningful and engaged lives with the appropriate social and physical supports in place. There has been relatively little research, however, on the experiences and desires of people with dementia themselves as they negotiate informal and formal support in rural and small town settings. In this article, we draw on semi-structured interviews with 46 community-dwelling people with dementia and 43 partners in care in rural Ontario, Canada to examine how people with dementia relate to and within their communities as well as their perceptions of community support services. We identify the continued contributions of people with dementia to their own care and the care of others as well as common social, cultural, and organizational factors related to delayed service use and refusal to use particular services. We argue that care is “not there yet” for people in the earlier stages of dementia and that more attention needs to be paid to what people with dementia can offer their communities as well as the role of culture and gender in developing support. Our findings make an important contribution to understanding the experience of dementia in rural and small town Canada, which is relevant to rural healthcare and community support in other industrialized countries.

Sociology of Health & Illness

Family social capital and health – a systematic review and redirection (open access)
Elena Carrillo Alvarez, Ichiro Kawachi, Jordi Riera Romani

The level (or scale) at which social capital can be conceptualised and measured ranges potentially from the macro-level (regional or country level), to the meso-level (neighbourhoods, workplaces, schools), down to the individual level. However, one glaring gap in the conceptualisation of social capital within the empirical literature has been the level of the family. Our aim in this review is to examine the family as the ‘missing level’ in studies on social capital and health. To do so, we conducted a systematic review on the use and measurement of this notion in the health literature, with the final intention of articulating a direction for future research in the field. Our findings are consistent with the notion that family social capital is multidimensional and that its components have distinct effects on health outcomes. Further investigation is needed to understand the mechanisms through which family social capital is related to health, as well as determining the most valid ways to measure family social capital.

Among friends: a qualitative exploration of the role of peers in young people’s alcohol use using Bourdieu’s concepts of habitus, field and capital (open access)
Georgie J. MacArthur, Nina Jacob, Pandora Pound, Matthew Hickman, Rona Campbell

Drinking is viewed by young people as a predominantly social activity which provides an opportunity for entertainment and bonding with friends. Using Bourdieu’s concepts of habitus, field and capital, this article explores young people’s attitudes and beliefs around alcohol use, influences on behaviour, and the role of peers, with a view to informing the development of preventive interventions. Semi-structured interviews were conducted with 28 young people aged 18–20 in the south west of England. We describe how friends were integral in drinking experiences, and drinking with friends was equated with fun and enjoyment. In this way, the desire for social and symbolic capital appeared to be a key motivator for adolescent drinking. Critically, however, wider cultural norms played the predominant role in shaping behaviour, via the internalisation of widely accepted practice and the subsequent externalisation of norms through the habitus. Applying Bourdieu’s theory suggests that population-level interventions that regulate alcohol consumption, and thus disrupt the field, are likely to facilitate behaviour change among young people by driving a response in habitus.

Determinants of dietary compliance among Italian children: disentangling the effect of social origins using Bourdieu’s cultural capital theory (open access)
Filippo Oncini, Raffaele Guetto

Making use of Bourdieu’s threefold conceptualisation of cultural capital, this paper examines and disentangles the association between social origins and children’s food consumption. The aim of the work is twofold. Using data from the Multipurpose survey on daily life conducted by Istat (2009–2012), we first show that children’s compliance with dietary advice is indeed influenced by their social origins, but more so in terms of familial cultural resources than economic ones. All types of cultural capital enhance the quality of children’s nutrition. Second, we concentrate on the role of the school canteen as a child-centred investment strategy intended to reduce health inequalities by providing a wholesome lunch for all children. Although the school meal effectively improves the degree of dietary compliance, the results indicate that this public service is less often used by children from lower social origins. Moreover, we do not find any equalising effect of the school meal on the diets of disadvantaged children. These findings are discussed in light of future research on sociology of health stratification and health promotion programmes.

‘Good’ patient/‘bad’ patient: clinical learning and the entrenching of inequality (open access)
Eeva Sointu

This article develops sociological understanding of the reproduction of inequality in medicine. The material is drawn from a longitudinal study of student experiences of clinical learning that entailed 72 qualitative in-depth interviews with 27 medical students from five medical schools in the USA. To highlight the subtle, yet powerful, ways in which inequality gets entrenched, this article analyses ideas of the ‘good’ and the ‘bad’ patient. Bad patients question not only biomedical knowledge but also medical students’ commitment to helping people. Good patients engage with medical students in a manner that upholds biomedical knowledge and enables students to assume the role of the healer and the expert. At the same time, good patients possess cultural skills that align with those of medical practitioners. This alignment is, furthermore, central to definitions of the good patient. Distinctions drawn between good and bad patients thus both embody as well as enforce social inequality. The subtle reproduction of inequality is, however, difficult to discern because judgements about patients entwine with emotion.

The changing body work of abortion: a qualitative study of the experiences of health professionals (open access)
Carrie Purcell, Sharon Cameron, Julia Lawton, Anna Glasier, Jeni Harden

‘Body work’ has emerged at the nexus of sociologies of work and bodies as a means of conceptualising work focusing on the bodies of others. This article utilises this analytical tool in the context of contemporary abortion work. Abortion provision in Britain has seen significant change in the last 25 years, paralleling developments in medical methods, and the option for women under nine weeks’ gestation to complete the abortion at home. These shifts raise questions around how abortion work is experienced by those who do it. We apply the conceptual lens of body work to data drawn from in-depth interviews with 37 health professionals involved in abortion provision, to draw out the character, constraints and challenges of contemporary abortion work. We explore three key themes: the instrumental role of emotional labour in facilitating body work; the temporality of abortion work; and bodily proximity, co-presence and changes in provision. By drawing on the conceptual frame of body work, we illuminate the dynamics of contemporary abortion work in Britain and, by introducing the idea of ‘body work-by-proxy’, highlight ways in which this context can be used to expand the conceptual boundaries of body work.

Disentangling patient and public involvement in healthcare decisions: why the difference matters (open access)
Mio Fredriksson, Jonathan Q. Tritter

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.

From medicalisation to riskisation: governing early childhood development (open access)
Fan-Tzu Tseng

This study investigates the transformation of the regime of governing child developmental conditions in Taiwan. With the shift from a medicalised regime of disabilities to a riskised regime of developmental delays, early childhood development has become the primary focus of governance. Drawing upon a multi-sited ethnography to follow the process by which the ideas and practices of early intervention are imported and adapted to local conditions, I elucidate how and why the new subject, that is, children with developmental risks and their families, emerged with the concomitant re-configuration of governance. By using three riskisation strategies, namely, the truth claim of prevalence rate of developmental delays, mass screening with standardised instruments, and identification of risky families, child development is problematised collectively and surveilled individually. Within this new regime, every young child is no longer considered either normal or disabled but is rather located within a developmental risk continuum and subject to relentless medical and social interventions. While ‘returning to normal’ becomes the predominant goal of early intervention for developmentally delayed children, disabilities are increasingly enacted negatively and considered embodying an undesirable state of being. These changing delimitations and subsequent interventions have profoundly reshaped our understanding of the child, normality and disability.

How differences matter: tracing diversity practices in obesity treatment and health promotion (open access)
Ulrike Felt, Kay Felder, Michael Penkler

Diversity has become a buzzword in medical care, denoting a re-evaluation of what it means to attend to differences among human bodies and lives. Questions about what types of differences matter and how they should be defined have become important normative and analytical challenges. Drawing on two case studies, we show how differences between patients and patient-collectives are not simply waiting to be recognised and addressed but also enacted within situated healthcare practices. Although concerns with diversity are present in both cases, they take different forms. In a Viennese health–promotion project for obese clients, care practices are both based on and reproduce large-scale categories that divide the population into distinct subgroups with specific needs. Conversely, in an outpatient clinic for bariatric surgery patients, a technical fix-oriented procedure leads to concerns over diversity becoming an add-on realised by tending to each patient’s idiosyncrasies and personal stories. By tracing the practices of diversity and the tensions they produce, we show how classifications and understandings of human difference are based on infrastructures that enable and constrain them. Furthermore, we discuss how they become consequential in healthcare, thereby indicating the importance of remaining reflexive about the political implications of diversity discourse and practice.

Stratified, precision or personalised medicine? Cancer services in the ‘real world’ of a London hospital (open access)
Sophie Day, R Charles Coombes, Louise McGrath-Lone, Claudia Schoenborn, Helen Ward

We conducted ethnographic research in collaboration with a large, research-intensive London breast cancer service in 2013–2014 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.

Theory, Culture and Society

Danger, Crime and Rights: A Conversation between Michel Foucault and Jonathan Simon (open access)
Michel Foucault, Jonathan Simon, Stuart Elden

This article is a transcript of a conversation between Michel Foucault and Jonathan Simon in San Francisco in October 1983. It has never previously been published and is transcribed on the basis of a tape recording made at the time. Foucault and Simon begin with a discussion of Foucault’s 1977 lecture ‘About the Concept of the “Dangerous Individual” in 19th-Century Legal Psychiatry’, and move to a discussion of notions of danger, psychiatric expertise in the prosecution cases, crime, responsibility and rights in the US and French legal systems. The transcription is accompanied by a brief contextualizing introduction and a retrospective comment by Simon.

Biopolitics, Thanatopolitics and the Right to Life (open access)
Muhammad Ali Nasir

This article focuses on the interrelationship of law and life in human rights. It does this in order to theorize the normative status of contemporary biopower. To do this, the case law of Article 2 on the right to life of the European Convention on Human Rights is analysed. It argues that the juridical interpretation and application of the right to life produces a differentiated governmental management of life. It is established that: 1) Article 2 orients governmental techniques to lives in order to ensure that both deprivation and protection of lives is lawful; 2) A proper application of Article 2 grounds itself on a proper discrimination of lives which causes Article 2 to be applied universally but not uniformly to all juridical subjects; 3) The jurisprudence of Article 2 is theoretically appreciable only in a ‘politics of life’. Finally, the article ends with a plea to analyse other fundamental human rights in the context of ‘biopolitical governmentality’.

Social Justice has put together an open access collection of blogs-articles on the social justice impact of Trump, which includes a brief review of Trump’s health care agenda.

Trump’s Health Care Agenda (open access)
Thomas Bodenheimer

The nomination of Tom Price to be Secretary of Health and Human Services and of Seema Verma to run the Medicare and Medicaid programs ensures a major attack on health services for the people of the United States. On health care, there is agreement between the Steve Bannon/Tea Party faction of the Trump pre-administration and the Paul Ryan/traditional Republican faction: they both want to repeal the Affordable Care Act (ACA). This agreement will affect both the individual mandate and the Medicaid expansion portions of the ACA. On the other major healthcare issue, the future of Medicare, the Trump factions disagree. The Paul Ryan faction and Tom Price hope to convert Medicaid into a privatized voucher system, whereas Trump’s pre-election statements—supported by much of his base—suggest that Trump wants to leave Medicare alone. This review of Trump’s health care agenda looks at the ACA’s individual mandate, the ACA’s Medicaid expansion, and the future of Medicare.

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