In the Journals

In The Journals: July 2018

Here are a variety of articles from July 2018.

Trends: There are a number of articles on pregnancy, aging populations and elder care; as well as analyses of Public Health campaigns, language, methods.  

 

Critical Public Health

How the food, beverage and alcohol industries presented the Public Health Responsibility Deal in UK print and online media reports

Nick Douglas, Cecile Knai, Mark Petticrew, Elizabeth Eastmure, Mary Alison Durand, and Nicholas Mays

The Public Health Responsibility Deal (RD) in England is a public–private partnership between government, industry and other stakeholders aiming to improve public health in four key areas: food, alcohol, health at work and physical activity. Wider literature shows that industry engages in framing of public health policy problems, solutions and its role in solutions that is favourable to its interests. As part of an evaluation of the RD, we conducted a media analysis to explore how industry spokespersons (from commercial enterprises, trade associations and social aspects/public relations organisations) represented the RD in newspaper and online reports. We systematically searched databases indexing articles of British national newspapers and the online news services of national broadcasters for articles published between 2010 and 2015. After application of inclusion criteria, we identified 247 relevant articles. We extracted direct quotations by industry spokespersons and analysed them thematically. Media reporting about the RD provided industry spokespersons with a high-profile platform to present frames relating to food, beverages and alcohol that were favourable to advancing or protecting industry positions and agendas. Framing of issues addressed responsibility for public health problems, policy options and the role of industry, also legitimising industry spokespersons to advocate a position on how public health policy should evolve. Media analysis can elucidate industry discourses around public health and examine their engagement in framing to extend their influence in public health policy.

‘To drink or not to drink’: media framing of evidence and debate about alcohol consumption in pregnancy

Kerry McCallum, Kate Holland

The issue of women’s consumption of alcohol during pregnancy has gained increasing public attention in Australia in recent years. This article examines the framing of the issue in news media and pregnancy and parenting websites during 2013–2014, with particular attention to the two most prominent frames of ‘contested evidence and advice’ and ‘women’s rights’. Public health guidelines in Australia, as elsewhere, advise women that not drinking during pregnancy is the safest option, but debate continues to surround the evidence to support this advice and its impact. This article considers these guidelines in the context of critical public health scholarship highlighting the intensification of discourses of health, risk, and responsibility in relation to pregnancy and maternal practices. Newly published scientific research provided a key source of news about the risks associated with alcohol consumption during pregnancy, with stories reporting on studies that variously identified evidence of harm, or no harm, to the fetus. In the context of the ‘women’s rights’ frame, consuming alcohol during pregnancy was not constructed primarily as a matter of scientific research or expert opinion but as one of many social practices women negotiate during pregnancy. It foregrounded the rights of women to make their own decisions about alcohol consumption. The deployment of these two frames in mediated public discussion of the issue reflects the inconclusiveness of evidence about the risks of low to moderate consumption and shows women critically engaging with public health advice in the context of the numerous directives they are inundated with during pregnancy.

‘I cannot explain it. I knew it was wrong’: a public account of cigarette smoking in pregnancy

Katherine Hodgetts, Shona Helen Crabb

In this paper, we examine a situated example of the media’s (re)production of shared understandings around smoking, pregnancy and health. Through a discursive lens, we address the way in which Australian media personality Chrissie Swan accounted, on radio, for her continued smoking while pregnant after photographic evidence of her tobacco use entered the public domain. We argue that Swan’s account of her smoking privileges a version of ‘the good mother’ as solely responsible for the health of her foetus, and right to feel ashamed when putting this at risk. A construction of smoking as a (medicalised, irrational) addiction enables her to manage a positive identity in the face of this construction: she presents as being ‘thwarted’ in her quitting efforts by a force beyond her control. Ultimately, we argue that the version of ‘good motherhood’ constructed in Swan’s account is paradoxical, and may serve both to support, and constrain, pregnant smokers’ capacity to sustain quitting behaviours over the long term. In turn, we argue that ‘moralising’ anti-smoking interventions aimed at pregnant women may be less useful than an approach that interrogates the range of socio-cultural expectations of ‘good motherhood’ by which pregnant women are simultaneously positioned.

Perception and translation of numbers: the case of a health campaign in Denmark

Dorthe Brogård Kristensen,Charlotte Bredahl Jacobsen, and Signe Pihl-Thingvad

This article explores the translation of numeric health communications from the authorities to ordinary citizens. Based on qualitative interviews and document analysis, it follows the life of a Danish health campaign called ‘6 a day’ from its initiation to its dissemination, and finally to its place in the perceptions and health practices of citizens. While the definition of the target of ‘6 a day’ was clearly anchored in social and scientific contexts, it incorporated considerable ambiguity and scientific uncertainty, flaws which were deliberately kept from citizens. The number ‘6’ was meant to appear unquestionable. We suggest that this way of making and disseminating numeric health campaigns may best be understood as a process of creating a mould and offering it to citizens to fill with their own health practices. Such a process is rife with translations and the article analyses both these and their impact on citizens’ health practices and perceptions. We conclude that the success of the campaign lies in its implicit logic and the agency it fosters, rather than its ability to improve health literacy or make citizens aspire to specific health targets. The article thereby contributes to an understanding of the effects of numeric health communications. Health communicators may also gain from an increased awareness of the processes of translation involved in health messages created as moulds.

 

Is social isolation a public health issue? A media analysis in Aotearoa/New Zealand

Mary Breheny, Christina Severinsen

Recognition of the health effects of social isolation has led to the media framing it as a public health issue. In this paper, we examine how the media frame social isolation among older people and how the public respond to this framing. Using framing analysis, we analysed an online article, embedded video content and 369 comments posted in response to this article. The article used a recognisable public health framing to understand the causes of social isolation as structural, supported by a video which presented the private face of a public health problem. The online comments largely resisted this framing, arguing that social isolation reflected an individual deficit, best remedied through individual actions such as joining groups or having a positive attitude. Families were also viewed as responsible for the social lives of their members, and social isolation was attributed to neglectful families. Commenters also suggested that alleviating social isolation was the responsibility of neighbours and volunteers. These three arguments accounted for 88% of the comments. Much less commonly, social isolation was described as due to the march of Western civilisation. This analysis shows how the public are active in their response to, and largely rejection of, framing social isolation as a public health issue. Although the health impacts of social isolation were endorsed, this was insufficient for structural explanations to prevail. Public health campaigners need to understand how individualising accounts of health issues are used to undermine public health explanations so as to most effectively challenge them.

Health: An Interdisciplinary J. for the Social Study of Health, Illness and Medicine

To be or not to be sick and tired: Managing the visibility of HIV and HIV-related fatigue

Laura Schuft, Estelle Duval, Julie Thomas, Sylvain Ferez

This article takes a new direction in exploring HIV-related fatigue by adopting a qualitative interactionist approach. We analyse the social meanings attributed to fatigue among people living with HIV in France, the social gains and losses of its visibility and the social frames that condition its discursive and physical expression. The two-part methodology combines grounded theory analysis of 50 transcribed unstructured interviews conducted across France and participant observations within four HIV-related associations. Results reveal that the visibility of fatigue is in part dependent on the visibility of this stigmatized illness. The expression of fatigue is therefore closely linked with disclosure and concerns about HIV stigma. The degree to which HIV and HIV-related fatigue are rendered (in)visible also depends on structural factors including gender prescriptions, as well as context effects such as the type of social or ‘care’ relations involved in the social frame of interaction.

Contesting facts about wind farms in Australia and the legitimacy of adverse health effects (Open Access) 

Shannon Clark, Linda Courtenay Botterill

The development of wind energy in Australia has been subject to ongoing public debate and has been characterised by concerns over the health impacts of wind turbines. Using discursive psychology, we examine ‘wind turbine syndrome’ as a contested illness and analyse how people build and undermine divergent arguments about wind-farm health effects. This article explores two facets of the dispute. First, we consider how participants construct ‘facts’ about the health effects of wind farms. We examine rhetorical resources used to construct wind farms as harmful or benign. Second, we examine the local negotiation of the legitimacy of health complaints. In the research interviews examined, even though interviewees treat those who report experiencing symptoms from wind farms as having primary rights to narrate their own experience, this epistemic primacy does not extend to the ability to ‘correctly’ identify symptoms’ cause. As a result, the legitimacy of health complaints is undermined. Wind turbine syndrome is an example of a contested illness that is politically controversial. We show how stake, interest and legitimacy are particularly relevant for participants’ competing descriptions about the ‘facts’ of wind turbine health effects.

Epistemological challenges in contemporary Western healthcare systems exemplified by people’s widespread use of complementary and alternative medicine

Anita Salamonsen, Rolf Ahlzén

Modern Western public healthcare systems offer predominantly publicly subsidized healthcare traditionally based on biomedicine as the most important basis to cure persons who suffer from disorders of somatic or psychiatric nature. To which extent this epistemological position is suitable for this purpose is under scientific debate and challenged by some people’s personal understandings of health and illness, their individual illness experiences and their decision-making. Current studies show decreasing levels of patient trust in Western public healthcare and a widespread patient-initiated use of complementary and alternative medicine which is often linked to unmet patient-defined healthcare needs. Patients’/complementary and alternative medicine users’ understandings of their afflictions are often based on elements of biomedical knowledge as well as embodied and experience-based knowledge. We believe this points to the need for a phenomenologically and socially based understanding of health and illness. In this article, we analyze challenges in contemporary healthcare systems, exemplified by people’s widespread use of complementary and alternative medicine and based on three ways of understanding and relating to unhealth: disease (the biomedical perspective), illness (the phenomenological perspective), and sickness (the social perspective). In public healthcare systems aiming at involving patients in treatment processes, acknowledging the coexistence of differing epistemologies may be of great importance to define and reach goals of treatment and compliance.

Health and Place(Volume 52) 

Re-thinking the health benefits of outstations in remote Indigenous Australia

Kate Senior, Richard Chenhall, Julie Hall, Daphne Daniels

The small, decentralised communities, known as outstations which satellite larger Indigenous Australian remote communities have often been conceptualised as places that are beneficial to health and well-being. This paper provides an exploration of the meaning of an outstation for one family and the benefits that this connection brings to them, which are expressed in a deep connection to the land, continuing relationships with ancestors and a safe refuge from the stresses of the larger community. We argue that the outstation provides a place for people to be in control of their lives and form hopes and plans for the future. These benefits are positioned in a context where the future liveability and sustainability of the outstation is both fragile and vulnerable. 

Creating “therapeutic landscapes” at home: The experiences of families of children with autism

Wasan Nagib, Allison Williams

This study explores the challenges faced within the home environment by North American families of children with autism. The study also examines the diversity and extent of physical modifications introduced by the families to alleviate these challenges. The concept of therapeutic landscapes is employed as a framework to examine how physical modifications transform the home environment into a place of healing for both the children with autism and their family members. Finally, the study offers a general design framework that can ultimately guide home designers and policymakers in developing friendly home environments for children with autism and their families.

How extractive industries affect health: Political economy underpinnings and pathways  (Open Access)

Ted Schrecker, Anne-Emanuelle Birn, Mariajosé Aguilera

A systematic and theoretically informed analysis of how extractive industries affect health outcomes and health inequities is overdue. Informed by the work of Saskia Sassen on “logics of extraction,” we adopt an expansive definition of extractive industries to include (for example) large-scale foreign acquisitions of agricultural land for export production. To ground our analysis in concrete place-based evidence, we begin with a brief review of four case examples of major extractive activities. We then analyze the political economy of extractivism, focusing on the societal structures, processes, and relationships of power that drive and enable extraction. Next, we examine how this global order shapes and interacts with politics, institutions, and policies at the state/national level contextualizing extractive activity. Having provided necessary context, we posit a set of pathways that link the global political economy and national politics and institutional practices surrounding extraction to health outcomes and their distribution. These pathways involve both direct health effects, such as toxic work and environmental exposures and assassination of activists, and indirect effects, including sustained impoverishment, water insecurity, and stress-related ailments. We conclude with some reflections on the need for future research on the health and health equity implications of the global extractive order.

Health, Risk, and Society

Uncertainty work and temporality in psychiatry: how clinicians and patients experience and manage risk in practice?(Open Access)

Lotta Hautamäki

 In psychiatric clinical practice, professionals pursue risk management alongside various uncertainties concerning diagnoses and treatment decisions. In this article, I draw on an ethnographic study of understandings of bipolar disorder in Finland to argue that risk management in psychiatry is better characterised as practical uncertainty work. I show how both the clinicians and the patients coordinate the uncertainties of bipolar disorder symptoms, risks and treatment decisions, into something that can be managed. I examine the ways in which temporality structures this uncertainty work and I explore two different modes of framing time. Clinical time stems from the current psychiatric thinking committed to the standardised diagnosis and the ideals of evidence-based medicine. Through this, professionals frame a task-oriented and linear treatment path from diagnosis and treatment to a managed life with bipolar disorder. Experienced time, in contrast, relates to the logics of care and self-care amid the embodied experiences of different actors. This framing of time involves a cyclical process where the patient, the clinician and the treatment interventions each need to adjust to changing situations. 

Risk and boundary work in contemporary maternity care: tensions and consequences

Zoey Spendlove 

While the organisation of work in maternity care has historically witnessed boundary work between midwives and obstetricians, modern service provision has posed many challenges to professional boundary work, with increasing litigation and risk management practices fuelling the social construction of a ‘risk discourse’ within maternity care. Drawing upon observational and interview data of an ethnographic study conducted in a UK obstetric-led maternity unit during 2013, this article explores the professional experiences of contemporary ‘risk work’ and the impact of such ‘risk work’ upon the professional role boundaries of obstetricians and midwives. Midwives and obstetricians expressed concern regarding risk in childbirth. Obstetricians and midwives perceived control over the childbirth process as a means of promoting risk minimisation, so that risk management was central to the perceived rational management of uncertainty in maternity care. Anxiety over uncertainty, error and blame was associated with dominance of the biomedical model of care in translating and managing risk and a perceived increase in the medicalisation of childbirth. Such ‘risk discourse’ had consequently provoked boundary work tension, with the perceived shifting of professional role boundaries of obstetricians and midwives within maternity care. As a consequence of contemporary risk work and reconfiguration of role boundaries, the role of the midwife in the twenty-first century was perceived to be in a state of flux. I note that contemporary risk work and the reconfiguration of professional boundaries in maternity services potentially places the midwifery profession ‘at risk’ of deprofessionalisation, raising concerns for the future role and professional status of midwives. 

‘What is the headspace they are in when they are making those referrals?’ Exploring the lifeworlds and experiences of health and social care practitioners undertaking risk work within the Prevent Strategy (Open Access)

Claire Chivers

The 2015 Prevent Strategy policy of the UK Government places a legal duty on a wide range of professionals to assess risk regarding radicalisation and counter terrorism. By doing so, it expands the risk work required of these practitioners into an area seemingly unrelated to their usual professional remit. In this article, I analyse data from in-depth interviews undertaken in Spring 2017 with 15 practitioners working in the fields of family support, social work and healthcare in London, exploring how these participants experienced the risk work required by the Prevent Strategy in the context of their everyday work. In doing so, I employ Habermas’ lifeworld as a sensitising conceptual basis to explore lived experiences along three dimensions; levels of familiarity, areas of consonance and dissonance with other aspects of the practitioner’s role, and impact on identity. The findings were characterised by participants’ awareness of the Prevent Strategy, which was significantly lower than suggested by both government rhetoric and opposition campaign groups. Furthermore, it was narrated as largely consonant with other types of risk work. Tensions did, however, emerge for some participants regarding, for example, the likelihood of encountering radicalisation within their work and the potential negative consequences for society. These tensions were often ‘bracketed off’ in various ways, enabling participants to pragmatically continue undertaking their role. By exploring practitioner experiences, this article aims to ‘write the practitioner back in’ to sociological understandings of risk and, in doing so, to problematise predominant understandings of the Prevent Strategy.

 Journal of the History of Medicine and Allied Sciences

“The Neurosis That Has Possessed Us”: Political Repression in the Cold War Medical Profession  

Merlin Chowkwanyun

 Political repression played a central role in shaping the political complexion of the American medical profession, the policies it advocated, and those allowed to function comfortably in it. Previous work on the impact of McCarthyism and medicine focuses heavily on the mid-century failure of national health insurance (NHI) and medical reform organizations that suffered from McCarthyist attacks. The focus is national and birds-eye but says less about the impact on the day-to-day life of physicians caught in a McCarthyist web; and how exactly the machinery of political repression within the medical profession worked on the ground. This study shifts orientation by using the abrupt dismissal of three Los Angeles physicians from their jobs as a starting point for exploring these dynamics. I argue that the rise of the medical profession and the repressive state at mid-century, frequently studied apart, worked hand-in-hand, with institutions from each playing symbiotic and mutually reinforcing roles. I also explore tactics of resistance – rhetorical and organizational – to medical repression by physicians who came under attack.

 The Education of American Surgeons and the Rise of Surgical Residencies, 1930–1960

Justin Barr

In the first half of the twentieth century, the training of American surgeons changed from an idiosyncratic, often isolated venture to a standardized, regulated, and mandated regimen in the form of the surgical residency. Over the three critical decades between 1930 and 1960, these residencies developed from an extraordinary, unique opportunity for a few leading practitioners to a widespread, uniform requirement. This article explores the transformation of surgical education in the United States, focusing on the standardization and dissemination of residencies during this key period. Utilizing the archives of professional organizations, it shows how surgical societies initiated and forced reform in the 1930s. It demonstrates the seminal and early role taken by the federal government in the expansion of surgical residencies through incentivized policies and, especially, the growth of the Veterans Administration health system after World War II. Finally, an examination of intra-professional debates over this process illustrates both the deeper struggles to control the nature of surgical training and the importance of residency education in defining the midcentury American surgeon.

Transplant Buccaneers: P.K. Sen and India’s First Heart Transplant, February 1968

David S Jones, Kavita Sivaramakrishnan

On 17 February 1968, Bombay surgeon Prafulla Kumar Sen transplanted a human heart, becoming the fourth surgeon in the world to attempt the feat. Even though the patient survived just three hours, the feat won Sen worldwide acclaim. The ability of Sen’s team to join the ranks of the world’s surgical pioneers raises interesting questions. How was Sen able to transplant so quickly? He had to train a team of collaborators, import or reverse engineer technologies and techniques that had been developed largely in the United States, and begin conversations with Indian political authorities about the contested concept of brain death. The effort that this required raises questions of why. Sen, who worked at a city hospital in Bombay that could not provide basic care for all its citizens, sought a technology that epitomized high-risk high-cost, health care. To accomplish his feat, Sen navigated Cold War tensions and opportunities, situating his interests into those of his hospital, municipal authorities, Indian nationalism, Soviet and American authorities, the Rockefeller Foundation, and others. The many contexts and interests that made Sen’s work possible created opportunities for many different judgments about the success or failure of medical innovation.

Live Longer Better: The Historical Roots of Human Growth Hormone as Anti-Aging Medicine

Aimee Medeiros, Elizabeth Siegel Watkins

In recent years, historians have turned their attention to the emergence of anti-aging medicine, suggesting that this interest group coalesced in the wake of widespread availability of recombinant human growth hormone (HGH) after 1985. We take a longer view of modern anti-aging medicine, unearthing a nexus of scientific, medical, and cultural factors that developed over several decades in the twentieth century to produce circumstances conducive to the emergence of this medical sub-specialty established on the premise of the anti-aging effects of HGH. Specifically, we locate these roots in earlier hormone replacement therapies and in the so-called life extension movement. We reveal the continual tension between, on the one hand, champions of a mainstream medical specialty and a field of biomedical research that aimed to improve health for the aged and, on the other hand, advocates who campaigned for medical endeavors to preserve midlife health in perpetuity, and even to extend the human lifespan. We also demonstrate that the two groups shared a belief in science to solve – or at least to ameliorate – the problems of aging. This commitment to science has been the hallmark of twentieth and twenty-first century prescriptions for living life longer and better. 

Medical Anthropology

Finding Closure, Continuing Bonds, and Codentification After the 9/11 Attacks  (Open Access)

Victor Toom

In this article, I’m interested in the 2750 victims of the 9/11 attacks in New York City. I consider two connected issues. The first regards bereavement journeys of victims’ families and the significance of receiving a body to bury vis-à-vis the normative assignment to find closure. The second issue I address is how forensic experts, their technologies, and managing protocols interact with victims’ families and their emotions. Using insights from Science and Technology Studies, I articulate some of the goods and bads of identification practices and argue for extensive communication and cooperation between experts and victims’ families.

The Familial and the Familiar: Locating Relatedness in Colombian Donor Conception

Malissa Kay Shaw

 In this article, I explore how women undergoing in vitro fertilization with familial or anonymous egg donors located relatedness with a donor-conceived child through familial and social identities. Recognizing gametes as substances that contain biological and sociocultural/behavioral traits shaped women’s narratives around interconnected notions of the familial and familiar, or the social understanding of biological and social inheritance, and knowledge of the genetic materials involved. Women’s narratives of relatedness reflect their relationships with family and society and their desire to reproduce these relationships in their child(ren), a process that reproduces prevailing Colombian social values and notions of ideal citizens.

Toilet Talk: Eliminating Open Defecation and Improved Sanitation in Nepal

Celia McMichael

Globally, 2.4 billion people lack adequate sanitation, and open defecation remains common. In this article, I present the qualitative findings from an evaluation of a water, sanitation, and hygiene intervention in remote, mid-West Nepal. The evaluation, conducted in 2014, involved villagers from eight wards in Kotgaun Village Development Committee. Drawing on the concept of the “toilet tripod,” I argue as follows: multi-scalar political will provide an important foundation for construction and sustained use of toilets, proximate social pressures contributed significantly to toilet adoption and efforts to eliminate open defecation, and water insecurity constrained improved sanitation and hygiene.

Elder Care and Private Health Insurance in South Africa: The Pathos of Race-Class

Casey Golomski

This article shows how age as a category of dependency upends popular consciousness about race and class within postcolonial health systems. White individuals working within South Africa’s private health insurance (medical aid) market and allied fields face a conundrum with respect to elder care. Some policies accommodate older adults’ needs, but being older is costly and long-term residential care is excluded. Critically, these workers’ position as middle- and upper-class enables them to pity older, poorer whites and blacks who more often use a dysfunctional public health sector, yet the elder care gap and other limitations reveal that these workers’ own class position is also tenuous. 

Vigilance and Sentinels in Global Health Security

Chris Lyttleton

Global health security is increasingly reliant on vigilance to provide early warning of transnational health threats. In theory, this approach requires that sentinels, based in communities most affected by new or reemerging infectious diseases, deliver timely alerts of incipient risk. Medicalizing global safety also implies there are particular forms of insecurity that must be remedied to preempt disease spread. I examine vigilance in the context of spreading drug-resistant malaria in Southeast Asian border zones and argue that to act as sentinels, marginal groups vulnerable to infection must be able to articulate what social and behavioral factors prompt proliferating disease risks.

Therapeutic Navigations and Social Networking: Mozambican Women’s Quests for Fertility

Inês Faria 

In Mozambique, involuntary childlessness triggers immediate treatment seeking, especially on the woman’s side. Treatment processes involve the activation and/or creation of situational social networks that provide emotional, instrumental, and informational support. These are formed through careful processes of disclosure management, and are embedded in social relations and local moral configurations of family making, reproduction, and healing. In this article I explore social networks involving friends, family, religion, and emerging biosocial relations, some or all of which are involved in Mozambican women’s and couples’ therapeutic navigations in the quest for fertility.

Social Science and Medicine (Volumes 208 and 209)

Perceptions of intersectional stigma among diverse women living with HIV in the United States

Whitney S.Rice et al.

Attitudes and behavior that devalue individuals based upon their HIV status (HIV-related stigma) are barriers to HIV prevention, treatment, and well being among women living with HIV. Other coexisting forms of stigma (e.g., racism, sexism) may worsen the effects of HIV-related stigma, and may contribute to persistent racial and gendered disparities in HIV prevention and treatment. Few studies examine perceptions of intersectional stigma among women living with HIV. From June to December 2015, we conducted 76 qualitative interviews with diverse women living with HIV from varied socioeconomic backgrounds enrolled in the Women’s Interagency HIV Study (WIHS) in Birmingham, Alabama; Jackson, Mississippi; Atlanta, Georgia; and San Francisco, California. Interview guides facilitated discussions around stigma and discrimination involving multiple interrelated identities. Interviews were audio-recorded, transcribed verbatim, and coded using thematic analysis. Interviewees shared perceptions of various forms of stigma and discrimination, most commonly related to their gender, race, and income level, but also incarceration histories and weight. Women perceived these interrelated forms of social marginalization as coming from multiple sources: their communities, interpersonal interactions, and within systems and structures. Our findings highlight the complexity of social processes of marginalization, which profoundly shape life experiences, opportunities, and healthcare access and uptake among women living with HIV. This study highlights the need for public health strategies to consider community, interpersonal, and structural dimensions across intersecting, interdependent identities to promote the well being among women living with HIV and to reduce social structural and health disparities. 

Epistemic tensions between people living with asthma and healthcare professionals in clinical encounters

Jennie Haw, Shannon Cunningham, Kieran C. O’Doherty

Rationale- Asthma is a common respiratory condition with high prevalence rates globally. While there are effective treatments, asthma remains an important health concern as people continue to die from severe attacks. Improving the experiences of, and health outcomes for, people with asthma depends heavily on their interactions with healthcare professionals. Understanding negative clinical encounters will benefit people with asthma and healthcare providers.

Objective- To examine epistemic tensions in negative clinical encounters from a patient perspective, with an aim to better understand how patients respond to these tensions. Much of the scholarship on patient interactions with healthcare providers examines interpersonal or structural factors. Thus, focusing our analysis on tensions between lay and expert knowledge in negative clinical encounters provides a novel contribution to this body of scholarship.

Method- As part of a larger qualitative study (n = 70) examining the lived experiences of people who have asthma or a child with asthma, semi-structured interviews with 17 participants who described having negative clinical encounters were analyzed for themes.

Results- Participants responded to epistemic tensions in two main ways: (1) by incorporating expert knowledge; and (2) by resisting/challenging expert knowledge. In both cases, participants also described feeling frustrated and uncertain about their or their child’s clinical care. We analyze these responses by drawing on Lindström and Karlsson’s (2016) conceptualization of epistemic tensions as arising from 3 characteristics of epistemic asymmetry: access, rights, and responsibility.

Conclusion- Based on this study, (1) a patient’s confidence in claiming epistemic access and asserting epistemic rights when epistemic tensions arise are related to the context and their own history of living with asthma; and (2), epistemic tensions can make visible the power relations in the patient-clinician relationship, which can lead to the exertion of biomedical authority, or the taking up of patient’s lay knowledge.

Time matters for intersex bodies: Between socio-medical time and somatic time

Limor Meoded Danon

This article focuses on the dynamic relationships between time and intersex bodies that exist, on the one hand, in medical policy on intersex bodies and, on the other, in intersex people’s subjective experiences. Time, from a sociological perspective, is a biosocial agent that establishes diagnostic practices, regulations, and treatment policy regarding intersex bodies. The systematic construction of timeframes by biomedical professionals aims to rapidly diagnose and treat intersex patients and is deeply rooted in the “dimorphic soma-gender order” (DMSGO), the imagined unified relationship of female bodies to femininity and male bodies to masculinity. From a socio-phenomenological perspective, I describe the concept of somatic time, which involves the relationship between time and the soma, the body’s own particular clock and rhythms, according to which it grows, changes, and develops, and the body as a time capsule that stores experiences. I will illustrate the somatic time of intersex people and their subjective embodied experiences of the soma-gender relationship, and explore how their somatic time challenges biomedical timeframes. This qualitative study is based on narrative interviews with biomedical professionals, parents of intersex children, and intersex adults from Israel and Germany.

 “Like finding a unicorn”: Healthcare preferences among lesbian, gay, and bisexual people in the United States

Alexander J. Martos, Patrick A. Wilson, Allegra R. Gordon, Marguerita Lightfoot, Ilan H. Meyer

Lesbian, gay, and bisexual (LGB) peoples’ healthcare preferences are often developed in response to social and institutional factors that can ultimately deter them from care. Prior qualitative explorations of LGB healthcare preferences have been limited in their ability to identify and compare patterns across age cohort, gender, and race/ethnicity. The current study examines qualitative data from 186 modified Life Story Interviews with three age cohorts of LGB people from New York City, NY, San Francisco, CA, Tucson, AZ, and Austin, TX to understand the factors influencing LGB people’s healthcare preferences. Data are analyzed using a directed content analysis approach. Five key themes emerged regarding influences on healthcare preferences: Stigma, provider expertise, identity, service type, and access. Findings suggest that healthcare preferences among LGB people are both complex and closely linked to social changes over time. Healthcare preferences among LGB people are both complex and closely linked to social changes over time.

The role of language in suicide reporting: Investigating the influence of problematic suicide referents

Florian Arendt, Sebastian Scherr, Thomas Niederkrotenthaler, Benedikt Till

 Background- Although suicide experts recommend using neutral suicide referents in news media reporting, this recommendation has not yet been tested empirically. This recommendation, based on the empirically yet untested assumption that problematic suicide referents carry meaning that is inappropriate from a prevention perspective, may lead to a different perspective on suicide, termed “framing effects.” For example, in German-speaking countries, the neutral term Suizid (suicide) is recommended. Conversely, Freitod (“free death”) and Selbstmord (“self-murder”) convey associative meanings related to problematic concepts such as free will (Freitod) and crime/murder (Selbstmord), and are therefore not recommended.

Method- Using a web-based randomized controlled trial focused on German speakers (N = 451), we tested whether the news media’s use of Suizid, Selbstmord, and Freitod elicits framing effects. Participants read identical news reports about suicide. Only the specific suicide referents varied depending on the experimental condition. Post-reading, participants wrote short summaries of the news reports, completed a word-fragment completion test and a questionnaire targeting suicide-related attitudes.

Results- We found that the news frame primed some frame-related concepts in the memory and also increased frame-related word choice. Importantly, we found that participants reading the free will-related Freitod frame showed greater attitudinal support for suicide among individuals suffering from incurable diseases.

Conclusions- This study highlights the importance of how the news media write about suicide and supports the language recommendations put forward by suicide experts. 

I feel like I am less than other people”: Health-related vulnerabilities of male migrants travelling alone on their journey to Europe  (Open Access) 

Jovana Arsenijević et al.

During 2015 and 2016, an unprecedented flow of approximately 800,000 migrants coming from Turkey towards Western Europe crossed the Balkans. Male migrants are perceived as being less vulnerable compared to other migrants and they are not given priority in service and support provision. This qualitative study examines the self-perceived vulnerabilities of male migrants travelling alone along the Balkan route to Europe. Twenty-four individual in-depth interviews, two group interviews and participant observation were conducted with male migrants in Belgrade, Serbia in 2017. Data was coded manually, and analysed thematically.

Male migrants traveling alone face the cumulative vulnerability of various traumatic events and migration-related contextual circumstances. Three main themes emerged: the ongoing desperate journey, the better treatment of ‘traditionally’ well recognised vulnerable sub-groups and the impact of the continuous stress on mental health. Deterrence measures imposed for border control purposes in the form of push-backs, expulsions, detention and degrading, inhumane treatment amplify the psychological distress of male migrants. Feelings of hopelessness, desperation, lack of self-value and self-esteem were reported. ‘Traditionally vulnerable’ populations were said to have had better treatment throughout the journey from smugglers, border state authorities, governmental officials, civil society and international organizations.

The devastating experiences of male migrants, as well as the better treatment offered to other groups of migrants like women and children, results in a perceived neglect of the needs of men in humanitarian response, rendering them vulnerable and exposing them to further health and protection risks. In a context where needs are unmet and people’s dignity and health are at risk, specific strategies should be developed to include men in the assistance and protection offered, particularly in relation to exposure to violence.

The moral significance of capturing micro-inequities in hospital settings

Supriya Subramani

This paper illustrates and reflects on subtle micro-level events and practices that sustain and reproduce unequal relationships in healthcare encounters, and draws attention to their moral significance in two hospitals in the south Indian city of Chennai. Based on observational data and in-depth interviews with 16 surgeons, 11 nurses, and 36 patients and their family members between February 2016 and July 2017, it reveals how both victims and perpetrators normalize instances of micro-inequities, often failing to recognize or acknowledge them. The findings illustrate how the prevalence of micro-inequities varies between different medical institutions, and suggest that while subtle in nature, their effect raises concerns regarding dignity and respect for patients and family members. Drawing on existing philosophical analyses of micro-inequities, the study concludes that their production in hospital settings creates an institutional ethos that disdains and marginalizes patients and their family members. Further, it negatively influences the patient/family-doctor relationship and functions as a barrier to reflective patient-centered care.

Tuberculosis patients and resilience: A visual ethnographic health study in Khayelitsha, Cape Town

Anne Lia Cremers, René Gerrets, Christopher James Colvin, Monwabisi Maqog, Martin Peter Grobusch

Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB) programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of patients’ experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients, 10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth interviews, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead researcher. The work reported here (both text and short videos) illustrates the various manifestations of resilience that patients demonstrated and how these impacted on decisions involving treatment seeking and adherence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The findings from this research highlight patients’ strategies for adapting to adversities, such as pausing TB treatment when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine TB patients’ health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits. TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vulnerabilities of TB patients and their communities. With the use of short videos, we provided patients with an alternative path for expressing their experiences, which we hope will support synergies between patients, researchers, and policy-makers for improved TB programmes.

Society and Mental Health 

Therapeutic Social Control of People with Serious Mental Illness: An Empirical Verification and Extension of Theory

Brea L. Perry, Emma Frieh, Eric R. Wright

Mental health services and psychiatric professional values have shifted in the past several decades toward a model of client autonomy and informed consent, at least in principle. However, it is unclear how much has changed in practice, particularly in cases where client behavior poses ethical challenges for clinicians. Drawing on the case of clients’ sexual behavior and contraception use, we examine whether sociological theories of “soft” coercion remain relevant (e.g., therapeutic social control; Horwitz 1982) in contemporary mental health treatment settings. Using structured interview data from 98 men and women with serious mental illness (SMI), we explore client experiences of choice, coercion, and the spaces that lie in between. Patterns in our data confirm Horwitz’s (1982) theory of therapeutic social control but also suggest directions for updating and extending it. Specifically, we identify four strategies used to influence client behavior: coercion, enabling, education, and conciliation. We find that most clients’ experiences reflect elements of ambiguous or limited autonomy, wherein compliance is achieved by invoking therapeutic goals. However, women with SMI disproportionately report experiencing intense persuasion and direct use or threat of force. We argue that it is critical to consider how ostensibly noncoercive and value-free interventions nonetheless reflect the goals and norms of dominant groups.

“If You Were Like Me, You Would Consider It Too”: Suicide, Older Men, and Masculinity

Ester Carolina Apesoa-Varano, Judith C. Barker, Ladson Hinton

Rates of suicide are far higher for older men than for any other age or gender group. However, we know relatively little about how depressed older men think about suicide. This study addresses this gap by exploring how Latino and white non-Hispanic elderly men discuss why they would or would not contemplate suicide. Men, aged 60 and older, were screened and assessed using standard instruments for clinical depression. Those meeting criteria were invited to participate in a 1.5 to 2.5-hour in-depth interview, in either English or Spanish. Interview data come from 77 men and included men with treated and untreated depression. Men linked depression to losing their economic role, sense of productivity, and familial respect. Their narratives of suicide highlighted central tenets of hegemonic masculinity. Men from both ethnic groups asserted that “being a man” involved strength and independent choice. For some men, suicide exemplifies these ideals; for most men suicide violates them. The majority of men who felt that suicide further violated their already fragile manhood either reclaimed a decisive masculine self or embraced a caring self, especially in relation to children and family. The latter pattern raises a theoretical question regarding the symbolic boundaries of hegemonic masculinity. 

Sociology of Health and Illness

Fit to father? Online accounts of lifestyle changes and help‐seeking on a male infertility board

Esmée Hanna, Brendan Gough, Nicky Hudson

The reproductive realm is routinely viewed as a feminised space requiring women’s commitment and labour. By contrast, men’s procreative contributions and ‘reproductive masculinity’ is represented as unproblematic, with men assumed to be fertile across the lifespan. Recent scientific research has, however, cast doubt over these longstanding assumptions, suggesting that a link does exist between ‘lifestyle’ factors and male fertility. The notion that fertility can be improved with effort (for both women and men) can be located within wider cultural and political shifts which construct individuals as increasingly responsible for acting on health messages and engaging in self‐disciplining body projects. Through an exploration of ‘lifestyle changes’ within a men’s online infertility discussion forum board, this paper examines how discourses of individualisation healthism and masculinity are reproduced and interlinked. Our thematic analysis indicates that ‘lifestyle work’ is construed as crucial for achieving conception ‐ and as a means to demonstrate men’s commitment to the dyadic goal of parenthood, which in turn may challenge and extend previous notions of ‘reproductive masculinity’.

At, with and beyond risk: expectations of living with the possibility of future dementia

Richard Milne, Ana Diaz, Shirlene Badger, Eline Bunnik, Karine Fauria, Katie Wells

Biomedical research aimed at the development of therapies for chronic and late‐onset conditions increasingly concentrates on the early treatment of symptom‐less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier stages of disease and prompt concerns about the implications of communicating test results associated with the risk of developing dementia when no effective treatments are available. This article examines expectations of the implications of learning test results related to dementia risk, based on focus group research conducted in the UK and Spain. It points to the extended social and temporal aspects of the dementia risk experience. Three key dimensions of this risk experience are elaborated: living ‘at risk’, represented in efforts to reduce risk and plan for the future; ‘with risk’, through vigilance towards cognitive health and earlier or prolonged contact with healthcare services; and finally, ‘beyond risk’ through a cessation of the self in its current social, legal and financial form.

Pastoral power and the promotion of self‐care  (Open Access)

Lorelei Jones

In many countries government policy is becoming increasingly reliant on citizens taking greater responsibility for their health and wellbeing and limiting their consumption of public services. In this paper I develop Foucauldian perspectives on the work required to create and maintain responsibilised subjects, focusing on the role of ‘pastors’ – specialists, experts and therapists who promote desirable subjectivities (Waring and Latif 2017). Drawing from ethnographic research, I consider how government policies for the promotion of self‐care within the English healthcare system not only place increased emphasis on patients taking responsibility for their own health and wellbeing, but also seek to constitute new pastoral subjectivities as responsible for conducting the conduct of patients. I look at efforts to constitute pastoral subjectivities through an assemblage of management knowledge, educational practices and training materials. I argue that efforts to enrol and train pastors are unlikely to accomplish governmental objectives because of the availability of alternative guides for action drawn from professional training, established routines, and forms of social belonging.

‘If I can walk that far’: space and embodiment in stories of illness and recovery

Emily Heavey

Illness and recovery transform embodied experience, and transform the experience of space. Space, in turn, is a valuable resource in the telling of an illness narrative. Starting from a phenomenological perspective that takes the body to be the centre of experience, and hence of selfhood and storytelling, this article offers an argument for and an approach to analysing space as a narrative resource in stories about illness and recovery. Using a case study of one woman’s stories about her amputation, it demonstrates how both narrated space and narrating space can be used as devices to structure the narrative and position its characters and interlocutors to construct the narrator’s embodied experiences and identities. The article reveals intersections between embodied experience, space, and narrative identity construction, offering a new way of attending to illness narratives and a new way of engaging with narrative space.

E‐cigarettes, vaping and performativity in the context of tobacco denormalisation (Open Access)

Mark Lucherini, Catriona Rooke, Amanda Amos

E‐cigarettes are devices through which a nicotine solution is ‘vapourised’ and inhaled by the user. Unlike cigarettes, the process involves no tobacco combustion. However, the inhalation and exhalation of vapour is reminiscent of smoking and there is debate about the possible harms and benefits of e‐cigarette use, including the ‘renormalisation’ of smoking. Despite these debates, there has been little exploration into the embodied and semiotic similarities between smoking and vaping. This paper views the practices of vaping and smoking through the lens of performativity that is, the accumulation of meaning associated with the habits over time and space. Through in‐depth interviews, we explore how young adults from primarily disadvantaged areas in Scotland, understand the similarity in practices between smoking and vaping. Participants talked about financial barriers to using different types of e‐cigarettes, and how their use reflected their views on smoking cessation. They also discussed the embodied similarities between smoking and vaping, with divergent opinions on whether this continuance of habit was beneficial or not, revealing still developing and ambiguous norms around performativity. The norms of vaping were also frequently discussed, with participants’ experiences and views reflecting the contested position of vaping in an environment where cigarette smoking is denormalised.

The politics of ageing: health consumers, markets and hegemonic challenge

Brian Salter, Charlotte Salter

In recent years ageing has travelled from the placid backwaters of politics into the mainstream of economic, social and cultural debate. What are the forces that have politicised ageing, creating a sustained opposition to the supply side hegemony of pharmaceuticals, medicine and state which has historically constructed, propagated and legitimised the understanding of ageing as decline in social worth? In addressing this question, the paper develops Gramsci’s theory of hegemony to include the potentially disruptive demand side power of consumers and markets. It shows how in the case of ageing individuals acting in concert through the mechanisms of the market, and not institutionalised modes of opposition, may become the agents of hegemonic challenge through a combination of lifecourse choice and electoral leverage. In response, the hegemony is adapting through the promotion of professionally defined interpretations of ‘active ageing’ designed to retain hegemonic control. With the forces of hegemony and counter‐hegemony nicely balanced and fresh issues such as intergenerational justice constantly emerging, the political tensions of ageing are set to continue.

The place of abortion in the pregnancy decision‐making process in young adult women in Catalonia, Spain

Laia Ferrer Serret, Montserrat Solsona Pairó

Induced abortion is one option to control fertility in Spain. Young adult women (25–34 years old) show a different abortion pattern compared to women in other age groups, being less likely to seek abortions than younger women and having one of the lowest proportions of unintended pregnancies. We aimed to analyse the factors involved in the pregnancy decision‐making process to better understand why young adult women seek abortions in Catalonia, Spain. In‐depth semi‐structured interviews with 25 nulliparous pregnant young adult women and one focus group discussion with healthcare providers were conducted in 2008/2010. We found that inconsistent contraceptive use prior to an unintended pregnancy was due to ambivalence and weighing of priorities during sex. The quality of the relationship was paramount to the abortion decision whereas other reasons (financial/employment status, fulfilling aspirations, support networks) were less important. We conclude that the motivations for the abortion decision are interrelated and based on the current life stage of women and that there is pressure on young adult women in Spain to become mothers. Induced abortion is perceived as the last resort to postpone motherhood. Our findings reinforce the unequal societal burden placed on women to take responsibility for prevention of unintended pregnancy.

 


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