In the Journals

In The Journals, January 2019

The January roundup from the journals. Happy Reading!

Body & Society

Why Kinesthesia, Tactility and Affectivity Matter: Critical and Constructive Perspectives

Maxine Sheets-Johnstone

This article offers critical and constructive perspectives essential to understanding living bodies, and, in effect, to showing that kinesthesia, tactility and affectivity matter because they are central to animate life. Critical perspectives focus on practices that distance us from the lived realities of animate nature, on insights into those realities, and on ways in which language is intimately related to those realities. Constructive perspectives focus on ontogenetic studies that empirically testify to our being animate organisms from the start. The studies validate Husserl’s insight into the developmental progression from ‘I move’ to ‘I do’ to ‘I can’. On the basis of these perspectives, concluding observations focus on the mutual validation of empirical and phenomenological research, on the distinction between movement and objects in motion, on the distinction between perceiving and feeling one’s body, and on the distinction between having a body and being a body.

 

The Multiple Lives of Affect: A Case Study of Commercial Surrogacy

Billy Holzberg

This article intervenes into contemporary scholarship on affect by bringing different affect theories into the same analytical frame. Analysing commercial surrogacy in India through three different conceptualizations of affect found in the work of Michael Hardt, Sara Ahmed and Brian Massumi reveals how affect emerges as a malleable state in the practice of, as a circulatory force in the debates around, and as an ephemeral intensity in the spontaneous resistance to surrogacy. Based on this analysis, I suggest that integrating different theories of affect enables more holistic examinations of corporeal regulation by opening our understanding to the multiple lives of affect that operate on the level of political economy, cultural signification and material intensity simultaneously.

 

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

Representations of mental health and arts participation in the national and local British press, 2007–2015

Dimitrinka Atanasova, Nelya Koteyko, Brian Brown, Paul Crawford

We analysed news articles published in national and local British newspapers between 2007 and 2015 to understand (1) how mental health and arts participation were framed and (2) how the relationships between participants in arts initiatives were conceptualised. Using corpus-assisted qualitative frame analysis, we identified frames of recovery, stigma and economy. The recovery frame, which emphasised that mental illness can be treated similarly to physical illness, positioned arts participation as a form of therapy that can complement or substitute medication. The stigma frame presented arts participation as a mechanism for challenging social conceptions that mentally ill individuals are incapable of productive work. The economyframe discussed the economic burden of mentally ill individuals and portrayed arts participation as facilitating their return to employment. Using thematic analysis, which paid attention to the representation of social actors, we found that service users were identified as the prime beneficiaries of arts initiatives, and arts participation was conceptualised as a way to bring people with mental health issues together. We discuss these findings against existing research on media representations of mental health and the concept of ‘mutual recovery’ and suggest what wider concurrent developments in the areas of mental health and the media may account for the uncovered frames and themes.

 

“It was like I had to fit into a category”: Care-seekers’ experiences of gender regulation in the Swedish trans-specific healthcare

Ida Linander, Erika Alm, Isabel Goicolea, Lisa Harryson

The few previous studies investigating regulation of gender in trans-specific healthcare are mainly based on text material and interviews with care-providers or consist solely of theoretical analyses. There is a lack of studies analysing how the regulation of gender is expressed in the care-seeker’s own experiences, especially in a Nordic context. The aim of this study is to analyse narratives of individuals with trans experiences (sometimes called transgender people) to examine how gender performances can be regulated in trans-specific care in Sweden. The conceptual framework is inspired by trans studies, a Foucauldian analysis of power, queer phenomenology and the concept of cisnormativity. Fourteen interviews with people with trans experiences are analysed with constructivist grounded theory. The participants’ experiences indicate that gender is constructed as norm-conforming, binary and stable in trans-specific healthcare. This gendered position is resisted, negotiated and embraced by the care-seekers. Norms and discourses both inside and outside trans-specific care contribute to the regulation and limit the room for action for care-users. We conclude that a trans-specific care that has a confirming approach to its care-users, instead of the current focus on gender norm conformity, has the potential to increase the self-determination of gender performance and increase the quality of care.

 

“It’s not my business”: Exploring heteronormativity in young people’s discourses about lesbian, gay, bisexual, transgender, and queer issues and their implications for youth health and wellbeing

Cara KY Ng, Rebecca J Haines-Saah, Rodney E Knight, Jean A Shoveller, Joy L Johnson

In Canada, the issue of creating safe and inclusive school environments for lesbian, gay, bisexual, transgender, and queer students has been in the spotlight. Several researchers and advocates have pointed out the positive effects of lesbian, gay, bisexual, transgender, and queer-positive policy frameworks on the health and wellbeing of all young people. In this article, we take a critical approach to analyzing narrative findings from qualitative interviews conducted with youth in three communities in British Columbia, Canada: “the North,” Vancouver, and Abbotsford. Using a Foucauldian Discourse Analytic Approach and Butler’s concept of Citationality, our analysis suggested that although explicit homophobia was largely absent from youth discussions, young people discursively constructed lesbian, gay, bisexual, transgender, and queer identities and “communities” in ways that reified heteronormativity. Youth made references to sociopolitical discourses of libertarianism and liberalism and to homonormative stereotypes regarding gay masculinity. A few young people also alluded to egalitarian, queer-positive discourses, which appeared to interrogate structures of heteronormativity. Since studies suggest a connection between the existence of institutional supports for lesbian, gay, bisexual, transgender, and queer students in schools and their mental and physical wellbeing, we conclude by considering the limitations and possibilities of these sociopolitical discourses in the struggle for sexual and gender equity, and how they might help frame future health-related, anti-homophobia policy frameworks in educational settings.

 

Men’s weight loss stories: How personal confession, responsibility and transformation work as social control

Danielle Couch, Gil-Soo Han, Priscilla Robinson, Paul Komesaroff

Obesity is considered a public health concern. In Australia, there are a greater number of overweight or obese men compared with women. The media is an important source of information about body weight and weight management. We undertook a qualitative study to analyse men’s weight loss stories in a popular men’s magazine. Between January 2009 and December 2012, we collected 47 men’s weight loss stories from the Australian edition of Men’s Health magazine. We undertook thematic analysis to examine the stories. Confession, personal responsibility, appearance and transformation were key themes. The stories describe the men’s self-discipline and their monitoring and tracking of their behaviours as activities which supported their weight loss. In this way, the stories promote the importance of such panoptic self-surveillance and self-discipline to the readers. We consider how such stories contribute to the wider synoptic system of media messages about body weight.

 

There’s no pill to help you deal with the guilt and shame’: Contemporary experiences of HIV in the United Kingdom

Liz Walker

The experience of living with HIV, in the global north, has changed significantly over the past 20 years. This is largely the result of effective biomedical methods of treatment and prevention. HIV is now widely considered to be a long-term condition like many others – it has been argued that HIV has been ‘normalised’. Drawing on online qualitative survey data, with respondents aged 18–35 years, diagnosed with HIV in the past 5 years, this research explores contemporary subjective experiences of being diagnosed, and living, with HIV in the United Kingdom. The data reveal ambiguous experiences and expectations, as the ‘normative’ status of HIV exists alongside ongoing experiences of fear, shame and stigma – maintaining its status as the most ‘social’ of diseases. In rendering HIV ‘everyday’, the space to articulate (and experience) the ‘difference’ which attaches to the virus has contracted, making it difficult to express ambivalence and fear in the face of a positive, largely biomedical, discourse. In this article, the concepts of normalisation and chronicity provide an analytical framework through which to explore the complexity of the ‘sick role’ and ‘illness work’ in HIV.

 

Journal of the History of Medicine and Allied Sciences

New Directions in the Historiography of Psychiatry

Deborah Doroshow, Matthew Gambino, Mical Raz

Gerald Grob’s work in the history of psychiatry over the course of almost fifty years created a model for how historians might successfully situate mental health in its social and political context, and how inseparable it was from this context. Over the last twenty years, the field has grown tremendously. Historians have incorporated categories of analysis like gender and race, methodologies like cultural history and intellectual history, and sought to continue Grob’s quest to understand American mental health history as a critical component of American history writ large. In this piece, we suggest several potential areas for future study. Building on Grob’s work on the asylum, we focus on the continued need to explore the texture of lived experience for both practitioners and those experiencing mental illness, both within and beyond the institution. In an era when the politics of deinstitutionalization continue to shape the modern mental health enterprise, we suggest that further examination of the consequences of deinstitutionalization is both inherently rich and relevant to contemporary mental health practice. Finally, we discuss opportunities for historians to engage with policymaking and social justice, pointing to incarceration and juvenile justice as two especially relevant areas for further study.

 

Homosexuality and Psychoanalysis Meet at a Mental Hospital: An Early Institutional History

Naoko Wake

Psychoanalysis and homosexuality in the United States were both largely in flux between 1910 and 1935. This article sheds light on this unique historical moment by first exploring scholarly discussions of the era’s psychoanalysis and homosexuality, both of which emphasized the transitional nature of therapy and sexuality. By putting two bodies of scholarship into conversation, I also suggest how the historiography might move beyond two oft-cited arguments—that the psychoanalysis of the era had the power to form a person’s sexual identity negatively, and that sexual minorities formed their identities affirmatively by staying away from medical interventions. I argue that, instead, psychoanalysis was part of modern sexual identity-formation in surprisingly open-ended ways. The second half of the article continues to explore the interplay between therapy and sexuality by closely examining clinical practices at one of the leading mental hospitals of the era: Sheppard and Enoch Pratt Hospital in Towson, Maryland, where an eclectic mode of psychotherapy was actively employed to treat homosexuality. In particular, the work of Harry Stack Sullivan (1892-1949), a gay psychiatrist well-known for his interpersonal theory of mental illness, shows how male patients who experienced same-sex sexual relationships nurtured productive interdependency among men in their articulation of sexual identity. By carefully delineating this process, the article shows how analytic practices could, and sometimes did, offer a crucial space for self-reflection and articulation of male sexuality.

 

Pathologizing the Crisis: Psychiatry, Policing, and Racial Liberalism in the Long Community Mental Health Movement

Nic John Ramos

The community mental health movement has been generally regarded as a benevolent movement that replaced old notions of psychiatric racism with new ideas about the normality of race. Few studies, however, have explored the movement for its active support for new surveillance and policing strategies, particularly broken windows theory, a policing approach partly responsible for the expansion of prisons in the United States after the 1970s. Looking to racially liberal approaches to psychiatry in the 1960s and 1970s crafted by integrationist psychiatrist Louis Jolyon West and black nationalist psychiatrist J. Alfred Cannon at the University of California, Los Angeles, this essay demonstrates that cultural and biological explanations for racial violence in civil rights and black nationalist discourses renewed surveillance on poor people of color that resulted in increased forms of incarceration, segregation, and discrimination for them by the 1980s. Rather than forward racial justice, I argue that psychiatric discourses arguing for the racial sameness of white and black minds in the 1960s and 1970s relied on scientific and cultural narratives centered on child development, gender, and sexuality that obscured the processes of racial capitalism that continued to produce poverty and sickness in black communities.

 

Psychiatric Jim Crow: Desegregation at the Crownsville State Hospital, 1948–1970

Ayah Nuriddin

The Crownsville State Hospital, located in Maryland just outside of Annapolis, provides a thought-provoking example of the impact of desegregation in the space of the mental hospital. Using institutional reports, patient records, and oral histories, this article reconstructs the three phases of desegregation at Crownsville. First, as a result of its poor conditions, lack of qualified staff, and its egregious mistreatment of patients, African American community leaders and organizations such as the NAACP called for the desegregation of the care staff of Crownsville in the late 1940s. Second, the introduction of a skilled African American staff created unprecedented and morally complex issues about access to psychiatric therapeutics. Last, in 1963, Health Commissioner Dr. Isadore Tuerk officially desegregated patients in all Maryland state hospitals. Though desegregation brought much needed improvements to Crownsville, these gains were ultimately swamped by deinstitutionalization and the shift towards outpatient psychiatric care. By the 1970s, Crownsville had returned to the poor conditions that existed during segregation.

 

The Final Years of Central State Hospital

Ellen Dwyer

There is a rich literature on the deinstitutionalization movement in the US but few, if any, parallel histories of state mental hospitals. Under attack from the 1950s on, state hospitals dwindled in size and importance. Yet, their budgets remained large. This paper offers a case study of one such facility, Indiana’s Central State Hospital, between 1968 and 1994. During these years, local newspapers published multiple stories of patient abuse and neglect. Internal hospital materials also acknowledged problems but offered few solutions. In 1984, the US Department of Justice intervened, charging Central State with having violated patients’ civil rights, the first such action filed under the 1980 Civil Rights of Institutionalized Persons Act. Although Indiana signed a consent decree promising major reform, long-lasting change proved elusive. Civil and criminal lawsuits proliferated. In 1992, as Central State continued to attract negative attention, Indiana Governor Evan Bayh ordered the troubled hospital closed. His decision promised to save the state millions of dollars and won plaudits from many, but not all, mental health advocates. Even as the last patients left in 1994, some families continued to challenge the wisdom of eliminating Indiana’s only large urban mental hospital, but to no effect.

 

Medical Anthropology

“That Heart Sickness”: Young Aboriginal People’s Understanding of Rheumatic Fever

Alice G. Mitchell, Suzanne Belton, Vanessa Johnston, Wopurruwuy Gondarra & Anna P. Ralph

High rates of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia predominate in young Aboriginal people highlighting underlying racial and equity issues.  This article focuses on the perceptions of the disease among young Aboriginal people living in remote Australia. Participant understanding was constrained by clinicians’ use of language rooted in biomedicine and delivered through English, a second language for all participants. Clinicians’ communicative competency is a social determinant of Aboriginal health. We recommend that the use of Aboriginal languages be prioritized in health services caring for Aboriginal people and that biomedical dominance in the services be relinquished.

Unintentional Injury, Supervision, and Discourses on Childproofing Devices

Amy Dao, Juliet McMullin

Unintentional injury prevention research focuses on parental supervision as critical to reducing toddler injury. We examine how the promotion of childproofing—as a mode of supervision—sells mothers “peace of mind” while also increasing “intensive mothering” and the “privatization of risk.” Drawing on the childproofing literature and meaning centered interviews with mothers of toddlers and childproofing business owners, we argue that the connection made by these groups between childproofing and “good parenting” ultimately obscures how this form of harm reduction economically and socially individualizes responsibility for child care.

 

Articulating Sensory Sensitivity: From Bodies with Autism to Autistic Bodies

Ben Belek

Drawing on ethnographic evidence from several communities of autistic adults in the UK, I explore the crucial role of the body and the senses in the enactment of autistic subjectivities. Following their initiation into autism-related social groups, members begin using such concepts as triggers, overload, shutdown, and meltdown to refer to their bodily experiences of distress. They then face the task of investing these ambiguous concepts with meaning, through nurturing an increased awareness to their body’s relationship with its material surrounding. This cultivation of sensitivity ultimately culminates in the transformation of their bodies into what might be termed autistic bodies.

 

Time and Personhood across Early and Late-Stage Dementia

Iben M. Gjødsbøl,  Mette N. Svendsen

How do time and personhood become related when dementia sets in? This article brings together ethnographies from a memory clinic and a dementia nursing home in Copenhagen, Denmark, pursuing how personhood and time become intertwined across early and late-stage dementia. In the memory clinic, the dementia diagnosis is enacted and experienced simultaneously as an indispensable prophecy of discontinuity of personhood and life for the patients, and as a prognosis that renders the future indeterminate and open to intervention. In the nursing home, institutionalized care marks the fulfillment of the prophecy of decline, yet nursing home staff insist on practicing prognoses for the residents. Across our empirical sites, we enquire what the tension between prophecy and prognosis mean for personhood and the possibilities of the present, arguing that people with dementia are made and unmade through different understandings and enactments of future-oriented temporalities.

Wandering in Dementia and Trust as an Anticipatory Action

Sebastian J. Moser

The increase of dementia makes cognitive disorder a global challenge. Even if wandering is not a symptom of dementia in general, professionals and scientists dominate the definition of wandering as an aimless movement of people with cognitive impairment, mainly dementia. In consequence, professional types of wandering management were elaborated trying to avoid or replace it. However, this can cause negative effects. The article analyses an apparently common informal type of wandering management. It consists of slipping an address paper in the wallet of the ill person. The analysis reveals that this practice is normatively structured by a gift of trust.

Dementia Care Work in Singapore: Embodied Relations and Power Dynamics

Junbin Tan

Based on research at a dementia day-care center in Singapore, I discuss how embodied care relations proceed amidst cultural expectations on aging, dementia, and care work. Engaging with approaches that conceptualize “care” as either empathy or control, I argue that care between older people with dementia, their families, and care workers can be understood as a reiterative, dialogic process whereby care participants strive to keep pace with each other, however briefly, due to cognitive decline, care workers’ own limitations, and particular family difficulties. Care vacillates between practices of control, surveillance, and recognition, and comprises dynamic rather than enduring power relations.

Accumulation by Dispossession and Public–Private Biomedical Pluralism in Romanian Health Care

Sabina Stan, Valentin-Veron Toma

Neoliberal reforms in health care are an accumulation by dispossession. In examining this in Romania, we show that neoliberal reforms led to an uneven landscape of public and private care. We document how patients variously situated in Romanian society respond to this situation, and demonstrate the instability of their strategies—restraining from formal care, lifting-off from public care and hooking-up to private care. Public–private biomedical pluralism proves to be detrimental to vulnerable and better-off patients alike.

The Winners of Socialism: Fighting Infertility in Pronatalist Romania

Cristina A. Pop

Drawing from interviews and life histories, I consider the singular reproductive trajectories of women who fought infertility during the enforced pronatalist policies of the late communist era in Romania. I aim to explore the role of fine-grained ethnography in revealing both the localized mechanisms of reproductive governance and the diverse subjectivities produced by citizens’ encounters with biopower. I argue that, through an analysis of these ethnographic cases, we can further conceptualize reproductive vulnerability as an intersubjective notion. In addition, women’s atypical stories give us a glimpse into the typical workings of the recording and reporting practices of the pronatalist regime.

 

Science, Technology, and Human Values

(Re)Producing Cyborgs: Biomedicalizing Abortion through the Congressional Debate over Fetal Pain

Ashlyn Jaeger

The scientific and political debate over whether a fetus can experience pain highlights a vital and controversial boundary for governance—the boundary of human life. I use the 2012 and 2013 US federal debates over twenty-week abortion bans (also known as fetal pain laws) to investigate how personhood is constructed in a society transformed by biomedical science and technology in the United States. Although those who support and oppose the bill take different stances on abortion regulation, each relies on biomedical knowledge and risk assessment to substantiate claims. Through content analysis of congressional documents, I find that members of Congress strategically draw on biomedical discourse to manage the boundaries of bodies and construct a universal “at-risk” political subject in need of governmental protection. These findings bring scholarly debates about personhood into the era of biomedicalization by emphasizing the latent process of creating a hybridized subjectivity that I call cybernetic personhood.

 

Pink and Blue: Assemblages of Family Balancing and the Making of Dubai as a Fertility Destination

Charlotte Kroløkke,Filareti Kotsi

Selective reproductive technologies (SRTs), such as preimplantation genetic diagnosis, enable enhanced clinical success rates, create reproductive choices, and produce new commercial opportunities. Drawing upon empirical material acquired during a ten-month period in 2016, this study uses a total of twenty-two in-depth interviews with doctors, CEOs, clinical directors, marketing directors, patient counselors, and embryologists to discuss how traveling for the SRT of gender selection for nonmedical reasons is mediated by fertility clinics and clinicians in Dubai. Multimodal analysis was used to analyze the clinical websites’ key rhetorical and visual features. Meanwhile, interviews and observational studies highlighted the context within which gender selection takes place. Findings revealed that gender selection is promoted as a form of “enhancement” and “family balance,” which, when combined with the ways that Dubai is assembled as a sensory (fertility) tourist destination, routinize SRTs and lead to an understanding of gender selection as not merely an individualized reproductive journey but an optimization of the family unit.

 

Social Science & Medicine

Resilience capacities of health systems: Accommodating the needs of Palestinian refugees from Syria (open access)   

Alameddine, Fouad M. Fouad, K. Diaconu,Z.Jamal, G.Lough,S.Witter, A. Ager

Resilience is increasingly recognised as a key process mitigating the impact of shocks and stressors on functioning. The literature on individual and community resilience is being extended to address characteristics of resilient service delivery systems in contexts of adversity. The validity and utility of a capacity-oriented resilience framework (including absorption, adaptation and transformation) is examined with respect to the functioning of United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) health systems in Lebanon and Jordan in the context of the Syrian crisis. We completed 62 semi-structured interviews (30 in Lebanon in November–December 2016, and 32 in Jordan in January 2017) with professionals at primary care, area, and country management levels. Participants reflected on changes in population health status and health service delivery during the Syrian crisis, notably with respect to the influx of refugees from Syria. Interviews were analysed through inductive thematic analysis and used to critically interrogate health systems resilience against a pro-capacities framework. We find that UNRWA systems in Lebanon and Jordan were broadly resilient, deploying diverse strategies to address health challenges and friction between host and refugee populations. Absorptive capacity was evidenced by successful accommodation of increased patient numbers across most service areas. Adaptive capacities were reflected in broadening of collaboration and reconfiguration of staff roles to enhance service delivery. Transformative capacities were demonstrated in the revision of the service packages provided. While manifest as technical capacities, these clearly drew upon solidarity and commitment linked to the political context of the Palestinian experience. The study adds to the limited literature on health system and organizational resilience and indicates that capacity-oriented framings of resilience are valuable in extracting generalizable lessons for health systems facing adversity. The proposed resilience framework promises to guide strategies for sustained care delivery in these contexts.

 

Demarcating the dirty work: Canadian Fertility professionals’ use of boundary-work in contentious egg donation

Skye A.Miner

The potential medical risks to egg donors, in addition to the concern over the commodification of life, has led to debates surrounding the ethics of paying donors. In Canada, payment for eggs is prohibited by law; however, what is considered payment is contentious and has yet to be defined. The lack of legislative clarity coupled with increased ethical concerns over paying a donor has shifted egg donation from a medically-controlled procedure to a legal and social endeavor involving multiple professionals. Through semi-structured interviews with 52 medical and non-medical fertility practitioners, I show how medical practitioners use boundary-work to remove their practice from the ethical and legal debates surrounding egg donation, the “dirty work”. I examine how the medical profession relies on discourses of “practicing science” to present their work as favorable and removed from current debates and potential legal ramifications. In showing how medical practitioners rely on boundary-work to distinguish their work from non-scientific and non-medical activities, I expand Gieryn’s original conceptualization of boundary-work to demonstrate how medical practitioners can selectively draw on their practice of science to remove their work from ethically and legally contentious issues, the dirty work.

 

Emigration and alcohol consumption among migrant household members staying behind: Evidence from Kyrgyzstan

Sara Paulone, Artjoms Ivlevs

Despite the growth of alcohol consumption and international migration in many developing countries, the links between the two remain under explored. We study the relationship between emigration of household members, receiving remittances (migrant monetary transfers), and alcohol consumption of migrant household members staying behind in Kyrgyzstan, a poor post-socialist country that has recently witnessed both large-scale emigration and a rise in alcohol-related health problems. Using a large longitudinal survey, we find that, among the ethnic majority (Kyrgyz), an increase in migrant remittances is associated with a higher likelihood and frequency of consuming alcohol, as well as an increase in the consumption of beer. Among ethnic Russians, the emigration of family members who do not send remittances back home is associated with an increased likelihood and frequency of alcohol consumption. We discuss possible mechanisms through which emigration and remittances may affect the alcohol consumption of those staying behind, including the relaxation of budget constraints and psychological distress. Overall, our findings suggest that the emigration of household members contribute to a greater alcohol consumption among those staying behind, and highlight the role of remittances and cultural background in understanding the nuances in this relationship.

 

Sociology of Health and Illness

Health information work and the enactment of care in couples and families affected by Multiple Sclerosis

Fadhila Mazanderani, Nicholas Hughes, Claire Hardy, Elizabeth Sillence, John Powell

Given the considerable emphasis placed on informed choice, the management of health information has become an increasingly important part of living with chronic illness. This paper explores the intra‐familial dynamics of managing health information in the context of chronic illness. Drawing on 77 interviews with people affected by Multiple Sclerosis in the UK (patients, partners, family members and close friends), we show how families develop their own idiosyncratic information practices, including the careful, at times strategic, seeking, sharing and withholding of information. We describe how one individual, most commonly either the patient or their partner, often takes primary responsibility for managing growing quantities of health information. Doing this is a complex task, yet its dynamics within the family unit remain invisible and unacknowledged. In this paper we: (a) stress the importance of understanding information management in chronic illness as a collective process across all those affected, patients as well as carers; (b) conceptualise the process of managing health information in this context as ‘health information work’; and (c) analyse it as part of the wider care practices families engage in and as a form of care in its own right.

 

“Cloud chasers” and “substitutes”: e‐cigarettes, vaping subcultures and vaper identities

Rikke Tokle, Willy Pedersen

The use of e‐cigarettes is increasing, a practice denoted as vaping. We explore user motives, self‐identity as vapers and involvement in vaping subcultures, drawing on sociological theory of stigma, subcultures and symbolic boundaries. Based on analyses of semi‐structured interviews with 30 Norwegian vapers, we find that there is a vaping subculture in Norway. We identify two dominant vaper identities. The first is labelled cloud chasers. These were dedicated vapers who identified with symbols and values in the subculture. Many were politically engaged in improving vaping regulation regimes and felt a sense of belonging to a vaping community. The second group is labelled substitutes. These were former daily smokers who used e‐cigarettes for smoking cessation in a more pragmatic and defensive manner, to avoid health risks, to escape the stigma of smoking and to manage nicotine addiction. In this group, self‐identity as a vaper was generally lacking. Vaping was often symbolically linked to the stigmatised smoker identity they wanted to escape, and was restricted to private contexts. The perceived symbolic meaning of e‐cigarettes varies: for some, they are a symbol of pleasure and community. For others, they connote the stigmatised status of the addicted smoker seeking an alternative to cigarettes.

 

Community‐consumerism: negotiating risk in online drug communities

Ola Røed Bilgrei

This study explores the social organisation of risk within online drug‐related communities. Drawing on in‐depth interviews with participants from two Norwegian Internet drug forums, the paper illustrates how participation in such forums influenced notions of risk, and how it supported notions of participants as being informed, responsible and empowered. First, the forums facilitated an easy exchange of user‐generated drug information, which helped members present themselves as informed and competent. Second, members used the communal resources on the forums to negotiate their drug‐using identities, in which they resisted stigma and argued for a responsible drug‐using identity. Third, the social inclusion and sense of community within the forums formed the basis for collective support, which helped empower those involved. Conceptualised as community‐consumerism, these findings highlight the social mechanisms involved in the information self‐sufficiency and decentralisation of authority on the Internet, in which members created an alternative frame of reference for drug use and associated health. The concept of community‐consumerism offers a perspective on the social organisation of risk within online communities and ought to be of relevance for future studies on online health‐related discourses, not only those related to drugs.

 

Therapeutic citizens and clients: diverging healthcare practices in Malawi’s prenatal clinics

Amy Zhou

This article examines how HIV policies and the funding priorities of global institutions affect practices in prenatal clinics and the quality of healthcare women receive. Data consist of observations at health centres in Lilongwe, Malawi and interviews with providers (N = 37). I argue that neoliberal ideology, which structures the global health field, produces a fragmented healthcare system on the ground. Findings show two kinds of healthcare practices within the same clinic: donor‐funded NGOs took on HIV services while government providers focused on prenatal care. NGO practices were defined by surveillance, where providers targeted pregnant HIV‐positive women and intensively monitored their adherence to drug treatment. In contrast, state‐led practices were defined by rationing. Government providers worked with all pregnant women, but with staff and resource shortages, they limited time and services for each patient in order to serve everyone. This paper builds on concepts of therapeutic citizenship and clientship by exploring how global health priorities produce different conditions, practices and outcomes of NGO and state‐led care.

 

How clients solicit medication changes in psychiatry

Galina B. Bolden, Beth Angell, Alexa Hepburn

In psychiatry, practitioners are encouraged to adopt a patient‐centred approach that emphasises shared decision‐making. In this article, we investigate how clients with severe mental illnesses (e.g. schizophrenia) advocate for their treatment preferences in psychiatric consultations. The study uses Conversation Analysis to examine audio‐recorded medication check appointments in a comprehensive treatment programme known as assertive community treatment (ACT). The analysis shows that clients solicit medication changes at activity boundaries and design them in one of the following ways: reporting a physical problem; reporting a medication problem; explicitly requesting a medication change; and demanding a change. These formats put pressure on the psychiatrist to respond by either offering a solution to the client’s problem or by accepting or rejecting the client’s request. Through a detailed analysis of clients’ communicative behaviours, we show that, in soliciting a medication change, clients ordinarily respect boundaries of medical authority and present themselves as ‘good’ patients who are reliable witnesses of their own experiences. Overall, the paper advances our understanding of patient advocacy in psychiatry and mental health interactions more generally.

 


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