In the Journals

In the Journals, November 2021, Part 2

Science, Technology, and Human Values

A Science of Hope? Tracing Emergent Entanglements between the Biology of Early Life Adversity, Trauma-informed Care, and Restorative Justice (open access)

Ruth Müller and Martha Kenney

The biology of early life adversity explores how social experiences early in life affect physical and psychological health and well-being throughout the life course. In our previous work, we argued that narratives emerging from and about this research field tend to focus on harm and lasting damage with little discussion of reversibility and resilience. However, as the Science and Technology Studies literature has demonstrated, scientific research can be actively taken up and transformed as it moves through social worlds. Drawing on fieldwork with actors in education and juvenile corrections in the US Pacific Northwest, we found that they employed the biology of early life adversity not only to promote prevention but also to argue for changes within their own institutions that would allow them to better serve children and youth who have experienced adversity and trauma. Our study shows that biosocial narratives are neither inherently liberatory nor inherently oppressive but that the situated narrative choreographies in which they are enrolled are essential for their political effects. In our case, we show how these biosocial narratives have been articulated with knowledge and practices from restorative justice and trauma-informed care to reimagine the social meaning of the biology of early life adversity.

“A Heat Pump Needs a Bit of Care”: On Maintainability and Repairing Gender–Technology Relations (open access)

Mandy de Wilde

As part of current energy transitions in the Global North, households have begun adopting renewable energy technologies, such as heat pumps and solar power systems, in significant numbers. These changes give rise to the following question: how are technology and gender configured when new technologies enter everyday life? Based upon ethnographic fieldwork on interactions between households, technologies, and technicians and interviews with sales technicians, installers, and service mechanics, I demonstrate how both stable and fragile variants of renewable energy technologies are enacted during prepurchase consultations and postpurchase installations, respectively. I employ science and technology studies scholarship, feminist ethics, and repair and maintenance studies—captured through the analytical lens of care—to analyze how technicians mobilize and tinker with gendered affection, knowledge, and action in households to effectuate adoption of renewable energy technologies. I clarify how, in this process, openings are created to configure both hegemonic and heterogeneous gender–technology relations. Finally, I advance discussion beyond gender issues by arguing that acknowledging the role of maintainability and the repair of user–technology relations in current energy transitions opens pathways not only for exploring gender in new and exciting ways in relation to technology but technician–user relationships as well.

Patents as Vehicles of Social and Moral Concerns: The Case of Johnson & Johnson Disposable Feminine Hygiene Products (1925–2012)

Franck Cochoy

This paper is about disposability as a technological concern and about how to trace the related issues through the analysis of patents. It examines how moral and social concerns happened to be embedded (or not) in technology, based on the case of disposable feminine hygiene products. The focus is placed on what “disposable” means and on exploring relative notions as well as their dynamic and consequences. To conduct such analysis, the paper proposes to perform a classic and computer-assisted analysis of the patents published by Johnson & Johnson over almost a century (1925–2012). Tracing social and moral concerns in patents challenges the existing literature in law, which tends to envision patents as legal assets deprived of moral considerations. The paper shows how hygiene products addressed women, how these products were made disposable, and how what disposability means evolved, both in the heart of technology and in the wider space of “concerned” markets.

Science, Technology, and Society

Technological Adoption as a Social Process in Food Centres in Singapore

Nilanjan Raghunath

Technological advancements in the digital economy have affected work cultures and labour displacements. Technological adoption is a highly social process, which involves resistance and failure to adapt by individuals in the midst of it. Therefore, there is a need to understand the everyday experiences of individuals who are impacted by technological changes in their work practices. Through ethnographic accounts of five field sites, this article aims to examine the effects of technology on work cultures in food centres in Singapore. Food centres were observed to be heavily dependent on complex human interactions, which often hindered technological implementations that were meant to simplify work processes. Nonetheless, the challenges can be mitigated through consultations with relevant social groups to improve technological incorporation.

Society and Mental Health

A Mixed-method Study of the Effects of Post-migration Economic Stressors on the Mental Health of Recently Resettled Refugees

Jessica Goodkind, Julieta Ferrera, David Lardier, Julia Meredith Hess, and R. Neil Greene

After years of emphasis on pre-migration trauma as the major determinant of refugee mental health, researchers have begun to explore the effects of post-migration stressors on refugees’ distress. However, few studies have brought together refugees’ emic understandings of the effects of economic stressors on their mental health with quantitative data sets to further explore the salience of stress processes as an explanatory mechanism. In qualitative interviews, 41 percent of 290 recently resettled adult refugees noted that economic stressors were a major source of distress and described pathways through which these stressors negatively influenced their mental health by limiting their ability to learn English, obtain meaningful employment, access health care, maintain contact with their families, and integrate into their communities. In structural equation modeling of quantitative data, we tested several possible hypotheses that emerged from the qualitative findings. We find that post-migration economic stressors mediated the relationship between migration-related trauma and post-migration emotional distress and post-traumatic stress disorder (PTSD) symptoms. These findings provide empirical support for stress proliferation as a mechanism through which trauma exposure contributes to distress.

Social Science & Medicine

“How can we make it work for you?” Enabling sporting assemblages for disabled young people

Penelope Carroll, Karen Witten, & Cameron Duff

Disabled young people have lower levels of participation in community life than nondisabled peers across a number of domains, including sporting activities, with profound implications for health, wellbeing and life course opportunities. Playing sport is a defining feature of identity for many young people in Aotearoa/New Zealand. Participation in sporting activities provides opportunities to develop competencies, to have fun and to compete, while also providing a sense of inclusion and peer group belonging. However, despite policies promoting inclusion of disabled young people in school and club sport, ableist attitudes and practices still function to exclude individuals who do not fit able-bodied norms. Drawing on recent ‘assemblage thinking’ in health and cultural geography, this paper explores the material, social and affective dimensions of ‘enabling’ and ‘disabling’ sporting assemblages, drawing on interviews with 35 disabled young people (12–25 years), parents and key informants. Many reported instances of demoralising exclusion in mainstream sporting activities. Some turned to adaptive sporting codes, designed for inclusion. In our exploration of participants’ embodied experiences of enabling and disabling assemblages we employ assemblage theory to examine how social, affective and material forces and processes converge to either enable or constrain participation in local sporting activities. We close with a brief assessment of the implications of our analysis for ongoing efforts to promote inclusion for disabled youth in physical activity.

Ageing as well as you can in place: Applying a geographical lens to the capability approach (open access)

Hannah Grove

Despite policy commitments to support ageing in place, we know very little about the everyday realities and experiences of older people living in different environmental circumstances, with varying personal capabilities. This paper: 1) examines the valued place-based functionings of older people through the use of geo-spatial and in-situ methods, where functionings are defined as states of being and doing, and place-based functionings are defined as places, activities, interactions, routes, and routines that support these beings and doings; and 2) demonstrates the utility of a capability approach by amalgamating the interconnected concepts ‘ageing in place’ and ‘ageing well’.

Three in-depth individual experiences of ageing at home in a Dublin (Ireland) suburb show how differing health and mobility challenges are managed, and illustrate how conceptions of ageing well in place can be identified from geographically-grounded lifeworlds. Participants’ place-based functionings are identified by combining qualitative and geo-spatial approaches through the use of annotated maps, using data obtained from traditional interviews, go-along interviews, and mapping exercises. Results demonstrate the diversity of place-based functionings valued by each individual, and how functionings are negotiated depending on different needs, wishes, and health or mobility challenges. Results also highlight the importance of supportive environments and social supports in enabling older people to realise their most valued functionings over time, which include being able to get out and about, engage and connect with others, carry out daily tasks and errands confidently, and remain independent.

By paying attention to subjectively valued place-based functionings, as well as the specific supports required to sustain them, we can facilitate older people to not just age in place, or age well, but to age – as well as they can – in place.

Unsettling Place(s) at the end of life

Aileen Collier and Alex Broom

Critical considerations of space and place at the end of life have been limited in the social science literature. To address this gap, we draw on empirical data from two interrelated but separate qualitative Australian data sets to critically examine dying in relation to considerations of space, place and affect. These studies share the primary aim to better understand and articulate end-of-life experiences, with one using video reflexive ethnography and the other semi-structured interviews with patients. Challenging the broader valorisation of particular places of dying and death (e.g. home, hospice, hospital), we critically explore the meanings and affects of space and place and how they are rooted in normative expectations. Drawing on participant accounts we interrogate simplistic concepts of home versus hospice, or hospital versus community, developing a critical social science of the intersections of space and place at the end of life.

The influence of peer relationships on young people’s sexual health in Sub-Saharan African street contexts (open access)

Janine Hunter, Lorraine van Blerk, Wayne Shand

This paper explores the interaction between peer relationships and sexual health among street youth in three Sub-Saharan African cities: Accra (Ghana), Bukavu (Democratic Republic of Congo), and Harare (Zimbabwe). It begins by conceptualising peer relationships for youth globally and considers why these are pivotal for young people living in street settings. The paper reconceptualizes street peer relationships not as replacement families, but as sharing ‘social anchorage’ in the street space. It draws on qualitative ethnographic data from Growing up on the Streets, a longitudinal research project with a participatory methodology undertaken between 2012 and 2016 and engaging street youth (aged 14–20 at project outset) trained in ethnographic observations as research assistants (n = 18), following a network of ten peers (n = 229 by 2016), reporting their experiences in weekly interviews with facilitators. A wider network attended focus groups (n = 399). The project engaged a ‘capability’ approach, with ten capabilities defined by street youth as key to their daily lives. Empirical evidence is from a subset of data qualitatively coded (using NVivo) against capabilities ‘Health and Wellbeing’ and ‘Friendship’, across all interviews, focus groups and cities (n = 212 sources). In exploring this intersection, the paper demonstrates beneficial and adverse impacts of peer influence on sexual health, including misinformation about contraceptives and death from an informal sector abortion; highlighting findings from across the three cities around primacy of same-sex peer relations, mistrust between genders and in healthcare providers. The paper finds that while street youth remain subject to cultural norms around gender identities, street peer relationships hold a persuasive power; contributing to both everyday survival and moments of acute need. It concludes that recognising the right of young people to live and seek livelihoods in urban settings, and adopting the social networks they create to advance street youth’s sexual health has become even more relevant in a (post)pandemic world.

The ruling of weight: An institutional ethnography investigating young people’s body weight surveillance work

Alexa R. Ferdinands, Tara-Leigh F. McHugh, Kate E. Storey, Kim D. Raine

Rationale

Dominant framing of childhood obesity as a public health burden has increased weight stigma towards young people in larger bodies. However, weight stigma literature is generally limited by its focus on individuals’ attitudes and beliefs, overlooking the broader social conditions shaping stigma. Further, few weight stigma studies have been conducted from young people’s standpoint; little is known about how they navigate stigmatizing environments while growing up.

Objective

This study aimed to examine the social organization of young people’s everyday work of growing up in a larger body, interpreting work generously as any activity requiring thought and intention.

Methods

Using institutional ethnography, we conducted individual interviews in Alberta, Canada with 16 informants aged 15–21 who grew up in larger bodies. Five, repeated group interviews were then held with a subset (n = 5) of these informants.

Results

Weight surveillance work (e.g., self-weighing on scales, social comparison) was informants’ most common form of weight-related work while growing up. Surveillance results instructed them on next steps, whether that be working to fit in (literally and figuratively) or resisting social conformity altogether. Informants’ bodies were monitored by nearly everyone around them: family, peers, educators, and healthcare providers. Informants learned how and why to do the work expected of them through social relations. Despite their (mostly) good intentions, surveillance by respected adults conveyed to informants that their self-worth depended on their weight. Biomedical, individuated health and weight discourses guided the enactment of institutional policies and practices in healthcare and education, such as those related to the Body Mass Index. These ruling discourses objectified bodies as normal or abnormal, healthy or unhealthy, good or bad.

Conclusion

Overall, study findings show how young people’s experiences of growing up in their bodies were predictably organized by dominant weight and health discourses, identifying possible levers for public health intervention.

Pathogenic camps, therapeutic city? Roma, healthcare, and the negotiation of citizenship rights in Rome

Lorenzo Alunni

While equality in healthcare implementation constitutes one of the precepts of the European Roma inclusion programs, health disparities are still one of the most problematic areas contributing to the marginality of residents in ‘Roma camps’. The implementation of the right to health and access to healthcare services and resources represents a major challenge in their everyday experience. If we consider citizenship as a set of natural and legal rights to be protected as a symbolic and material link between a nation-state and a subject either born there or formally belonging to its national community, healthcare emerges as a technology of government where such rights are challenged, limited, or denied. Based on an ethnographic work on the role of public healthcare in ‘Roma camps’, this contribution focuses on contemporary topographies of health in the city of Rome through the lens of Roma marginalization within its urban spaces. How do camps residents experience the city through their relationship with its healthcare resources? And how does the healthcare system become a powerful tool of exclusion? Healthcare access in an urban context is an illustration of the dialectics of political power, knowledge, and expertise as a crucial factor in the administration of marginalized groups. From this perspective, the analysis focuses on precarity in the urban healthcare landscape, and on what living in a ‘Roma camp’ means in terms of healthcare. Both dimensions interrogate citizenship as a set of rightful entitlements that includes access to state-provided medical services.

Persistent institutional breaches: Technology use in healthcare work

Athanasia Daskalopoulou & Mark Palmer

Various mobile phone applications (hereafter apps) challenge instituted ways of working in healthcare. This study explores the institutional breaches arising from the use of apps in doctor-patient interactions. This paper argues that institutional breaches, however small, are important occasions for observing the contextual intersections between healthcare, regulation and technology in a hospital setting. Based on healthcare professionals’ normative judgements, the paper offers an empirically grounded understanding of institutional legitimacy-claiming; safeguarding responses deployed by the instituted regime, and the case-building responses deployed by the instituting persuaders. Institutional breach persistence arises from the moral dimension of legitimacy and is grounded in asymmetrical dynamics between two virtuous healthcare narratives. The paper concludes with a discussion of the contextual intersections between healthcare, regulation and technology, paying particular attention to institutional breaches as experimentation, the contestation of normativity and patterns of technology indulgency in healthcare work.

Dropdown rights: Categorizing transgender discrimination in healthcare technologies

Anna Kirkland

This study analyzes how U.S. healthcare organizations implemented legal requirements to treat patients in a manner consistent with their gender identity under Section 1557 of the Affordable Care Act. The ways that healthcare organizations determine gender and track complaints constitute socio-technical systems for compliance, and they shape what discrimination protections look like on the ground. We interviewed grievance handlers about how they use information technologies to process possible civil rights claims from patients and argue that their work demobilizes and erases civil rights, especially claims such as transgender harassment. Mobilized physician-led implementation groups, by contrast, enacted a version of gender identity recognition by tracking identities and bodies in electronic medical records and material objects such as specimen labels. Default structures—the dropdown menus of healthcare software—both shape and are shaped by professional norms, financial incentives, and conceptions of justice and deservingness. These socio-technical structures allow conflicting stories of transgender rights to continue on in different parts of the healthcare organization, making it difficult for law to transform healthcare delivery.

Navigating with logics: Care for women with hypertensive disorders of pregnancy in a tertiary hospital in Ghana (open access)

Asra Vestering, Bregje C. de Kok, Joyce L. Browne, Kwame Adu-Bonsaffoh

This paper explores how care for women with hypertensive disorders of pregnancy (HDP) is practiced in a tertiary hospital in Ghana. Partly in response to the persistently high maternal and neonatal mortality rates in Low- and Middle-income countries, efforts to improve quality of maternity care have increased. Quality improvement initiatives are shaped by the underlying conceptualisation of quality of care, often driven by global (WHO) standards and protocols. However, there are tensions between global standards of care and local clients’ and providers’ understandings of care practices and quality of care. Implementation of standards is further complicated by structural and organisational restrictions that influence providers’ possibilities and priorities. Based on ethnographic fieldwork, we explore how clinical guidelines and professionals’ and patients’ perspectives converge and, more importantly, diverge. We illuminate local, situated care practices and show how professionals creatively deal with tensions that arise on the ground. In this middle-income setting, caring for women with HDP involves tinkering and navigating in contexts of uncertainty, scarcity, varying responsibilities and conflicting interests. We unravelled a complex web of, at times, contradictory logics, from which various forms of care arise and in which different notions of good care co-exist. While practitioners navigated through and with these varying logics of care, the logic of survival permeated all practices. This study provides important initial insights into how professionals might implement and innovatively adapt the latest quality of maternity care guidelines which seek to marry clinical standards and patients’ needs, preferences and experiences.

“Reflection and soul searching”: Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying

David Kenneth Wright, Lisa S. Chan, Jennifer R. Fishman, Mary Ellen Macdonald

Authorities within the field of palliative care frequently espouse that assisted death is – and must remain – separate from palliative care. This fault line, between palliative care and assisted death, has important implications for how we enact end-of-life care, particularly in jurisdictions where assisted death is legal. And yet little is known about how direct-care clinicians providing palliative care navigate this demarcation in everyday practice. This qualitative study reports on semi-structured interviews with 22 palliative care nurses from across Canada, where assisted death was legalized in 2016. Although a minority of participants did express categorical opinions around the (non) legitimacy of assisted death as an ethical end-of-life care option, most engaged in an ongoing and sometimes painful process of questioning and self-examination. Their ethical reflections were more nuanced than simply dismissing MAiD as incompatible with palliative care philosophy; yet this idea of incompatibility weighed heavily as they reasoned through their experiences and questioned their own perspectives. Nurses described grappling with the finality of assisted death, which contradicts their belief in the telos of palliative care; when adequately resourced, palliative care should be available to support people to live well before death. At the same time, commitment to important palliative care values such as the non-abandonment of dying people and respecting peoples’ individual end-of-life choices reveal the possibility of overlap between the ethos of assisted death and that of palliative care nursing. Drawing on scholarship in feminist ethics, our study sheds light on the moral identity work that assisted dying catalyzes amongst palliative care nurses. We highlight what is at stake for them as they navigate a delicate tension in responding ethically to patients whose suffering motivates an interest in assisted death, from within a wider professional collective that upholds a master narrative about the incompatibility of assisted death and palliative care.

​​“A country boy can survive:” Rural culture and male-targeted suicide prevention messaging

Rebecca Ewert

The low rate of help-seeking and high rate of suicide completion among men has prompted public health officials to create suicide prevention campaigns that specifically target men. Drawing from data collected as part of a larger study of fire recovery in a rural county in Northern California, this paper utilizes 68 interviews with fire survivors (24 men and 44 women) and 40 interviews with mental health service providers to examine how rural residents interpret this type of campaign. To track patterns of help-seeking over time, I also draw upon 26 follow-up interviews – 20 with fire survivors (7 men and 13 women) and 6 with service providers – conducted one year after the first wave of interviews. In total, 134 in-depth interviews were conducted. This paper also draws on a secondary data source; I conducted content analysis of an internal Health and Human Services Agency focus group report used in the development of a local male-targeted suicide prevention campaign, Captain Awesome. As I show, male-targeted suicide prevention efforts have little salience in rural communities in which treatment resources are limited and stigma abounds. Perceptions about material conditions – i.e., treatment resources being few and far between – contribute to residents establishing a norm of not seeking help. Rural culture which emphasizes self-sufficiency and independence contributes to a pattern of both men and women repeating a narrative that frames men who seek help as weak. While research has identified women as key drivers for men’s physical health maintenance, my research suggests that the same pattern might not hold around mental health maintenance in rural settings. In sum, I argue that male-targeted campaigns have limited resonance and efficacy in rural communities where material conditions and cultural narratives create physical and psychological barriers to accessing to treatment.


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