Risk and preventing perinatal HIV transmission: uncovering the social organisation of prenatal care for women living with HIV in Ontario, Canada Allyson Ion , Saara Greene , Christina Sinding & Daniel Grace
This paper presents an institutional ethnography that explored how risk discourse organised the experiences of pregnant women living with HIV and was reproduced in the work of healthcare providers operating in a ‘high risk’ prenatal clinic in Ontario, Canada. This inquiry began from the standpoint of pregnant women living with HIV, and made connections between women’s experiences, the work of healthcare providers delivering prenatal care, and the ruling relations that organised women’s experiences and healthcare providers’ activities. The study revealed how risk was an omnipresent discourse in women’s lives and became visible through the treatments women were prescribed, the prenatal clinic appointment schedule women were expected to follow, and the application of medical interventions. The discourse of risk coordinated the work of healthcare providers and was inextricably linked to practices that prioritised foetal health. Women’s daily realities and experiences were overshadowed by the healthcare providers’ focus on the foetus and mitigating perinatal risks. As a result, the work women did to organise their lives to participate in care, and the physical and emotional costs they experienced when attending their appointments, taking their medicines, and following clinical procedures were overshadowed within an institutional context where the primary goal was to reduce risks to their babies – even if women shared concerns and aspirations about preventing perinatal HIV transmission. Women’s experiences reveal some important consequences regarding the current organisation of prenatal care that emphasises risk and possible ways to enhance prenatal care policies and practices.
Stakeholders’ perspectives about the impact of training and sensitization of traditional and spiritual healers on mental health and illness: A qualitative evaluation in Ghana
Peter Badimak Yaro, Emmanuel Asampong, Philip Teg-Nefaah Tabong, Sunday Atua Anaba, Sandow Stanislaus Azuure, Adam Yahaya Dokurugu, Fredrick Aminu Nantogmah
Prayer camps and traditional healers have emerged recently as alternative sources of mental health care in Ghana. To increase their knowledge and collaboration between formal and informal mental health care providers, training and sensitization was organized for them. This study aimed at assessing beneficiaries’ views about the impact of this intervention. We adopted narrative approach to qualitative enquiry using purposive sampling strategy to recruit formal and informal mental health care providers in Ghana for an in-depth interview. We analyzed the data thematically using QSR NVivo 12. Participants enhanced their knowledge about mental health and illness. They reported increased collaboration between formal and informal health care providers. Community psychiatric nurses (CPNs) give injections to patients instead of chaining and using shackles as was initially practiced. There are also regular visits by CPNs to traditional and spiritual healers to discuss the care of the mentally ill patients in their facilities. There has been an increased collaboration among healers of mental illness resulting in quick recovery of patients who seek care at traditional and spiritual healers. There is also abolition of chaining and using of shackles by these healers, with increasing respect for the human rights of patients.
How can today’s substance-using youth be helped to quit? Perspectives of college students from Bangalore, India
Padmavathy Doraiswamy, Prasanthi Nattala, Pratima Murthy
Substance use among college students is increasing, yet research regarding their viewpoints on how they can be helped is sparse in India. The purpose of this study was to explore in depth the perspectives of college students as to how college youth can be helped to quit the use of psychoactive substances. Data from focus group interviews with 38 adolescent college students were analyzed qualitatively to identify their viewpoints on how today’s college youth can be helped to quit substance use. Interviews were transcribed verbatim, themes and subthemes were identified. Three major themes (with subthemes) were identified: (1) Patterns of use (commonly used substances, methods of using), (2) Perceived reasons for use (to reduce negative emotions, academic pressure, peer influence, more freedom, rebellious attitudes, media influence, modeling effect, childhood trauma, distrust from family/friends, lack of knowledge regarding the adverse impact of substances, poor life skills, cultural gender-based discrimination) and (3) Interventions needed to help college youth to quit substance use (need for interventions, basic principles to follow when developing interventions, content to be included, methods to be employed for delivering the intervention). The information from this study can guide the development of a comprehensive intervention that is relevant and tailor-made to the specific needs of the college student population.
This article deals with choice-inducing algorithms––algorithms that are explicitly designed to affect people’s choices. Based on an ethnographic account of three Israeli data analytics companies, I explore how algorithms are being designed to drive people into choice-making and examine their co-constitution by an assemblage of specifically positioned human and nonhuman agents. I show that the functioning, logic, and even ethics of choice-inducing algorithms are deeply influenced by the epistemologies, meaning systems, and practices of the individuals who devise and use them and that such algorithms are similarly affected by interorganizational relationships, various nonhuman agents, and changing geopolitical contexts. I conclude by discussing the flexibility of choice-inducing algorithms and by arguing that such algorithms are not programmed to induce specific choices but to more generally convert people into choosers, and thus, to algorithmically (re)create the modern need to choose. This article contributes to the growing literature on algorithms and culture and to our understanding of choice-making in contemporary life. At the same time, it provides a new vocabulary that offers to critically engage with algorithms and their power without losing sight of the often very specific contexts from which they arise.
Drones deployed to monitor endangered species often crash. These crashes teach us that using drones for conservation is a contingent practice ensnaring humans, technologies, and animals. This article advances a crash theory in which pilots, conservation drones, and endangered megafauna are relata, or related actants, that intra-act, cocreating each other and a mutually constituted phenomena. These phenomena are entangled, with either reciprocal dependencies or erosive entrapments. The crashing of conservation drones and endangered species requires an ethics of care, repair, or reworlding. Diffractions, disruptions that expose difference, result from crashes and reveal the precarious manner by which technologies, laws, and discourses bring nature and culture together. To support crash theory, this article presents three ethnographic cases. A drone crash in the United Kingdom near white rhinoceroses while building machine learning training data exhibits the involvement of the electromagnetic spectrum; the threat of crashes in the Pacific Northwest near Puget Sound orcas discloses the impacts of drone laws; and drone crashes in Sri Lanka among Asian elephants presents the problems of technoliberal ideals around programming natural worlds. Throughout the article, a methodology is developed, parallelism, which attends to the material similarities in lateral phenomena.
Neighbourhoods as relational places for people living with dementia (open access)
Andrew Clark, Sarah Campbell, John Keady, Agneta Kullberg, Kainde Manji, Kirstein Rummery, Richard Ward
An increase in the number of people living independently with dementia across the developed world has focused attention on the relevance of neighbourhood spaces for enabling or facilitating good social health and wellbeing. Taking the lived experiences and daily realities of people living with dementia as a starting point, this paper contributes new understanding about the relevance of local places for supporting those living with the condition. The paper outlines findings from a study of the neighbourhood experiences, drawing on new data collected from a creative blend of qualitatively-driven mixed methods with people living in a diverse array of settings across three international settings. The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 nominated care-partners. It demonstrates how neighbourhoods are experienced as relational places and considers how people living with dementia contribute to the production of such places through engagement and interaction, and in ways that may be beneficial to social health. We contend that research has rarely focused on the subjective, experiential and ‘everyday’ social practices that contextualise neighbourhood life for people living with dementia. In doing so, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.
Public health scholars classify gay men as “men who have sex with men (MSM)” in their studies and interventions. Debates have been raised about the MSM classification for decades. However, we know little about how people who are classified as MSM perceive and respond to this classification, particularly in the authoritarian context where the biopower interacts with the repressive state power. Drawing upon Ian Hacking’s dynamic nominalism theory, this study tries to fill these gaps with interviews of 40 gay men in three Chinese cities about their interactions with public health education materials. I examined their perceptions of MSM knowledge and discourses associated with the classification, as well as their identifications to the MSM subject. I found that, on the one hand, many gay men had internalized the MSM subjectivity and considered themselves essentially at high risk of HIV infection. This compliance was constructed through various biopower techniques with the support of the state’s repressive power, as the Chinese state censored almost all public representations of gay men except the HIV/AIDS subject MSM. On the other hand, some of my interviewees were resistant to be part of the MSM classification. I showed how this failure is an unintended consequence of the hegemonic MSM discourse and the authoritarian regime’s institutional exclusion of the gay men’s community’s engagement in the expertise network that develops intervention materials and strategies. At last, I proposed to move beyond the debate around the name and representational character of the MSM by moving toward a more reflexive public health.
How women make decisions about care-seeking during pregnancy and childbirth, is a key determinant of maternal and child health (MCH) outcomes. Indigenous communities continue to display the highest levels of maternal and infant mortality in Mexico, a fact often accounted for by reference to inadequate access to quality services. A growing body of research has identified gender inequality as a major determinant of MCH, although this has rarely been situated historically in the context of major social and epistemological shifts, that occurred under colonialism. I used a feminist ethnography to understand the structural determinants of Indigenous maternal health. I drew on research about the colonial and post-colonial origins of ethnic and gender inequality in Mexico and specifically the Wixárika Indigenous region, in order to identify the different ways in which women have historically been disadvantaged, and the processes, situations and interaction dynamics that emerged from this. Sixty-four Wixárika women were interviewed while pregnant, and followed up after the birth of their child between January 2015 and April 2017. These data were triangulated with structured observations and key informant interviews with healthcare providers, teachers, community representatives and family members. The findings suggest that gender inequalities were introduced with the colonial system for governing Indigenous regions, and became naturalised as Wixárika communities were increasingly integrated into the Mexican nation. The associated structures of marriage, community and interpersonal relationships now operate as forms of institutionalised gender oppression, to increase Indigenous women’s vulnerability, and influence decisions made about care and childbirth. Ethnographic data analysed in historical context evidence the continuity of colonial forms of inequality, and their impact on wellbeing. While welfare and health programmes increasingly aim to address gender inequality on social and relational levels, by rebalancing gendered household dynamics or empowering women, the historical and colonial roots of these inequalities remain unchallenged.
Accomplishing an adaptive clinical trial for cancer: Valuation practices and care work across the laboratory and the clinic (open access)
Julia Swallow, Anne Kerr, Choon Key Chekar, Sarah Cunningham-Burley
A new generation of adaptive, multi-arm clinical trials has been developed in cancer research including those offering experimental treatments to patients based on the genomic analysis of their cancer. Depending on the molecular changes found in patients’ cancer cells, it is anticipated that targeted and personalised therapies will be made available for those who have reached the end of standard treatment options, potentially extending survival time. Results from these trials are also expected to advance genomic knowledge for patients in the future. Drawing on data from a qualitative study of one such trial in the UK, comprising observations of out-patient clinic appointments, out-patient biopsy procedures, laboratory work, and interviews with practitioners, this paper explores how the clinical and research value of one such trial was accomplished in everyday practice by focussing on the work of clinical trials and laboratory staff across recruitment, laboratory analysis, and results management. In the face of numerous potential set-backs, disappointments and failure, we explore how practitioners worked to balance the need to meet established measures of value such as numbers of patients recruited into the trial, alongside cultivating the value of positive affects for patients by managing their expectations and emotions. This care work was performed primarily by practitioners whose roles have historically been devalued in healthcare practice and yet, as we show, were critical to this process. We conclude by arguing that as complex multi-arm adaptive trials become more commonplace, we need to attend to, and render visible, the dynamic and care-full valuation practices of backstage practitioners through which experimental biomedicine is accomplished, and in doing so show that care both achieves clinical and research value, and is also a series of practices and processes that tends to tissue, patients and staff in the context of ever-present possibility of failure.
Atmospheres of engagement within a German drug consumption room
Tristan Duncan, Bernadette Sebar, Jessica Lee, Cameron Duff
Drug consumption rooms directly attempt to intervene in and govern the place and time of drug use. Whilst the risk-reducing potentials of these interventions have been thoroughly evaluated, the consumption room literature offers fewer insights into the embodied, affective and situated dynamics that underscore service delivery. In this paper, we take up the notion of atmosphere to explore these dynamics in greater depth. Drawing on 12 months of ethnographic research in a German drug consumption room, we describe the manner in which atmospheres came to pervade and condition service encounters. More than simply providing texture to activities within the consumption room, we show how atmospheres gave rise to a distinct range of bodily capacities and therapeutic effects. Critically, these atmospheric affordances exceeded the risk-reducing objectives of the consumption room to encompass an emergent capacity to find repose, enact respite and foster modes of sociality and care. Our analysis further highlights the contextual contingencies through which the atmospheres of the consumption room emerged, including the efforts of both staff and clients to cultivate and control particular atmospheric qualities. We conclude by considering how closer attention to the atmospheric and affective dimensions of service delivery may challenge how consumption room interventions are enacted, valued and researched. This is to gesture towards a novel, atmospheric mode of harm reduction that has effects by transforming embodied potentials for both staff and clients.
Resisting governance and the production of trust in early psychosis intervention
Elaine Stasiulis, Barbara E. Gibson, Fiona Webster, Katherine M. Boydell
Trust is vital in mental healthcare where uncertainty and risk prevail and where relationship building is central to effective service delivery. Despite its significance, research on trust, particularly among multi-disciplinary healthcare teams and between service providers and users is limited and explored only tangentially within early psychosis intervention (EPI) programs. An institutional ethnographic approach is used to examine how trust within an EPI setting is produced and operates. Drawing on participant observation, textual analysis of clinic documents and in-depth interviews with 27 participants (staff, young people and family members), our analysis outlines how the clinic manager’s and staff’s resistance to hospital rulings that impeded EPI policy principles were part of the extended sequence of activities that produced trust. These acts of resistance, alongside the clinic manager’s reflective leadership practices, cultivated spaces for staff to take risks, share their ideas and build consensus – culminating in staff-designed protocols that produced trust among one another, and between service providers and young people and their families. Drawing from Brown and Calnan’s framework of “vicious” and “virtuous” cycles of (dis)trust, we highlight how management and staff responses to vulnerability and uncertainty generated trust through their communication practices and knowledge sharing. We also suggest that protocols to manage the risk of medication non-adherence and treatment dis-engagement among young people contained regulatory functions, pointing to the complex interplay of trust, control and risk. Study implications suggest shifting the emphasis from risk management and quality governance as an organizing framework in mental health to a framework based on trust.
Abrahamic traditions and egg freezing: Religious Women’s experiences in local moral worlds
Marcia C. Inhorn, Daphna Birenbaum-Carmeli, Mira D. Vale, Pasquale Patrizio
In this article, we elucidate how elective egg freezing (EEF) has been received within the three Abrahamic traditions—Judaism, Christianity, and Islam—and how these religion-specific standpoints have affected the EEF experiences of women who self-identify as religiously observant. Through an analysis of religious women’s narratives, the study explores the “local moral worlds” of religious women who chose to freeze their eggs for non-medical reasons. It draws on ethnographic interviews with 14 women in the United States and Israel who had completed at least one EEF cycle, and who were part of a large, binational study that interviewed, between 2014 and 2016, 150 women who pursued EEF. These religious women, who were all highly educated, faced a particular challenge in finding appropriate marriage partners. Feeling pressured but still hopeful to marry and create large families, the women used EEF to extend their reproductive timelines and reduce their anxieties. As the study showed, the women reinterpreted or reconciled religious restrictions on the use of EEF in various ways, believing that their ultimate pursuit of religiously sanctioned reproduction justified the means. This study, which is the first to compare Jewish, Christian, and Muslim women’s experiences of EEF, illustrates how this novel technology is now shaping the local moral worlds of religious women.
Quality metrics in the healthcare sector have become a key component of ensuring improved health outcomes and care equity. Alongside the emergence of information technology in healthcare (eg. electronic health records), the primary method utilized to infer “quality” has been the development of measures for healthcare processes and outcomes. Engaging with the specific case of sepsis treatment and sepsis quality metrics, this paper traces how quality is defined, measured, and codified in a 600-bed acute-care hospital in New York City. Sepsis is a severe health condition, primarily managed in the emergency department, that is caused by infection and can result in multi-organ shutdown and mortality. Multiple government agencies have established metrics that regulate New York hospitals based on their compliance with specific sepsis treatment procedures. I draw on data from a 15-month ethnography and in-depth interviews with clinicians and administrators, to show how quality measurement is reshaping the ways healthcare is delivered and organized. I reveal how, at Borough Hospital, efforts to treat sepsis based on quality metrics have constrained clinician expertise, prioritized compliance, and reoriented workflow towards standardized treatment protocols. This reorientation leads to, what I term abstracted surveillance protocols, that increasingly regulate definitions of healthcare quality. I demonstrate that abstracted surveillance protocols enable highly complex clinical processes to be measured based on metric compliance rather than clinical pathways, therefore moving definitions of quality away from the bedside.
This paper explores the social relations between inpatients in psychiatric wards. Combining Barker’s (2002) concept of ‘collective illness identity’ with Nelson’s (1993) concept of ‘epistemological communities’, I draw attention to the inpatients’ collective identification and experiential knowledge. Through the analysis, three aspects of the inpatients’ relationships are unfolded. First, how the inpatients, through bodily expressions and narrative accounts, construct a collective illness identity based on shared experiences of symptoms and suffering. Second, the ways in which the inpatients use their shared experiential knowledge to support one another and challenge the mental health professionals. Third, how the inpatients’ reflections on the long‐term potential of their relationships reveal a number of concerns related to their continuation. Centrally, the paper points to the potential and challenges that arise from the inpatients’ relations to one another and their embeddedness in a specific time and space. Empirically, the paper draws on five months of participant observation conducted in two psychiatric wards in Denmark and interviews with 14 psychiatric patients.
Changing emotional engagement with running through communal self‐tracking: the implications of ‘teleoaffective shaping’ for public health
Fiona Spotswood, Avi Shankar, Lukasz Piwek
Emerging research explores the role of self‐tracking in supporting healthy behaviour. Self‐tracking comprises a number of interrelated practices; some individual some communal. In this article, we focus on practices that enable interaction between self‐trackers through data sharing and communication around personal data. For public health, communal self‐tracking has been explored for the additional benefits it provides in addition to self‐knowledge. However, under‐explored is the emotional entanglement of self‐tracking and tracked activities, or the role of practitioners in the dynamic evolution of tracked practices. Qualitative, mixed methods data were collected from leisure‐time runners in the SW England who self‐track using social fitness app ‘Strava’, and were interpreted through the lens of practice theory. We find that communal self‐tracking affords the active shaping of the emotion and purpose of running. This ‘teleoaffective shaping’ allows practitioners to negotiate and reconstitute appealing meanings associated with running to protect their practice loyalty. We identify three mechanisms for teleoaffective shaping afforded by Strava: labelling, reward and materialising effort. Findings advance our understanding of how social fitness apps work to retain practitioners of physically active leisure practices. Future research should further explore the multiple ways that associations with tracked physical activity evolve through entanglement with self‐tracking practices.
From more‐than‐human solidarity to multi‐species biographical value: insights from a veterinary school about ethical dilemmas in One Health promotion
Melanie J. Rock, Chris Degeling, Cindy L. Adams
This article features a partnership between a veterinary school and a charity that aims to enhance the wellbeing of low‐income people. Through this partnership, the charity periodically hosts veterinary clinics for clients and their pets. Even as the veterinarians and veterinary students duly examine people’s pets, these pop‐up clinics aim to help people and their pets. Hence our analysis revolves around the ethics of ‘more‐than‐human solidarity’. By ‘more‐than‐human solidarity’, we mean efforts to help others that either center on or that implicate non‐human beings. To delve into the ethical and sociological implications of subsidised veterinary services, and to assist with program planning, we conducted several in‐depth interviews with veterinarians. Most substantively, we found that the veterinary school’s outreach clinics give rise to multi‐species biographical value, which is prized as a pedagogical resource for veterinary students. The veterinarians whom we interviewed felt troubled by the extent to which the pop‐up clinics ultimately benefited the veterinary school, but also by the shortage of subsidised veterinary services in the vicinity. Based on these interviews and our own reflections, we invite more scholarship on cultural, economic and political influences that shape the lives of human beings and non‐human animals alike.
In recent years, increases in medical technologies in the critical care setting have advanced the practice of medicine, enabling patients to live longer while also creating dilemmas for end‐of‐life decision‐making. Clinicians have increasingly been called on to involve patients and family members in decision‐making through a process of shared decision‐making (SDM ), yet less is known about how SDM plays out in the critical care setting and the ways in which clinicians engage in SDM . Using observational data from 14 months of ethnographic fieldwork in two intensive care units and interviews with 33 family members of 25 critically ill patients and 51 clinicians, I explore how clinicians refer to the choices available in medical decision‐making paradoxically as a ‘buffet’ of choice while they simultaneously recognise that such rhetoric is misaligned with complex and emotional decision‐making, often involving pain and suffering. Lastly, this paper considers the role of SDM and the ways in which clinicians push back on the ‘buffet’ rhetoric and engage in practices to guide families in end‐of‐life decision‐making by granting permission for families to make decisions and validating their decisions to decline treatment when there is an opportunity for more treatment.
Doing good: autonomy in the margins of welfare (Open access)
Doris Lydahl, Cecilia Hansen Löfstrand
The welfare systems in the global North has seen changes in professional care delivery systems in the margins of welfare, from care in large treatment institutions, to community care and, more recently, to care taking place in home spaces. Care and support are increasingly provided in the home of the service user through floating support and home visits. Drawing on empirical ethics, we aim to inquire into modes of doing good care during professional workers’ home visits by building on observations of service interactions taking place during these home visits in two different settings: that is, a mental healthcare unit performing home visits in the context of psychiatric care and a special‐housing unit performing home visits in the context of homelessness services. We also build on interviews as retrospective reflections on service interactions. Drawing on these empirical materials, we ask what is considered as doing good in the margins of welfare and identify three ideal patterns: the relationality of care , the situatedness of care and the subject of care . Furthermore, these ideal patterns are connected to two different ideals of good care and conceptions of autonomy in care relations.
Since the publication of Nikolas Rose’s ‘The Politics of Life Itself’ (2001) there has been vivid discussion about how biopolitical governance has changed over the last decades. This article uses what Rose terms ‘molecular politics’, a new socio-technical grip on the human body, as a contrasting background to ask anew his question ‘What, then, of biopolitics today?’ – albeit focusing not on advances in genetics, microbiology, and pharmaceutics, as he does, but on the rapid proliferation of wearables and other sensor-software gadgets. In both cases, new technologies providing information about the individual body are the common ground for governance and optimization, yet for the latter, the target is habits of moving, eating and drinking, sleeping, working and relaxing. The resulting profound differences are carved out along four lines: ‘somatic identities’ and a modified understanding of the body; the role of ‘expert knowledge’ compared to that of networks of peers and self-experimentation; the ‘types of intervention’ by which new technologies become effective in our everyday life; and the ‘post-discipline character’ of molecular biopolitics. It is argued that, taken together, these differences indicate a remarkable shift which could be termed aretaic: its focus is not ‘life itself’ but ‘life as it is lived’, and its modality are new everyday socio-technical entanglements and their more-than-human rationalities of (self-)governance.