Here are some of the articles published in February 2018. Among them are two Special Issues I’d like to highlight: first, Social Science & Medicine brings us a Special Issue on The Role of Racism in Health Inequalities. Second, Sociology of Health and Illness is a Special Issue on Conceptualising ‘materialities of care.’ The abstracts for articles in these Special Issues are below, along with other articles of interest from the journals. Enjoy!
Cultural Anthropology (Open Access)
Unruly Affects: Attempts at Control and All That Escapes from an American Mental Health Court (open access)
Based on two years of ethnographic fieldwork in mental health courts in the San Francisco Bay Area, this article juxtaposes the fixity that defines the legal concept of jurisdiction with the itineracy of homeless individuals judged by criminal courts. I assert that jurisdiction is an attempt at control: by invoking jurisdiction, courts attempt to fix people and objects within time and space so as to yield a narrative of liberal accountability for which defendants can be held responsible. Rather than assume the vantage point of the law, I stick with Harriet, a person who was homeless and subject to a mental health court’s attempt at control. Moving away from the law exposes when state attempts at control fail. Claims to jurisdiction reflect the state’s reliance on control through a particular chronotope of linear time and divisible space. In differently configuring time and space as cyclical and unbounded, Harriet confounds the law’s attempt at control. Further, the state’s invocation of jurisdiction as a concept that fixes time and space produces unruly affects, or coordinates of relation that escape a rule of law presenting itself as rational. Harriet’s relationships with others reflect and enable her escape from state control: they inhabit an affective atmosphere that is produced by the law’s own chronotopic terms, but that reject the individual accountability that the law understands as a product of claims to jurisdiction. In paying attention to missed encounters between Harriet and the court, this article reveals and theorizes moments in which power escapes its own terms and enters a social, deindividuated, affective sphere.
A life worth living: Temporality, care, and personhood in the Danish welfare state
Mette N. Svendsen, Laura E. Navne, Iben M. Gjødsbøl, Mie S. Dam
Caregiving can be conceptualized as involving practices of substitution, in which doctors, nurses, and health assistants step into the subject positions of their charges in order to sustain their personhood and compensate for their reduced capacities. Fieldwork in Denmark at three sites—a neonatal intensive care unit, a research laboratory using piglets as animal models, and a dementia nursing home—shows that temporality is a key component in substitution, as caregivers imagine their charges’ temporal horizons when stimulating their personhood in the ambiguous zone between life and death. Substitution practices redirect our attention from the question of what it means to be human to what it takes to, for example, turn premature infants, research piglets, and people with dementia into beings with worthy lives.
The Massachusetts experience of health care reform before the Affordable Care Act of 2010 reveals a moral economy of care in which expanded access was met by neoliberal demands for accountability and cost control. Publicly subsidized health insurance programs in the U.S. are deeply concerned with managing and regulating low-income residents’ access to and coverage for medications. By focusing our attention on the new forms of social relations invoked by specific techniques of governing, analyses of accountability can help us understand the ways in which subjectivities are shaped through their encounters with overarching social and economic structures. This paper presents qualitative findings from a four-year, prospective study that combined two waves of survey and chart-based data collection with four qualitative methods. Medicaid patients are made accountable to their medication regimens as they must track their supply and obtain refills promptly; regular blood tests carried out by health care providers verify their adherence. Both patients and their physicians are subject to cost savings measures such as changing lists of covered medications. Finally, patients struggle to pay ever-increasing out-of-pocket costs for their medications, expenses which may keep patients from taking their medications as prescribed. The fraught relationship between trust, accountability, and verification finds emphatic expression in the moral economy of health care, where the vulnerability of the sick and their hope for a cure confront policies designed to hold down costs.
‘It would have control over me instead of me having control’: intrauterine devices and the meaning of reproductive freedom
Anu Manchikanti Gomez, Emily S. Mann & Vanessa Torres
In the past decade, enthusiasm for intrauterine devices (IUDs) has rapidly grown in the United States. Messages from health care providers, pharmaceutical advertisements, and public health campaigns extol the freedom that women can experience using a long-term, internal, highly effective contraceptive method. Little research has investigated how young women conceptualize IUDs in terms of freedom and control. We conducted a thematic analysis of in-depth, individual interviews with 37 young Black and Latina women and explored their perspectives on IUDs as promoting and constraining freedom. Participants with favorable views of the IUD (n = 13) appreciated that it would allow them to live their day-to-day lives ‘normally’ without thinking about contraception and with minimal side effects. Four current IUD users found the method empowering because they could pursue their goals without fear of unintended pregnancy. In contrast, nearly two-thirds of participants (n = 24) had predominantly negative views and focused on temporal and physical features of IUD use. They expressed concern that IUDs would impinge on their personal agency by restricting their bodily autonomy since they would not be able to discontinue use without a health care provider; found the idea of a contraceptive method inside their body for years unsettling; and/or desired flexibility over their pregnancy plans. These results highlight a contradiction between IUD promotion discourses and some women’s views about the method and their approaches to pregnancy. Discursive and clinical practices that encourage the use of long-acting contraceptive methods like IUDs over other methods may unintentionally infringe upon reproductive autonomy.
Engaging the community in initiatives to improve health and inequalities is a prominent feature of contemporary public health approaches. Yet, how ‘community’ might be differently interpreted and experienced through mechanisms of engagement is little understood, with potential implications for how the pathways of effect of such initiatives, and their impacts on health inequalities, might be evaluated. This study sought to explore how community was enacted through the delivery of an area-based, empowerment initiative underway in disadvantaged areas of England. An ethnographic approach was used to identify enactments of community arising around the core activities and decision-making processes of the resident-led initiative in two sites. Enactments comprised ‘boundary work’: the ongoing assertion and negotiation of boundaries around who or what was, and was not, eligible to contribute to decision-making, and / or benefit from the initiative. Boundary work arose around practices of connecting with and consulting residents, protecting locally defined interests and autonomy, negotiating different sets of interests, and navigating representation. The multiple, shifting enactments of community and its boundaries highlight implications for understanding processes of inclusion and exclusion inherent to community engagement, and for interpreting pathways between collective empowerment and improved health. The study also raises questions for evaluating similar complex, community initiatives, where community cannot be taken as a fixed analytical unit, but something continually in process through the interplay between the initiative and the wider context. This must inform interpretations of how, and for whom, community engagement might – or might not – improve health.
Beyond patient culture: filtering cultural presentations of depression through structural terms
Bianca Brijnath & Josefine Antoniades
There is growing global consensus for researchers to look beyond patient culture to gain a more nuanced understanding of the ways in which wider socio-structural forces influence health outcomes. In line with these critiques, this paper examines culturally diverse patients’ views about the symptoms, aetiology, and experiences of their depression, and considers how socio-structural forces are implicated in the illness experience. Analysing the transcripts of interviews with 28 Indian-Australians and 30 Anglo-Australians with depression, our results reveal cultural differences between Indian- and Anglo-Australians regarding the chronicity, perceived severity, and aetiology of their depression. Our results also show how these cultural differences are related to socio-structural forces such as time, money, and migration. We conclude by arguing that the current medicalised approach to treating depression needs to shift to a more empathetic problem-solving one; such a change would prompt greater critical consideration of the socio-structural forces that impact people’s mental health and not just focus on individuals’ culture and pathologies.
Reactions to symptoms of mental disorder and help seeking in Sabah, Malaysia
Wendy Diana Shoesmith, Awang Faisal Bin Awang Borhanuddin, Pauline Yong Pau Lin, Ahmad Faris Abdullah, Norhayati Nordin, Beena Giridharan, Dawn Forman, Sue Fyfe
Background: A better understanding is needed about how people make decisions about help seeking.
Materials: Focus group and individual interviews with patients, carers, healthcare staff, religious authorities, traditional healers and community members.
Discussion: Four stages of help seeking were identified: (1) noticing symptoms and initial labelling, (2) collective decision-making, (3) spiritual diagnoses and treatment and (4) psychiatric diagnosis and treatment.
Conclusion: Spiritual diagnoses have the advantage of being less stigmatising, giving meaning to symptoms, and were seen to offer hope of cure rather than just symptom control. Patients and carers need help to integrate different explanatory models into a meaningful whole.
The role of community pharmacists in the identification and ongoing management of women at risk for perinatal depression: A qualitative study
Sabrine Elkhodr, Maya Saba, Claire O’Reilly, Bandana Saini
Background: While pharmacists are among the most accessible primary health professionals within a mother’s healthcare team to identify potential cases of perinatal depression (PND), very little in the literature suggests that this role has been explored.
Aim: The aim of this study was to explore community pharmacists’ perspectives on their potential roles in perinatal mental health promotion (recognition and health education) and the factors affecting these roles.
Methods: In total, 20 semi-structured, in-depth interviews were conducted with community pharmacists.
Results: Most pharmacists highlighted their significant roles in recognising PND symptoms and providing medication-related support to perinatal mothers. Barriers to service provision included inter-professional role boundaries, the lack of established referral systems and service remuneration and the lack of adequate training in mental health.
Conclusion: Pharmacists could potentially reinforce their involvement in mental health promotion activities.
A review of mental health policies from Commonwealth countries
Dinesh Bhugra, Soumitra Pathare, Rajlaxmi Joshi, Gurvinder Kalra, Julio Torales, Antonio Ventriglio
Aims: One way of reducing this inequality is to ensure that mental health policies reflect this. We were interested in looking at the policies of members of Commonwealth.
Method: We decided to survey 52 member countries of the Commonwealth to explore whether mental health policies existed and whether there was equity between physical and mental health services funding. Using World Health Organization (WHO) data sets and other sources when indicated, we looked at the existence and contents of mental health policies.
Results: We found that less than half of the countries had a mental health policy. Deinstitutionalization was not seen as a priority in many countries and there was no equity between physical and mental health funding. Although integration between physical and mental health care was recommended in many countries, there was a clear gap.
Conclusion: It is apparent that there is still a long way to go in terms of equity between physical and mental health in terms of funding in member states of the Commonwealth. These findings confirm earlier observations of discrimination against people with mental illness. We suggest that there must be mechanisms in place to facilitate and support change wherever required.
Inspired by de Laet and Mol’s classic article on the Zimbabwean Bush Pump and Peter Redfield’s revival of fluidity as a central characteristic of humanitarian design, this paper argues that many humanitarian technologies are characterized not so much by fluidity as by stickiness. Sticky technologies lie somewhere between fluid technologies and Latourian immutable mobiles: They work precisely because they are mobile and not overly adaptable, yet they retain some flexibility by reaching out to shape and be shaped by their users. The concept is introduced through a detailed study of Plumpy’nut®, a peanut paste for therapeutic feeding that is materially sticky – much firmer than a fluid, yet still mutable – as well as conceptually sticky. ‘Stickiness’ can have wide utility for thinking through technology and humanitarianism.
‘We’ve been here for 2,000 years’: White settlers, Native American DNA and the phenomenon of indigenization (open access)
Relying on a populace well-educated in family history based in ancestral genealogy, a robust national genomics sector has developed in Québec over the past decade-and-a-half. The same period roughly coincides with a fourfold increase in the number of individuals and organizations in the region self-identifying with a mixed-race form of indigeneity that is counter to existing Indigenous understandings of kinship and citizenship. This paper examines how recent efforts by genetic scientists, working on a multi-year research project on the ‘diversity’ of the Québec gene pool, intervene in complex settler-Indigenous relations by redefining indigeneity according to the logics of ‘Native American DNA’. Specifically, I demonstrate how genetic scientists mobilize genes associated with Indigenous peoples in ways that support regional efforts to govern settler-Indigenous relations in favour of otherwise white settler claims to Indigenous lands.
In the UK, a series of high-profile healthcare ‘scandals’ and subsequent inquiries repeatedly point to the pivotal role culture plays in producing and sustaining healthcare failures. Inquiries are a sociotechnology of accountability that signal a shift in how personal accountabilities of healthcare professionals are being configured. In focusing on problematic organizational cultures, these inquiries acknowledge, make visible, and seek to distribute a collective responsibility for healthcare failures. In this article, I examine how the output of one particular inquiry – The Report of the Morecambe Bay Investigation – seeks to make culture visible and accountable. I question what it means to make culture accountable and show how the inquiry report enacts new and old forms of accountability: conventional forms that position actors as individuals, where actions or decisions have distinct boundaries that can be isolated from the ongoing flow of care, and transformative forms that bring into play a remote geographical location, the role of professional ideology, as well as a collective cultural responsibility.
Shifting syndromes: Sex chromosome variations and intersex classifications
David Andrew Griffiths
The 2006 ‘Consensus statement on management of intersex disorders’ recommended moving to a new classification of intersex variations, framed in terms of ‘disorders of sex development’ or DSD. Part of the rationale for this change was to move away from associations with gender, and to increase clarity by grounding the classification system in genetics. While the medical community has largely accepted the move, some individuals from intersex activist communities have condemned it. In addition, people both inside and outside the medical community have disagreed about what should be covered by the classification system, in particular whether sex chromosome variations and the related diagnoses of Turner and Klinefelter’s syndromes should be included. This article explores initial descriptions of Turner and Klinefelter’s syndromes and their subsequent inclusion in intersex classifications, which were increasingly grounded in scientific understandings of sex chromosomes that emerged in the 1950s. The article questions the current drive to stabilize and ‘sort out’ intersex classifications through a grounding in genetics. Alternative social and historical definitions of intersex – such as those proposed by the intersex activists – have the potential to do more justice to the lived experience of those affected by such classifications and their consequences.
The Canadian Men’s Health Foundation (CMHF) receives significant funding and media attention for its Don’t Change Much initiative, which claims freely chosen small behavioural changes will improve men’s health across Canada. The enthusiastic support for the CMHF’s individual lifestyle interventions that take no account of the structural drivers of men’s health and health inequalities is considered through an application of Ruth Levitas’ utopian analysis exercise. We consider the utopian visions that permeate the CMHF’s initiative and examine its culture through the lens of discursive institutionalism to identify the hegemonic values that imbue CMHF’s and other Canadian health promotion activities. We then suggest more useful directions for improving men’s health and reducing the health inequalities that pervade the Canadian scene.
Drawing on the turn in feminist disability studies toward notions of time and futurity, this article presents themes from a study of disability and health-related organizations and youth engagement in Ottawa, Canada. This article asks: what types of futures are imagined by youth with disabilities? How do they resemble or differ from the future visions of disability and health-related nonprofit organizations? And further, do these futures align with disability scholarship on crip futurity? Using a grounded theory approach and qualitative methods, the study included a website analysis of 84 organizations, key informant interviews with 25 employees, and five focus groups with 46 youth with disabilities. The youth with disabilities in this study have a depoliticized sense of being ‘out of time’ with normative temporalities. The organizations largely present ‘detached futures’ that imagine positive visions of the future that they are unable to enact in light of the structural constraints on their operations. Taken together, this article emphasizes the importance of encouraging disability organizations and disabled youth to generate images of crip futures beyond accommodation in order to transform experiences of disability in the present.
Conceptualising ‘materialities of care’: making visible mundane material culture in health and social care contexts
Christina Buse, Daryl Martin, Sarah Nettleton
‘Materialities of care’ is outlined as a heuristic device for making visible the mundane and often unnoticed aspects of material culture within health and social care contexts, and exploring interrelations between materials and care in practice. Three analytic strands inherent to the concept are delineated: spatialities of care, temporalities of care and practices of care. These interconnecting themes span the articles in this special issue. The articles explore material practice across a range of clinical and non-clinical spaces, including hospitals, hospices, care homes, museums, domestic spaces, and community spaces such as shops and tenement stairwells. The collection addresses fleeting moments of care, as well as choreographed routines that order bodies and materials. Throughout there is a focus on practice, and relations between materials and care as ongoing, emergent and processual. We conclude by reflecting on methodological approaches for examining ‘materialities of care’, and offer some thoughts as to how this analytic approach might be applied to future research within the sociology of health and illness.
Materialities of mundane care and the art of holding one’s own
Julie Brownlie, Helen Spandler
The focus of this special issue is on how everyday or mundane materialities actively mediate health and care practices. This article extends this concern with the mundane to care itself and explores how specific materialities, such as shared spaces and everyday objects, not only mediate mundane care but enable it to happen. Our focus is on mundane help in the context of ill health, between people who are not immediate family, such as neighbours, acquaintances and others with whom we interact in our daily lives. Drawing on recent empirical studies of low-level support in two different parts of the UK, we show how the materialities of care can mediate the affective risks associated with receiving such help. Specifically, we investigate how materialities help people to balance the expression of their vulnerability with a need to retain their dignity, a practice referred to as ‘holding one’s own’. In doing so, we argue that materialities are not just the conduits for care – what care passes through – or things that mediate care. We suggest instead that materialities are part of how relationships of mundane care are constituted and maintained.
Thinking with care infrastructures: people, devices and the home in home blood pressure monitoring (open access)
Kate Weiner and Catherine Will
The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self-monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio-material arrangements involved in self-monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections.
Drawing on ethnographic fieldwork and interviews at a major metropolitan art museum and botanic garden, this article considers the practical accomplishment of American museums’ ‘health turn’ by tracing how museum staff develop therapeutic programmes for visitors with disabilities. In doing so, it considers one of medical sociology’s fundamental theoretical questions – how ideologies of health order social life – in an unconventional empirical setting. Acknowledging contemporary arguments for both the relative merits and unintended consequences of this policy trend, I focus instead on the particular institutional arrangements, professional norms, and material cultures of art and nature that shape museums’ therapeutic work, so as to reveal its effects. Data reveals ideological similarities, but practical differences, between museological and medical understandings of wellness. Extending a ‘medical sociology of practice’ to new contexts ultimately foregrounds the contingencies, and diversity, of therapeutic mechanisms and meanings, thereby broadening sociological research on healing and healthism.
Exchanging implements: the micro-materialities of multidisciplinary work in the operating theatre
Christian Heath, Paul Luff, Marcus Sanchez-Svensson and Maxim Nicholls
Surgical procedures rely upon an array of commonplace tools, implements and materials that mediate practice and disciplinary collaboration within the operating theatre. Substantial time is dedicated to the issue and provision of these artefacts and their timely exchange is critical to the successful accomplishment of surgical procedures. In this article, we consider the practice, knowledge and agency that informs how particular implements and materials are passed by the scrub nurse to the surgeon that in turn enables their deployment with regard to the particular procedure and the contingencies ‘at hand’. We address the technicalities of these ‘non-technical skills’ and examine how they rely upon a disciplinary vision and interactional organisation that informs both the scrutiny of action and the ways in which implements and materials are handled and exchanged. We explore the implications of our analysis for our understanding of agency in action and the growing interest in developing robots or autonomous agents to support work and collaboration in health care.
This article is part of a hospital ethnography that investigates healthcare architecture as an aspect of an increasingly large, complex, and urgent global health issue: caring for refugees and other immigrants. It argues that hospitals are nodes in transnational social networks of immigrant and refugee patients that form assemblages of human and non-human objects. These assemblages co-produce place-specific hospital care in different hospital spaces. Place-specific tensions and power dynamics arise when refugees and immigrants come into contact with these biomedical spaces. The argument is developed by analysing waiting rooms and exam rooms in two outpatient clinics in one US hospital. The article draws its analysis from 9 months of fieldwork in 2012 that included following 69 adult immigrant and refugee patients and observing their encounters with interpreters and clinic staff. Its inclusion of a transnational dimension for understanding place-specific hospital care adds conceptual and empirical depth to the study of how place matters in 21st century hospitals.
Sociological analysis has done much to illuminate the architectural contexts in which social life takes place. Research on care environments suggests that the built environment should not be understood as a passive backdrop to healthcare, but rather that care is conditioned by the architecture in which it happens. This article argues for the importance of going beyond the hospital walls to include the politics that underwrite the design and construction of hospital buildings. The article assesses the case of the yet-to-be-realised Liverpool Royal University Hospital, and the private finance initiative (PFI) funding that underpins the scheme, which is suggested as a salient ‘external’ context for understanding architecture’s role in the provision of healthcare of many kinds for many years to come. PFI has major implications for democratic accountability and local economy, as well as for the architecture of the hospital as a site of care. Critical studies can illuminate these paradoxically visible-but-opaque hospital spaces by going beyond that which is immediately empirically evident, so as to reveal the ways in which hospital architecture is conditioned by political and economic forces.
Dressing disrupted: negotiating care through the materiality of dress in the context of dementia
Christina Buse and Julia Twigg
This paper explores how the materiality of dress mediates and shapes practices of care in the context of dementia. Earlier research called for an approach to conceptualising care that recognised the role played by everyday artefacts. We extend this to a consideration of dress and dressing the body in relation to people with dementia that involves the direct manipulation of material objects, as well as the materiality of bodies. The paper draws on an ESRC funded study Dementia and Dress, which examined experiences of dress for people with dementia, families and care-workers using ethnographic and qualitative methods. Our analysis explores the process of dressing the body, the physicality of guiding and manipulating bodies into clothing, dealing with fabrics and bodies which ‘act back’ and are resistant to the process of dressing. We consider how the materiality of clothing can constrain or enable practices of care, exploring tensions between garments that support ease of dressing and those that sustain identity. Examining negotiations around dress also reveals tensions between competing ‘logics’ of care (Mol 2008).
This article draws on data from a research project that combined participant observation with in-depth interviews to explore family relationships and experiences of everyday life during life-threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the study’s broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The article also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience.
Residential homes encourage new residents to bring belongings with them, so that they can personalise their room and ‘feel at home’. Existing literature on material culture in residential homes views objects as symbols and repositories of home and identity, which can facilitate a sense of belonging in residents through their display in residents’ rooms. I suggest that this both misunderstands the processual and fluid nature of home and identity, and conceptualises objects as essentially passive. This article uses ethnographic data and theories of practice and relationality to argue that rather than the meaning of home being inherent in objects, or felt subjectively by residents, meaning is generated through ongoing, everyday interactions between the two. I show that residents became at home by acquiring new things –as well as displaying existing possessions – and also through interacting with mundane objects in everyday social and relational practices such as cleaning and hosting. I conclude that being at home in older people’s residential homes need not be so different from being at home at other stages of the life course and in other settings. This challenges conceptualisations of older people’s homes – and older age itself – as somehow unknowable and unfamiliar.
In this paper I explore how the papers in this volume offer ways of thinking about materialities of care in terms of political ecologies, including hierarchies of value as well as assemblages, in which strategic agendas are made present in everyday practices, with profound and ordinary affects, as well as effects. I show how power can work through the association of multiple and heterogeneous materials and social processes to create ‘thresholds’, as spaces through which people must pass in order to be included as patients, and which circulate specific imaginaries over what counts as an appropriate need. I go on to suggest how some material practices are made mundane and immaterial, that is inconsequential, so that by drawing attention to their importance in how care is done (or not done) the papers help disrupt the commonplace production and reproduction of the ‘neglected things’ (Puig de la Bellacasa 2012) of healthcare environments, and by so doing help reimagine what is important for occasions to actually be caring. I then shift to thinking about a sensibility, one that is highly valued in this collection of articles, that helps illuminate different imaginaries of care to those that dominate healthcare environments, an approach that I have called elsewhere ‘relational extension’, and in the example I offer here show how shifts in extension as a form of motility disrupts stabilities and their reproduction, to accomplish different forms of world-making.
“Our lifestyle is a mix-match”: Traditional healers talk about suicide and suicide prevention in South Africa
Jason Bantjes, Leslie Swartz, Sithembile Cembi
Practitioners of traditional African medicine (traditional healers) are an important part of the health care system in South Africa, yet their voices are often absent from discussions about public health. In this context, we set out to investigate how a group of traditional healers in South Africa understand suicide and suicide prevention. In-depth, semistructured interviews were conducted with 6 traditional healers and analysed using thematic content analysis. The traditional healers report they are frequently consulted by suicidal individuals and they are confident about their ability to help people in a suicidal crisis. Findings suggest that traditional healers understand suicidal behaviour as a symptom of social disconnection and cultural discontinuity. Traditional healers report that suicidal individuals can be helped by reestablishing interpersonal connections, reconnecting to family and ancestors, and renewing their cultural identities through rituals. These findings suggest that there is some congruence between the way traditional healers understand suicide and the Western scientific and biomedical literature. Our findings raise important questions about cultural approaches to suicide research which are commonly premised on dualistic thinking that constructs culture as something distinct from Western biomedicine.
Racial inequalities in health: Framing future research
Margaret T. Hicken, Nicole Kravitz-Wirtz, Myles Durkee, James S. Jackson
[excerpt] This Special Issue on Racism and Health Inequalities provides a sample of innovative work and empirical evidence from Australia, Brazil, New Zealand, and the United States. The 23 papers in this collection encompass qualitative and quantitative methods and multiple scientific disciplines. Furthermore, they collectively underscore the potential for innovative public health research on cultural and structural racism, but also highlight a number of challenges to confront as we continue to advance scientific knowledge within this area. […] We will begin with a discussion on cultural and structural racism, including our working definitions and the processes through which they are related. We will then discuss our two recommendations for future research on racial health inequalities, using arguments from papers in this collection to support them. We will conclude with a call to action for the future of racial health inequalities research that challenges scholars to move toward a “reconstruction of knowledge” (Desmond and Emirbayer, 2010) about the root causes of these inequalities to then work toward their elimination.
Racialized legal status as a social determinant of health
Asad L. Asad, Matthew Clair
This article advances the concept of racialized legal status (RLS) as an overlooked dimension of social stratification with implications for racial/ethnic health disparities. We define RLS as a social position based on an ostensibly race-neutral legal classification that disproportionately impacts racial/ethnic minorities. To illustrate the implications of RLS for health and health disparities in the United States, we spotlight existing research on two cases: criminal status and immigration status. We offer a conceptual framework that outlines how RLS shapes disparities through (1) primary effects on those who hold a legal status and (2) spillover effects on racial/ethnic in-group members, regardless of these individuals’ own legal status. Primary effects of RLS operate by marking an individual for material and symbolic exclusion. Spillover effects result from the vicarious experiences of those with social proximity to marked individuals, as well as the discredited meanings that RLS constructs around racial/ethnic group members. We conclude by suggesting multiple avenues for future research that considers RLS as a mechanism of social inequality with fundamental effects on health.
A safe haven for the injured? Urban trauma care at the intersection of healthcare, law enforcement, and race
Sara F. Jacoby, Therese S. Richmond, Daniel N. Holena, Elinore J. Kaufman
Patients with traumatic injuries often interact with police before and during hospitalization, particularly when their injuries are due to violence. People of color are at highest risk for violent injuries and have the poorest outcomes after injury. The purpose of this study was to describe how injured, Black patients perceived their interactions with police and what these perceptions reveal about police involvement within trauma care systems. We combined data from two qualitative studies to achieve this aim. The first was ethnographic fieldwork that followed Black trauma patients in the hospital through the physical and emotional aftermath of their injuries. The second was a qualitative, descriptive study of how patients experienced trauma resuscitation in the emergency department (ED). Both studies were conducted between 2012 and 2015 at the Trauma Center at Penn, an academic medical center in Philadelphia, Pennsylvania, United States. The present study includes data from 24 adult, Black participants undergoing treatment for injury. We reanalyzed all interview data related to law enforcement encounters from the scene of injury through inpatient hospitalization and coded data using a constant comparative technique from grounded theory. Participants described law enforcement encounters at the scene of injury and during transport to the hospital, in the ED, and over the course of inpatient care. Injured participants valued police officers’ involvement when they perceived that officers provided safety at the scene, speed of transport to the hospital, or support and information after injury. Injured participants also found police questioning to be stressful and, at times, disrespectful or conflicting with clinical care. Communities, trauma centers, and professional societies have the opportunity to enact policies that standardize law enforcement access in trauma centers and balance patients’ health, privacy, and legal rights with public safety needs.
In 2006, the committee that developed the National Health Policy for the Black Population (NHPBP) chose sickle cell disease as their “flag to demand health rights.” The drafting of this policy was official recognition from the Ministry of Health for racial differences of its citizens in order to address certain inequalities in the form of racial health reparations. Through an ethnographic study which consisted of participant observation, life-story and semi-structured interviews, and surveys in the urban centers of Rio de Janeiro, São Paulo, Salvador, Belo Horizonte, and Brasília between November 2013 and November 2014, I introduce a new conceptual approach called biocultural citizenship. It is a flexible mode of enacting belonging that varies depending on disease status, skin color, social class, recognition of African lineage, and other identifiers. Using empirical evidence, this article explores how people living with sickle cell disease (SCD), civil society, and the Brazilian government—at state and federal levels—have contributed to the discourse on SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, I demonstrate that the SCD movement strategically uses Blackness to make claims for health rights. Biocultural citizenship is dependent on the idea of biological and cultural difference that is coproduced by the State and Afro-Brazilian citizens. The use of biology to help legitimate cultural claims, especially in the Black Atlantic, contributes a new and distinct way to think about how race and skin color are used as tools of agency for diasporic communities.
Prison-based therapeutic community (TC) programming is derived from the perspective that drug addiction is primarily symptomatic of cognitive dysfunction, poor emotional management, and underdeveloped self-reliance skills, and can be addressed in a collaborative space where a strong ideological commitment to moral reform and personal responsibility is required of its members. In this space, evidence of rehabilitation is largely centered on the client’s relationship to language and the public adoption of a “broken self” narrative. Failure to master these linguistic performances can result in the denial of material and symbolic resources, thus participants learn how to use TC language to present themselves in ways that support existing institutionalized hierarchies, even if that surrender spells their self-denigration. This research examines the interview narratives of 300 former prisoners who participated in a minimum of 12 months of prison-based TC programming, and described how programming rhetoric impacted their substance abuse treatment experiences. While many of the respondents described distressing experiences as TC participants, White respondents were more likely to eventually embrace the “addict” label and speak of privileges and reintegrative support subsequently received. Black respondents were more likely to defy the treatment rhetoric, and either fail to complete the program or simulate a deficit-based self-narrative without investing in the content of those stories. The following explores the significance of language and identity construction in these carceral spaces, and how treatment providers as well as agency agendas are implicated in the reproduction of racial disparities in substance abuse recovery.
The effects of whiteness on the health of whites in the USA
Jennifer Malat, Sarah Mayorga-Gallo, David R. Williams
Whites in the USA are the dominant racial group, with greater than average access to most material and social rewards. Yet, while whites have better outcomes than other racial groups on some health indicators, whites paradoxically compare poorly on other measures. Further, whites in the USA also rank poorly in international health comparisons. In this paper, we present a framework that combines the concept of whiteness—a system that socially, economically, and ideologically benefits European descendants and disadvantages people in other groups—with research from a variety of fields in order to comprehensively model the social factors that influence whites’ health. The framework we present describes how whiteness and capitalism in the USA shape societal conditions, individual social characteristics and experiences, and psychosocial responses to circumstances to influence health outcomes. We detail specific examples of how social policies supported by whiteness, the narratives of whiteness, and the privileges of whiteness may positively and negatively affect whites’ health. In doing so, we suggest several areas for future research that can expand our understanding of how social factors affect health and can contribute to the patterns and paradoxes of whites’ health. By expanding research to include theoretically-grounded analyses of the dominant group’s health, we can achieve a more complete picture of how systems of racial inequity affect health.
Using a structural competency framework to teach structural racism in pre-health education (open access)
Jonathan M. Metzl, JuLeigh Petty, Oluwatunmise V. Olowojoba
The inclusion of structural competency training in pre-health undergraduate programs may offer significant benefits to future healthcare professionals. This paper presents the results of a comparative study of an interdisciplinary pre-health curriculum based in structural competency with a traditional premedical curriculum. The authors describe the interdisciplinary pre-health curriculum, titled Medicine, Health, and Society (MHS) at Vanderbilt University. The authors then use a new survey tool, the Structural Foundations of Health Survey, to evaluate structural skills and sensibilities. The analysis compares MHS majors (n = 185) with premed science majors (n = 63) and first-semester freshmen (n = 91), with particular attention to understanding how structural factors shape health. Research was conducted from August 2015 to December 2016. Results suggest that MHS majors identified and analyzed relationships between structural factors and health outcomes at higher rates and in deeper ways than did premed science majors and freshmen, and also demonstrated higher understanding of structural and implicit racism and health disparities. The skills that MHS students exhibited represent proficiencies increasingly stressed by the MCAT, the AAMC, and other educational bodies that emphasize how contextual factors shape expressions of health and illness.
Imagined futures in living with multiple conditions: Positivity, relationality and hopelessness
Lindsay-Ann Coyle, Sarah Atkinson
Hope serves as an overarching concept for a range of engagements that demonstrate the benefits of a positive outlook for coping with chronic conditions of ill-health and disability. A dominant engagement through medicine has positioned hope as a desirable attribute and its opposite, hopelessness, as pathological. In this engagement hope is individual, internally located and largely cognitive and able to be learned. Attaining hope reflects a process of coming to terms with the losses associated with long-term conditions and of imagining new meanings and purposes for the future ahead. This process is characterised by a set of linear temporal stages, from loss and denial to acceptance and reappraising the life-course, by an emphasis on the morally desirable exercise of self-care and by a desired outcome that, in the absence of cure, is hope. Through interviews, we aim to unsettle the privileged status given to a positive outlook through examining the expressions, contexts and negotiations of hopelessness of people living with multiple conditions of ill-health and/or disability. These narratives of hopelessness disclose the ways in which realistic imagined possibilities for the future are constrained by external structures of time and function that demand complex negotiations with places, bodies and other people. As a situated and relational narrative, hopelessness draws our attention to the need to rebalance the exclusive attention to individual, internal resources with a renewed attention to contexts and settings. Moreover, hopelessness can be generative for those living with multiple conditions in shaping alternatively framed priorities with respect to their temporal and interpersonal relations.