Ciara Kierans

Critical reflections on the field of tobacco research: The role of tobacco control in defining the tobacco research agenda

In recent years, tobacco research, as a field of investigative practices, has come to be seen as a major contributor to broader tobacco control efforts and a ‘significant component of the global health agenda’ (World Health Organization (1999). Confronting the epidemic: A Global Agenda For Tobacco Control Research. Geneva: WHO, p. 14; Warner, K. E. (2005). The role of research in international tobacco control. American Journal of Public Health, 95(6), 976–984). However, despite some discussion about the research-specific implications of, for instance, the Framework Convention on Tobacco Control (FCTC) (World Health Organisation (2003a) (ratified 2005). The Framework Convention on Tobacco Control. Geneva: WHO, Articles 20–22), questions remain about what the exact nature of the relationship between tobacco research and tobacco control should be. Guided by that central question, this article draws attention to recent attempts to define this relationship, in particular that embodied in the Global Tobacco Research Network (GTRN), in order to facilitate debate on how such definitions attempt to shape the research agenda. Throughout, the main critical focus will be the attempt to generate characterizations of the field, through entities like the GTRN, which relate tobacco-related research practices vis-à-vis their relationship to tobacco control. It is argued that such characterizations present a distorted and oversimplified picture of how we might assess the empirical work we find across the field as a whole. Tracing these difficulties back to the narrow normative position embodied within the GTRN and World Health Organization approach to tobacco research, the article concludes by arguing that there is a need to recognize, rather than correct for, the overlapping and diverse bodies of work which the study of tobacco-related questions has helped establish.

When Health Systems Are Barriers to Health Care: Challenges Faced by Uninsured Mexican Kidney Patients

Background Chronic Kidney Disease disproportionately affects the poor in Low and Middle Income Countries (LMICs). Mexico exemplifies the difficulties faced in supporting Renal Replacement Therapy (RRT) and providing equitable patient care, despite recent attempts at health reform. The objective of this study is to document the challenges faced by uninsured, poor Mexican families when attempting to access RRT. Methods The article takes an ethnographic approach, using interviewing and observation to generate detailed accounts of the problems that accompany attempts to secure care. The study, based in the state of Jalisco, comprised interviews with patients, their caregivers, health and social care professionals, among others. Observations were carried out in both clinical and social settings. Results In the absence of organised health information and stable pathways to renal care, patients and their families work extraordinarily hard and at great expense to secure care in a mixed public-private healthcare system. As part of this work, they must navigate challenging health and social care environments, negotiate treatments and costs, resource and finance healthcare and manage a wide range of formal and informal health information. Conclusions Examining commonalities across pathways to adequate healthcare reveals major failings in the Mexican system. These systemic problems serve to reproduce and deepen health inequalities. A system, in which the costs of renal care are disproportionately borne by those who can least afford them, faces major difficulties around the sustainability and resourcing of RRTs. Attempts to increase access to renal therapies, therefore, need to take into account the complex social and economic demands this places on those who need access most. This paper further shows that ethnographic studies of the concrete ways in which healthcare is accessed in practice provide important insights into the plight of CKD patients and so constitute an important source of evidence in that effort.

Organ donation, genetics, race and culture: The making of a medical problem (Respond to this article at http://www.therai.org.uk/at/debate)

11 Ciara Kierans and Jessie Cooper Ciara Kierans is a medical anthropologist based in the Division of Public Health and Policy at the University of Liverpool. Her research interests include medical practice, inequality and the biopolitics of transplant technologies. Her email is c.kierans@liverpool.ac.uk. Jessie Cooper is a PhD student in the department of Public Health and Policy at the University of Liverpool. Her research interests include organ donation, minority ethnic health inequalities and the study of science and technology Her email is j.c.cooper@liverpool.ac.uk.

The ‘Social Life’ of Scouse: Understanding Contemporary Liverpool through Changing Food Practices

Questions of heritage, tradition and authenticity have been pushed to the fore by attempts to engineer a cultural and social ‘renaissance’ in the city of Liverpool, particularly in light of its recent European Capital of Culture status in 2008. Much of this reinvention has been discursive, asserting continuities with a re-imagined globalized, polyethnic and merchant past. This discursive turn has encouraged a resurgence of interest in the symbolic and cultural identities of Liverpool. Nowhere is this better illustrated than in the dish, ‘scouse’ (and, the ‘Scousers’ who eat it) as it makes the transition from working class kitchens to the city’s well-to-do restaurants and bars. By drawing on the food history of Liverpool’s port, ethnographic observations and narrative accounts of food experiences, this article traces the ‘social life’ of scouse from its historical origins and symbolic links to poverty and identity to its emergence as a repositioned culinary cultural artefact of urban regeneration.

Organ donation, ethnicity and the negotiation of death: ethnographic insights from the UK

Abstract The introduction of end-of-life care criteria in the UK aims at standardising the processes of care at the end of life, including how medical decisions on death are communicated to the families of dying and (brain) dead patients. In the setting of the intensive care unit, these activities are routinely complicated by the imperative to secure donor organs for transplantation: where recent changes to donation services have seen the accommodation of organ donation procedures into end-of-life care routines. This has ramifications for understanding how medical decisions around death and dying are brokered with the families of potential organ donors. Drawing on an ethnographic study in England, this paper will document how communications around death get turned into a particular matter of concern for the practice of requesting organ donation from minority ethnic families. It shows how attempts to resolve differences of opinion between health professionals and families about a diagnosis of brain stem death or dying are mediated by sets of brokering practices: specifically, those termed technological, authoritative and religious brokering. These practices, we argue, not only facilitate a family’s acceptance of their relative’s death, but also serve to make possible a decision on organ donation.

Viviendo con trasplante renal, sin protección social en salud: ¿Qué dicen los enfermos sobre las dificultades económicas que enfrentan y sus efectos?

Kidney transplant is the optimal treatment for renal disease according to biomedical criteria, but the technology is highly expensive. The aim of this article was to examine the economic hardships experienced by kidney transplant patients and the impact on their lives, specifically when they lack social protection in health. The article reports on a qualitative study conducted in Mexico. Twenty-one kidney transplant patients participated. Semi-structured interviews were performed and submitted to content analysis. Patients experience extreme economic hardship due to the high cost of renal therapies, particularly medicines. Such economic problems adversely affect their condition, since many patients report difficulties in maintaining their immunosuppressant medication, attending medical appointments, and curtailing household expenditures, further aggravated by loss of earnings. In conclusion, kidney transplantation is associated with patients’ impoverishment when they lack social protection in health. A protection system is urgently needed for this group.

Biopolitics and Capital: Poverty, Mobility and the Body-in-transplantation in Mexico

Organ transplantation has been central to debates on medical technologies and their complex biopolitical consequences, new forms of medical governance and new opportunities for capital. Attending to transplantation has also opened up new ways of thinking about, acting on and living ‘in’ the body, raising important questions about what it means to be embodied under particular cultural conditions. The specific ways in which a technology like transplantation puts the body parts of some at the disposal of the bodies of others has served to (re)write bodily boundaries, commoditise body parts and reorganise the social relations of exchange, care and responsibility. The controversies that this family of technologies has given rise to are both readable and read as embedded in and expressive of wider forms of conflict and contestation. Putting these controversies and their entanglements centre-stage, this article focuses on the manner in which transplant technologies construct their publics in gendered and socially stratified terms, as they reconstruct the transplanted organ as a new site for the extraction of surplus value. Drawing on data from fieldwork in Mexico, I will examine the catastrophic consequences of transplant medicine for Mexico’s poor, particularly women who bear the burden of care for the country’s predominantly living transplant programme. In carrying the costs (moral, social and economic) their accounts of these processes offer us an important critical vantage point from which to assess the interplay between state, market and the ‘worn’ body in the context of transplantation.

Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis

Herpes simplex virus (HSV) encephalitis is a potentially devastating disease, with significant rates of mortality and co-morbidities. Although the prognosis for people with HSV encephalitis can be improved by prompt treatment with aciclovir, there are often delays involved in the diagnosis and treatment of the disease. In response, National Clinical Guidelines have been produced for the UK which make recommendations for improving the management of suspected viral encephalitis. However, little is currently known about the everyday experiences and processes involved in the diagnosis and care of HSV encephalitis. The reported study aimed to provide an account of the diagnosis and treatment of HSV encephalitis from the perspective of people who had been affected by the condition. Thirty narrative interviews were conducted with people who had been diagnosed with HSV encephalitis and their significant others. The narrative accounts reveal problems with gaining access to a diagnosis of encephalitis and shortfalls in care for the condition once in hospital. In response, individuals and their families work hard to obtain medical recognition for the problem and shape the processes of acute care. As a consequence, we argue that the diagnosis and management of HSV encephalitis needs to be considered as a participatory process, which is co-produced by health professionals, patients, and their families. The paper concludes by making recommendations for developing the current management guidelines by formalising the critical role of patients and their significant others in the identification, and treatment of, HSV encephalitis.

The emergence of the ‘ethnic donor’: the cultural production and relocation of organ donation in the UK

Organ donation is constructed in the UK as a public responsibility, but more particularly as an obligation for members of minority ethnic communities. This paper draws attention to the ways in which ‘ethnicity’ has been made problematic by the allocation practices of transplant medicine, health promotion discourses and policy developments. Taken together, they have served to culturalise and racialise the procurement of organs. As the problem of organ donation is as much made inside medicine as outside it, this paper argues greater attention ought to be paid to these institutional practices and processes. Drawing on ethnographic work in the north of England, and with a specific focus on the organ consent encounter, this paper shows how categories of ethnicity in organ transplantation are an outcome of biopolitical and institutional practices. It argues that organ donation is best thought of, less as a discrete temporally-bounded act of decision-making, and more as a set of variegated situated practices that, in all manner of ways, problematically produce the publics that transplant medicine has come to rely upon so profoundly.

Ageing, masculinity and Parkinson's disease: Embodied perspectives

Parkinsons disease (PD) presents as an illness which predominantly affects older men. However older mens lived experiences of PD, including how they are influenced by age and gender relations has seen little empirical study. Drawing on Watsons male body schema, this paper explores how men engage with masculinities and ageing in order to make sense and meaning from PD. Data is presented from 30 narrative and semi structured interviews with 15 men of various ages who were living with PD. Findings suggest that PD threatens a visceral embodiment located in the bodys basic movements and intimate functions; a pragmatic embodiment expressed through mens everyday occupations and an experiential embodiment concerned with emotions and sensations felt within and through the body. In addition, each dimension of mens embodiment also intersected with the ageing process, a process also shaped in turn by broader social and cultural concerns regarding the positions and possibilities of mens lives as they move through the life course. This paper concludes by discussing the implications of gender and ageing in understanding mens experiences of PD.