Failing kidneys: Hotspots, blind spots and biopolitics of indifference.

Chronic kidney disease of non-traditional cause (CKDnt) is commonly associated with monocropping agriculture, heat stress and impoverished working conditions, referred to as CKDnt "hotspots." The condition is also emerging in various sites of environmental contamination, raising questions as to whether multiple variants of the condition exist as a result of different ecologies and different human-environment interactions. This paper examines the emergence of CKDnt around Lake Chapala in Mexico, where we document local efforts to gain recognition and reparation for CKDnt. We follow the ways patients, families and activists have mobilized specific and interlocking infrastructural failures to enact complaint and confront state inaction and neglect of their bodies, communities, and environments. Though their labors have formally achieved little, we discuss how they make visible a biopolitics of indifference, one bound to the production of structural "blindspots."

What really matters? A mixed methods study of treatment preferences and priorities among people with epilepsy in the UK.

The widening range of treatment options for epilepsy, and their potential outcomes, mean decisions about treatment for people with epilepsy (PWE) are often complex. While antiepileptic drugs (AEDs) represent the mainstay of treatment, other potential nondrug interventions are gaining in importance. These treatments all have the potential for harming those using them, as well as bringing benefits. This study examined the views and experiences of PWE about a range of treatment options. We used both qualitative and quantitative approaches - a series of depth-narrative interviews, followed by a large-scale survey. Treatment options and healthcare priorities deemed important by at least 10% of interview participants were then addressed as a series of statements in the follow-on survey questionnaire. Quantitative responses supported healthcare priorities identified through the qualitative interviews. The key goal of treatment among study participants was to be able to live 'a normal life'. Important physical, psychological, and life benefits of treatment were identified - most being the direct consequence of improved seizure control. One psychological benefit, reduced worry, was also identified as an important treatment goal. All participants viewed AEDs as appropriate first-line treatment; and since adverse effects of AEDs had implications for individual levels of daily function and wellbeing, their appropriate management was considered important. In contrast, surgery was almost always regarded as the treatment of last resort. Despite lack of research evidence supporting their use, participants were interested in complementary therapies as adjunctive treatment and a means of coping with having epilepsy, with yoga and meditation of particular interest. An important finding was the desire for targeted services to help with memory problems, as was the call to increase availability of psychological/counseling services. Our findings emphasize the importance of providing treatment responsive to the life context of individual patients. They highlight not only the level of demand for specific treatment options, but also the need for high-quality evidence to support future investment in their provision.

Care beyond the hospital ward: understanding the socio-medical trajectory of herpes simplex virus encephalitis.

BACKGROUND: Herpes simplex virus (HSV) encephalitis is a life-threatening infection of the brain, which has significant physical, cognitive and social consequences for survivors. Despite increasing recognition of the long-term effects of encephalitis, research and policy remains largely focused on its acute management, meaning there is little understanding of the difficulties people face after discharge from acute care. This paper aims to chart the problems and challenges which people encounter when they return home after treatment for HSV encephalitis. METHODS: The paper reports on data from 30 narrative interviews with 45 people affected by HSV encephalitis and their significant others. The study was conducted as part of the ENCEPH-UK programme grant on Understanding and Improving the Outcome of Encephalitis. RESULTS: The findings show the diverse challenges which are experienced by people after treatment for HSV encephalitis. We first chart how peoples' everyday lives are fragmented following their discharge from hospital. Second, we document the social consequences which result from the longer-term effects of encephalitis. Finally, we show how the above struggles are exacerbated by the lack of support systems for the post-acute effects of encephalitis, and describe how people are consequently forced to devise their own care routines and strategies for managing their problems. CONCLUSION: The paper argues that in order to improve long-term outcomes in encephalitis, it is vital that we develop pathways of support for the condition beyond the acute hospital setting. We conclude by making recommendations to enhance communication and care for the post-acute consequences of encephalitis, to ensure those affected are fully supported through the chronic effects of this devastating disease.

Ageing, masculinity and Parkinson's disease: embodied perspectives.

Parkinson's disease (PD) presents as an illness which predominantly affects older men. However older men's lived experiences of PD, including how they are influenced by age and gender relations has seen little empirical study. Drawing on Watson's 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 body's basic movements and intimate functions; a pragmatic embodiment expressed through men's everyday occupations and an experiential embodiment concerned with emotions and sensations felt within and through the body. In addition, each dimension of men's 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 men's lives as they move through the life course. This paper concludes by discussing the implications of gender and ageing in understanding men's experiences of PD.

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.

Anthropological perspectives on CKDnt in Mexico: time for a paradigm shift on the social determinants of health.

In Mexico, the kidneys of individuals in poor and marginalized communities are failing with little warning and no explanation. Commonly referred to as chronic kidney disease of non-traditional origin (CKDnt), this new variant of kidney disease cannot be accounted for by conventional or discrete etiological explanations, but is instead understood to be a consequence of economic development, environmental degradation and precarious working and living conditions. Drawing on two interconnected ethnographic studies, and the intertwining problems of causation and care, this paper will (1) document the social conditions of disease emergence around Lake Chapala, Central Mexico, and (2) follow the haphazard routes kidney patients take to access resource-intensive biotechnical treatments. Its aim is to both challenge and reconceptualize social determinants as social relations in order to fully account for the profoundly contextual, temporal, and dynamic character of this condition, and to rethink opportunities for care and intervention.

Sex and gender differences in chronic kidney disease and access to care around the globe.

The difference between sex, the biological construct, and gender, the social construct, may be most evident in settings of vulnerability. Globally, chronic kidney disease is more prevalent among women, but the prevalence of end-stage kidney failure, and especially receipt of kidney replacement therapy, is higher in men. These differences likely reflect a combination of physiological and social/structural risk factors that independently modulate kidney disease and/or its progression. The distribution of the most common risk factors such as hypertension and obesity differ between men and women and may impact disease risk differentially. Social and structural gender-related inequities remain stark across the globe. More women live in poverty, receive less education, and are more dependent on others for health care decision making, but men may have a higher risk of injury, occupational exposures, and less access to screening, prevention, and primary care. In this article, we explore how social determinants of health affect kidney disease risk and access to care differentially across genders, and differently across the globe. We also describe specific challenges experienced by boys and girls with kidney disease, how culture and geography may impact kidney care in places where resources are particularly limited such as sub-Saharan Africa, and give examples of social and structural circumstances that place young men and women at high risk of kidney disease in Mexico and Central America, illustrated by case vignettes. The coronavirus disease-2019 pandemic has raised awareness of pervasive gender-based inequities within all societies. This applies to kidney disease and is not new. The nephrology community must add its voice to the calls for action, for a more just society overall, and for the recognition of the roles of sex and gender as modulators of kidney disease risk and access to care.

Artificial intelligence and health inequities in primary care: a systematic scoping review and framework.

OBJECTIVE: Artificial intelligence (AI) will have a significant impact on healthcare over the coming decade. At the same time, health inequity remains one of the biggest challenges. Primary care is both a driver and a mitigator of health inequities and with AI gaining traction in primary care, there is a need for a holistic understanding of how AI affect health inequities, through the act of providing care and through potential system effects. This paper presents a systematic scoping review of the ways AI implementation in primary care may impact health inequity. DESIGN: Following a systematic scoping review approach, we searched for literature related to AI, health inequity, and implementation challenges of AI in primary care. In addition, articles from primary exploratory searches were added, and through reference screening.The results were thematically summarised and used to produce both a narrative and conceptual model for the mechanisms by which social determinants of health and AI in primary care could interact to either improve or worsen health inequities.Two public advisors were involved in the review process. ELIGIBILITY CRITERIA: Peer-reviewed publications and grey literature in English and Scandinavian languages. INFORMATION SOURCES: PubMed, SCOPUS and JSTOR. RESULTS: A total of 1529 publications were identified, of which 86 met the inclusion criteria. The findings were summarised under six different domains, covering both positive and negative effects: (1) access, (2) trust, (3) dehumanisation, (4) agency for self-care, (5) algorithmic bias and (6) external effects. The five first domains cover aspects of the interface between the patient and the primary care system, while the last domain covers care system-wide and societal effects of AI in primary care. A graphical model has been produced to illustrate this. Community involvement throughout the whole process of designing and implementing of AI in primary care was a common suggestion to mitigate the potential negative effects of AI. CONCLUSION: AI has the potential to affect health inequities through a multitude of ways, both directly in the patient consultation and through transformative system effects. This review summarises these effects from a system tive and provides a base for future research into responsible implementation.

Lies, damned lies and statistics? Reliability and personal accounts of smoking among young people.

Smoking remains a major problem among young people in Europe. However, within the research community examining the issue, debate continues about the best way of assessing the extent of that problem. Questions have been raised about the extent to which existing techniques for generating statistical representations of patterns of youth smoking can address a range of problems connected with identifying, accounting for and correcting unreliable self-report smoking data. Using empirical data from the UK Liverpool Longitudinal Smoking Study (LLSS), this paper argues that self-report measures of smoking, treated in isolation from participants' personal accounts, can disguise problems with the reliability and validity of a given study. Using longitudinal qualitative and quantitative data in dialogue, two main factors contributing to unreliable data are discussed: (a) participants' access to and familiarity with frameworks of everyday cultural knowledge about the practice of smoking, and (b) participants' retrospective revision of events in line with their current goals, aspirations and self-understandings. The conclusion drawn is that research has to employ multiple methods, minimally incorporating some personal contribution from participants, to explore the complex character of the problem of smoking and to avoid the difficulties posed by the models of smoking behaviour embodied within stand-alone statistical research.

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.

[Kidney transplant patients without social protection in health: what do patients say about the economic hardships and impact?]. / 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.

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.

Patients' uses of information as researchable domains of social practice.

In this article we argue that research into information for patients has to extend beyond an evaluation of particular information resources to studies of how those resources are engaged with, made sense of and used in practice. We draw on empirical data collected in the course of a study of a patient information resource designed for breast cancer patients in Liverpool and Newcastle in order to demonstrate the limitations of a restricted focus on information resources alone - namely, that it does not take into account the specific ways in which information is incorporated within what patients do as the grounds of 'further inference and action'. Our interest is less in discussing the strengths and weaknesses of this particular resource than in explicating some neglected aspects of the commonplace ways in which patients 'work' with information. We conclude by sketching some broad features of those 'reading' and 'linking' practices, the study of which, we believe, would help us as researchers to explicate the 'problem of information' as it is actually encountered and resolved by patients in realworld settings for their own practical purposes. Taking our lead from ethnomethodological studies and related research in various fields, we argue patients' uses of information are social practices that can and should be treated as researchable phenomena.

Anthropology, organ transplantation and the immune system: resituating commodity and gift exchange.

This article reflects on contributions from medical anthropology to our understanding of the bio-social and bio-political implications of renal transplantation. Taking up the idea of transplantation as a 'complex', a vast assemblage of people, places, practices and procedures which intersect medical, social and cultural domains, I point to a reliance in the anthropological literature on overly pre-determined conceptual frameworks, organised around a distinct polarisation between organ giving and receiving, where one side (supply) takes analytical, and indeed moral, precedence over the other (receipt). These frameworks tend to fail us when it comes to thinking about the wider social, cultural and political implications of transplant technologies. In an attempt to offer a less polarised view, I draw attention to the material and symbolic role of the immune system in transplantation and the ways in which it simultaneously shapes opportunities for procurement and the lived realities of recipiency. This helps us see the many complex ways in which suffering and inequality are constituted all along the variegated chains of supply and demand that are internal to, and made possible by, transplantation practices themselves.

Viviendo con trasplante renal, sin protección social en salud: ¿Qué dicen los enfermos sobre las dificultades económicas que enfrentan y sus efectos? / Kidney transplant patients without social protection in health: what do patients say about the economic hardships and impact? / Viver com transplante renal sem proteção social em saúde: o que os pacientes dizem sobre as dificuldades econômicas e os seus efeitos?

El trasplante es el mejor tratamiento para la insuficiencia renal, de acuerdo con la biomedicina; sin embargo, es una tecnología cara. Este artículo examina las dificultades económicas y sus efectos en personas con trasplante renal, pero sin protección social en salud. Para el estudio se desarrolló una investigación cualitativa en México. Participaron 21 pacientes trasplantados; se aplicaron entrevistas semiestructuradas, y se realizó un análisis de contenido. Los resultados muestran que las personas enfermas enfrentan dificultades económicas, debido a los costes de las terapias renales, particularmente, de las medicinas. Todo ello tiene efectos negativos: las personas con pocos recursos dejan el tratamiento con medicamentos, abandonan el protocolo, no asisten a las consultas médicas y disminuyen los gastos domésticos, incluyendo el de alimentación; además de suponer una merma en los ingresos familiares. En conclusión, el trasplante renal empobrece a las personas enfermas sin protección social en salud; es urgente la implementación de un sistema de protección social para esta población.

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.

O transplante é o melhor tratamento para a insuficiência renal de acordo com a biomedicina; mas é uma tecnologia cara. Este artigo examina as dificuldades econômicas e os seus efeitos em pessoas com transplante renal, mas sem proteção social em saúde. Uma pesquisa qualitativa foi desenvolvida no México. Participaram 21 doentes transplantados; aplicaram-se entrevistas semiestruturadas, e foi realizada análise de conteúdo. Os resultados mostram que as pessoas doentes enfrentam dificuldades econômicas devido aos custos das terapias renais, particularmente das medicinas. Tudo isso tem efeitos negativos: as pessoas com poucos recursos abandonam o tratamento medicamentoso, deixam o protocolo, não comparecem às consultas médicas e diminuem as despensas domésticas, incluindo a comida; além da perda de ingressos. Em conclusão, o transplante renal empobrece as pessoas doentes sem proteção social em saúde; é urgente a implementação de um sistema de proteção social a esta população.

Viviendo con trasplante renal, sin protección social en salud: ¿Qué dicen los enfermos sobre las dificultades económicas que enfrentan y sus efectos? / /Kidney transplant patients without social protection in health: what do patients say about the economic hardships and impact? / /Viver com transplante renal sem proteção social em saúde: o que os pacientes dizem sobre as dificuldades econômicas e os seus efeitos?

El trasplante es el mejor tratamiento para la insuficiencia renal, de acuerdo con la biomedicina; sin embargo, es una tecnología cara. Este artículo examina las dificultades económicas y sus efectos en personas con trasplante renal, pero sin protección social en salud. Para el estudio se desarrolló una investigación cualitativa en México. Participaron 21 pacientes trasplantados; se aplicaron entrevistas semiestructuradas, y se realizó un análisis de contenido. Los resultados muestran que las personas enfermas enfrentan dificultades económicas, debido a los costes de las terapias renales, particularmente, de las medicinas. Todo ello tiene efectos negativos: las personas con pocos recursos dejan el tratamiento con medicamentos, abandonan el protocolo, no asisten a las consultas médicas y disminuyen los gastos domésticos, incluyendo el de alimentación; además de suponer una merma en los ingresos familiares. En conclusión, el trasplante renal empobrece a las personas enfermas sin protección social en salud; es urgente la implementación de un sistema de protección social para esta población.(AU)

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.(AU)

O transplante é o melhor tratamento para a insuficiência renal de acordo com a biomedicina; mas é uma tecnologia cara. Este artigo examina as dificuldades econômicas e os seus efeitos em pessoas com transplante renal, mas sem proteção social em saúde. Uma pesquisa qualitativa foi desenvolvida no México. Participaram 21 doentes transplantados; aplicaram-se entrevistas semiestruturadas, e foi realizada análise de conteúdo. Os resultados mostram que as pessoas doentes enfrentam dificuldades econômicas devido aos custos das terapias renais, particularmente das medicinas. Tudo isso tem efeitos negativos: as pessoas com poucos recursos abandonam o tratamento medicamentoso, deixam o protocolo, não comparecem às consultas médicas e diminuem as despensas domésticas, incluindo a comida; além da perda de ingressos. Em conclusão, o transplante renal empobrece as pessoas doentes sem proteção social em saúde; é urgente a implementação de um sistema de proteção social a esta população.(AU)

Narrating kidney disease: the significance of sensation and time in the emplotment of patient experience.

Drawing on research conducted among patients in Ireland, this article examines the narrative constructions of chronic kidney failure and explores the ways in which patient narratives cross-cut and subvert modernist medical constructions of transplantation as a therapeutic outcome, an endgame, a "gift of life." In experience, patients dismantle this construction structure by emplotting their stories around the painful lack of an ending, ardently brought to bear by the lived realities of immunosuppressant drug therapy, the silent fears of graft rejection, and the isolation of recipiency. They articulate, instead, stories that disclose a multi-directional flow between past and future therapeutic interventions, between the altering nature of the renal body and personal experience. These storied dimensions are phenomenologically embedded in the sensory and temporal aspects of this condition as essential elements of chronic illness and as organizational properties of patient narratives.