Waiting for Care and Community Organizing for Serious Health-Related Suffering in Kerala, India.

We explore the temporalities that shape and alleviate serious health-related suffering among those with chronic and terminal conditions in Kerala, India. Drawing on ethnographic fieldwork between 2009 and 2019, we examine the entanglements between waiting for care within dominant institutions and the community organizing that palliates this waiting. Specifically, people navigate multiple medical institutions, experience loneliness and abandonment, loss of autonomy, and delays and denials of recognition as they wait for care. Community palliative care organizations offering free, routine, home-based care provide samadhanam (peace of mind) and swatantrayam (self-determination) in lifeworlds mired with chronic waiting. We document how community care sustains an alternative politics of shared time, untethered from marketized notions of efficiency and productivity toward profits. In so doing, we cast in high relief community healthcare imaginaries that alleviate serious health-related suffering and reconfigure Global North-centric perspectives.

Signs of Nothing: Negotiations Over Semiotic Indeterminacy in Danish Lung Cancer Diagnostics.

In Denmark, injunctions of "early" cancer diagnosis increasingly imply surveillance of small tissue changes, which may or may not develop into cancer. Based on fieldwork at diagnostic lung cancer clinics and with people in CT surveillance for tissue changes, I explore how detected tissue changes are ascribed meaning as signs of "nothing" or "something." Inspired by Peircean semiotics, I suggest that the semiotic indeterminacy of tissue changes points to how diagnostic socialities both expand medical semiotics and enable this expansion. The article, thereby, contributes to understandings of signs as diagnostic infrastructures.

The Weariness of Hoping: Synchronizing Affect While Awaiting Organ Transplantation for Cystic Fibrosis in Germany.

We describe the challenges in synchronizing affect during the lengthy lead-up to organ transplantation. Our analysis draws on ethnographic fieldwork in Eastern Germany among medical staff caring for patients with cystic fibrosis, a progressive, genetic illness. Patient and practitioners must together endure an uncertain wait for a donor organ, while simultaneously living and working toward living as well as possible. The organizing affective principle in this setting is hoping, which is a socio-material practice that must be continuously and interactively re-produced. Too little or too much hoping must be managed by adjusting affective intensities. A failure to strike this balance can lead to what we designate as the weariness of hoping.

"Initially, medicines will be given, and then we need to study the case": Medicalized perspectives about chronicity and mental health care in Kerala.

In response to the global call to upscale mental health services in low--income countries, mental health non-governmental organisations (MHNGOs) have sprung up in Kerala to address mental health needs by partnering with pre-existing locally grown, bottom-up, community-led pain and palliative clinics (PPCs) to increase access to mental health care through task-shifting. The MHNGOs mandate filtering only patients with 'severe mental disorders' from low socioeconomic backgrounds for their free services. This eligibility criterion mandated by the MHNGO is ruffling feathers within the palliative clinics that oppose such -classifications. They believe that suffering cuts across all divisions and should not be discriminated against based on economic background and severity of illnesses. When chronicity and suffering are held universal by the MHNGO and palliative care, respectively, it brings to the fore the enactment of two perspectives of care. Drawing on observations of clinical interactions between patients, MHNGO staff and mental health professionals and interviews with community volunteers of palliative care clinics in Kerala, this paper demonstrates how chronicity narrative promoted by MHNGOs based on biopsychiatric model gains hegemony, whereas the community care model loses traction progressively. The state, caught between these two narratives, frontstages development by submitting its health machinery to the MHNGOs flouting basic medical safety laws in its services to marginalised people like the tribal population. This paper argues that the rising dominance of chronicity narrative in community mental health clinics as well as in popular media discourses evolves out of power relations between the MHNGOs and the palliative clinics.

Pricing the Priceless Surgery: Professional Expertise and the Marketing of High-Risk Surgery in South Korea.

Through ethnographic fieldwork in cosmetic surgery clinics in Seoul, South Korea in 2018, in this article I investigate how professional clinicians persuade consumers to purchase surgery during consultations. Enamored by the ascendancy of the Korean cultural industry, many non-Koreans are drawn to Korea for the storied, domestic brand of surgery believed to be inextricable from the aesthetic appeal of their idols. Clinical professionals capitalize on this Korean ascendancy by transforming the meanings of surgical success (as symbolic attainment of moral-existential satisfaction) and failure (as deficiency of its symbolic rewards) to trust in their moral authority and expertise.

"Not Like This": Embodying Blackness and Childhood Cancer in the United States.

The embodiment of cancer is always shaped by multiple social identities and relations, including racial and developmental identities and relations. Here I explore how a 12-year-old, Black cancer patient, who I call Rashad, and his parents negotiated the entangled harms of cancer and anti-Black stereotypes in their everyday lives, inside and outside of healthcare settings. At the same time, I show that the embodiment of Blackness served as an affirmative and protective resource, as the family drew on cultures of hip-hop, Black kinship, and anti-racist activism in their attempts to ameliorate and heal the pain of life with cancer.

Reconfiguring Breast Reconstruction in the Post-Cancer Life in Vietnam.

In the context of breast cancer, women who refuse reconstruction are often portrayed as having limited agency or control over their bodies and treatment. Here we assess these assumptions by paying attention to how the local contexts and inter-relational dynamics influence women's decision-making about their mastectomized body in Central Vietnam. We situate the reconstructive decision within an under-funded public health system, but also show how the widespread perception of the surgery as merely an aesthetic practice dissuades women from seeking reconstruction. Women are shown both conform to existing gendered norms while simultaneously challenging and defying them.

Venturing Inside the Body: Transformative Experiences of Pain, Anatomy and Age among Danish Patients Undergoing Awake Arthroscopic Surgery.

When patients who undergo awake arthroscopic surgery follow the surgery on a screen, medical image technologies enable a rare look inside one's own body. Based on ethnographic fieldwork at an orthopedic surgery unit in Denmark, we investigate how patients experience their bodies during surgery. Patients see surgery as proof of their pain, experience an anatomical re-categorization, and contemplate the decay of the aging body. We argue that awake arthroscopic surgery constitutes a liminal setting transforming patients' perceptions of their body and their sufferings. Furthermore, we discuss how awake arthroscopic surgery can be understood as a frame for producing new realities. It constitutes a particular way of seeing and understanding that highlights the seductiveness of the visual as an objective carrier of truth and reminds us to remain critical toward the power of certain frames of knowledge production in medical settings.

Precarious Lives, Precarious Treatments: Making Drug Treatment Work in Northern Myanmar.

We explore how precarious livelihoods intersect with precarious treatments for heroin dependency in a setting affected by longstanding conflicts and an illicit drug economy as well as by recent events of pandemic and political change. Working with 33 qualitative interviews with people who inject drugs in Kachin State, northern Myanmar, we explore how drug dependency treatment, especially methadone substitution, is made to work in efforts to sustain everyday livelihoods. Our analysis attends to the work that is done to enable therapeutic trajectories to emerge as "generous constraints" in precarity. We trace methadone substitution as an emergent intervention of livelihood survival.

Abordar a la persona entre trayectorias alcohólicas y tratamientos / Approaching the person between alcoholic trajectories and treatments

Este artículo es un trabajo de investigación etnográfica en el campo sanitario. Sus objetivos son reconstruir trayectorias de personas con trastornos mentales y de comportamiento por uso de alcohol y visibilizar representaciones y prácticas en los tratamientos brindados en el Hospital Vilardebó (Uruguay), en torno a dichos itinerarios. Las narrativas de los pacientes estudiados dan cuenta de una ruptura biográfica ocurrida mayoritariamente en la adolescencia, cuando comienza un consumo problemático de alcohol que lleva a una reorganización de la identidad social de orden simbólico; refirieren también, la mayoría de ellos, estar disconformes con la asistencia que se les brinda, y reclaman ser más escuchados. Por otra parte, en lo referente a las representaciones formuladas por los funcionarios entrevistados, a mayor formación y experiencia de ejercicio profesional, hay mayores críticas a la atención que se brinda a estos usuarios. De ahí que la confluencia de Antropología y Salud, ensamblando cultura y cuidado, permite integrar a las dimensiones físicas los aspectos emocionales, familiares, culturales y sociales.

This article is carries out ethnographic research in the sanitary field. Its objectives are to reconstruct the trajectories of people with mental and behavioral disorders due to alcohol use and to make visible representations and practices in treatments provided at Hospital Vilardebó (Uruguay). Patients' narratives show a biographical rupture occurring mainly during adolescence. Problematic alcohol use begins soon after, leading to a reorganization of symbolic social identity. Most patients are not satisfied with care provided, and demand to be listened to more extensively. As for health care workers' representations, the greater the training and professional expertise, the greater the criticism of provided care. Hence, the confluence of Anthropology and Health, combining culture and care, makes possible the emotional, family, cultural and social aspects to be integrated into the physical ones.

Uterine fibroid: a socially malignant illness in Haiti.

This qualitative study documented the effects of uterine fibroids on the suffering of women in Haiti. It makes a unique contribution by re-socializing this disease, by making visible the social inequalities and what is at stake for the women, for their families, and for healthcare delivery. Uterine fibroid is a benign tumor of the uterus, common in gynecology, but profoundly malignant in how it affects women's lives. Little has been reported on their lived experiences. Haiti has historical, social, and economic factors that hinder the search for treatment. The study explores how and why patients seek surgical care for uterine fibroids at Mirebalais University Hospital. Seventeen in-depth interviews with patients and seven accompanying family members were conducted and recorded in Creole and translated into English, along with participant observations in two patients' homes. Content and narrative analysis were done iteratively, and the processual ethnographic method was used to relate our findings to Haitian history, to the context of the study, and to future implications. The women's experience of accompaniment, their suffering in their pèlerinage (care-seeking journey), and the troubling social impact of uterine fibroids make it a socially malignant illness. The study shows that it is critical to address the suffering of women afflicted with uterine fibroids by strengthening the Haitian health system, improving economic advantages, and establishing ways for them to gain access to social goods and participate in community activities.

Controversy Over Tongue-Tie: Divisions in the Community of Healthcare Professionals.

While recent decades have seen a rapid rise in cases of infant tongue-tie and in surgery to correct it, a controversy is now raging over the condition. Opinion is especially divided over so-called posterior tongue-tie, a variant which is detected based on the "feel" of the sub-lingual space. Drawing on ethnographic research with clinicians in England, we clarify the professional and personal commitments involved in the controversy. Our analysis is informed by Douglas' theory of cultural representations (grid-group theory), in which ideas of what is natural and unnatural constitute central metaphors.

The nebula of chronicity: dealing with metastatic breast cancer in the UK.

In this article, I explore how the concept of chronicity is mobilised by different actors in reference to metastatic breast cancer (MBC) and the transformation of the condition as a consequence of medical innovations. I do so by using data collected in the UK between 2017 and 2019 through in-depth interviews with medical professionals involved in the treatment of MBC and with patients living with MBC. I show how chronicity appears as a multidimensional and uncertain concept, which I analyse through the image of the nebula. While the medical literature tends to consider MBC chronic or on route to chronicisation, the medical professionals interviewed were uncertain as to whether MBC can be considered a chronic disease, and attempted to discuss chronicity through survival times, the kind of management possible for the disease, and how it compares to other conditions more commonly considered chronic. In some cases, the patients considered the idea of chronicity a source of hope or a way to link their condition to those of people with other diseases; however, they generally rejected the definition as inappropriate for their experience of the illness. Analysing the fluid uses of the concept of chronicity in the case of MBC contributes to the debate within medical anthropology on how medical categories acquire different values and uses and on the circulation of meanings between the biomedical context and the patient experience.

Vaccinal chronicity: immunotherapy, primary care, and the temporal remaking of lung cancer's patienthood in Cuba.

The Cuban biotechnology industry is producing cancer immunotherapy, in particular, therapeutic vaccines that actively stimulate the immune system to stabilise the tumour. These products aim to transform metastatic malignancies into a chronic disease. Since 2010, this therapeutic concept has been integrated within a public health experiment, consisting of the large distribution of immunotherapies, including in primary healthcare centres, to enhance access and assess its effectiveness on a wider population of patients. Such experimental intervention, consisting of post-marketing clinical trials, has focused only on lung cancer, one of the most widespread and lethal cancers on the island. Combining interviews with ethnographic observations focusing on care performed by professionals, patients, and their relatives, this paper analyses the experience of lung cancer chronicity under this type of immunotherapy in Cuba. It shows how a certain form of continuity is made between prophylactic and therapeutic vaccination to shape a new temporality of cancer care, through the integration within primary care, constant access to biotechnology, and multiple care practices directed to strengthen the immunotherapy's efficacy. If vaccinal chronicity remains fragile due to its experimental dimension and the fact that long-term survivorship is still an exceptional phenomenon, lung cancer patienthood is deeply transformed through a shared effort of the people and the state to provide more stable, meaningful, and inclusive care.

Chronicity and the patient's decision-making work. The case of an advanced cancer patient.

This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient's condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a 'negotiated reality'. We argue that the chronicity of advanced cancer patients' situation broadens the patients' scope for 'work', and we have called this specific type of patient's work 'decision-making work'. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians' work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.

Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS.

This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of "recursive debility." Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability. [ME/CFS, chronic illness, medicalization, symptoms, debility].

Remaking the Technosubject: Kenyan Men Contextualizing HIV Self-Testing Technologies.

The Kenyan government offers free HIV self-testing kits to men who have sex with men. The value of self-testing is based on the imaginary of an autonomous technosubject empowered to independently control testing services, thereby "freed," through technology, from the social conditions that might inhibit health services utilization. Following a community-centered collaborative approach, community researchers interviewed their peers who examined and reacted to the technology. Participants reframed the technosubject as intertwined with the social world and the testing kit itself as an object that exerts agency and possesses affective potential. Attending to these socio-material relationalities offers insights into program planning.

Witchcraft and Cancer in the Narrative of a Portuguese Woman.

An 83-year-old Portuguese cancer survivor and amputee structures her illness narrative around the etiology of an upper limb's sarcoma, pointing to witchcraft as the root of her malignancy, through a prayer spoken by a neighbor. This is not a self-explanatory claim, since she must have the ability to blend the principles of a naturalistic thought - disrupted cells - with the supernatural, but with such a logical robustness that it can make sense to her and to others, convincingly grasping, containing and defining the ontological intricacy and interconnectedness of the multiple elements shaping her experience of bewitchment and illness.

Navigating Breast Cancer Screening in Rural Missouri: From Patient Navigation to Social Navigation.

The National Cancer Institute recently identified rural cancer disparities as a priority issue, dedicating resources to rural cancer prevention, presenting opportunities and also risks. We bring an anthropological concept, social navigation, to bear on a popular public health intervention, patient navigation, increasingly proposed as an "evidence-based" approach to reducing health disparities. Our study of mammography in the Missouri Bootheel demonstrates how such interventions elide the shifting terrain and slow violence of rural health care where people must improvise care through trying out or sticking with providers, negotiating self-advocacy and deference, or changing screening timelines amidst structural constraints and rural stereotypes.