Paper short abstract:

Time scarcity and acceleration are omnipresent. But, what happens when people with a life-shortening illness surpass their predicted lifespan? We explore the shift in temporal orientations and care practices within expanding illness trajectories through an ethnography of people with cystic fibrosis.

Paper long abstract:

Time scarcity is a condition that many consider to be unavoidable due to the acceleration of life. Sociologist Hartmut Rosa argues that the temporal structures of modernity are characterized by a threefold acceleration: technological acceleration, acceleration of social change, and an acceleration of the rhythm of life. As a result, people believe they are saving time when in fact they are just busier. This acceleration is accompanied by the fear of falling behind in life and the need to be more active. However, if improved healthcare leads to a shift in people's time horizon towards the future, what does this mean for people's well-being and how they deal with the time they have left?

To answer this question, we use the experience of people with cystic fibrosis (pwCF), a rare, genetic and life-shortening condition. Due to new and intensified therapeutic regimen, some of which require up to two hours and seven different medications per day, the average life expectancy of pwCF has doubled in recent decades. Today, young pwCF who were once told they would not live into adulthood are able to pursue education, employment, and start families. Drawing on long-term ethnographic research, we explore the everyday concepts and uses of time and temporality. How are the demands of daily life reconciled with therapy, social expectations, and health care structures? And how does a long-term future, first conceivable in adulthood, non-linearly alter temporal orientations to the present and past, and how people situate themselves within their illness trajectories?

Paper short abstract:

Based on ethnographic research on care trajectories of women with advanced reproductive cancer in Indonesia, this article shows how Universal Health Coverage, a global health initiative to improve access to health care, also creates new forms of social inequality.

Paper long abstract:

The World Health Organization promotes Universal Health Coverage (UHC) as a means to improve access to health care ‘for all’ and reduce health inequalities. For those who previously lacked enrolment in insurance schemes or the resources to afford health care costs, the UHC initiative offers the ability to access health care services, including specialized care. However, as I argue in this paper, the mobility that is often needed to receive more specialized care in a UHC system can also lead to inequalities in and exclusion from accessing care. Drawing on ethnographic fieldwork in Indonesia on care trajectories of women with advanced reproductive cancer, I show how these women and their caregiver(s) have to travel long distances to access UHC-covered care. They moreover experience several obstacles in navigating treatment in the place of referral including economic difficulties, emotional stress, and additional care burdens for families. Building on anthropological insights on mobility and social navigation, I demonstrate how the UHC system - while beneficial to many - can also create new challenges when people need to navigate cancer treatment far away from home.

Paper short abstract:

The political economy of the Danish welfare state has historically supported the rise in solo living. Four out of ten adults live alone. In this paper I unravel the forms of relatedness and vulnerability that make themselves visible in the context of solo living, shifts in care politics and cancer.

Paper long abstract:

Denmark is among the societies in the world where most people live alone. Through universal health coverage and high levels of social security, the political economy of the Danish welfare state has historically supported the rise in solo living. In this paper I explore the care trajectories of people who live alone while undergoing cancer treatment. I suggest that care politics in the context of welfare have become the architect of human vulnerabilities.

Departing in prolonged fieldwork among people who live alone and are confronted with their own mortality, embodied being and increasing dis-abled-bodies due to cancer, and inspired by the critical phenomenology of Lisa Guenther and Judith Butlers notion of vulnerability as a way of understanding human subjectivity, I unravel the forms of relatedness and vulnerability that make themselves visible in the context of solo living, welfare and cancer. In particular, I explore the painful abandonment of one interlocutor, Michael by both welfare institutions and family, and the cultural critique that he develops – running from the intimacies of the Danish family to the large-scale triage of the welfare state – in the course of his disease and his death.

Paper short abstract:

Increasingly, migrants are employed in public sector elderly care in Denmark. The paper explores how care workers’ struggles with the majority language influence their care training trajectories and the relations between the care workers, their colleagues and older adults in need of care.

Paper long abstract:

Increasingly, migrants are employed in public sector elderly care in Denmark. Due to labour shortage, municipalities are actively recruiting migrants residing in Denmark to social and healthcare training and skilled work in public sector elderly care. Much literature on migration and care work in the Nordic countries focus on constructions of care workers’ ‘otherness’, positively and negatively, and how such categorizations affect workers’ wellbeing and working conditions. However, how does care workers’ struggles with the majority language influence their care training trajectories and the relations between these workers, their colleagues and supervisors as well as older adults in need of care?

Based on ethnographic fieldwork, the paper explores the relational spaces that emerge when multilingual trainees work with older adults in their training to become skilled care workers. We focus on shifts in ‘care objects’ (Law 2010) and the productive practice (Buch 2018) that emerge from communication challenges and misunderstandings in care situations. Building on analytical insights on ‘direct’ care work in interactions between the trainees and older adults (Nielsen & Sparre, forthcoming), the paper explores practices and consequences of ‘indirect’ care work carried out by the students’ practice supervisors. As communication challenges are becoming an inherent condition of an increasingly multilingual workforce, supervisors develop strategies to facilitate ‘good’ care relations by matching multilingual trainees with particular older adults to enable the migrants’ training and language learning. Thus, the productive practice of care includes supervisors’ indirect work and ‘coordinated care’ (Navne & Svendsen 2018) to secure tomorrow’s care workers.

Paper short abstract:

This paper examines the care trajectories of octogenarian and nonagenarian elders at kibbutzim near Israel’s borders, to reflect on what happens when war overlays aging and illness, (re)shaping the interpersonal dynamics of care as these collide or collude with geopolitical conflagrations.

Paper long abstract:

This paper examines the care trajectories of several octogenarian and nonagenarian elders at kibbutzim near Israel’s borders with Lebanon and Palestine, to reflect on what happens when war overlays aging and illness, (re)shaping the interpersonal dynamics of care as these collide or collude with geopolitical conflagrations. I describe, first, how elders in varying states of fragile health sought to establish ritualized daily routines to enact wellbeing while anticipating, at times with dread, at others with equanimity, the oncoming but temporally uncertain end of their life. Drawing on ethnographic interviews, observations, and media representations, I then reflect on how their precarious rhythms were shattered and remade in the wake of the Hamas massacres of October 7 and Israel’s devastating war in Gaza, as border kibbutzim faced mandated or voluntary displacement. Attuning to the silences and gaps in their narratives, I attempt to trace the psychic life of this elder generation’s biopolitics (Stevenson 2014), where militarization has been an enduring, if at times only haunting presence. I suggest that these elderly Jews’ histories of dispossession and repossession not only inflect the ways they conflate Israel with home as an inhabitable but tenuous space of welcome (Willen 2019), but limit sentiments and expressions of empathy, thereby highlighting the fraught nature of care.

Paper short abstract:

In this paper, I conceptualize care trajectories as narratively layered ethical processes that may unfold in, and conjure, nonlinear temporalities. Drawing on ethnographic fieldwork on HIV care in Indonesia, I show how attending to narratives and silences point us towards moral ambiguities of care.

Paper long abstract:

Drawing on ethnographic fieldwork in Aceh, Indonesia, this paper follows the quest for diagnosis and treatment of pain symptoms of one HIV-positive woman, Rina, to show how ambiguities of care are folded into nonlinear narratives and temporalities that make up care trajectories. Over a period of almost one year full of frustrating biomedical consultations and other healing efforts, she told me and others stories about her past and present struggles, with each narrative expanding, revisiting or undoing previous accounts. Rina’s subjunctive narratives invoke possible causes of her symptoms and future (im)possibilities of healing. Her stories reveal experiences of care across institutional boundaries of the clinic and the family as continuously ambivalent, entangling violence and responsiveness (Garcia 2010, Stevenson 2014, Varma 2020). By attending to the gaps, tensions and potentialities of these folding and unfolding narratives, and by building on anthropological scholarship that shows how the nonlinearity and ambiguity inherent in many narrative acts is fundamental to navigating situations of trouble in everyday life (Ochs and Capps 2001, Pinto 2014, Shohet 2021), I conceptualize care trajectories as narratively layered ethical processes that may unfold in, and conjure, nonlinear temporalities. The uncertainties, silences, and sideshadowing narratives (Shohet 2021) that shaped Rina’s trajectory and suffused the fraught affectivity of her social relations, moreover, destabilize boundaries of clinic and family, biomedicine and religion, and point us towards the moral ambiguities of care.

Paper short abstract:

This paper explores the complex and shifting ‘doings’ and ‘goods’ of medical treatments and pharmaceuticals in shaping care assemblages and everyday living with multimorbidity in Denmark

Paper long abstract:

In welfare states like Denmark, public health problems of multimorbidity, polypharmacy and ‘treatment burden’ have sparked campaigns and discourses that are increasingly concerned with how patients and healthcare professionals can ‘choose wisely’, to avoid ‘unnecessary’ treatments and prioritize those treatments that benefit patients. In clinical discourse, risk related to phenomena such as polypharmacy and overtreatment is mainly assessed by quantitative measures, such as the number of medications, the doses, and the amount of time a drug is taken. Less attention is given to concrete effects and what pharmaceuticals ‘do’ in the shaping of everyday life. At the same time, ethnographic studies of clinical consultations in the context of multimorbidity and polypharmacy have shown the detrimental effects of overmedication. In this paper, I explore the complex role of medical treatments and pharmaceuticals in shaping the care assemblages that make life liveable with severe and life-limiting diseases in Denmark. Based on 20 months of fieldwork, and especially 24 months of diary-writing by one interlocutor, I analyze concrete examples from a single care trajectory over an extended period. The paper raises discussions on the shifting roles and ‘doings’ of pharmaceuticals in shaping care assemblages and how they become part of the daily negotiations about how to handle complex diseases in homes and clinics. Finally, the paper discusses how researchers can study the ‘goods’ of medical treatments and make room for complexity in discourses on ‘avoidable’, ‘unnecessary’ and ‘detrimental’ treatments in ethnographic writing, public discourse and clinical consultations.

Paper short abstract:

Drawing on ethnographic examples of migrating Indian families of nurses and their aging parents, this paper proposes the concept of “transnational care collectives” to make explicit the technological relationality through which transnational families enact elder care across boarders.

Paper long abstract:

Everyday digital technologies play a crucial role for sustaining care for families which are spread across multiple countries. Beyond facilitating care, how do these devices shape it? I propose the concept of “transnational care collectives” to describe how digital technologies participate in enacting elder care at a distance. This notion arises from long-term ethnographic fieldwork among transnational families of migrating nurses from Kerala, South India. In India, good elder care is associated with practices that demand physical proximity, such as intergenerational co-residence and food sharing. I argue that migrating children do not care less because they are physically far away from their parents, but that the meanings and practices of good elder care become transformed, a process which is importantly shaped by digital technologies. Frequent calling transpires as a key practice of such care, not only to alleviate loneliness, but also to manage life-limiting health conditions such as chronic obstructive pulmonary disease (COPD). This became particularly transparent during the Covid19 pandemic when travelling was restricted and the children’s involvement with their parents’ healthcare through smartphones could be a matter of life and death. Additionally, digital technologies not only afforded older adults to stay connected with their family members, but also to enact care for their children and grandchildren living far away. Thorough time and external circumstances, the dynamic within transnational care collectives may therefore shift in surprising ways: while older adults were considered the most vulnerable and in need of care, digital devices afforded them to be carers too.

Paper short abstract:

This paper discusses how older adults in Brazil reconfigure their lives and orientations to the future as they are confronted with estrangement and finitude. It shows how they may both embody and resist a scenario of frailty and withdrawal in their struggles of how to relate to the world.

Paper long abstract:

The continuation of everyday life in the face of physical and cognitive changes and when confronted with finitude, is a major challenge for many older adults. Based on ethnographic fieldwork in Brazil, I explore in this paper how older adults reconfigure their lives and orientations to the future as they experience changes in their own abilities and their social relationships.

Many of my interlocutors expressed a sense of disconnection, a feeling they no longer fully belong to this world. Some no longer engaged in specific habitual or social activities, taking precautions out of fear of physical injuries or feelings of shame, thereby letting go of specific aspects of life. Their perception of finitude played a prominent role in their everyday lives and narratives. At the same time, they continued everyday life and refused to foreclose the future by narrating possibilities of improvement and emphasizing that they might, once again, take up the activities they have suspended.

In tracing their care trajectories, I show how older adults may both embody and resist a scenario of frailty and withdrawal; How they come to terms with their changing realities and the end of life; and how they renegotiate their relations with others and themselves. In seeking to ethnographically understand these experiences of estrangement, finitude, and adjustment, this paper presents a phenomenological reflection on alienation as a social and psychological process that is characterized by changing social ties and internalized struggles of how to relate to the world.