Directing the senses in the contemporary orientations to cancer disease control: Debating symptom research

This paper discusses ongoing changes in orientations to cancer disease control in the Global North, particularly health promoter attempts to identify the early cancerous body. The paper suggests that the emphasis on early diagnosis of cancer aligns ideas on a symptomatic management of the public with a process in which ‘what counts as cancer symptoms’ is steadily being subdivided, classified and expanded. This alignment, the paper suggests, is an example of how biomedicine potentially extends its boundaries into everyday forms of embodied, social life by changing the social and moral value placed on bodily sensations. Also, the paper echoes ongoing conversations in medical anthropology on symptom experiences; suggesting that symptom experiences may be a suitable analytic axiom for exploring the relationship between biomedical knowledge production and embodied experience. It is suggested that an anthropology of sensations is a useful analytical framework for such explorations

Introduction: Sensations, Symptoms and Healthcare Seeking

This is a post-peer-review, pre-copyedited version of an article published in Anthropology in Action. The definitive publisher-authenticated version Andersen, R.S., Nichter, M. & Risør, M.B. (2017). Introduction. Sensations, Symptoms and Healthcare Seeking. Anthropology in Action. 24(1), 1-5 is available online at: https://doi.org/10.3167/aia.2017.240101.Inspired by the sensory turn in the humanities, anthropologists have coined the term ‘an anthropology of the senses’ to describe the study of the perceptual construction and output of bodily sensations and sense-modalities (cf. Howes 2006; Nichter 2008). Starting from the premise that different cultures and social settings configure, elaborate and extend the senses in different directions, key proponents have argued for a greater empirical and analytical attention to the cultural embeddedness and socio-biological basis of bodily perception and experience. This follows a rethinking of a series of theoretical (cf. Hinton et al. 2008; Ingold 2011) and methodological commitments in anthropology (cf. Pink 2009; Stoller 2004) that also holds relevance for anthropological studies of health and illness, which is the focus of this special issue on sensations, symptoms and healthcare seeking

A Shot at a Healthy Future

In this article, we present an extended case analysis of the unruly reception of the HPV vaccine in Denmark. More specifically, we explore what happens to visions of a healthy future when high levels of social trust in a public vaccination programme are suddenly infused with uncertainty and doubt. Capturing the Danish public in 2013-2015, national news and social media platforms shared dra-matic stories of young women confined to their beds following their HPV vaccinations. The Danish healthcare authorities reacted to this seemingly accelerating problem by setting up HPV clinics to care for the women. Simultaneously, HPV vaccination uptake plunged. Based on long-term ethno-graphic field research, we present the experiences of two main interlocutors, who both find them-selves in difficult situations and having to revise their visions of the future: Sophie, a young woman with suspected HPV vaccine side effects and Martin, a physician working in an HPV clinic. Overall, their accounts shed light on situations emerging during a challenging period in the 2010s in which the Danish healthcare system was adjusting to a new information and media landscape. We show that the promise of a healthy future – sustained by welfare and vaccine technologies – is indeed a communal venture that is vulnerable to suspension and even collapse. When sufferings (such as pain or fatigue) were publicly paired and un-paired with the vaccine, it generated and sustained pervasive uncertainties and painful feelings of being doubted by others – reflecting and highlighting inherent tensions of preventative medicine and the Danish welfare society, including the subtle acts of power and resistance that occur within it

Tid og Kræft

En introduktion til Tidsskrift for Forskning i Sygdom og Samfund nr. 20: Tid og Kræft

Moving goals. Goal-work in Parkinson's disease rehabilitation

Chronic diseases often demand considerable work by patients: they must adhere to medical regimes and engage with social and embodied discontinuities. In Denmark, rehabilitees in Parkinson's disease rehabilitation talk about Parkinson's as their new job. In this article, we introduce goal-work as an optical lens to enlarge and explore the micro-social practices that concern a core practice in rehabilitation where professionals and rehabilitees set goals for the future and work toward the goals. To work with goals adds a new task to living with Parkinson's. Rehabilitation research tends to focus on the actual goal-setting meeting. Drawing on data from long-term ethnographic fieldwork on goals and their setting in Parkinson's disease rehabilitation, we show how participants in rehabilitation imagine, set, enact, review or share their rehabilitation goals, and how goals are worked with before and after the goal-setting meeting, across settings. We conceptualize these micro-social practices as goal-work, which we argue is a spatio-temporal process. The concept of goal-work emphasizes the fact that goal-setting is one event in a string of goal-related activities, and it turns our attention to the intersubjective dimensions inherent in goal-work, such as the role of relatives and how acts of imagination and acts of sharing form part of goal-work

Multiple perspectives on symptom interpretation in primary care research

BACKGROUND: Assessment and management of symptoms is a main task in primary care. Symptoms may be defined as 'any subjective evidence of a health problem as perceived by the patient’. In other words, symptoms do not appear as such; symptoms are rather the result of an interpretation process. We aim to discuss different perspectives on symptom interpretation as presented in the disciplines of biomedicine, psychology and anthropology and the possible implications for our understanding of research on symptoms in relation to prevalence and diagnosis in the general population and in primary care. DISCUSSION: Symptom experiences are embedded in a complex interplay between biological, psychological and cultural factors. From a biomedical perspective, symptoms are seen as possible indicators of disease and are characterized by parameters related to seriousness (e.g. appearance, severity, impact and temporal aspects). However, such symptom characteristics are rarely unambiguous, but merely indicate disease probability. In addition, the GP’s interpretation of presenting symptoms will also be influenced by other factors. From a psychological perspective, factors affecting interpretation are in focus (e.g. internal frame of reference, attention to sensations, illness perception and susceptibility to suggestion). These individual factors cannot stand alone either, but are influenced by the surroundings. Anthropological research suggests that personal experiences and culture form a continuous feedback relationship which influence when and how sensations are understood as symptoms of disease and acted upon. SUMMARY: The different approaches to symptom interpretation imply that we need to be cautious and conscious when interpreting survey findings that are based on symptom prevalence in the general population or in primary care. These findings will reflect a variety of interpretations of sensations, which are not equivalent to expressions of underlying disease. Furthermore, if diagnosis of disease is based exclusively on the presence of specific symptom characteristics, we may risk reinforcing a dualistic approach, including medicalisation of normal phenomena and devaluation of medically unexplained symptoms. Future research in primary care could gain from exploring symptoms as a generic phenomenon and raised awareness of symptom complexity

Patient delay in cancer studies: a discussion of methods and measures

<p>Abstract</p> <p>Background</p> <p>There is no validated way of measuring the prevalence and duration of patient delay, and we do not know how people perceive and define the time intervals they are asked to report in patient delay studies. This lack of a validated measure hampers research in patient delay and is counterproductive to efforts directed at securing early diagnosis of cancer.</p> <p>Discussion</p> <p>The main argument of the present paper is that current studies on patient delay do not sufficiently consider existing theories on symptom interpretation. It is illustrated that the interpretation of bodily sensations as symptoms related to a specific cancer diagnosis is embedded within a social and cultural context. We therefore cannot assume that respondents define delay periods in identical ways.</p> <p>Summary</p> <p>In order to improve the validity of patient delay studies, it is suggested that research be strengthened on three counts: More research should be devoted to symptom interpretation processes, more research should seek to operationalise patient delay, and, importantly, more research is needed to develop valid instruments for measuring patient delay.</p

The moral pioneers of care: Solo living in the context of cancer care

I denne artikel undersøger vi ældre, alene-boende menneskers erfaringer med at bo alene og have brug for omsorg på grund af kræftsygdom. Vi har særligt fokus på at undersøge foran- dringer i den danske velfærdsstats politiske økonomi, herunder hvordan forventninger om at involvere familie i omsorgsarbejde, udfolder sig i konkrete hverdagssituationer. Med ud- gangspunkt i detaljerede beskrivelser af informanterne Lise og Henriks erfaringer foreslår vi, at vi ved at betragte omsorg som generativt arbejde (Buch, 2018) bliver opmærksomme på de mange forskelligartede praksisser, der knytter sig til syge, alene-boende menneskers livsopretholdelse. Gennem beskrivelser af omsorg som udveksling og kropsarbejde, bliver det tydeligt, at omsorg forhandles i krydsfeltet mellem velfærdsstatens politiske økonomi og moralske forestillinger om forbundethed og selvstændighed. Vi konkluderer at alene- boende mennesker, når de bliver syge, kastes ud i moralsk pionerarbejde (Rapp, 1999), der indebærer inter-generationelle forhandlinger, og som afspejler forandringer i den danske velfærdsstats historisk store opmærksomhed mod omsorgserhvervet.In this article, we examine first person experiences of living alone while being sick from cancer and in need of care. We explore how ongoing changes in the political economy of the welfare state, including expectations of the involvement of family in care practices, unfold in specific everyday situations. Based on detailed representations of two interlocutors, Lise and Henrik, we suggest that attending to care as generative work (Buch, 2018) highlights the many, disparate forms of practice through which people work to make life happen. We attend to care as exchange and bodywork and show how negotiations of care unfold in the intersection between the political economy of the welfare state and moral imaginaries of relatedness and independence. We conclude that people living alone, when they fall ill, are thrown into moral pioneering work (Rapp, 1999), which involves intergenerational nego- tiations, and which reflects changes in the welfare state's historically great attention to the care profession

Cancer-before-cancer

Approaching the presence of cancer in everyday life in terms of mythologies, the article examines what cancer is and how cancer-related potentialities are enacted and embodied in the context of contemporary regimes of anticipation. Based on ethnographic fieldwork in a suburban Danish middle-class community among people who were not immediately afflicted by cancer, we describe different and paradoxical cancer mythologies and show how they provide multiple ways of understanding, anticipating, and dealing with cancer in everyday life. Special attention is paid to the relation between biomedically informed notions of symptoms and bodily processes, and a ghostly and muted presence of cancer, particularly when people are faced with more tangible cancer worries. We explore how contemporary cancer disease-control strategies emphasising ‘symptom awareness’ interweave with and add to cancer mythologies. We suggest that these strategies also carry moral significance as directives (be aware of early signs of cancer and seek care in time), and create an unintended illusion of certainty that does not correspond with everyday embodied forms of uncertainty and ambiguity. We argue that paying attention to the continuous cultural configurations of cancer that exist ‘before cancer’ will increase understanding of how the public health construction of ‘cancer awareness’ relates to everyday health practices such as symptom experience and health care seeking