EASA2012: Uncertainty and disquiet
Nanterre University, France, 10/07/2012 – 13/07/2012
Uncertainty and trust in medicines and therapeutic techniques
Date and Start Time 11 Jul, 2012 at 11:30
Kate Hampshire (Durham University) email
Trudie Gerrits (University of Amsterdam) email
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This panel explores the dialectical relationship between uncertainty and trust in clinical and other therapeutic encounters, in the context of the rapid global spread of diverse healing techniques, medicines and information.
Uncertainty is at the very heart of illness and therapeutic encounters, where diagnosis and treatment necessarily entail judgments about implications of acting or not acting in particular ways. It has been argued that the need to cope with uncertainty will increase as medical knowledge expands (Gordon et al, 2000). Moreover, the rapid global spread of biomedical techniques and medicines, which interact with multiple other healing traditions and systems, serves to increase the number of possibilities, but also the dimensions of uncertainty and complexity in the process of treatment-seeking. These include questions about efficacy of particular medicines and techniques, potential risks and side effects, the difficulties of identifying counterfeits, and the possible dangers of pursuing multiple forms of treatment concurrently. In this context, trust emerges as being an increasingly important dimension of health-seeking practices: trust in health professionals or other healers; trust in medicines and different therapeutic processes or artefacts; trust in the wide array of information sources (media advertisements, health promotion campaigns, web-based chat-rooms, etc.) which are themselves becoming increasingly dispersed with the rapid spread of information and communications technology. The dialectical interaction between uncertainty and trust, which shapes therapeutic processes and outcomes, is thus a crucial area of study for medical anthropology.
This workshop is closed to new paper proposals.
"Close your eyes and let yourself go": the construction of trust in a treatment for eating disorders
This paper aims to explore how the relationships of trust between doctors and patients are built, and how the perception of the clinic as a “safe place” is shaped, in the context of an Eating Disorder treatment Center
Dialectical interaction between trust and uncertainty undoubtedly represent a fundamental dimension in the understanding of the processes of therapeutic recovery. Thise considerations are especially evident in the management of mental disorders, where feelings such as vulnerability and uncertainty are particularly relevant.
In the field of mental illnesses, Eating Disorders represent an especially complicated case on the issue of creating trust in the therapeutic context. In fact, patients with Eating Disorders often show a great lack of trust in doctors that affects not just the results, but also the whole developing of the healing process. This distrust is mainly due to the denial of the pathological dimension of their eating behaviors, claimed by the doctors. This rejection is where the resistance to the regular diet suggested by doctors partly lies; is therefore fundamental, in order to remove that rejection, to eliminate that feeling of distrust. In this sense, the creation of that bond of trust between doctors and patients is closely intertwined with the process of self reflection and acceptance for the patient of his/her health problems. The analysis of these processes may thus open interesting reflections on the role of these dynamics of trust / distrust in the determination of certain self-perception of the illness and healing experience.
In this paper I will explore the construction of the relationship of trust between patients and doctors using the ethnographic data (notes and interviews) collected during my participant observation (1 year) in an Eating Disorders Centre in Madrid.
'I rather prefer that doctors do not pretend as if they are half gods in white': How doctors sharing uncertainty in a Dutch IVF-clinic increases trust
Based on the findings of an ethnographic study I conducted in a Dutch infertility clinic I will show and argue how couples’ trust in medical doctors seems to be enhanced by doctors’ transparency about possible risks and the limited success rates of IVF and their openness about the uncertainties surrounding this reproductive technology.
Couples indicated for IVF at the Radboud clinic in Nijmegen, the Netherlands (where I conducted an extensive hospital ethnography) are extensively informed about IVF success rates and the possible risks involved. Despite this abundant information, they find it difficult to assess exactly what these risks and rates entail for their own situation. Not surprisingly, the decision to pursue IVF treatment can not be seen as one based purely on a rational assessment of the information on risks and rates. People's individual risk perceptions, the lottery like features of IVF, couples' strong wish for a child, the promising potential of medical technology and trust in the medical staff were - among others - all found to contribute to the fact that most couples are inclined to start and continue IVF treatment, even when they feel that success rates are not really promising and they are scared by some of the potential risks or side-effects. In this paper I focus on the importance of trust in the medical staff in terms of the way couples consider the use of IVF. In particular I will show and argue how couples' trust in medical doctors seems to be enhanced by doctors' transparency about possible risks and the limited success rates and their openness about the uncertainties surrounding IVF. However, I do not claim that sharing uncertainty is necessarily and always appreciated by patients in contemporary biomedicine. Rather, as I suggest in the conclusion, the appreciation of disclosure of uncertainty might be highly context-specific, and is a topic that deserves more scholarly attention.
When treatment can kill, uncertainty, trust and the influence of the patient/doctor relationship
This paper explores how, in a context of possibly lethal treatment, the uncertainty about the treatment and the trust in the treatment influences and is influenced by the doctor/patient relationship.
Based on two fieldworks in onco-haematology in hospitals in Belgium and England, I've observed the impact of therapeutic pain (pain and suffering linked to the impact of treatments) on the relationship between doctors, patients and their relatives. In this context of rough treatments, isolation and side effects that can lead to the death of the patient, the question of the uncertainty of the outcome and trust in the treatment and the doctors is central.
When the illness is fatal and the treatment can be lethal, the communication around the prognosis and the side effects of the treatment is crucial to gain the trust of the patient for the treatment. I'll explore how this communication is bound to the doctor/patient relationship and how it's influenced by cultural norms linked to this relationship.
I'll analyse how, in this situation of therapeutic pain, the responsibility of the therapeutic choice is shared between patients and doctors and can lead to what can be called a real team work. The fragile balance between mutual trust and decision sharing will be discussed. Indeed, if a team work is effective, it doesn't imply equality in the distribution of roles. Patients and doctors have in mind an ideal partner in this therapeutic relationship and trusting one another in order to have faith in the outcome of the therapy is probably the hardest but also the most important thing.
What we can't rely on: patients and doctors facing medical uncertainty related to diagnosis and prognosis in chronic illness.
General practitioners operate mediations between biomedical data and the daily life of patients with chronic illness. As a shared experience, uncertainty helps to develop empathy in doctors and to restore what was broken by the onset of the disease: patients' biological and biographical historicity.
General practitioners (GPs) encounter patients in a context located halfway between the scientifically overdetermined world of biomedicine, and the globally profane environment of daily life. Very quickly, we can observe that uncertainty present in various domains of medical practice is one of the most strongest basis of the doctor-patient relationship. Indeed, uncertainty is not just a medical situation: it is experienced both by the doctor who sometimes has trouble distinguishing between the limits of his own knowledge and the boundaries of the whole biomedical knowledge, but also by the patient confronted with an obscure diagnostic terminology, or struggling to envisage his future by means of statistical data.
Our survey is based on material from a participant observation, collected during medical consultations in France. Among the actions undertaken by the GP in accompanying and caring for the person living with a cancer, we have distinguished the translations made for the direct benefit of the patient, from the scientific vehicular towards the vernacular of the patient. More generally, these translations are part of the mediation procedures achieved by the physician between the biomedical objective data and the subjective experience of the patient. This intervention has at least two stakes: first, to restore the patient's double historicity (biological and biographical) that has been disrupted by the intrusion of chronic illness into his life, and second, to enable the doctor to develop his own empathic abilities in order to turn the doctor-patient relationship into a true partnership.
Navigating uncertain landscapes: the role of trust in health-seeking practices and power topographies in Africa
The increased availability of pharmaceuticals across the African continent has led to an array of therapeutic possibilities. In this joint-paper we point out key-themes around the role of confidence, suspicion and tactics of legitimisation in relation to medicine use.
The increased availability of pharmaceuticals across the African continent, alongside the global spread of medicines and techniques drawn from other healing traditions, has led to a bewildering array of therapeutic possibilities. In these messy markets and power topographies of therapies, drugs and associated practices, we ask how people come to place or withdraw their trust in particular healers, traders and their medicines. In which ways do personal experience, recommendations and advertisements shape the meaning attached to pharmaceuticals, the nature of therapeutic encounters and their health outcomes. How in turn do these aspects allow for practices of distinction and ideas of belonging and identity, through which trust is partially generated? We base our discussion on two ethnographic studies. The first, (Ghana, Malawi, and South Africa) puts children and young people centre stage to explore the role of uncertainty and trust in the ways that they navigate the increasing complexities of therapeutic choice. The second (Mali) focus on street-sold pharmaceuticals in order to study negotiations of their quality, meanings and effectiveness, is framed within the broader context of pharmaceutical marketing in Mali. Both examples raise important themes around the role of confidence, mistrust, suspicion and tactics of legitimisation in relation to medicine use in contemporary Africa.
Treatment-seeking behaviour for malaria in Tanzania - uncertainty and trust in a new remedy
This paper reveals the dialectic construction of uncertainty, trust, and efficacy towards the large scale deployment of new generation anti-malarials such as Artemisinin-containing combination therapies (“ACTs”), being in opposition to the alternative usage of Artemisia-tea in Tanzania.
Malaria is still the leading cause of morbidity and mortality in Tanzania. Large amounts of resources have been invested to control it - especially through the rapid spread of Artemisinin-based combination therapies (ACTs). The new classes derive from the Chinese medicinal plant named Artemisia annua. However, limited health budgets, high costs of ACTs, experienced side-effects, the increasing trend of drug resistance, and the circulation of fake schizontozides raise critical public health concerns and uncertainty in the process of treatment-seeking. Alternatively to the consumption of ACTs, different actors (such as NGOs, traditional healers, churches) promote the feasibility of using the herbal tea-formulation of Artemisia annua as a more affordable and accessible natural practice for the curative therapy of malaria. On the basis of Steven Feierman´s concept of "relational efficacy" (2010), this paper analyzes how trust is attributed to the medicinal plant, contributing to assumptions of its efficacy and thus shaping a therapeutic solution in excessive demands of anti-malarial healthcare.
Uncertainty and trust in men's search for fertility treatments in rural northern Malawi
Based on 12 months research with rural Malawian men whose lives have been shaped by infertility and sub-fertility, this paper will examine the way uncertainty is produced and trust tested in the confluence of repeated, often unsuccessful, treatment seeking from hospitals, herbalists and churches.
Life for men in Chilumba, a group of lakeshore villages in a patrilineal region of northern Malawi, is characterized by a continual search for cash whether by piece-work, fishing, or if you get the chance - salaried employment. Yet men say that a man with a child becomes valued in a way that is unmatched by any other status or wealth he may accrue. Dealing with infertility as a man, and as a couple, is a public shame and personal torment, although thus far research has tended to focus on the more visible impact of infertility on women. Based on 12 months ethnographic research with men whose lives have been shaped by issues of infertility and sub-fertility, this paper will examine the way uncertainty and trust are produced and handled in the confluence of repeated treatment seeking from the District hospital, herbalists and churches, with their varied offers of sperm counts, STI diagnosis and sexual and reproductive history-taking, medicines, adultery, and prayer. Men's search for fertility treatments is plagued by the low perceived efficacy, high risks and dangerous side-effects of both 'English' and 'African' medicine, and challenges to their Christian faith. Set within a broader configuration of the way infertility is perceived as a lesser problem in resource-poor health care systems in sub-Saharan Africa, this paper presents an exploration of the way trust in health professionals, healers, relatives, and between spouses may be tested to extremes.
Policy, pharmaceuticals and tactics: how do people deal with medicines in time of uncertainty in Tigray, Ethiopia
Based on his ethnographic research in Tigray, and utilizing the De Certau’s analytical concept of tactic, the Author aims to analyze which are the everyday tactics that people use to deal with diseases, especially the chronic ones.
After the revolution the new Ethiopian government has adopted a neoliberal politics which has result in a growing presence of private enterprises in all the sectors of the economy. This is also the case of the medical sector where private clinics and private pharmacies are spreading all over the country. Different from other African Contexts the State and its institutions are still strong in Ethiopia. For example the distribution and sale of pharmaceutical drugs is based on dual system: the public and the private one; and there are strong differences between them both in the types of drugs that can be found and in the prices.
The precarious economic situation of many people often makes it difficult for them to get drugs, and at the same time is difficult for them to afford a clinical consultation, because they cannot afford economically it. Then they are forced to rely on pharmacists for a diagnosis.
Based on his ethnographic research in Tigray, and utilizing the De Certau's analytical concept of tactic, the Author aims to analyze which are the everyday tactics that people use to deal with diseases, especially the chronic ones. Tryng to anwer to different questions: in a situation of existential and economic uncertainty , by means of which tactics people manage the diseases? How to handle the trust in the doctors, where it is made difficult by economic uncertainty? What are the alternative within the broader medical system to deal with this?
Shifting (un-)certainties? Trust in herbal medicines in the urban context of Kinshasa
In Kinshasa, insecurities about healers' practices are widespread. Therefore, some herbalists concentrate medical attention on medicinal plant products. We will describe this phenomenon and discuss if we can talk about a de-personalisation regarding medical certainties.
In Kinshasa (Democratic Republic of Congo), strong diversity in medical practices, lack of control, weak infrastructure and unserious practices increase mistrust in medical competences. Medical practices using mainly medicinal plants and relied by most of Kinshasa's inhabitants to the "medicine of the ancestors" face different critics. People complain about lack of knowledge, especially the correct dosage, as well as charlatanism and "evil" practices like witchcraft.
In order to stand against that, specialists in this domain - we call them herbalists - use strategies that seek to distantiate their work from these points of critics. In doing so, they direct their and the patients' attention increasingly on medically related objects and rooms which are more familiar to the biomedical setting, like consultation rooms, patient files, and standardized products.
In the present paper, basing on data gained from 14 months of ethnobotanic and medical anthropological fieldwork in the context of a PhD in Kinshasa, we will first describe how herbalists use trust-shaping strategies to enhance the value of their herbal practices. Then we will discuss if the shifting attention away from personal handling towards medical objects could be understood as a process of "de-personalisation" in this context.
Trust and uncertainty in Malaria in pregnancy
This paper explores the meanings of uncertainty for the different actors involved in the development, change and use of malaria in pregnancy strategies, and the role given to trust in the context of the asymmetric power relations between researchers, policy makers, health professionals and pregnant women
The rapid development of global health programs for different infectious diseases and other risks in pregnancy have increased the complexity and variability of the medical encounter in ANC clinics in Africa. In malaria in pregnancy, the program analysed in this paper, during the last twenty years, there have been frequent changes in biomedical drugs and treatment / prevention strategies.
With data of a multicenter anthropological study in Ghana and Malawi this paper shows the different models of understanding of malaria in pregnancy and its related uncertainties for the different actors involved in the programs: researchers, policy makers, health professionals and pregnant women. It also explores their reactions to the different changes in treatment and prevention, and the enactment of trust associated to these changes in an arena of asymmetric relationships between the different actors.
Whereas in western/central countries the emphasis on trust appears linked to the discourse on patients' autonomy and choice which has been found not to be enough to explain the complexity and best practices in doctors-patients relationship (Mol 2008, Calnan and Rowe 2008); in international health trust is understood in an unquestioned context of hierarchical relationships. The unidirectional enactment of trust that this models involves, leaves very little space for a shared management of malaria in pregnancy uncertainties.
Installing trust: medical data infrastructures and the production of anticipatory knowledge in Rwanda
This paper follows medical data infrastructures (facilitated by new digital technologies) and the trust in numbers in Rwanda. It shows how new indicators on infectious diseases are expected to cope with uncertainties and how in this process anticipatory knowledge is supposed to install new trust.
Medical practice is largely depending on medical data. Many of the therapeutic interventions and decision-making processes in medicine are in need of a set of data that carefully overlooks the spread of a disease, the reaction of a body to a drug or the effects of an intervention, to name a few. Rwanda's response, a context where this data was often unavailable, is an extensive investment in information and communication technologies. In recent years this created various new data infrastructures for the production and circulation of medical data.
This paper introduces an ethnographic account of these medical infrastructures in Rwanda. In particular it focuses on a cell phones based diseases surveillance system that connects all health facilities in the country to a centralized database.
In combining approaches from Medical Anthropology and Science and Technology Studies it will be argued that an analysis of medical data infrastructures become particular interesting when talking about uncertainties and trust in medicine. To extend this argument two points will be made:
1) Studying the design of an infrastructure does not just tell a story about the actors and their involvement in the (global) health system, it will also reveal the risks and uncertainties that are identified by these actors.
2) The availability of new data can be translated into anticipatory knowledge. Certain actors systematically promote this process in order to cope with uncertainties and to install trust. Thus following these translations reveals in-depth knowledge on the role of uncertainties and trust in medicine.
Alternative medicine and healers in folk narratives
Illness is a state that affects not just an individual, but also his/her direct surroundings, and, albeit indirectly, the whole society. Therefore, the severe consequences of illness may be of cultural, social, economic and other nature, as well. Just like with other important, unpredictable phenomena that are independent of human action and control (e.g. weather conditions that affect agricultural societies), the human mind tends to cope with illness by trying to put it under control, and not only by scientific means. Folk narratives about healing with the help of alternative medicine are the best proof of that. These narratives play a significant role when it comes to eliciting the trust in alternative healers and methods, but they also induce distrust in conventional medicine. Such narratives are particularly popular in Serbian society, and can be heard in many different contexts: during everyday conversations with friends, accidental contacts with strangers, in the media, etc. Some of the main intentions of those who transmit these narratives are to emphasize the efficacy of alternative modes of treatment, to promote the ones who practice the alternative healing methods, and at last but not least, to persuade the public about veracity of the story. Special language strategies and a specific „rhetoric of truth“ is used here with the aim to induce trust. However, this does not imply that a person who transmits the narrative necessarily wants to trick others. Such narratives are very much appealing to people and circulate even among friends and relatives because they talk about the possibility of a complete recovery. In this paper I intend to analyze the narratives that I have collected in conversations with informants and in printed media. I will observe them in the sociocultural context of Serbian society and within the frames of the theories of narrative. I argue that the power of narrative is particularly evident and significant in this case, and that it may have deep implications for people’s lives.
Illness is a state that affects not just an individual, but also his/hers direct surroundings and, albeit indirectly, the whole society. Just like with other important, unpredictable phenomena that are independent of human action and control, human mind tends to cope with illness by trying to put it under control, and not only by scientific means. Folk narratives about healing with the help of alternative medicine are the best proof of that. These narratives play a significant role when it comes to eliciting the trust in alternative healers and methods, but they also induce distrust in conventional medicine. Some of the main intentions of those who transmit these narratives are to emphasize the efficacy of alternative modes of treatment, to promote the ones who practice the alternative healing methods and to persuade the public about veracity of the story. However, this does not imply that a person who transmits this narrative wants necessarily to trick others. Such narratives are very much appealing to people and circulate even among friends and relatives because they talk about the possibility of a complete recovery. In this paper I intend to analyze the narratives that I have collected in conversations with informants and in printed media. I will observe them in the sociocultural context of Serbian society and within the frames of the theories of narrative. I argue that the power of narrative is particularly evident and significant in this case and that it may have deep implications on people's lives.
This workshop is closed to new paper proposals.