EASA2014: Collaboration, Intimacy & Revolution

(P072)

Anthropology of cure and recovery: collaboration and chronicity

Location T-416
Date and Start Time 03 August, 2014 at 09:00

Convenors

Sylvie Fainzang (INSERM (Cermes3)) email
Vinh-kim Nguyen email
Judith Hermann-Mesfen (UMR 912 SESSTIM) email
Mail All Convenors

Short Abstract

This panel explores how notions of cure or recovery are produced by and enable collaborative practices across social and ontological domains. We are specifically interested in how these practices enable the commensurability, standardisation, normalisation, and the circulation of workable knowledge.

Long Abstract

Relatively little work has examined how cure/recovery as well as chronic bio/social forms of affliction generate collaborations at multiple levels: between caregivers, patients and social groups and in between each socially and culturally located entity.

The workshop examines two aspects of conceptions of cure or recovery: (1) what is at stake when these notions are used to enable collaboration and (2) how these collaborations produce/construct notions of cure and/or recovery. Cure and/or recovery are considered here as processes which vanquish disease (or affliction), by achieving a "normal", "healthy", or "well" state understood in biological, spiritual and/or social terms. We are interested in how the notion of cure/recovery is used to mobilise a variety of actors, whether from the biomedical profession or social and spiritual domains, and how these forms of collaboration across potentially incommensurable domains, are stabilized and made to work.

Moreover, each of these diverse actors has representations, conceptions of cure and/or remission. Those conceptions produce and exchange knowledge on cure/recovery, we question how mobilization and collaboration - within and between groups of actors - participate in defining notions of cure/recovery.

Notions of cure/recovery are most potent in the setting chronic and seemingly intractable biological and social conditions. We will also examine how notions of chronicity and "quality of life" circulate across biological, psychological and social domains, and inform both the discourse and practice related to cure and recovery, for example in relation to cancer, HIV, psychiatric illness, addiction and social marginalisation.

This panel is closed to new paper proposals.

Papers

In the search for cure, the failure of a collaboration

Author: Sylvie Fainzang (INSERM (Cermes3))  email

Short Abstract

The disruption in collaboration between doctors and patients, under the possible influence of other social actors, enables the elaboration of a different conception of cure, which may manifest as ‘self-medicalisation’, where the stakes are sometimes not only therapeutical but also political.

Long Abstract

Ideally, collaboration between doctors and patients requires a harmonious perception of illness and treatment from both parties. This harmony is said to provide one of the conditions for recovery. Anthropology has shown in this respect how doctors' and patients' adherence to the same register of interpretation of illness is a prerequisite for patient medical care. However, if the same way of perceiving illness and cure is likely to enable collaboration between patients and health professionals, and if, conversely, collaboration between patients and doctors may lead to a common way of apprehending cure, on the other hand, divergent ways of perceiving the cure of an illness or a symptom may lead to situations where the collaboration is disrupted. I will examine here examples where patients take recourse to doctors but subsequently give up this recourse. We will see that not only may collaboration cease when there is a disagreement on the treatment and the conditions of cure, but also that it is sometimes under the influence of other social actors that the notion of cure is developed. In these conditions, the failure of a collaboration may result in recourse to self-medication and to 'self-medicalisation'. Moreover, while it is seen as a way to compensate for this failure, this recourse may also contain another stake: by socialising one's ailment and the conditions for recovery in another way, the subject sometimes tries to address a concern that is not only therapeutical but also political.

How to build oneself while interacting with family and / or with medical team: the knowledge on "being recovered" or "being still at risk" for venous thromboembolic events (VTE)

Authors: Claudie Haxaire (Medical School)  email

Short Abstract

We try to document how VTE patients and their families make sense of ‘being still at risk’, i.e. non-recovery, despite the absence of symptoms, and how and to what extent families and/or caregivers actors' interactions can influence patient’s awareness for the risk of recurrence of a VTE event.

Long Abstract

How does the public understand being still at risk for VTE according to the medical team, when they know that sometimes one could recover from provoked VTE episode? Moreover, how to make sense of 'being at risk' because of being a first-degree relative of someone who has had either an idiopathic embolism or a phlebitis? How to make sense of 'being still at risk', i.e. non-recovery, despite the absence of symptoms?

Given the efficient and available emergency medical care, an idiopathic VTE recovered patient may not realise that recurrence of an idiopathic VTE episode is not only possible but also lethal. How should the medical team go by explaining the risk of recurrence and the preventive measure to the patient, and patient's parent, or siblings in days following a first idiopathic episode? The most important measure is informing the primary care physician in case of doubt and anxiety, this requires patient's active collaboration to transfer patient's clinical status.

From their part, the patient's family members needs to determine the cause of the idiopathic first event. This goes by determining and understanding of the circumstances in which the event has occurred. Their own appropriate preventive measures can be implemented according to their knowledge of circumstances. In this manner, a narrative history of VTE and its preventive measures will be passed on within the family tree.

How and in what extent those actor's interactions can influence patient's awareness, before, during and after patient care onset for an VTE event?

"Living with cancer": oncological rehabilitation in Austria

Author: Margret Jaeger (SFU Private University )  email

Short Abstract

Medical advancements have improved people's quality of life when no cure of cancer is possible. The concept of rehabilitation is re-framed but discourses and practice vary greatly. Results of research carried out in Austria's first rehabilitation center using a mixed methods approach are shown.

Long Abstract

Medical advancements have considerably improved people's quality of life when no cure of cancer is possible. The concept of rehabilitation is re-framed with these developments as cancer patients fear recurrence of a tumor. Discourses about cancer and practices to assist people vary greatly. On the one hand, the health system's wish for healthy workers influences policies for rehabilitation, while on the other hand patients' aspirations to recover from the disease's effects and side effects as well as stigmatization and disability affect their lives considerably, requiring support to cope with this.

Rehabilitation in centers with stays of three weeks is offered by the health system to any patient in Austria. Patients' different aims as well as multi professional teams frame the daily routine. Former cancer patients reported in a pre-study conducted by the authors that they did not want to spend their time in a place where everybody is ill. This shows a discrepancy between the system's wish of healthy citizens and people's needs with respect to a disease which affects younger and younger people.

This presentation shows results of research carried out in an Austrian rehabilitation center using a mixed methods approach: (1) questionnaires are used in order to uncover the patients' needs and wishes before and after their stay (quantitative study), and (2) interviews focusing on the meanings of disease as well as recovery therefor are conducted with patients (qualitative study), (3) data about the staff and treatment offers complete the picture.

How can you mend a broken heart? Buddhist psycho-spiritual care for the victims of the 2011 East Japan triple disaster

Author: Maja Veselič (University of Ljubljana)  email

Short Abstract

This paper analyses Buddhist priests' ongoing adaptation and critique of dominant concepts of trauma and illness as well as counseling practices through their efforts to provide psycho-spiritual care to the survivors of the 2011 triple disaster in Northeastern Japan.

Long Abstract

The devastating tsunami and nuclear meltdown following the March 2011 earthquake resulted in an enormous loss of human life, the destruction of homes and livelihoods and, through death and displacement, the disruption of family and communal bonds. Based on the experiences from the Kobe earthquake in 1995 the provision of material aid was soon accompanied by organized efforts to help survivors deal with grief and trauma. In the face of the increased rates of suicides, depression, domestic violence and other social afflictions, it has now become a largely accepted fact that recovery will be a long and arduous process.

This paper addresses the wide range of discourses and practices of what in Japanese is commonly called "kokoro no kea" - "the care of the heart", and is carried out by medical, social welfare and religious professionals as well volunteers. Based on interviews with Buddhist priests working in the affected areas of Northeastern Japan and the ethnographic observations of their ongoing care-giving, I examine how Buddhist notions like preciousness of life or commonness of suffering are contrasted with medical and social discourses of trauma, illness and recovery as Japanese Buddhist priests venture beyond their traditional role as carers of the dead. I then show how such negotiations have led to a variety of collaborative efforts across these three domains as well as to a level of standardization in vocabularies and practices, despite the underlying difference in the understandings of the very existence of the illness and the possibility of cure.

Ownership of illness and the politics of healing: treating nodding syndrome in northern Uganda

Author: Karin van Bemmel (Ghent University)  email

Short Abstract

Nodding syndrome is an unknown affliction that has affected thousands of children in northern Uganda, South Sudan and Tanzania. The limited knowledge on its etiology, mode of transmission, pathogenesis and clinical course leaves room for collective constructions of illness, misfortune and healing.

Long Abstract

Nodding syndrome (NS) is an unknown affliction that has affected thousands of children in post-conflict northern Uganda, South Sudan and in Tanzania. The limited knowledge on its etiology, mode of transmission, pathogenesis and clinical course leaves room for collective constructions of illness and misfortune by multiple actors. This paper focuses on the conceptualization of NS and notions of healing, based on 15 months of qualitative fieldwork in northern Uganda. Besides its biomedical importance, NS offers a model for social disharmony in which it is linked to conflict, poverty and frustrations over neglect. The unknown cause and cure elicit different explanatory models suggesting a variety of etiological factors, ranging from onchocerciasis volvulus and mycotoxins to the role of revengeful spirits connected to histories of violence. These models are linked to different notions of healing; e.g. herbal and biomedical treatment is circulating, ceremonies have been held to chase out 'cen' and Islamic healers use Quran recitations to treat the affected children. Since effective treatment is lacking, the 'quest for a cure' continues, engaging different actors in a struggle for ownership of illness and treatment. Social, spiritual and political aspects are assimilated into narratives on its etiology and NS is used as a medium of communication to discuss other pressing issues in the affected area. This paper creates insight into the complex politics of illness and healing and illustrates the merging of scientific, social, political and spiritual domains in the context of a pluralistic medical system concerning the 'mysterious' nodding syndrome in northern Uganda.

Is a socio-anthropology of "recovery", "remission" or "cure" possible?

Author: Judith Hermann-Mesfen (UMR 912 SESSTIM)  email

Short Abstract

Medical anthropology has rarely systematically investigated the way patients become “normal” again, regain their health. I would like to show that process from illness (/sickness) to the end of it, deserve to be described precisely and analyse. And they finally can become an object of social science

Long Abstract

Social sciences of health have rarely systematically investigated the way patients become "normal" people again and regain their health. I would like to show that the process from illness (/sickness) to the end of it ; also called being cured, going into remission, or recovery ; deserved to be described precisely and analysed so they finally can become a object of social science.

Researchers in social sciences observe this process/event for a large range of pathologies, in several contexts on Northern areas. For instance, in Europe, sociologists studying cancer face different conceptions of the end of the disease (remission, recovery, etc) that mostly depend on culture. It appears that different approaches are used and lead to various conceptualisations.

Those studies and results will be compared (and confronted) to my anthropological data obtained in a Southern country, Ethiopia. I analyzed how people living with HIV/AIDS (PLWHA) submit themselves to the ritual of holy water in order to cure miraculously from AIDS.

Those diverse examples illustrate how complex, varied and embedded in society and culture are process leading a sick/ill person to become a "normal" one.

This event and its multiple definitions (which depend on the kind of disease/illness) might be considered at three levels : individual, cultural group and medical institutions. Could be interrogate when and how : (1) persons/subjects consider themselves as release and return to "normal" life ; (2) cultural and social groups consider those ; (3) health care systems establish, conceptualize and eventually name this process.

This panel is closed to new paper proposals.