EASA2014: Collaboration, Intimacy & Revolution

(P098)

Living with chronic illness: challenges and perspectives across borders

Location A-303
Date and Start Time 02 August, 2014 at 09:00

Convenors

Margret Jaeger (SFU Private University ) email
Lucas Melo (Federal University of Rio Grande do Norte) email
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Short Abstract

Chronic illnesses are rising in numbers and severity everywhere. The panel brings together perspectives about chronic illnesses such as public health institution´s concerns, patients' experiences and caregivers' standpoints, all collaborate on different levels for the improvement of people´s health.

Long Abstract

Since life conditions are changing for many people in the world, technology advances and life expectancy raises continuously, chronic illnesses, from infectious and non-infectious diseases (multimorbidity) and the challenges to live with them are rising too. The panel wants to bring together different perspectives about chronic illnesses such as public health institution´s concerns, patients' experiences, caregivers' standpoints and technologies to help patients and professionals to deal with it. These groups of people/institutions collaborate to improve people´s health in many ways. Chronic Illnesses such as diabetes, heart diseases, Alzheimer, Parkinson and cancer force people to adjust their life in accord with their medical regimen. Educational programs are developed by public health services, self-help groups support individuals and their relatives and technologies such as tools of ambient assisted living make their contribution to improve people´s daily routine as well as their wellbeing even though they are not healthy any more. Medical anthropology offers the theories and methodologies to understand both the people's individualized illness experiences and also groups' or systems' actions and reactions to them. The panel invites colleagues working on a broad range of topics related to chronic diseases in different countries in order to have a cross-cultural perspective. In this sense, the panel aims examine the private and public dimensions of the chronic illness experience in different social spaces, such as the family, work, everyday life, and clinical settings. Also presentations about new methodological tools to deal for example with persons who have impaired perception or related issues are welcome.

Discussant: Aysecan Terziolgu (Koc University), Bernhard Hadolt (University of Vienna)

This panel is closed to new paper proposals.

Papers

Social relationships' influence on children's health: an anthropological study of social relationships and future risk of developing multimorbidity among children from poor socioeconomic areas

Authors: Elisabeth Søndergaard (Institute of Public Health)  email
Susanne Reventlow (Faculty of Health Sciences, University of Copenhagen)  email
Pia Christensen (University of Leeds)  email

Short Abstract

New studies in multimorbidity show an association between adult patients with multimorbidity and the experience of having had a difficult childhood. This project suggests investigating the link between children’s social relationships–with peers and important adults–and their present health profile.

Long Abstract

There is a significant social gradient in health, which is reflected in the pattern of multimorbidity. At the same time, research shows that nourishing social relationships can make up for existing risk factors for developing disease. Recent years' research has increased our understanding of the link between children's circumstances during childhood and the individual's physical, mental and cognitive potential throughout life. Studies have shown a connection between parents' socio-economic situation and health and the child's current and future health profile. Self-rated physical and mental health among children and young people are negatively linked with parents' social position, meaning that children of less educated mothers and children of parents on benefits report having it worst. At the same time, children who frequently experience abdominal pain, more often than other children, have mothers with a history of pain problems, serious physical illness or anxiety and/or depression. Furthermore, children with frequent headaches more often feel lonely, and children, who experience traumatic events in childhood, including severe somatic disease among close family members and/or dysfunctional family relationships and/or parental work loss, are at greater risk of developing somatic diseases. If well-functioning social relationships in childhood promote psychological well-being and provide better health throughout the individual's life, then social relationships in childhood might have a preventive effect on health over time and thereby decrease the risk of developing multimorbidity later in life. The purpose of this planned project is to explore how social relationships for children in families with low socioeconomic status and parents with multimorbidity affect their physical and mental health.

A closed institution and its friends: family care for the chronically mentally ill in Poland

Author: Andrzej Perzanowski (University of Warsaw)  email

Short Abstract

Drawing on ethnographic fieldwork focused on extra-institutional care in the psychiatric hospital, the paper discusses the conditions of social reintegration of chronically mentally ill persons in Poland. The theoretical focus is the functioning of a total institution in a rural context.

Long Abstract

This paper discusses the processes of deinstitutionalization of healthcare of chronically mentally ill persons in Poland, focusing both on the psychiatric critique of total institutions and on the shifting economic and medical contexts. The paper is based on ethnographic and historic material collected during research on the extra-institutional care organized by the biggest psychiatric hospital in eastern Poland. Since 1930s there has been implemented a form of therapy called family care, which included patients diagnosed as chronically mentally ill and therefore unable to live outside the institution who did not have any relatives. The family care consisted in delegating patients under the care of families inhabiting villages in the vicinity of the hospital. This practice was justified by psychiatric critiques of hospitalization - the environment of psychiatric hospital was considered harmful and pathological and community care was viewed more favourably. Psychiatric literature and my ethnographic research indicate strong bonds between patients and their host families which, combined with the influence of rural environment and the possibility to help with everyday chores were believed to have positive therapeutic impact even on most seriously ill patients. Nonetheless, the practice of family care was abandoned in 2012, following changes in the state healthcare system.

This paper's theoretical focus is the functioning of a total institution in a rural context. Paradoxically, it was the multifold influence of the hospital that made social reintegration of chronically ill patients possible, especially by the lessening of social fears against mentally ill persons.

The chronic isolation: experiencing Hansen's disease in Europe's last leprosarium

Author: Andrei Mihail (SNSPA Bucharest)  email

Short Abstract

This paper focuses on the strategies elaborated by inhabitants of the leper's hospital of Thichilești (RO) in order to create new meanings for an almost enclosed life inside the medical institution.

Long Abstract

Being confined in the leprosarium meant losing your connections with the outside world due to the disease. Hansens Disease is, as Bury (1982) sugests, either a disruption of the individual`s biography for those who got it from the outside, or the biography itself for inhabitants of the institution who were born here from ill parents. In this paper I will describe the social life of Tichilești, one of the last lepers hospitals in the world. Focusing on the personal experience of those who are living in the institution, this paper will elaborate on the strategies inhabitants develop in order to construct purpose in a place almost disconnected from "liberty". Formal rules of the institution, like scheduled meals or frequent medical exams are mixed with informal practices of domestication of the hospital in order to shape a meaningfull experience oposed to a stigmatizing outside. For them, leprosy constructs the unique dichotomy of a gated well-being adjacent with a longed, but almost intangible liberty. Stigma becomes an embedded part of the daily experience as noted not just by the permanent inhabitants of the hospital, but also by some of the medical and auxiliary staff of the institution.

Living with thalassemia in Cyprus

Authors: Costas Constantinou (University of Nicosia Medical School)  email
Christina Loizou (RUBSI - Reseasrch Unit in Behaviour and Social Issues)  email
Constantinos Phellas (University of Nicosia)  email

Short Abstract

This paper presents a qualitative analysis of the experiences of ten patients with thalassemia in Cyprus and their partners.

Long Abstract

Through a screening programme implemented in the 1970s, Cyprus has managed to control the birth of children with Thalassemia. In the 1990s the number of births of children with Thalassemia dropped to zero, while today there are about six hundred patients with Thalassemia who are under systematic blood transfusion and iron-chelation therapy. Based on in-depth interviews with ten patients and their partners, this paper explores what it means to live with Thalassemia in Cyprus. The paper discusses how patients deal the challenge of stigma and balancing between a demanding therapy schedule and a busy social life. The participants were selected from the registry of the Cyprus Thalassemia Organisation, the interviews were audio recorded, transcribed and analysed through Atlas Ti software. This qualitative research is part of a larger study which explores the quality of life of patients with Thalassemia in Cyprus and is co-funded by the Republic of Cyprus and the European Regional Development Fund. The study has been approved by the Cyprus National Bioethics Committee.

How autism is lived: ethnographic notes on the care that recovers the development

Author: Leonardo Campoy (PPGSA-UFRJ)  email

Short Abstract

How autism can be cared? Based on ethnography, I propose

to indicate that stimulation and orientation are practiced as a daily

way of development and to demonstrate that this "care that develops" is

the way how the chronicity of autism is elaborated by its agents.

Long Abstract

Biomedical professionals say that autism cannot be cured.

They say that it will remain within the person until her last days of

life. But, on the other side, they say that its damages can be

mitigated, they say that proper stimulation and orientation can reduce

the impact of autism in a person's body and mind. This way of dealing

with this mental pathology is what the biomedical professionals and the

therapists would call recovery for the autistics. Taking stimulation and

orientation together, it can be said that, for autism, recovery is a way

of care that aims to develop the person. To work, this care has to be

intensively done in a daily basis throughout the person`s life.

How this "care that develops" is done in practice? I have been doing

ethnography with professionals and families that deal with autism in

Brazil, accompanying their practices and efforts to bring more "quality

of life" for the autistic. I would like to demonstrate that this "care

that develops" only works if it is practiced in a quotidian basis, that

is to say, if life becomes a never-ending act of stimulation and

orientation.

This will only be achieved if a collective of persons, actions, ideas

and objects are mobilized. To develop an autistic person, not only the

biomedical professionals and the therapists are working, but, also, a

whole compound of agents are stimulating and orientating the infant. The

family, here, is the main center of this work of collective collaboration.

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This panel is closed to new paper proposals.