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- Convenor:
-
Hayley MacGregor
(Institute of Development Studies)
- Location:
- JUB-116
- Start time:
- 10 September, 2015 at
Time zone: Europe/London
- Session slots:
- 2
Short Abstract:
Epidemiologists warn of a global rise in non-communicable disease. In some settings, chronic infectious diseases add to the burden of illness identified as progressive. The panel invites reflection on notions of chronicity and care in the face of conditions understood to be lifelong.
Long Abstract:
At a summit in 2011, the UN declared the rising global burden of non-communicable disease "a threat to development", especially in contexts where public sector health systems are still angled towards acute illness, and where people pay out-of-pocket for health and social care. In settings with a significant HIV prevalence, policy makers have been experimenting with models of care that "retain" people on biomedical regimens and taking medication over the longer term. This experience is increasingly seen as relevant to the challenge of providing for a broader range of progressive illnesses, often with the intention of "integrating" all such care. These developments reveal disjuntures in understandings of chronicity and care, across biomedical settings and beyond, in contexts where people seek services and support in the face of affliction.
This panel invites papers which explore different understandings of care for conditions that are thought to be chronic and lifelong. What might a greater presence of chronic illness mean in terms of notions of intergenerational support? What are the implications of biomedical framings that emphasise individual lifestyle change, and paradigms of care encouraging "self-management" of illness? How do people negotiate chronic ill health in their everyday lives and what support do they seek? How might commercial interests stand to gain from promoting categories of chronic disease? What are the implications of identifying those "at risk" of disease in contexts where access to treatment is limited, and how might the pragmatics of medicine in low resource settings shift the moral economy of care?
Accepted papers:
Session 1Paper short abstract:
This paper examines political, economic, and social synergies among chronic conditions that require attention by international stakeholders in research and healthcare delivery by an examining two case studies of women with Type 2 diabetes who are HIV-infected (Kenya) and HIV-affected (South Africa).
Paper long abstract:
There is growing suspicion among researchers and practitioners that Type 2 diabetes and HIV/AIDS are converging among low-income populations in Sub-Saharan Africa. This paper critically examines two narrative case studies drawn from anthropological research in urban Kenya and South Africa of women with diabetes who are HIV-infected and HIV-affected. The first narrative introduces Ester, a middle-aged woman with diabetes and HIV residing in Nairobi, Kenya, who faces complex medical and social problems. Ester describes how she has achieved compliance and control of her HIV via anti-retroviral treatment provided by the President's Emergency Plan for AIDS Relief (PEPFAR). Yet, because international aid does not target non-communicable diseases (NCDs), out-of-pocket payments for diabetes testing and medicines and high cost of healthy foods impede diabetes management. The second narrative introduces Sibongile, a middle-aged woman with diabetes residing in Soweto, South Africa, whose role as caretaker for her AIDS orphaned grandchildren poses economic and social challenges for diabetes care. Sibongile's narrative also introduces an emergent "chronic illness" stigma, imbuing sociomedical links between HIV/AIDS and diabetes. These narratives illustrate how international donor stipulations, such as funds dedicated exclusively for HIV/AIDS, and public messages about what it means to be sick in the context of high HIV prevalence can fail to meet medical and social needs of people with chronic illness. Thus, the political, economic, and social synergies among these chronic conditions require more attention by international stakeholders in healthcare delivery and research in order to cultivate effective interventions for a changing epidemiological landscape.
Paper short abstract:
This paper explores ‘coming of age’ in a South African township in the context of HIV chronicity. Against this backdrop we explore the experiences, opportunities and risks for young people, as well as the ways that these contribute to new understandings of generation, social status and responsibility.
Paper long abstract:
Since ART became available in the public sector over a decade ago, the meanings and experiences of the epidemic have changed significantly. Widespread access and adherence to treatment have transformed HIV into a chronic and presumably more 'manageable' condition. While many of the challenges associated with HIV persist, they persist in a context where the epidemic's immediate and pressing visibility has decreased. For young people 'coming of age' today in South Africa, HIV has come to hold very different meanings in their worlds and trajectories.
In Khayelitsha, where HIV's prevalence remains considerable while its visible traces recede, the ways that young people engage in relationships, of both sexual intimacy and of care, have shifted in comparison to earlier generations. Using ethnographic case studies from Town Two, Khayelitsha, I highlight some of the ways that living in this new context has informed the experiences, opportunities and risks for young people, as well as the ways that these contribute to new understandings of generation, social status and responsibility.
Paper short abstract:
Indians and Pakistanis decrease medication dosage and turn to non-allopathic remedies so to avoid medications side effects. Remedies are combined with allopathic ones and at times also replaced. Indians and Pakistanis desire having a grater role over main decisions about their diabetes self care.
Paper long abstract:
Drawing on data collected during a sixteen-month ethnographic investigation, this article explore practices around Indians' and Pakistanis' use of herbal medications for diabetes control. The research revealed that respondents showed great resistance in adhering to medication prescriptions for diabetes control due to their various side effects, especially within the stomach. In order to avoid such side effects, respondents decreased medication dosage and turned to non-allopathic remedies that usually consisted of herbal medications, which according to Indians and Pakistanis, not only did not cause side effects, but also tackled the cause of the disease rather than its symptoms. Such remedies however, were not only combined with allopathic ones but also eventually replaced without the doctor's consultation. The research showed Indians' and Pakistanis' desire to have a grater role over main decisions about their diabetes self care health regime.
Paper short abstract:
Polycystic ovary syndrome (PCOS), a lifestyle disease with outcomes on fertility, appearance, and diabetes risk, affects a growing number of Indian women. Here, I investigate the interaction between sociocultural change in contemporary India, PCOS, and lived experience of the condition.
Paper long abstract:
Polycystic ovary syndrome (PCOS), an endocrine disorder with no known cure that compromises fertility, is a lifestyle disease affecting a growing number of urban middle-class Indian women. Linked to type II diabetes risk, PCOS is the leading cause of female infertility worldwide, but the syndrome has received scant attention in the social science literature. There is also a paucity of clear epidemiological studies on PCOS in India, but media accounts and medical practitioners have noted a recent rise in cases in urban India and attribute it to modernization, disrupted circadian rhythms, stress, and lifestyle changes following on the heels of neoliberal reforms beginning in 1991, which opened up the country to processes of globalization. PCOS is thus both a symbol of rapid sociocultural change in India and the embodied manifestation of the biosocial stresses caused by such a change. As a lifestyle disease, PCOS must therefore be addressed not in terms of decontextualized lifestyle practices and behaviors—which is the view taken by most medical practitioners—but by locating these behaviors within the specific circumstances in which PCOS-affected bodies are enmeshed, particularly the pressures to embody "modern selves." Nevertheless, I argue that even though the syndrome (through its effects on fertility and appearance) poses a challenge to women's traditional roles as wives and mothers, rapid sociocultural change and medical technology provide women with potential for new identities. Their aspirations are therefore simultaneously aided and constrained by the very same sociocultural changes that make them vulnerable to PCOS.
Paper short abstract:
We present findings of recent in-depth interviews conducted with patients with podoconiosis, a lifelong progressive condition common in tropical highland areas of Africa. Particular emphasis is given to recognition of the condition, to health-seeking behaviours and to perspectives on self-care.
Paper long abstract:
Podoconiosis is a chronic, non-infectious disease affecting individuals exposed to red clay soil in highland tropical areas. The condition is characterised by lymphoedema (limb swelling) and episodes of intense pain. Podoconiosis is very disabling, limits patients' ability to work, and leads to psychological harm through exclusion from school, community and religious meetings. Care of lymphoedema requires adherence to a simple regime of self-care practices, including foot hygiene, elevation, exercise and self-referral if appropriate.
In-depth interviews were used to explore the complex interaction between cultural beliefs, lay treatment-seeking behaviour and self-care practices among podoconiosis patients in northern Ethiopia. These were examined in the context of patients' wider understanding of illness that is chronic in nature. Dixon-Woods' theoretical model of Candidacy was used to explore the stepwise decisions made by patients towards treatment. This model remains underused in the context of chronic diseases in rural African societies and the present study focused on its early stages, namely the way patients come to recognise their illness and how this influences subsequent treatment choices. Particular consideration was given to overlap and potential conflict between lay and biomedical pathways to care. The role of social taboo and support networks on these first steps towards treatment were explored, including how they ultimately influenced timely access to healthcare and adoption of effective self-care practices.
Preliminary results highlight the importance of faith-based ("holy water") and herbal treatments. Self-care barriers include concern over cold water required for foot washing, possibly from belief that podoconiosis is associated with "chills".
Paper short abstract:
Despite the elusiveness of a cure for cancer, therapeutic advancements have extended the lives of those affected by it. The chronification of cancer impacts aspects of daily life. The presentation shows results of a mixed-methods study regarding the impact of cancer rehabilitation in Austria.
Paper long abstract:
Despite the elusiveness of a cure for cancer, therapeutic advancements have extended the lives of those affected by the disease. The chronification of cancer impacts aspects of daily life for those with cancer, such as management of side effects, permanent physical weakness, and pain. In Austria, cancer patients under retirement age are eligible to attend state-sponsored, three-week, in-house cancer rehabilitation programs. The goals of rehabilitation are to help those with cancer regain responsibility for their personal duties and needs, and to reintroduce them to their place of employment. This paper presents results of an ongoing mixed-methods study regarding the impact and interpretation of cancer rehabilitation by attendees in Austria. Fieldwork is currently being carried out in two rehabilitation centers which are financed by different public social insurance programs in the province of Burgenland. Initial findings reveal a dichotomy between program coorindators' and patients' goals in regard to the process of cancer rehabilitation within and outside the center. Mauss´ (1934) theory of "body techniques" serves as a means of interpreting the diverse therapies and behaviors with the body that are applied by therapists to patients to overcome (temporary or permanent) physical impairments. Lock and Shper-Hughes (1987) concept of the "mindful body" can be applied to understand the discrepancies between the state's goal of reducing further healthcare costs related to cancer care, the personal needs of those living with cancer, and the society´s acceptance (or rejection) of the chronically ill.
Paper short abstract:
In this communication we want to reflect about the results of an ethnographic research made in the Aosta hospital with the terminal sick people of cancer. Which kind of healing do they have from the palliative treatments?
Paper long abstract:
In this communication we want to reflect about the results of an ethnographic research made in the Aosta hospital with the terminal sick people of cancer. Which kind of healing do they have from the palliative treatments? Do they exactly know what does "palliation" mean? And in which kind of sense we can talk about treatment as caring and not like curing, since he arrived at a study of incurable illness? Which is the perception of the sick person given by the operators and his body in decline, eaten away by the sorrow and the inactivity? Does accompany towards a "good death" mean nursing anyway? The reflection emerges by the evaluation of the interviews and the participating observation made together with the patients, relatives and operators, by the comparison with other nurse's realities, whom majority is European, with the evaluation of the current literature.
Paper short abstract:
Based on research in Jordan, this paper examines how the chronicity of cancer intersects with forms of social affliction. It thinks through the concept of prognosis to explore how the designation of cancer as an epidemic transforms the body into a tool of care provisioning.
Paper long abstract:
After documenting hundreds of new cancer cases among recently arrived refugees in Jordan in May 2014, the Deputy Director of the UNHCR, lamented that, "we can treat everyone with measles, but we can't treat everyone with cancer. We have to turn away cancer patients with poor prognoses because caring for them is too expensive." At a moment when global health experts have declared cancer to be an emerging "epidemic" in the Middle East, governments across the region are revising national cancer control plans to mitigate the anticipated impact of increasing cancer incidence rates to diverse populations with differential access to health services. Based on ethnographic research conducted in Jordan, this paper examines how the chronicity of cancer unravels the logic of crisis that underwrites global health interventions. Taking the concept of "prognosis" as an analytical provocation, it asks how the recent designation of cancer as an "epidemic" transforms the body into a tool of care provisioning?