The power of popular opinion in everyday primary care provision in urban India

ABSTRACT

Studies of power in health care settings in low- and middle-income countries largely describe providers’ exercise of discretionary power in frontline roles, leaving under-specified the macro-institutions and mechanisms of power that drive health care outcomes. In this study I conceptualise providers’ actions not in terms of discretionary power but as obligatory responses to ‘authority’ over them. Authority denotes an actor’s rightfully held social power over others, who accept to follow that actor's directives. Explaining authority’s workings entails studying how it operates from its subjects’ perspectives. I analyse in particular the authority of popular opinion—which derives from citizens’ claims to state services—over primary care doctors in municipal health facilities in Pune, India. Through year-long ethnographic fieldwork, I examine doctors’ experience of popular opinion, social relations between doctors and communities, and the institutional history of state-provided urban primary care. Findings show that doctors routinely confront popular disregard for their services. But under conditions of long-standing neglect of municipal services, tenuous state-society relations, and an avid, widely preferred private sector, doctors appear unable and wary to deliver more than minimum clinical care. Their circumscribed response reflects mechanisms by which the power of popular opinion, under policy neglect, impels them to maintain a deficient status quo.     

Health States of Exception: unsafe non-care and the (inadvertent) production of ‘bare life’ in complex care transitions

This paper draws on the work of Giorgio Agamben to understand how the social organisation of care transitions can reduce people to their ‘bare’ life thereby making harmful and degrading treatment seemingly legitimate. The findings of a 2-year ethnographic study show how some people experience hospital discharge as undignified, inhumane and unsafe process, expressed through their lack of involvement in care planning, delayed discharge from hospital and poorly coordinated care. Our analysis explores how these experiences stem from the way patients are constituted as ‘unknown’ and ‘ineligible’ subjects and, in turn, how professionals become ‘not responsible’ for their care. The result being that the person is reduced to their ‘bare’ life with limited value within the care system. We suggest that the social production of ‘bare life’ is an inadvertent consequence of reconciling and aligning multiple disciplines within a complex care system.     

‘We can’t do that here’: negotiating evidence in HIV prevention campaigns in southwest China

Disease prevention and health care delivery, areas traditionally governed by the nation state and local communities, are increasingly being inhabited by ‘mobile sovereigns’ who carry a global currency of prevention strategies and treatments grounded in the universal standards of scientific evidence. Drawing on ethnographic evidence from research conducted on HIV in southwest China, this paper examines the impact of evidence-based science on the effectiveness of global health programming. It interrogates the intentions of global health partnerships and how the balance of power waged between those with money, science, and technical expertise, and those seeking assistance and resources, influences global health programming. Ultimately, the paper demonstrates the disconnect between the demand for a system of universal standards developed on the basis of scientific evidence and an appreciation for the local context, which shapes the way these standards should be modified for effective implementation of global health programs.     

Fathers' participation in childbirth at a public hospital: institutional difficulties and motivations of couples

Participation by fathers in the process of childbirth, an aspect of the humanization of obstetric care, helps foster the fathers' involvement in raising their children. This participation provides psychosocial support for pregnant women during labor and delivery, sharing of the experience by the couple, and father-child bonding. The focus of this ethnographic research was the impact of this process on fathers participating in childbirth at a State hospital in Rio de Janeiro, with two stages: participant observation of labor and delivery and eleven interviews with fathers who had been present at delivery. Fathers' participation was influenced by: the motivation of mothers and fathers; social representations of delivery and fatherhood; and exclusion of fathers from reproductive health and pediatrics services. The father's participation was not valued by the attending staff as either a source of emotional support for the mother or as part of fatherhood. The following are necessary: inclusion of fathers in prenatal care, delivery, and pediatrics services; the training of staff to work with the families; social discussion of fatherhood and health services policies to ensure the presence of fathers during labor and childbirth.     

Articulating mobile gendered landscapes: Thinking with care cultures

This paper relates work on global neoliberal gendered labor to geographies of care and it provides a tangible example of culturally specific dimensions of the relationship between health and place. The context is a temporary work migration pattern of Bulgarian women in Italy, who provide 24/7, live-in care to elderly, often dying patients. Through a longitudinal ethnographic fieldwork, this paper illustrates how mobile gendered landscapes are articulated and made meaningful by the research participants, offering a different reading of global care regimes. I argue that this articulation is a way of thinking with care cultures and showing how these are (re-)imagined by women who care in less than caring institutional/economic/familial landscapes. The paper contributes the concept ‘care cultures’ as a productive lens, through which to account for how place, people, ethics and care practices grow, merge and (mis-)align in attempts to construct and maintain meaningful lives.     

The role of social work in discharge planning

Changing social policy and scarce resources affect the delivery of health and social services. Higher costs mean shorter stays in hospitals. People are being discharged ‘quicker and sicker’. This paper considers discharge planning policies and practices in America, in relation to a recent study on hospital social work in Madison, Wisconsin. It supports the view that discharge planning is a highly skilled activity, integral to social work and best done by qualified, trained workers. Such findings have relevance for Britain, where demands for cost effectiveness in the managemennt of care has raised the profile of discharge planning. In processing these changes, social workers are having to redefine their role in health care.     

The 2017 reform of the hospital sector in Poland – The challenge of consistent design

Beginning in October 2017 a system of basic hospital service provision, popularly called the ‘hospitals network’ was implemented in Poland. It covered 594 hospitals out of a total number of approx. 920 operating in 2017. The regulation’s official objectives were to: “(1) improve the organization of services delivered by hospitals; (2) improve access to hospital care; (3) optimize the number of specialist wards; (4) improve coordination of in- and out-patient care; (5) facilitate hospital management”. The aim of this paper is to describe the background of the reform planning and its formal objectives, content and implementation process, as well as to assess the preliminary results and discuss the possible limitations and implications. Although the official term ‘hospitals network’ is used to describe the reform, in practice it does not involve an element of cooperation between hospitals. The regulation’s main feature was changing the financing methods for a pre-defined scope of services (from per-case to global budget).The reform was planned and implemented on a rather ad-hoc basis while its major controversy is the lack of quality of care, health outcome and population health need measures in the network inclusion criteria. The assessment of the reform’s impact on service provision requires long-term analysis and access to detailed quantitative data.     

The inequalities of medical pluralism: Hierarchies of health, the politics of tradition and the economies of care in Indian oncology

India has an eclectic health system that incorporates biomedical as well as traditional, complementary and alternative medicine (TCAM). Our understanding of the co-existence of these therapeutic modalities in this diverse, postcolonial and developing nation is extremely limited, and in the context of cancer care, to our knowledge no sociological work has been carried out. Contemporary Indian oncology represents a fascinating site for examining the interplay and articulation of forms of tradition/modernity, economic progress/structural constraint and individual beliefs/cultural norms. In a context of an increase in the prevalence and impact of cancer in an ageing Indian population, this paper reports on a qualitative investigation of a group of oncology clinicians' accounts of ‘pluralism’ in India. The results illustrate the embeddedness of patient disease and therapeutic trajectories in vast social inequalities and, indeed, the intermingling of therapeutic pluralism and the politics of social value. We conclude that notions of pluralism, so often espoused by global health organisations, may conceal important forms of social inequality and cultural divides, and that sociologists should play a critical role in highlighting these issues.     

The rise of cancer in urban India: Cultural understandings, structural inequalities and the emergence of the clinic

Cancer services in India have evolved and expanded significantly in recent years, with a surge in the availability of biomedical oncological treatment facilities for certain cohorts of the Indian population in urban areas. Despite significant and sustained economic development in many areas of India, major issues persist in the delivery of cancer care, even in the context of relatively prosperous urban populations. This article explores the dilemmas evident in Indian cancer care as perceived by a group of Indian oncology clinicians. Specifically, the interviews focused on their perspectives on the key challenges facing cancer patients, particularly in relation to help-seeking and access to care. The main concerns that emerged in the interviews were: (a) practical constraint (i.e. access and treatment); (b) cultural values (i.e. communication, stigma and the clinic); and (c) structural conditions (i.e. inequalities related to place, gender and class). We unpack these as important elements of cancer care in contemporary India, and present Farmer's notion of structural violence, among other concepts, as potentially useful for understanding some facets of this social problem. We conclude that without a greater understanding of social and cultural issues shaping cancer care in India, little progress will be made in coping with a disease that is set to become a major burden within an increasingly prosperous and ageing population.     

Navigating ‘ethics in practice’: An ethnographic case study with young women living with HIV in Zambia

ABSTRACT

While ‘procedural ethics’ provides essential frameworks for governing global health research, reflecting on ‘ethics in practice’ offers important insights into addressing ethically important moments that arise in everyday research. Particularly for ethnographic research, renowned for it’s fluid and spontaneous nature, engaging with ‘ethics in practice’ has the potential to enhance research practice within global health. We provide a case study for such reflexivity, exploring ‘ethics in practice’ of ethnographic research with middle-income young women living with HIV in Lusaka, Zambia. We explore the ethical issues arising from the layered interaction of the population (young women), the disease under investigation (HIV), the method of study (ethnographic), and the setting (Zambia, a lower middle income country). We describe how we navigated five key practical ethical tensions that arose, namely the psycho-emotional benefits of the research, the negotiated researcher-participant relationship, protecting participants’ HIV status, confidentiality and data ownership, and researcher obligations after the end of the research. We exemplify reflexive engagement with ‘ethics in practice’ and suggest that engaging with ethics in this way can make important contributions towards developing more adequate ethical guidelines and research practice in global public health.     

General practitioners’ perceptions of their role in cancer follow-up care: A qualitative study in the Netherlands

Background: In the last few decades there has been a considerable increase in the number of cancer survivors. Health policy makers would like to see cancer follow-up care moved from secondary to primary care. Method: Between 2008 and 2010, a qualitative study among primary health care professionals was performed to get more insight into the way they care for cancer survivors. Analysed was whether a coordinating role in cancer survivorship care would fit in with the practical logic underlying the way the general practitioners work. Results: In their everyday work, general practitioners are used to provide care in a reactive way. Based on this habitus, they classify their patients into ‘not special’ and ‘special’ ones. Since general practitioners label cancer survivors as ‘not special,’ they expect these patients to take the initiative to ask for help and present their complaints in a clear and complete way. Their habitus as a gatekeeper implies that they are reticent about referring patients to other primary health care professionals. In regard to ‘not special’ patients, such as cancer survivors, general practitioners appear to build on the patients’ own strengths.

Conclusion: The emphasis on a wait-and-see attitude in contemporary Dutch general practice, as well as the general practitioners’ role as a gatekeeper are at odds with the proactive and holistic approach inherent to a coordinating role in cancer follow-up. Therefore, we assume that it will be difficult for general practitioners to shape a pivotal role in this care.     

Identifying needs and setting priorities: issues of theory, policy and practice

The National Health Service and Community Care Act 1990 signalled an explicit shift away from a service-driven to a needs-led pattern of delivery for both health and social care. However, a definitive meaning of ‘need’ is elusive. Where the work of health and social care agencies is related closely, as in community care, recognition and careful handling of different approaches to need is important for effective inter-sectoral collaboration and supply of appropriate care to service users. This paper examines three dimensions of need: theory, policy and practice. Some key components of the theoretical debate about the meaning of ‘need’ are explored briefly, particularly in relation to health, and a set of questions is extracted that underpin the construction of need in policy and practice. These questions are then applied to a comparison of policy guidance documents for needs assessment for health and social (community) care. While the documents demonstrate some similarities in their view of need, there are also material differences. These differences have implications for the supply of services at the boundary between health and social care, some examples of which are discussed. Given a lack of consensus in defining and measuring need, the paper concludes with a framework of key questions which could enable purchasers and providers of health care to be more explicit about the bases upon which ‘needs-led’ services are defined and delivered.     

Postal survey of physicians and laboratories: Practices and perceptions of molecular oncology testing

Background  

Molecular oncology testing (MOT) to detect genomic alterations underlying cancer holds promise for improved cancer care. Yet knowledge limitations regarding the delivery of testing services may constrain the translation of scientific advancements into effective health care.     

Paruresis (Shy Bladder Syndrome): A Cognitive-Behavioral Treatment Approach

The oncology social worker is a core profession in the psychosocial care of cancer patients, and has been scrutinised according to its role, function, and delivery of care, primarily from an Anglo-Saxon perspective. There is, however, a lack of studies outside this context, and empirical studies based on individual data. This study is a contribution by exploring the variability in clinical practice from a Swedish perspective. It is based on documentation from one oncology social worker’s (OSW’s) patient contacts over the course of one year. The essence of the majority of contacts was counseling and the patients displayed a wide variety of motives for seeing an OSW. The function of the OSW is thus multifaceted, and the findings suggest that the OSW, in addition to guiding patients in social legislation issues, also should be prepared to act as an anchor in an acute crisis, contain despair in different phases of the trajectory, and facilitate the ‘carrying on as before’ or finding a ‘new normal’. The paper discusses the importance of the OSW being acquainted with different counseling/psychotherapy perspectives in the illness context, but primarily the importance of having the ability to establish a ‘working alliance’ with their patients.     

Perceived health concerns among sexual minority women in Mumbai,India: an exploratory qualitative study

The experiences of sexual minority women (i.e., women who do not identify as ‘heterosexual’) in India have largely been absent in scientific literature. In partnership with India’s oldest and largest sexual and gender minority-advocacy organisation, the Humsafar Trust, our study used community-based participatory research principles to explore the lived experiences and health concerns of sexual minority women in Mumbai. Study methodologies included interviews with key informants, a focus group comprised of six women, and an additional 12 in-person interviews with sexual minority women to identify important physical, mental, social and other health priorities from these women’s perspectives. Thematic data are organised within the framework offered by the social ecological model, including individual, interpersonal, micro and macro levels. Findings from this study are important in providing the groundwork for future research and intervention involving sexual minority women in India, a dramatically underserved population.     

Mediating risk through young women’s marital arrangements and intimate relationships in low-income communities in urban India

Abstract

This paper draws on ethnographic data collected from two low-income communities in Mumbai India to explore types of risk and intimacy associated with marital practices. A rapidly globalising India offers access to media, social networks and changing gender norms that create opportunities for young women. Concurrently, enduring patriarchal norms impact marriage and the development of intimacy. Young women whose parents decide on early arranged marriages face inequity and difficulties in establishing emotional and physical intimacy with their husbands. Some young women and their families delay an arranged marriage to ensure educational and/or career advancement, seeking a husband and family that will appreciate her independence. Young women in delayed arranged marriages are more prepared for marital relationships but may experience difficulties meeting family and career expectations and establishing intimacy. Young women who develop their own relationships that evolve into ‘love’ marriages can initially achieve high levels of intimacy, but the strains stemming from the loss of family support can later undermine the spousal relationship. Within and across these different marital types, there is also a great deal of fluidity and variation in young women’s experiences as they adapt to globalised and patriarchal norms in urban India.     

Cancer Incidence in Indians from Three Areas: Delhi and Mumbai,India, and British Columbia,Canada

Background Studies of immigrants have provided unique opportunities for examining disparities in cancer screening and the impact of lifestyles and environmental exposures on cancer risk. Findings have been useful for planning cancer control strategies and generating etiological hypotheses. Although India is a leading source of immigration to British Columbia (BC), Canada, little is known about the cancer profiles of Indo-Canadians, information needed for planning health services and health promotion initiatives for this population. Methods Using data from three population-based cancer registries, cancer incidence was compared for four population groups (in each of Delhi and Mumbai, India; Indo-Canadians in BC, Canada; and the BC general population) over three time periods (1976–1985, 1986–1995 and 1996–2003). BC Indo-Canadians were identified by using Indian surnames. Results Age-standardized incidence rates (ASRs) for all cancers combined were lowest for men and women in Delhi and Mumbai, intermediate for BC Indo-Canadians, and highest for the BC general population. Ranking of common cancer sites and ASRs for Indo-Canadian men and women more closely resembled those for the BC general population, rather than those for either Delhi or Mumbai. ASRs and rankings of common cancer sites are presented by gender for the four population groups. Conclusions Cancer incidence patterns in BC Indo-Canadian men and women differed from those in India, being more similar to the BC general population.