Caregiving, ethical and informal: emerging challenges in the sociology of health and illness

The concept of care, integral to medical sociology and to the sociology of health and illness, suggests new challenges in two key areas of this field: 1) within professional socialization, an examination of socialization to ethical thinking, behavior, and identity among professional caregivers, building on the substantial literature already accumulated; 2) in the arena of hidden or informal care providers, an analysis of male and female informal providers and the productive work, other than care, done by these individuals. In both analyses, as well as in all medical sociology and sociology of health and illness, gender, race, and class require more attention. Both analytic endeavors influence the substance and the contours of the field.     

THE EMERGING ROLE OF THE MEDICAL SOCIOLOGIST IN PALLIATIVE CARE SETTINGS

The demographics of a rapidly aging society and the chronic nature of contemporary illness intersect in the twenty-first century to confront medicine with the challenge of reenvisioning health care at life's end. Using analytic, interpretive, and reflexive tools, the medical sociologist can assist health care teams in improving quality of life terminally ill patients and their caregivers. In this article, we explore the role of the medical sociologist in palliative care settings, discuss ways to integrate that role into the day-to-day processes of palliative medicine, and identify three areas of intervention where medical sociologists can bring a unique perspective to end-of-life settings. We conclude by examining impediments to the inclusion of the medical sociologist on the clinical team and discussing how these barriers can be addressed.     

Black women’s mental health matters: Theoretical perspectives and future directions

Despite recent sociological research exploring how stratification systems impinge on the health of socially disadvantaged populations, Black women’s mental health is rarely a topic of investigation among scholars of medical sociology, sociology of race and racism, or sociology of gender. In this review, we incorporate perspectives from sociology, social psychiatry, psychology, and social work to develop a transdisciplinary intersectional model of Black women’s mental health. We also present critical interventions in the extant literature. First, though stress exposure is generally associated with poor mental health, more research is necessary to ascertain the gendered-racialized stressors to which Black women are exposed, owing to their racial and gender oppression. Second, we admonish mental health scholars to incorporate other status dimensions (e.g., nativity, sexual orientation, age) to provide a more nuanced depiction of Black women’s psychological health. Third, the unique and enduring relationship between the U.S. punishment system and the mental health of Black women should be further explicated in future research. Last, we envision a body of work on Black women’s mental health that captures the ways in which they cope with societal level marginalization, as these forms of resilience and resistance may be mental health protective.     

Specialized foster care and group home care: Similarities and differences in the characteristics of children in care

Until recently, foster children who presented special medical or behavioral problems were largely served in group care environments. Specialized (or “treatment”) foster care has recently been developed to serve some of these challenging children. Although growing evidence points to the special needs of children in foster care, much is still unknown about how children placed in various out-of-home care settings differ from one another. The growth of specialized foster care as an alternative placement to group care, calls for examination of how children in these settings compare on demographic, educational, health, and behavioral characteristics. A cross-sectional mailed survey was distributed to all group care and specialized foster care agencies in a large state to address topics related to children's characteristics. Comparisons point to two groups of very difficult children, with unique mental health and health needs.     

HOW HEALTH STATUS IMPACTS THE TYPES OF INFORMATION CONSUMERS SEEK ONLINE

A few studies examine what types of health information people seek online, yet we know little about how this varies by health status. To examine this question we used data collected from a random sample of 2,038 adults for the Pew Internet and American Life Project, which asked respondents in the United States whether they searched for 16 different types of information. These 16 topics were grouped into three broad areas, including medical conditions and treatments, health issues (e.g. diet and smoking cessation), and providers and payment (e.g. a particular hospital). To build on prior literature, two measures of health status were used: a self-report and the presence of a medical condition. The data suggest that health status impacts the types of health or medical information people seek on the Internet. Self-reported health status was not significantly related to any of the topics; however, respondents diagnosed with a disability or chronic disease were more likely to seek medical information on 13 of the 16 topics addressed. These include specific diseases or medical conditions, medical treatments or procedures, experimental treatments or medicines, alternative treatments or medicines, pharmaceutical or over-the-counter drugs, diet, immunizations, smoking cessation, depression, sexual health, environmental health hazards, a particular physician or hospital, and Medicaid/Medicare (governmental health programs in the United States for the poor and elderly). These results suggest that individuals in the United States who have a medical condition are more likely than healthy individuals to research most health topics online. The Internet can provide consumers with a wealth of information on issues of health and illness, yet healthcare providers need to educate consumers to be cautious given the range in quality.     

Public Sociology or Partisan Sociology? The Curious Case of Whiteness Studies

This paper identifies the common themes in 245-plus refereed articles on whiteness studies that were published in academic journals after 1992 in an attempt to assess the implications of whiteness studies for the discipline of sociology. Of special interest is the relationship between whiteness studies and Michael Burawoy’s call for public sociology. I argue that the emerging field of whiteness studies identifies itself as a public sociology that is infused by the moral vision of critical sociology. Nevertheless, the field does not accept professional sociology as Burawoy defined it. The ontological, epistemological, and soteriological foundations of whiteness studies encourage the field to pander to one segment of the public—the marginalized—and condemn another segment of the public—“privileged whites,” thus rendering impossible a democratic dialogue on one of the most basic social issues of our time. Conflating Western epistemology with whiteness encourages a misreading of American social scientific work on race relations, thus opening the door to a so-called hermeneutics of suspicion. The result is not an innocuous “pop” sociology, but a partisan sociology, whose implications should caution sociologists against an uncritical embracing of public sociology.     

Black Interactionist Thought and the Lived-Experience Approach to Symbolic Interactionism

Du Bois is often regarded as an important scholar for his contributions to the development of sociology. However, less is known about his work in developing interactionist thought. This essay is an introduction to this special issue, and a small attempt to acknowledge the work of scholars of color within the interactionist tradition. The Du Bosian approach to sociology has for too long been dismissed out of hand. Scholars pursuing new areas of inquiry, topics outside the bounds of “mainstream sociology,” are often met with fierce resistance—even today. Instead of building these scholars up, through mentorship and aid, so-called “accomplished” scholars see fit to tear down the work of those not like them. The Du Bosian perspective celebrates the plurality of voices, advocates for mentorship, and sees sociological inquiry as rooted in the real needs and concerns of those so marginalized. As this collection of articles illustrates, even when conforming to scientific standards work in this tradition has a political dimension as it lays bare the inequities in society—even, at times, drawing government interference with their work. This issue also calls upon professional sociologists to reflect on the ways they reproduce these patterns within the discipline and higher education.     

Transforming national health policy: The significance of the stratification system

Policy formulation and decision-making occur within a continually changing sociopolitical environment. Presently, our national health policy lacks coherence and direction. It also is in a state of transition as evidenced by the recent restricted proposal to expand Medicare coverage to catastrophic illness. A comprehensive strategy for balancing escalating medical, hospital, and insurance costs as well as those associated with long-term care while extending access has not been devised. One of the most salient reasons for this is the failure of policy makers to grasp the complexities of the multifaceted stratification system. Its diverse, interrelated strata based on age, sex, economic status, and race are not incorporated in the process of shaping vitally needed and rational health policy. Doris Y. Wilkinson, a professor of sociology at the University of Kentucky, is a co-principal investigator on an intervention project funded by the National Cancer Institute. She recently received the Master of Public Health in Health Policy and Management from Johns Hopkins University.     

Beyond the Sociology of Diagnosis

The sociology of diagnosis offers a vantage point from which to study health and illness, linking a number of other threads of sociological thought. While there has been a growing interest in diagnosis since Mildred Blaxter's suggestion for a sociological exploration in 1978 – a call echoed by Brown in 1990 – it is timely to reflect upon the way in which sociologists engage with diagnosis. Within this review essay, I first consider what it is to “be a sociology” in general terms. I then explore the implications of this for an effective sociology of diagnosis, discussing the priorities it has recently developed as well as the directions its scholars might consider. Finally, I suggest ways in which sociologists of diagnosis could broaden their approach in order to advance their understanding of health, illness, and medicine.     

Networking in France. Is there a French School of Social Network Analysis?

Social Network Analysis (SNA) is a sociology based on interaction that visualizes and models relations between actors. Whereas interaction is approached by classical scholars, we had to wait until the 1970s and the birth of computer science to see social networks analysis develop. This article investigates the influence of SNA in France from the 1980s and wonder if there is a French school of SNA? To do so, we first resume social networks history and highlight its contribution to sociology. Second, we analyze the trajectory and profile of five “disciplinary entrepreneurs,” whose role in the field is important as they master three necessary languages for SNA: English, Mathematics and Computer Science. Third, in order to put back those individuals in their social structures, we cross SNA with the different French sociological tradition(s) (according to topics and methods). Last, we wonder if the institutionalization process succeeded in the creation of institutions from which a French SNA would be able to expand?     

Critical Perspectives on Digital Health Technologies

Discussions of digital health technologies in the popular media and the medical and public health academic literature frequently comment on how these technologies might offer new or improved ways of delivering health care, conducting health promotion activities and monitoring public health. Following the presentation of an overview of the range of digital health technologies that are currently in use, I review the work of researchers in the field of critical digital health studies who have addressed their broader social, cultural and political dimensions. The discussion focuses on four major topics: health and medical websites and platforms; telemedicine and telehealth; the politics of digital health; and digitised embodiment. I end with identifying some important directions for future research in critical digital health studies.     

Problems and prospects of measurement in the study of culture

What is the role of measurement in the sociology of culture and how can we sort out the complexities that distinguish qualitative from quantitative approaches to this domain? In this article, we compare the issues and concerns of contemporary scholars who work on matters of culture with the writings of a group of scholars who had prepared papers for a special symposium on scientific measurement held at the annual meeting of the American Association for the Advancement of Science (AAAS) back in 1956. We focus on three issues—the recurring need to reinvent measurement (as illustrated by the career of the psychologist S.S. Stevens), the linkage between qualitative and quantitative methods of analysis (as articulated in the writings of the sociologist Paul Lazarsfeld), and the assertion (by philosophers Ernst Cassirer and Peter Caws) that theorizing necessarily precedes measuring. We review a number of important advances in the way that measurement is theorized and implemented in the sociology of culture and we also point to a number of enduring dilemmas and conundrums that continue to occupy researchers in the field today.     

NEW TRENDS IN THE DOCTOR-PATIENT RELATIONSHIP: IMPACTS OF MANAGED CARE ON THE GROWTH OF A CONSUMER PROTECTIONS MODEL

Managed care is prompting a large revision not only in the ways doctors are employed and paid but also in the essence of the relationship between doctors and patients. In medical sociology, a discipline with a long-standing focus on scrutinizing the role of both the physician and the patient, there has already been discussion of a shift from the doctor as more all knowing to a less dominant position vis-a-vis both the patient and delivery of care. Patients are aware of shifts that place physicians in an environment characterized by new roles and responsibilities, such as acting as a gatekeeper. Limitations on health care coverage and the rethinking of roles have led to a depiction of the patient as the consumer of care and the managed care plan's becoming the commercial enterprise from which a service is obtained. The model of the patient as consumer of medically related goods and services appears to be growing, as does a model of the physician as one who contracts for a specified range of services for specific patients. In this article, trends in and problems with contemporary managed care are raised. Calls for patients' rights legislation may be among the health trends of the new millennium.     

The use of diaries for understanding the experience of health and illness

While diaries as a method have a long tradition in sociological research, few studies to date have demonstrated its value for studying health and illness. This article intends to illustrate the importance of this method for health research. The implications of the use of solicited diaries to conduct research within the field of health and illness are discussed. The contributions that the method can make to sociological research on health and illness are explored, namely the potential to capture the everyday of ill people and their family members. Indeed, this method offers an opportunity to access the experience of illness in a multidimensional approach which is not easy for researchers to catch using other methods. The article aims to present an overview of the significance of the use of diaries in health research and will make a novel contribution to the sociology of health and illness.     

LATINO HEALTH IN THE NEW MILLENNIUM: THE NEED FOR A CULTURE-CENTERED APPROACH

Studies have consistently shown race and ethnicity to be important determinants of health. The specific nature of this influence, however, is still a mystery. In the new millennium, racial and ethnic differentials in health are bound to become a major focus in medical sociology not only because of their persistence but also because of the demographic changes taking place in the United States. It is estimated that racial and ethnic minorities are expected to increase from the current level of 25 % of all Americans to 40 % by 2030 and that minority groups will make up more than half of the U.S. population by 2050. Thus, overcoming health disparities attributable to race and ethnicity has become more urgent in ensuring good health for the nation. This article suggests that analyses of the health status of Latinos, the second largest minority group in the country, must attend to cultural factors. The need for a culture-specific approach to Latino health is indispensable to such discourses in medical sociology.     

Security,Surveillance, and Sociological Analysis

Security and surveillance are today part of commonplace, everyday experience in ways that they were not until the end of the twentieth century. Appropriately, they have become increasing important topics within sociology, even though each has also generated multidisciplinary interest since the 1990s, sometimes without reference to the other. The background to these initiatives and their overlapping and interacting elements are sketched and traced, setting the stage for the articles selected for the special issue. There is an urgent need for adequate theoretical and empirical work in these growing fields, not least because the issues covered in these articles are of more than academic interest.     

A CLASSIC FROM THE OTHER SIDE OF THE VEIL: Du Bois's Souls of Black Folk

Why has W.E.B. Du Bois not mattered more in sociology? In addition to being on the short list of the 20th century's most influential public intellectuals, Du Bois made substantial, if under recognized, intellectual contributions as a sociologist and social theorist. Among his nearly 2000 published writings, The Philadelphia Negro and Souls of Black Folk have all the qualities of classic works. Yet, neither has been officially canonized by sociology. The exclusion of Du Bois can be explained with tolerable plausibility by reference to his two key concepts in Souls of Black Folk: the veil and the double-self. One can only wonder what might have been significantly different about sociology, especially its theories of the Self and of field studies of race, had William James's most important student been allowed to matter.     

Researchers Behind Policy Development: Comparing ‘Age-Friendly Cities’ Models in Quebec and Wallonia

Based on a reflexive method, this article explores the roles of researchers behind Age-Friendly Cities and Environments. Referring to Michael Burawoy's division of sociological work (professional, critical, policy and public sociology), it is structured around the international comparison of two empirical case studies: Walloon region (Belgium) and Quebec (a province of Canada). While the first case shows some difficulties faced by a limited policy sociology perspective with little room for research, the latter presents a more developed public sociology approach with larger involvement from research. If both cases started with policy links, the latter presents a special interest for praxis, through knowledge transfer as an ongoing public dialogue. Based on this comparison, the article concludes with a twofold use of praxis: on one side – knowledge in action – a public sociology position offers an original perspective on what AFC/AFE may mean and produce to avoid a limited field of actions focusing only on some stakeholders or advocates for older people. On the other side – action in knowledge – policy and public sociology question professional and critical sociology facing AFC/AFE programmes: is a purely academic knowledge of such a programme epistemologically realistic or should it necessarily be empirically fuelled?     

Access to health care: does neighborhood residential instability matter?

Many Americans do not have access to adequate medical care. Previous research on this problem focuses primarily on individual-level determinants of access such as income and insurance coverage. The role of community-level factors in helping or hindering individuals in obtaining needed medical care, however, has not received much attention. We address this gap in the literature by investigating the association between neighborhood residential instability and access to health care. Using individual-level data from the 2000 Medical Expenditure Panel Survey and block-group level data from the 2000 decennial census, we find that individuals who live in neighborhoods with high residential turnover have worse health care access than residents of other neighborhoods. This association persists even when the prevalence of poverty, the supply of health care, and a variety of individual characteristics are held constant. We offer explanations for these findings and suggest directions for future research.