Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others' research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars.     

Health technology assessment between our health care system and our health

In this contribution, I wish to explore the potential of health technology assessment and ethics for increasing our capacity to pre-empt the shortcomings and undesired consequences of modern health care while maintaining its benefits. Central is the presumption that in case of some health problems this cannot be done unless we explicitly reconsider some features of the modern health care system, especially those related to its strong reliance on scientific rationality and the strong role played by medical professionals. So as to both maintain the benefits of advanced health care and ensure that it produces less reason for concern, we need to reconsider our approach to rationality—and maybe even the way in which we build our health care system around that rationality. That is, we need to introduce an element of reflexivity. Two types of circumstances are being explored in which such reflexivity may prove worthwhile: controversies on side effects, and persistent problems encountered in optimising health care. Drawing on brief discussions of typical cases, we explore the potential of reflexive HTA and its methodical prerequisites. We conclude that ethicists may contribute to reflexive HTA, if they combine a hermeneutic—and often also participative—methodology with a solid understanding of the relation between the health problem under scrutiny and more general critique of the health care system. Insights from the areas of science and technology studies, as well as from social philosophy may be critical items in their tool kit.     

Creating caring institutions for community informatics

This paper explores the potential affordances of applying a feminist ethics of care approach to community informatics practices in public internet access facilities. As feminist technology scholars have long observed, technology and technoculture are strongly encoded as masculine, privileging traits such as scientific knowledge, rationality, objectivity, and distance. These characteristics are expressed in traditional infomediary practices in a variety of ways, including notions of expertise, ways of conceptualizing technology, emphasis on skills attainment, and deficit-based models of user behavior. In contrast, ethics of care emphasizes the importance of relational and situated knowledge, pluralistic voices and experiences, and relationships bound by mutual interdependence. Traditionally, caring has been feminized and thus necessarily excluded from technoculture and relegated to invisible and unpaid labor. Caring and associated affective labor practices remain an under-examined subject in infomediary practices. Public libraries and community technology centers are logical places to explore for care work, given that they share many characteristics of the spaces where care work has historically been performed. We argue that an ethics of care framework has several possible affordances for infomediary practices in these institutions, including highlighting the gendered power dynamics that define and shape existing practices; distributing care work and making existing care work visible; and envisioning a more holistic and ethical approach to engaging diverse publics. We translate Tronto’s seven warning signs for ‘bad care’ in institutions into seven positive guidelines for providing ‘good care’ in public internet access facilities, then contextualize these for community informatics institutions and practices.     

Youth tobacco sales-to-minors and possession-use-purchase laws: a public health controversy

Tobacco use among youth remains one of our nation's most significant public health problems, and yet available evidence from prevention and cessation person-centered approaches has been mixed. Given these disappointing outcomes, some have recommended more public health approaches, and these include tobacco sales-to-minors and possession-use-purchase laws. While community members and police officials have endorsed these types of public health initiatives, many within the public health community have been either guarded or even oppositional to such approaches. The primary reasons for this controversy are reviewed in this article. Outcome studies indicate that sales-to-minors laws can be an effective step toward the reduction of youth access to commercial sources of tobacco. However, even with these laws in place, many youth indicate that they continue to have easy access to tobacco, often by means of social sources. Advocates of these approaches have argued that more comprehensive public health interventions are needed, such as programs that combine youth access and possession-use-purchase laws. This article reviews the ongoing debate behind these types of public health efforts, and examines the evidence of such programs to reduce youth tobacco use.     

Virus interruptus: An Arendtian exploration of political world‐building in pandemic times

Building upon a series of blog posts and conversations, two feminist scholars explore how political community, trust, responsibility and solidarity are affected by the COVID‐19 pandemic. We explore the ways in which we can engage in political world‐building during pandemic times through the work of Hannah Arendt. Following Arendt’s notion of the world as the space for human togetherness, we ask: how can we respond to COVID‐19’s interruptions to the familiarity of daily life and our relationship to public space? By extending relational accounts of public health and organizational ethics, we critique a narrow view of solidarity that focuses on individual compliance with public health directives. Instead, we argue that solidarity involves addressing structural inequities, both within public health and our wider community. Finally, we suggest possibilities for political world‐building by considering how new forms of human togetherness might emerge as we forge a collective ‘new normal’.     

The healing power of dogs: Cocoa's story

Animals bring a sense of "at homeness" and even normalcy to people who are hospitalized or live in health care facilities. Illnesses, separation from family, fear, loneliness, and even depression may be lessened for those who receive a therapy dog visit by providing a welcome change in routine and something to look forward to. Individuals are often more active and responsive during and after a visit. Just stroking and petting a dog requires the use of hands and arms, as well as the motions of stretching and turning. Dogs are also unconcerned with age or physical ability; they accept people as they are. This alone causes many to reach out and interact with dogs. Animals provide a focus for conversation and a common interest. As Cocoa's human partner can attest, a pet also makes it easier for strangers to talk. Cocoa is known by so many people at the facilities she visits that residents' family members often stop to talk with "Cocoa's mom" when they meet her in the community, asking questions about how Cocoa is doing. When Cocoa is no longer able to perform her services, many in her community will mourn. Cocoa's story, as well as the limited research literature, supports the positive physical and psychological effects of animals, but continued research on the effect of therapy animals on health outcomes is needed. As advocates for clients, nurses are in key positions to facilitate the inclusion of animals in clients' care. Although not for everyone, including those who react negatively to animals or who are allergic, pet therapy offers important possibilities for providing holistic care that extends not only to clients, but also to family members and staff, and to the pets themselves.     

Defined contribution health benefits

This Issue Brief discusses the emerging issue of "defined contribution" (DC) health benefits. The term "defined contribution" is used to describe a wide variety of approaches to the provision of health benefits, all of which have in common a shift in the responsibility for payment and selection of health care services from employers to employees. DC health benefits often are mentioned in the context of enabling employers to control their outlay for health benefits by avoiding increases in health care costs. DC health benefits may also shift responsibility for choosing a health plan and the associated risks of choosing a plan from employers to employees. There are three primary reasons why some employers currently are considering some sort of DC approach. First, they are once again looking for ways to keep their health care cost increases in line with overall inflation. Second, some employers are concerned that the public "backlash" against managed care will result in new legislation, regulations, and litigation that will further increase their health care costs if they do not distance themselves from health care decisions. Third, employers have modified not only most employee benefit plans, but labor market practices in general, by giving workers more choice, control, and flexibility. DC-type health benefits have existed as cafeteria plans since the 1980s. A cafeteria plan gives each employee the opportunity to determine the allocation of his or her total compensation (within employer-defined limits) among various employee benefits (primarily retirement or health). Most types of DC health benefits currently being discussed could be provided within the existing employment-based health insurance system, with or without the use of cafeteria plans. They could also allow employees to purchase health insurance directly from insurers, or they could drive new technologies and new forms of risk pooling through which health care services are provided and financed. DC health benefits differ from DC retirement plans. Under a DC health plan, employees may face different premiums based on their personal health risk and perhaps other factors such as age and geographic location. Their ability to afford health insurance may depend on how premiums are regulated by the state and how much money their employer provides. In contrast, under a DC retirement plan, employers' contributions are based on the same percentage of income for all employees, but employees are not subject to paying different prices for the same investment.     

Care and community revalued during the COVID‐19 pandemic: A feminist couple perspective

The COVID‐19 pandemic led us to understand and revalue care ethics within our daily lives and communities based on the feminist theory of care ethics. This article is a personal reflection of an academic couple living in Japan as we reflect on our experiences and the challenges encountered in caring for ourselves and our community. We discuss the ideas of care theory mainly: caring‐about and caring‐for, interchangeably in our discussion across the three‐stage categories: Home — A Commonplace; Care Ethics in Community; and Care Ethics for Self. Through these personal narratives, we strive to recognize the struggles of living through the pandemic in a virtually connected world that often disconnects us from self. We foster the idea of embracing care ethics as a starting point at an individual level.     

Healthcare Use in the Heartland: How Health Care Selection Varies Between Rural,Retirement‐Age Migrants and Long‐Term Residents

One increasingly important problem affecting rural health care selection is the tendency of older residents to bypass local health care providers. This research investigates how the effects of community characteristics and attachment on health care bypass behavior vary between rural retirement‐age migrants and retirement‐age long‐term residents. Non‐health‐related behaviors, such as purchasing goods and services outside one's community during a health care trip, that is, “outshopping,” could influence bypass if individuals combine trips for their medical care with other consumer needs. Basing our work on the outshopping theory, we argue that bypass behavior is one facet of consumer consumption patterns for both rural retirement‐age migrants and long‐term residents. In addition, dissatisfaction with local health care and services like shopping can “push” rural residents to bypass local health care and travel greater distances for primary health care. We further contend that strong community attachment has an opposite “pull” effect that can help to negate the push of outshopping and reduce the likelihood of bypass. Our results reveal retirement‐age migrants are significantly more likely to bypass local primary health care providers than retirement‐age long‐term residents. Furthermore, our analysis bridges the rural health care and retirement community development literature to suggest that outshopping theory can now be applied to rural primary health care bypass behavior.     

Socioeconomic, medical care, and public health contexts affecting infant mortality: a study of community-level differentials in Peru

Socioeconomic, medical care, and public health contexts are examined in Peruvian communities for their relationship to infant mortality. A deviant case analysis is used to uncover characteristics important in the social structure of Peruvian communities. Results from fieldwork in two "deviant" communities suggest that economic diversity, income disparity, social class fluidity, and women's autonomy, along with refined measures of medical care and public health resources, are important in understanding differentials in mortality. Attention is drawn to the community context and to the interplay of socioeconomic determinants affecting infant mortality.     

Health care for older persons in Singapore: integrating state and community provisions with individual support

Health care policy in Singapore is similar to that in the United States and the United Kingdom, where a residualist strategy is used to pass health care costs to individuals and their families, the rationale being that this enables the state to concentrate on devolution of care to the community and ensure efficient and affordable service to all Singaporeans. The services include public restructured hospitals and outpatient poly-clinics as well as community services such as community hospitals and hospitals for the chronically ill, nursing homes, day care centers, and home help services. Availability does not translate into optimum usage because current and potential users and their families are not able to match their financial and social resources with the services. Instead, the state acts as the case manager and places parameters on what individuals can access.     

An organization-environment framework for assessing program implementation

Evaluations of health programs are typically conducted from a rational bureaucratic framework in which client change and client outcome are seen as logical outcomes of program activity. This paper proposes a theoretical framework for examining organizational consequences of program implementation. Factors in the internal environment (e.g., the hospital) and the external environment (e.g., the community) which contribute to the program's success or failure, are considered. Observational and structured interview data are used to compare two state funded perinatal projects, one an organizational "success" and the other a costly failure. Attributes of external environments which may be important to successful implementation include demand for services, provider competition, access to information, social beliefs, and professional commitment. Important features of the internal environment include host organization commitment and conflict, and structural attributes: complexity, formalization, centralization, and coordination. The paper concludes with theoretically-based questions which serve as guidelines for process evaluation.     

Addressing intimate partner violence in primary care: lessons from chronic illness management

Though many studies have documented the high prevalence, morbidity, mortality and costs attributable to intimate partner violence (IPV), it is still unclear how our health care system should address this major public health problem. Many have advocated for routine screening, yet there is still insufficient evidence that routine IPV screening can lead to improved outcomes. Though recognition of IPV is very important, a screening paradigm may not be the optimal way to approach IPV within the health care system. For many patients, exposure to violence is a chronic condition, characterized by long-term abusive relationships, histories of childhood and community violence, multiple associated chronic symptoms, and extra barriers to addressing their other chronic illnesses. Thus, there may be important lessons to be learned from work being done in the area of chronic care. We explore how Wagner's Chronic Care model may guide efforts to improve health care for IPV survivors and may serve as a framework for future research studies.     

Research with Disabled Children: How Useful is Child-centred Ethics?

The title of a collection on 'ethics and methodology of research with children' implies that research with children necessarily raises unique questions about ethics and methods. Our paper questions whether this is so, what the unique questions might be and how they arise. We consider that any extra complications in research with children are common to research with other 'minority' groups. The main complications do not arise from children's inabilities or misperceptions, but from the positions ascribed to children in late twentieth-century Western societies. Clarity about the social origins of any complications in research with children is crucial if these complications are to be addressed. Ethics, methods, theories, data and policy conclusions are inextricably interwoven, and it is important to acknowledge how initial theories inevitably shape policies. Reasons are given for preferring rights-based to child-centred ethics.     

The process and results of an evaluation of a nurse-managed, family-oriented health care center

This paper discusses an example of action research, the evaluation of a nurse-managed, family-oriented health care center serving a low-income, black population in an isolated section of a highly industrialized suburban community. The evaluation was the result of many necessary compromises, yet other than lack of cost effectiveness, it brought substantial evidence of the success of the agency. Patients had positive health attitudes, were knowledgeable, and practiced health-inducing behaviors. As compared to other community health centers, the quality of care was found to range from average to excellent. Notable gains in quality of care occurred from pre- to posttest, partially as a result of formative evaluation procedures. Despite the positive nature of the product evaluation, the Center was closed, raising questions as to the utility of evaluation in the decision-making process.     

Health Care for Older Persons in Singapore

Abstract

Health care policy in Singapore is similar to that in the United States and the United Kingdom, where a residualist strategy is used to pass health care costs to individuals and their families, the rationale being that this enables the state to concentrate on devolution of care to the community and ensure efficient and affordable service to all Singaporeans. The services include public restructured hospitals and outpatient poly-clinics as well as community services such as community hospitals and hospitals for the chronically ill, nursing homes, day care centers, and home help services. Availability does not translate into optimum usage because current and potential users and their families are not able to match their financial and social resources with the services. Instead, the state acts as the case manager and places parameters on what individuals can access.     

Relational ethics in forensic psychiatric settings

1. The pressure of the competing demands of custody and caring shapes the moral climate of forensic settings. 2. A relational approach to health care ethics, requiring the opening of dialogue, consideration of multiple perspectives, and attention to context, can guide nurses as they strive to engage and respect even their most estranged patients. 3. The core elements of relational ethics include mutual respect, engagement, and attention to the environment.     

A Human Nature Approach to Image and Ethics in International Public Relations

This article addresses the role of the concept of image in the ethics of international public relations. It argues that the right to construct mental images is fundamental to the human experience and that ethical international public relations can enhance this right. The article identifies two diametrically opposed approaches to image in public relations. The first view uses instrumental or "i images" in an attempt to manage publics by managing the organization's communication with them. This instrumental approach is essentially one-way and monological, which is inviting for many practitioners and clients. I images are usually unethical, however, because they reduce the public's chance to use symbols and images rationally and to make informed choices. The second approach uses "h images" for the humanitarian view of images. With this approach, practitioners and their clients use two-way dialogical communication and accept the ethical responsibility to enhance, not degrade, the humanity of all parties involved in public relationships. Dialogical communicators assume that their publics have as varied and valid interpretations of the world as do their clients. They assume that the goal of public relations is not reducing publics to the service of clients but joining with publics in the process of interpreting the world together. The h image approach is especially important in international public relations, which can be understood as the attempt of one culturally bound community to deal with the interpretations of another. Based on the humanitarian approach, the article proposes five tests that international public relations practice should pass to be ethical.     

Clinical Social Work Practice with Former System Youth with Mental Health Needs: Perspective of Those in Need

The purpose of this study is to describe the types of programs and mental health services former system youth with mental health histories would be inclined to engage in to manage their mental health difficulties, along with the factors that might hinder them from engaging in these services. A series of closed and open-ended questions on potential programs and services were asked, as part of a larger study. Participants were former system youth; specifically 18?C30?year olds who were diagnosed with a mood disorder and were involved with public mental health and social services (e.g., public welfare, child welfare, juvenile justice) during childhood. Responses to the open-ended questions were categorized and percentages are reported from the yes/no items. Eighty-three percent and 76% reported that they would be enticed to come to a support group and panel discussion on mood disorders, respectively, while only 46% reported that they would attend a family support group. Talking with others who have had similar experiences, material possessions and creative expression were the most common responses regarding what would entice them to get involved. Further, peer disrespect, transportation, and daycare were common barriers to potential participation. As the field continues to build knowledge on system-wide strategies to improve agency-based mental health care for transitioning youth and young adults, new evidence-based approaches may benefit from listening to the specific needs, preferences, and suggestions of these youth themselves.