Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home. METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group. RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort. CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

Animal research unbound: The messiness of the moral and the ethnographer's dilemma.

Interspecies intimacy defines an inescapable reality of lab animal research. This essay is an effort to disentangle this reality's consequences-both in and outside the lab-as framed by the quandaries of ethnographic engagement. Encounters with lab staff and, in turn, with audiences unfamiliar with laboratory life, together provide crucial entry points for considering how the "messiness of the moral" might facilitate an "unbounded" approach to lab animal worlds. Within the lab, one encounters specialized ethical principles-often codified as law-that delimit strict boundaries of in/appropriate human thought and action. Such principles determine quotidian practices of welfare and care that, in peculiar ways, privilege animal health (as key to reliable data) while obscuring, erasing, or denying human forms of self care. As such, they presuppose a regulatory ability to formulate, shape, and (re)direct human action. Yet attentiveness to the "messiness of the moral" of lab work exposes other realities: indeed, lab personnel regularly engage in a host of subversive responses that test or cross the boundaries of mandated behavior that (re)invigorate the meaning of moral acts of care as interspecies responsibility. The ethnographer's ability to witness, record, and write about these actions within the lab rests comfortably on the relativist principle of suspended judgment. Once one moves outside the lab, however, I ask, wherein lies ethnographic responsibility, when one's accounts of the moral messiness of quotidian lab practices become unbounded and go public? I argue that a dialectical inter- and intraspecies framework-inspired by the existential anthropologist Michael Jackson-offers the ethnographer (and still other scholars) possibilities for forging a productively "unbounded" methodological analytic in and beyond domains of animal science.

Research ethics and Indigenous Peoples: Repercussions of returning Yanomami blood samples.

This work presents the case of the Yanomami indigenous people from Brazil that were the object of US ethnography initiated in the 1960s. The research brought harmful repercussions to the life of the Indigenous people of Brazil for several decades, and it took more than 40 years until the beginning of a process of reparation involving the Brazilian government and American universities. Objective: to discuss the meaning of the return of Yanomami blood samples, as well as contributions from the epistemologies of traditional Indigenous knowledge to the debate about research ethics and the structuring of means for the social control of researchers and the protection of participants in scientific studies, having as an example the Yanomami indigenous people from Brazil, subjected to noxious ethnography in the 1960s and the 1970s. This work used data reports recorded in secondary sources. In this article we argue that Bioethics needs to further diversify its epistemological foundations and to consider epistemologies and cosmologies beyond the frontiers of Western science, as the case of the abusive research involving the Yanomami indigenous people in Brazil reveals. We argue that traditional knowledge, such as those of indigenous and quilombolas, with their epistemologies and cosmologies, are fundamental for the election of less colonized and more efficient principles of research ethics, regarding the protection of the participants' rights in scientific studies. Traditional indigenous populations can teach us a great deal about doing research.

Vital and enchanted: Jane Bennett and new materialism for nursing philosophy and practice.

Nursing theories are typically anthropocentric and emphasize caring for a person as a unitary whole. They maintain the dualisms of human-nonhuman, natural-social and material-ideal. Recent developments in nonhuman ontology question the utility of that approach. One important philosopher in this new materialism is political theorist Jane Bennett. In this paper, I explore Bennett's vital materialism and enchantment as two concepts arising from the nonhuman turn that should inform nursing philosophy. Vital materialism considers the lively power of matter to affect the world and be affected in relations. Enchantment refers to a sense of wonder and captivation with matter. While summarizing her important contributions, I also describe common criticisms and responses. I consider the human as an assemblage of matter as well as the agency or "thing power" of matter external to humans. This has implications for nursing thought and practice, and it can inform a more capacious research methodology. I also discuss how compassion fatigue or burnout and other professional issues may be seen as a form of disenchantment with the material world. I argue that embracing these and other elements of Bennett's new materialist philosophy can help nurses and other health professionals enrich their theories and practice to advance their disciplines and improve care for persons and populations.

Global Bioethics: A Story of Dreams and Doubts from Bengal.

This article is concerned with the practice of bioethics outside of the Euro-American and Anglophone settings in which it was first formulated. In theoretical terms, the article considers the frictions that arise when global-scale projects such as bioethics are introduced into diverse social and cultural settings. Methodologically, the article is constructed around the biography of an Indian medical educator trained in bioethics and working to promote the subdiscipline in the Indian context. The article describes the situated practice of bioethics and highlights the incommensurability of some of its key terms and concepts when practiced outside of the global North.

Toward an Ethical Reflective Practice of a Theory in the Flesh: Embodied Subjectivities in a Youth Participatory Action Research Mural Project.

The focus of this paper is to demonstrate how embodied subjectivities shape research experiences. Through an autoethnography of my involvement in a Youth Participatory Action Research (YPAR) after-school program with low-income and working-class youth of Color from predominantly Latinx communities I examined my embodied subjectivities, via an ethical reflective practice, as these surfaced in the research context. Autoethnography is presented as a tool to facilitate an ethical reflective practice that aligns with heart-centered work. Drawing from an epistemology of a theory in the flesh (Anzaldúa & Moraga, 1981), embodied subjectivities are defined by the lived experiences felt and expressed through the body, identities, and positionalities of the researcher. The article concludes with implications for the development of community psychology competencies that attend to the researcher's embodied subjectivities.

Introduction to "Moral (and Other) Laboratories".

"Moral (and other) laboratories" is a special issue that draws on Cheryl Mattingly's notion of the "moral laboratory" to explore the uncanny interface between laboratory ethnography and moral anthropology, and to examine the relationship between experience and experiment. We ask whether laboratory work may provoke new insights about experimental practices in other social spaces such as homes, clinics, and neighborhoods, and conversely, whether the study of morality may provoke new insights about laboratory practices as they unfold in the day-to-day interactions between test tubes, animals, apparatuses, scientists, and technicians. The papers in this collection examine issues unique to authors' individual projects, but as a whole, they share a common theme: moral experimentation-the work of finding different ways of relating-occurs in relation to the suffering of something or someone, or in response to some kind of moral predicament that tests cultural and historically shaped "human values." The collection as a whole intends to push for the theoretical status of not merely experience itself, but also of possibility, in exploring uncertain border zones of various kinds-between the human and the animal, between codified ethical rules and ordinary ethics, and between "real" and metaphorical laboratories.

How the observed create ethical dilemmas for the observers: experiences from studies conducted in clinical settings in the UK and Australia.

Observational research has a history of controversy, particularly when the research is conducted in a clinical setting. Existing ethical approval processes focus on protecting participants and the researcher's responsibilities, in particular where vulnerable populations are concerned. In this study, the authors explored the less overt and often understated ethical challenges that can arise when conducting observational research in a clinical setting. Reflecting on two recent studies conducted in different clinical settings, the authors described the challenges of blurring role boundaries, the risk of collecting redundant data, and the impact of reverse power relationships between researchers, clinicians, and managers. From their experiences, the authors suggested that the preparatory work undertaken with clinicians and managers onsite, which typically focuses on how the researchers will maintain the ethical robustness of the research and protect the rights of participants and the vulnerable, should also highlight the sometimes overlooked ethical issues associated with participatory research. This can help ensure that participants and managers understand the scope and limitations of the research, and consider the ways in which the observed can influence the researcher and the findings.

Parental involvement in neonatal pain management: reflecting on the researcher-practitioner role.

AIM: The objective of this paper is to identify and explore some of the ethical and professional issues facing the clinical researcher-practitioner and to discuss how these were addressed in one particular study. BACKGROUND: The author's experience of undertaking ethnographic research in the organisation in which she works as a nurse consultant highlighted a number of ethical and professional dilemmas. This paper discusses how some of these issues, particularly relating to informed consent, confidentiality, practice concerns and exploitation were addressed. DATA SOURCES: Doctoral research (DMedSCi) with Sheffield University. DISCUSSION: This paper discusses the ethical and professional dilemmas and some of the advantages associated with the researcher-practitioner role. CONCLUSION: This paper identifies and discusses the need to: Remember who the research is about and whom it should benefit. Include a wide research team. Acknowledge the researcher's responsibility towards the participants. Identify and act on problems as they arise. IMPLICATION FOR RESEARCH/PRACTICE: The need to keep the participant as the focus of the research, to involve a wide research team and to reflect constantly on the process.

Learning the moral economy of commodified health care: "community education," failed consumers, and the shaping of ethical clinician-citizens.

Leaders of health professional schools often support community-based education as a means of promoting emerging practitioners' awareness of health disparities and commitment to serving the poor. Yet, most programs do not teach about the causes of health disparities, raising questions regarding what social and political lessons students learn from these experiences. This article examines the ways in which community-based clinical education programs help shape the subjectivities of new dentists as ethical clinician-citizens within the US commodified health care system. Drawing on ethnographic research during volunteer and required community-based programs and interviews with participants, I demonstrate three implicit logics that students learned: (1) dialectical ideologies of volunteer entitlement and recipient debt; (2) forms of justification for the often inferior care provided to "failed" consumers (patients with Medicaid or uninsured); and (3) specific forms of obligations characterizing the ethical clinician-citizen. I explore the ways these messages reflected the structured relations of both student encounters and the overarching health care system, and examine the strategies faculty supervisors undertook to challenge these messages and relations. Finally, I argue that promoting commitments to social justice in health care should not rely on cultivating altruism, but should instead be pursued through educating new practitioners about the lives of poor people, the causal relationships between poverty and poor health, and attention to the structure of health care and provider-patient interactions. This approach involves shining a critical light on America's commodified health care system as an arena based in relations of power and inequality.

The ethical self-fashioning of physicians and health care systems in culturally appropriate health care.

Diverse advocacy groups have pushed for the recognition of cultural differences in health care as a means to redress inequalities in the U.S., elaborating a form of biocitizenship that draws on evidence of racial and ethnic health disparities to make claims on both the state and health care providers. These efforts led to federal regulations developed by the U.S. Office of Minority Health requiring health care organizations to provide Culturally and Linguistically Appropriate Services. Based on ethnographic research at workshops and conferences, in-depth interviews with cultural competence trainers, and an analysis of postings to a moderated listserv with 2,000 members, we explore cultural competence trainings as a new type of social technology in which health care providers and institutions are urged to engage in ethical self-fashioning to eliminate prejudice and embody the values of cultural relativism. Health care providers are called on to re-orient their practice (such as habits of gaze, touch, and decision-making) and to act on their own subjectivities to develop an orientation toward Others that is "culturally competent." We explore the diverse methods that cultural competence trainings use to foster a health care provider's ability to be self-reflexive, including face-to-face workshops and classes and self-guided on-line modules. We argue that the hybrid formation of culturally appropriate health care is becoming detached from its social justice origins as it becomes rationalized by and more firmly embedded in the operations of the health care marketplace.

A broader discussion of authorship.

While it may be useful to consider the development of new topics in teaching the responsible conduct of research (RCR), it is perhaps equally important to reconsider the traditionally taught core topic areas in both more nuanced and broader ways. This paper takes the topic of authorship as an example. Through the description of two specific cases from sociocultural anthropology, ideas about credit and responsibility are examined. It is suggested that placing more focus on the array of meanings found in the act of authoring might help students see themselves as part of a wider community both of scientists and beyond science.

A critique of current practice: ten foundational guidelines for autoethnographers.

Any research is potentially compromised when researchers address ethical issues retrospectively rather than by anticipating these issues. In this regard, creative analytical practices (CAP) autoethnography has endemic problems. In Part 1 of this article, I detail a case study of an autoethnography in which journal reviewers insisted that an author gain retrospective informed consent from the 23 persons documented in an autoethnography. Yet the journal reviewers' insistence failed to go one step further-acknowledging that a conflict of interest develops when gaining consent retrospectively. In Part 2, I contrast three leading autoethnographers' justifications for not gaining informed consent with the Position Statement on Qualitative Research developed by successive Congresses of Qualitative Inquiry. In Part 3, I identify resources available for autoethnographers, including ethical issues present when researchers use autoethnography to heal themselves, violating the internal confidentiality of relational others. In Part 4, I question if autoethnography is research and, like journalism, exempt from formal ethics review. Throughout the article, 10 foundational ethical considerations for autoethnographers are developed, taking autoethnographers beyond procedural ethics and providing tools for their ethics in practice.

"You know what I mean:" the ethical and methodological dilemmas and challenges for black researchers interviewing black families.

In this article I provide a reflexive account of my research experiences with families of African descent. I examine the ways in which, as a researcher of African descent, I became part of the research process. Using data from an ethnographic study that explored the healthy lifestyle experiences and attitudes of families and adolescents of African descent in the northwest of England, I present a detailed discussion of the identity alteration, researcher-researched relationships, and insider-outsider tensions and dilemmas that arose while I collected data. I argue that researchers working with participants with whom they share similar ethnicity and historical experiences are likely to find that their professional self and personal life experiences overlap, and there can be difficulties in keeping them separate.

The ethics of data collection: unintended consequences?

PURPOSE: The aims is to consider the political and ethical challenges involved in conducting ethnographic managerial/organisational behaviour research within the highly regulated health and social care context, in light of the emergence of more stringent "ethical approval" policies and requirements set by Local Research Ethics Committees in the United Kingdom. In the attempt and requirement to protect "vulnerable" employees, this paper aims to present an unintended paradox of consequences when participants voluntarily revealed themselves. DESIGN/METHODOLOGY/APPROACH: The authors briefly review literature on research ethics and present an understanding of the ethical regulations currently existing within the British National Health Service. Within an ethnographic case study exploring the psychological contract, the authors consider the issues that arose during one stage of data collection: a qualitative questionnaire survey with 13 participants, including members of the lead author's team. Incorporating excerpts from the researcher's reflexive journal, the paper exposes the struggles of being an "insider" researcher and the tensions this raises for data analysis when participants voluntarily revealed themselves. FINDINGS: Ethnography is at "risk" within health and social care and ethnographic "managerial" research is likely to be unduly restricted and potentially threatened. The evidence suggests that some employees either did not wish to be protected or, conversely, felt compelled to reveal their identities, raising questions of their motivation and creating a paradox of unintended consequences. ORIGINALITY/VALUE: This paper offers an insight into the challenges of conducting nurse-managerial ethnography in compliance with ethical guidelines, yet disrupted by participants. The findings will be useful to other nurse-researchers attempting to conduct insider research.

Looking, But Not Listening? Theorizing the Practice and Ethics of Online Ethnography.

There are debates across disciplines regarding how to research and represent digital cultures ethically. Against this background, there is a need to reflect on the practice and ethics of online ethnography. Ambiguities surrounding researcher "participation" online have led this to be equated largely with observation. This has deprivileged the act of listening in both research practice and the methodological and ethical debates that underpin this. Utilizing ethnographic research into self-harm and social media as a critical lens, this article advocates for listening as a mode of participating in, as well as observing, online spaces. In proposing "active listening" and "adaptive listening" to explore the polyphonic and heterogeneous nature of social media, we argue that listening is key to representing online spaces in all their cultural diversity and emotional complexity. Reflecting on listening is necessary to forging a practical ethics of online ethnography, and is relevant to digital research more widely.

[Treatment of chronic psychiatric disorders. Ethical and anthropological aspects]. / Behandlung chronisch psychisch kranker Menschen. Ethische und anthropologische Aspekte.

This paper outlines an approach to assessing chronicity in psychiatric disorders, which represents a challenge for clinical practice. We began by accepting conclusions from well accepted anthropological and clinical studies of patients with chronic psychiatric disorders. Based on such key conclusions, we formulated several assumptions centred round anthropological concepts as a comprehension tool. Such an anthropological framework might improve orientation in the clinical evaluation of chronic psychiatric disorders. Ethical implications resulting from the above approach are discussed, specifically those revolving around the concept of "problematic people". Based on these considerations, ten practical concepts concerning the recovery from chronic psychiatric illness are discussed.

Queer in the field: on emotions, temporality, and performativity in ethnography.

This article is a reflection on a year of ethnographic fieldwork conducted in and around a lesbian and gay community center in London. The research was concerned with the ways in which working class lesbian and bisexual women experience the meanings of their sexual identities on an everyday basis. I conducted participant observation in a variety of settings. Activities I took part in included volunteering at the center and running sexualities discussion groups, and photographic workshops with lesbian and bisexual women. In this article I explore the epistemological, ontological, and ethical dimensions of ethnographic research. I argue here that queer ethnography is not merely ethnography that has focus on researching queer lives, it is also a matter of taking queer theory seriously in order to question the conventions of ethnographic research, specifically the stability and coherence of the ethnographic self and performativity of the ethnographic self in writing and doing research. To queer ethnography then, is to bend the established orientation of ethnography in its method, ethics, and reflexive philosophical principles.

WASP (Write a Scientific Paper): Ethnography with children: Some considerations.

This paper introduces the key methodological challenges related to working with children within an ethnographic research design. After briefly identifying in-depth contextually rich data as the key aim of any ethnographic research, some of the particular challenges related to working with children are explored. These are described along two key axes: ethical issues related to power dynamics loaded in favour of the adult researcher, and practical, logistical barriers to generating data that are a true reflection of the young child's ideas and beliefs. 'Process assent' and 'ethical symmetry' are flagged as the key means of optimising ethicality, while the benefits of using the 'least adult role', and creative child centric activities are outlined as ways to generating and collecting trustworthy data.