Researching lived experience in health care: Significance for care ethics (original) (raw)
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EASA Network of Ethnographic Theory, 2019
This short bibliography engages the anthropology of care from the perspective of ethics, offering routes into considering the wide ranging and challenging questions that ethnographic work on caring relationships raise.
An Exploration of How Ethics Informs Health Care Practice
2019
Background Moral complexities exist in every day health care practice creating conflicting responsibilities in providing care. Health care ethics (HCE) enable an applied practical linkage of theory and practice to create professional behaviour that focuses on service user benefit. Research Question/Aim This study explored how health care practitioners located in the UK embodied health care ethics in their practice. The study focussed on participants from the professions of physiotherapy and podiatry currently practising in the UK. Research Design Interpretative Phenomenological Analysis as a hermeneutical approach was utilised. Whilst always involving interpretation, this method has the ability to describe the human experience as it is lived. Participants and research context Purposively sampled individual interviews were carried out (n=21) in an attempt to interpret the participants' lifeworld of embodied HCE. The preliminary findings were taken to a purposively sampled group interview for discussion which contributed to further interpretation. Findings Five themes emerged from the data indicating a desire by participants to extol ethical practice, but acknowledged various limitations in the reality of achieving this. Discussion/Conclusion Ethical decision making may be enhanced by character virtues including empathy. Empathy is a basic condition and source of morality. As a central component of phronesis, empathy may enable understanding of a service user's needs and increase motivation for Health Care Practitioners to act accordingly.
Demarcation of the ethics of care as a discipline: Discussion article
2013
This article aims to initiate a discussion on the demarcation of the ethics of care. This discussion is necessary because the ethics of care evolves by making use of insights from varying disciplines. As this involves the risk of contamination of the care ethical discipline, the challenge for care ethical scholars is to ensure to retain a distinct care ethical perspective. This may be supported by an open and critical debate on the criteria and boundaries of the ethics of care. As a contribution, this article proposes a tentative outline of the care ethical discipline. What is characteristic of this outline is the emphasis on relational programming, situation-specific and context-bound judgments, a political-ethical perspective, and empirical groundedness. It is argued that the ethics of care is best developed further by means of an intradisciplinary approach. Two intradisciplinary examples show how within the frame of one discipline, other disciplines are absorbed, both with their body of knowledge and their research methodology.
Health Care Ethics In Vulnerable Populations: Clinical Research Through The Patient'S Eyes
2012
Chronic conditions carry with them strong emotions and often lead to charged relationships between patients and their health providers and, by extension, patients and health researchers. Persons are both autonomous and relational and a purely cognitive model of autonomy neglects the social and relational basis of chronic illness. Ensuring genuine informed consent in research requires a thorough understanding of how participants perceive a study and their reasons for participation. Surveys may not capture the complexities of reasoning that underlies study participation. Contradictory reasons for participation, for instance an initial claim of altruism as rationale and a subsequent claim of personal benefit (therapeutic misconception), affect the quality of informed consent. Individuals apply principles through the filter of personal values and lived experience. Authentic autonomy, and hence authentic consent to research, occurs within the context of patients- unique life narratives a...
“I go into crisis when …”: ethics of care and moral dilemmas in palliative care
BMC Palliative Care
Background: Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical framework and as a regulatory criterion in the relationship among healthcare professionals, patients with palliative care needs and family members. This study is a part of a larger project aimed at developing and implementing a training programme on "ethical communication" addressed to professionals caring for patients with palliative care needs. The aim of this study was comprehending whether and how the ethics of care informs the way healthcare professionals make sense of and handle ethical issues in palliative care. Methods: Qualitative study employing a theoretically driven thematic analysis performed on semi-structured interviews. The research was conducted in a clinical cancer centre in northern Italy. Eligible participants were physicians and nurses from eleven hospital wards who assisted patients with chronic advanced disease daily and had previously attended a 4-h training on palliative care held by the hospital Palliative Care Unit. Results: The researchers identified five themes: morality is providing global care; morality is knowing how to have a relationship with patients; morality is recognizing moral principles; moral dimension and communication; and moral dilemmas are individual conflicts. Conclusions: Ethics of care seems to emerge as a theoretical framework that includes the belief systems of healthcare professionals, especially those assisting patients with palliative care needs; moreover, it allows the values of both the patients and professionals to come to light through the relationship of care. Ethics of care is also appropriate as a framework for ethical training.
Ethics of Care: Theoretical and Practical Perspectives
Advancing Global Bioethics, 2024
This book offers a set of reflections on the ethics of care in full articulation with some of the most pressing issues of our time. Several themes are analyzed, such as medical care, self-care, justice, economics, politics, and technology. All of them, however, are permeated and united by a common philosophical purpose, namely: an ethics of care not only allows the conception of behavioral relationships and human values but also puts into play the theoretical foundations of ethics itself. It is in this sense that the ethics of care proposed in this volume can be considered metaethics. Since they present multidisciplinary contents and concepts, the chapters of this volume are relevant theoretical tools for researchers, professors, and students, as well as specialized caregivers, who want to deepen the new theoretical and practical implications of care in contemporary society.
The Ethics of Care and the Care of Adults
2006
This paper employs the ethics of care debate to present primary qualitative research on the lived experience of care-giving and care-receiving that was conducted under the auspices of The Equality and Social Inclusion in Ireland Project.
Ethics of care is a normative theory of ethics based on particular relationships between people, rather than universal principles. It is put forward as a rival theory to those based on universal principles, including utilitarianism and Kantianism. Ethics of care proponents argue that we have duties of care toward others, and that these duties of care are more crucial when the people for whom we care are closer to us (especially family members), or when we have taken responsibility for them (e.g. patients or children in daycare). Caring relations are recognised, including caring-for and cared-for relations between moral agents. The theory as a whole allows for partiality in our actions in cases when they involve people for whom we care. Ethics of care proponents criticise normative ethical theories - and the field of ethics in general - on how much they may overlook our duties of care and inclinations to care. All proponents of ethics of care share these foundational claims. Claims about justice, justification for actions and feminist ethics differ among the theory’s proponents. This arguably makes two versions of the theory distinguishable: the Gilligan/Noddings version and the Slote/Held version. This thesis outlines the ways that ethics of care can be useful in practice and the ways that it should be further developed.
2024
Background Medical assistance in dying was legalized in Canada following the Carter v. Canada ruling of 2015. In spite of legalization, the ethics of medical assistance in dying remain contentious, with a paucity of research regarding physicians' moral perspectives on the matter. By asking physicians if they perceive the major bioethical accounts as clinically useful, we seek to distinguish between aspects of the contemporary bioethical landscape which are useful at the bedside and those which are divorced from the realities faced by clinicians. Methods We applied a qualitative interpretive phenomenological approach to examine the convergence and divergence of physicians' subjective experiences and bioethical distinctions in providing MAiD and WLT. Results 21 interview transcripts were thematically analyzed and coded, which generated four overarching themes: 1) moral differences between MAiD and WLT; 2) the causal role of the medical practitioner; 3) semantic appropriateness of 'killing' versus 'allowing to die; and 4) intent of the physician. Overall, physicians emphasized the importance of understanding the realities of patients at the bedside prior to engaging in bioethical abstraction of MAiD's legitimacy. Conclusions In order to have practical utility for clinical practice, it is essential for bioethicists to engage in dialogue with patients and their medical providers pursuing MAiD or WLT. Esoteric debates that are divorced from the realities of terminal illness do not assist physicians with navigating the ethical terrain of ending a patient's life. This research captures meaningful accounts regarding MAiD and WLT that is rooted in the lived experience of the providers of these services in order for bioethical debates to have substantive impact in clinical practice and in legislation surrounding future health policies.
Compassionate Research: Interviewing and Storytelling from a Relational Ethics of Care
In this chapter, I address how we as researchers do compassionate research that has as a goal to honor, care for, and support others we interview. What does it mean, how does it feel, and what decisions have to be made as we form relationships and relate to our participants moment by moment, situation by situation? What role does our own self-examination play in doing this well? Does compassion require that we bring agency or a sense of regeneration to the lives of our participants? I approach these questions from a relational ethics of care. I begin with the discussion that took place after my presentation. For guidance in addressing the issues raised there about compassionate research, I call on work on ethics from feminist, oral history, and autoethnography scholars, as well as from those writing about relational ethics in health care. I discuss concerns that arise in doing research with those we already know or with whom we form relationships during the research process, as is the case in my work with Holocaust survivor, Jerry Rawicki. To open up a conversation about how compassionate research from a relational ethics of care might take place in practice, I end with a story that portrays my relationship with Jerry as we visit Treblinka, where his family members were murdered. Complete reference: Ellis, C. (2017) “Compassionate Research: Interviewing and Storytelling from a Relational Ethics of Care,” The Routledge International Handbook on Narrative and Life History, edited by Ivor Goodson, Molly Andrews, and Ari Antikainen. Routledge, pp. 431-445.