Re-examining ethical challenges of using ethnography to understand decision-making in family caregiving networks of children with feeding tubes

2022 ◽  
pp. 1-13
Author(s):  
Sara Loftus
2015 ◽  
Vol 32 (2) ◽  
pp. 91 ◽  
Author(s):  
Eniola Salami ◽  
Bonnie Lashewicz

In Canadian law, the concept of autonomy is individualistic in nature, manifest as the capacity, or legal ability of an individual to actively understand the purpose and consequences of their actions according to whether they have faculties to comprehend and weigh risks and benefits.  Feminist scholars critique such conceptualizations of autonomy and, instead, argue the importance of “relational autonomy” which is predicated on the view that actions result from one’s own volition in combination with the influence of one’s social and relational connections. In this paper, we examine the dynamics and implications of relational autonomy in decision-making by adults with developmental disabilities by studying adults with developmental disabilities in interaction with their caregiving family members.  Our purpose is to contribute understandings of how and in what ways family caregiving relational contexts both support and hinder decision-making by adults with developmental disabilities.  We begin with an overview of conceptualizations and applications of autonomy, then illustrate relational autonomy dynamics through comparative analysis of data from two women with developmental disabilities who were interviewed together with their family caregivers about successes and struggles in giving and receiving care and making decisions. These two women, and their family caregivers (N=9) are selected from a larger sample of adults with developmental disabilities and their family caregivers (N = 26) because the contrasts, as well as the similarities, between their family care situations are striking, and taken together, illustrate a range of ways in which decision-making is supported and hindered.  We conclude by upholding the importance of relational autonomy for legal understandings of decision-making, yet we caution that critical examination of relationship dynamics is vital. En droit canadien, le concept de l’autonomie est un concept individualiste de par sa nature et est perçu comme l’aptitude, physique ou juridique, d’une personne à comprendre activement l’objet et les conséquences de ses actes en fonction de la question de savoir si elle possède les facultés voulues pour apprécier et soupeser les risques et les avantages en jeu. Des universitaires féministes critiquent ces conceptualisations de l’autonomie et mettent plutôt l’accent sur l’importance de l’« autonomie relationnelle », qui repose sur l’interaction entre la volonté de la personne et l’influence de ses contacts sociaux et relationnels. Dans le présent document, nous nous penchons sur la dynamique et sur les incidences de l’autonomie relationnelle dans les décisions que prennent les adultes handicapés en étudiant l’interaction d’adultes handicapés avec leurs aidants familiaux. Notre but est de favoriser une meilleure compréhension de la mesure dans laquelle les contextes relationnels dans lesquels se trouvent les aidants familiaux peuvent à la fois appuyer et entraver le processus de prise de décisions chez les adultes handicapés. Après avoir présenté un bref aperçu des conceptualisations et des applications de l’autonomie, nous illustrons la dynamique de l’autonomie relationnelle au moyen d’une analyse comparative de données provenant de deux femmes handicapées qui ont été interrogées ainsi que leurs aidants familiaux au sujet des défis et des réussites liés à la prestation et à la réception de soins et à la prise de décisions. Ces deux femmes et leurs aidants familiaux (N=9) ont été choisis à partir d’un plus grand échantillon d’adultes handicapés et de leurs aidants familiaux (N=26), parce que les contrastes, tout comme les similitudes, entre leurs situations sont frappants et que, examinées ensemble, ces données illustrent différentes façons dont la prise de décisions est appuyée et entravée. Nous concluons en insistant sur l’importance de l’autonomie relationnelle pour la compréhension des aspects juridiques de la prise de décisions, tout en soulignant qu’un examen critique de la dynamique des relations est vital.


2018 ◽  
Vol 165 (5) ◽  
pp. 346-350 ◽  
Author(s):  
Luke John Turner ◽  
D Wilkins ◽  
J I J A Woodhouse

Exercise ASKARI SERPENT (Ex AS) is an annual British Army medical exercise that sees the deployment of a medical regiment to rural Kenya. The exercise involves the delivery of health outreach clinics and health education to the civilian population alongside Kenyan governmental and non-governmental organisations. This article includes a post hoc analysis of the ethical and clinical challenges that clinicians faced during Ex AS, applying a four-quadrant approach to ethical decision-making. This article intends to stimulate further debate and discussion on how to best prepare clinicians for clinical challenges and ethical decision-making on future exercises and operations. We conclude that our experiences on Ex AS can provide an insight on how to develop predeployment training for clinicians. Furthermore, the universal nature of the challenges faced on Ex AS can be applied to training for future contingency operations.


BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e039463
Author(s):  
Ramin Asgary ◽  
Katharine Lawrence

IntroductionData regarding underpinning and implications of ethical challenges faced by humanitarian workers and their organisations in humanitarian operations are limited.MethodsWe conducted comprehensive, semistructured interviews with 44 experienced humanitarian aid workers, from the field to headquarters, to evaluate and describe ethical conditions in humanitarian situations.Results61% were female; average age was 41.8 years; 500 collective years of humanitarian experience (11.8 average) working with diverse major international non-governmental organisations. Important themes included; allocation schemes and integrity of the humanitarian industry, including resource allocation and fair access to and use of services; staff or organisational competencies and aid quality; humanitarian process and unintended consequences; corruption, diversion, complicity and competing interests, and intentions versus outcomes; professionalism and interpersonal and institutional responses; and exposure to extreme inequities and emotional and moral distress. Related concepts included broader industry context and allocations; decision-making, values, roles and sustainability; resource misuse at programme, government and international agency levels; aid effectiveness and utility versus futility, and negative consequences. Multiple contributing, confounding and contradictory factors were identified, including context complexity and multiple decision-making levels; limited input from beneficiaries of aid; different or competing social constructs, values or sociocultural differences; and shortcomings, impracticality, or competing philosophical theories or ethical frameworks.ConclusionsEthical situations are overarching and often present themselves outside the exclusive scope of moral reasoning, philosophical views, professional codes, ethical or legal frameworks, humanitarian principles or social constructivism. This study helped identify a common instinct to uphold fairness and justice as an underlying drive to maintain humanity through proximity, solidarity, transparency and accountability.


2020 ◽  
pp. medethics-2020-106557 ◽  
Author(s):  
Rosalind J McDougall ◽  
Lynn Gillam ◽  
Danielle Ko ◽  
Isabella Holmes ◽  
Clare Delany

The COVID-19 pandemic has highlighted the risks that can be involved in healthcare work. In this paper, we explore the issue of staff safety in clinical work using the example of personal protective equipment (PPE) in the COVID-19 crisis. We articulate some of the specific ethical challenges around PPE currently being faced by front-line clinicians, and develop an approach to staff safety that involves balancing duty to care and personal well-being. We describe each of these values, and present a decision-making framework that integrates the two. The aim of the framework is to guide the process of balancing these two values when staff safety is at stake, by facilitating ethical reflection and/or decision-making that is systematic, specific and transparent. It provides a structure for individual reflection, collaborative staff discussion, and decision-making by those responsible for teams, departments and other groups of healthcare staff. Overall the framework guides the decision maker to characterise the degree of risk to staff, articulate feasible options for staff protection in that specific setting and identify the option that ensures any decrease in patient care is proportionate to the increase in staff well-being. It applies specifically to issues of PPE in COVID-19, and also has potential to assist decision makers in other situations involving protection of healthcare staff.


2000 ◽  
Vol 21 ◽  
pp. 269 ◽  
Author(s):  
Suzanne M. Narayan ◽  
Kenneth W. Hepburn ◽  
Marsha L. Lewis ◽  
Sheila A. Corcoran-Perry

2007 ◽  
Vol 14 (4) ◽  
pp. 503-509 ◽  
Author(s):  
Sheila Shaibu

Reflections on my experience of conducting research in Botswana are used to highlight tensions and conflicts that arise from adhering to the western conceptualization of bioethics and the need to be culturally sensitive when carrying out research in one's own culture. Cultural practices required the need to exercise discretionary judgement guided by respect for the culture and decision-making protocols of the research participants. Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized.


2019 ◽  
Author(s):  
Nataliya Berbyuk Lindström ◽  
Aynalem Abraha Woldemariam ◽  
Abebe Bekele ◽  
Christian Munthe ◽  
Rune Andersson ◽  
...  

BACKGROUND Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital in Addis Ababa is the sole specialist unit for cancer care in the country. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential to help patients as much as possible within such limitations. OBJECTIVE The project has the following three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice; and (3) to plan and evaluate interventions in this area. METHODS This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making and ethical tension among patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semistructured interviews with Ethiopian staff (n= 16), patients (n= 54), and family caregivers (n= 22); survey data on cancer awareness (n=150) and attitudes toward breaking bad news (n=450); and video recordings of medical consultations (n=45). In addition, we will develop clinical and methodological solutions to formulate educational interventions. RESULTS The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018 to 2021. The research ethics boards in Sweden and Ethiopia approved the project in May 2018. The results of the studies will be published in 2020 and 2021. CONCLUSIONS The project is the first step toward providing unique and seminal knowledge for the specific context of Ethiopia in the areas of physician-patient communication research and ethics. It contributes to the understanding of the complexity of the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low-resource settings in Africa and the Middle East, which share central cultural prerequisites, such as a strong patriarchal family structure, along with strong and devout religiosity. The project will also serve to develop greater understanding about the current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/16493


2019 ◽  
Vol 2019 ◽  
Author(s):  
Paul Henman

Globally there is strong enthusiasm for using Artificial Intelligence (AI) in government decision making, yet this technocratic approach is not without significant downsides including bias, exacerbating discrimination and inequalities, and reducing government accountability and transparency. A flurry of analytical and policy work has recently sought to identify principles, policies, regulations and institutions for enacting ethical AI. Yet, what is lacking is a practical framework and means by which AI can be assessed as un/ethical. This paper provides an overview of an applied analytical framework for assessing the ethics of AI. It notes that AI (or algorithmic) decision-making is an outcome of data, code, context and use. Using these four categories, the paper articulates key questions necessary to determine the potential ethical challenges of using an AI/algorithm in decision making, and provides the basis for their articulation within a practical toolkit that can be demonstrated against known AI decision-making tools.


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