Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An explorative qualitative (...) study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported (...) a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs. (shrink)

Values and attitudes are strongly influenced by the subjective elements of the organizational culture of the medical school. The objective of this research was to better understand the medical school environment and the difficulties in training doctors in humanism in clinical practice. Qualitative research focused on subjective aspects of the teacher-student relationship, such as ethics and respect for differences, was conducted in a traditional Brazilian medical school. We used the technique of ethnographic observation and interviews with students and teachers. The (...) data were analysed according to three categories: 1. self and other, 2. misuse of technology, and 3. models of teacher-student interactions. Over 12 months, we observed 22 teachers and 128 students, and we interviewed 9 teachers and 19 students, who were recognized as key-interviewees. Our analyses revealed that the medical school environment enables doctors and medical students’ feelings of intellectual superiority, selfish and excessive competitiveness; inability to see the patient as a whole; overvaluation and excessive use of technology; role modelling of non-empathic behaviours; and behaviours showing disrespect, discrimination, and violence. These findings reveal attitudes that hamper the doctor-patient relationship, and some underlying issues of critical importance to the humanistic training of medical students. This study shows the need for institutional humanistic values to be adopted and applied to everyone. Perhaps an educational process that uses ethics more than academic disciplines should be used as a method of thinking and acting, which may encourage institutional changes that improve medical education as a whole. (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

Die Anforderungen an die ethische Kompetenzentwicklung im Rahmen der hochschulischen Pflegeausbildung sind anspruchsvoll und methodisch zu konkretisieren. Der Beitrag geht zunächst der Frage nach, wie Ethikkompetenz in Bezug auf die hochschulische Pflegeausbildung zu konturieren ist. Basierend auf dieser definitorischen Rahmung liegt das Augenmerk auf dem Prozess der Ethik-Leitlinienentwicklung als mögliche zu diskutierende Methode der Ethikkompetenzentwicklung. Hierbei ist die Frage leitend, ob der Prozess der Ethik-Leitlinienentwicklung im Rahmen des Studiums – analog zu den bis dato vielfach realisierten Fallanalysen – eine weitere (...) beziehungsweise ergänzende Methode der Ethikdidaktik sein könnte, um die für das professionelle Pflegehandeln relevanten Ethikkompetenzen im Rahmen der hochschulischen Pflegeausbildung anzubahnen und/oder zu verdichteten. (shrink)

With rapid advances in the biosciences, bioethics has become an important, if not vital part of a comprehensive bioscience education. Students who successfully complete a course in bioethics will be better equipped for writing manuscripts for publication, preparing research proposals for funding bodies and completing applications for research ethics committees. Given the importance of both grant writing and successful publication in a bioscience career, bioscience students who do not receive training in bioethics will be disadvantaged. Graduates who move into careers (...) other than research, such as science policy, administration or education, will also benefit from the inclusion of bioethics in their bioscience education because they will need to consider the ethical issues that arise in the context of policy, public relations and public health. Given the importance of including bioethics in a bioscience education, this paper presents the findings of an empirical study that was designed to evaluate the different ways to design and deliver a bioethics module for bioscience students. The study considers the aims and objectives; the teaching, learning and assessment strategies and the content of a ‘bioethics for bioscience’ module. At a more fundamental level, the study explores why bioethics should be taught, at what level bioethics should be delivered, how much time should be committed to the teaching of bioethics and the core topics that should be included in a bioethics module. (shrink)

During the education of scientists at the university level the students become more and more specialized. The specialization of the students is a consequence of the scientific research becoming specialized as well. In the interdisciplinary field of nanoscience the importance of specialization is also emphasized throughout the education. Being an interdisciplinary field of study the specialization in this area is not focused on scientific disciplines, but on the different branches of the research. Historically ethics has not been a priority in (...) science education, however, in recent years the importance of such teachings has been highly recognize especially in medicine, biotechnology and engineering. The rapid development, the many new and unknown areas and the highly specialized focus of nanotechnology suggest the importance of having ethically competent researchers. In this article the importance of ethical competence in nanoscience research is argued for by an example of a dilemma that could occur in a research project. The dilemma is analyzed using two different ethical views, generating two different choices for action. It is seen that the dilemma can have more than one solution and that ethical competence can help in justifying the choice of solution in a specific situation. Furthermore it is suggested that a way to reach this competence is through education in ethics incorporated into the nanoscience education curriculum. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

The intent of ethics is to establish a set of standards that will provide a framework to modify, regulate, and possibly enhance moral behaviour. Eleven focus groups were conducted with physicians from six culturally distinct countries to explore their perception of formalized, written ethical guidelines (i.e., codes of ethics, credos, value and mission statements) that attempt to direct their ethical practice. Six themes emerged from the data: lack of awareness, no impact, marginal impact, other codes or value statements supersede, personal (...) codes or values dictate, and ethical guidelines are useful. Overall, codes were valued only when they were congruent with existing personal morality. The findings suggest the need to re-evaluate the purpose, content, and delivery of codes for them to improve their function in promoting ethical conduct. (shrink)

Departing from a contemporary novel about a boy who is going to die from leukaemia, this article shows how the dimension of time can be seen as a morally relevant category that bridges both ‘dramatic’ issues, which constitute the dominant focus of bioethical decision making, and ‘undramatic’ issues, which characterize the lived experience of patients, relatives and health care workers. The moral task of comparing the various time dimensions of a given situation is explained as an act of ‘synchronizing’ the (...) clocks. Ethical sensitivity and competence are presented as core skills that allow a continuity of care in situations where dramatic issues seem to be resolved, but undramatic ones are still not addressed. A nine-step model of shared decision making is proposed as an approach to identifying critical junctures within an illness trajectory and synchronizing the clocks of the involved actors. (shrink)

Background The ethical competence of head nurses plays a pivotal role in nursing ethics. Ethical climate is a prerequisite for ethical competence, and moral resilience can positively influence an individual’s ethical competence. However, few studies have focused on the relationship between ethical climate, moral resilience, and ethical competence among them. Objectives To investigate the relationship between ethical climate, moral resilience, and ethical competence, and examine the mediating role of moral resilience between ethical climate and ethical competence among head nurses. Design (...) A quantitative, cross-sectional study. Methods A total of 309 Chinese head nurses completed an online survey, including ethical climate questionnaire, Rushton moral resilience scale, and ethical competence questionnaire. Inferential statistical analysis includes Pearson’s correlation and a structural equation model. Ethical considerations This study received ethical approval from the Institutional Review Board of Xiangya Nursing School of Central South University (No. E2023146). Results Head nurses’ ethical climate score positively impacted ethical competence (r = 0.208, p <.001), and ethical climate could affect ethical competence through the mediating role of moral resilience. Conclusion This study emphasized the value of ethical climate in moral resilience of head nurses, ultimately leading to an enhancement in their ethical competence. (shrink)

The realities of human agency and decision making pose serious challenges for research ethics. This article explores six major challenges that require more attention in the ethics education of students and scientists and in the research on ethical conduct in science. The first of them is the routinization of action, which makes the detection of ethical issues difficult. The social governance of action creates ethical problems related to power. The heuristic nature of human decision making implies the risk of ethical (...) bias. The moral disengagement mechanisms represent a human tendency to evade personal responsibility. The greatest challenge of all might be the situational variation in people’s ethical behaviour. Even minor situational factors have a surprisingly strong influence on our actions. Furthermore, finally, the nature of ethics itself also causes problems: instead of clear answers, we receive a multitude of theories and intuitions that may sometimes be contradictory. All these features of action and ethics represent significant risks for ethical conduct in science. I claim that they have to be managed within the everyday practices of science and addressed explicitly in research ethics education. I analyse them and suggest some ways in which their risks can be alleviated. (shrink)

Background: Most undergraduate midwifery curricula comprise ethics courses to strengthen the moral competences of future midwives. By contrast, surprisingly little is known about the specific moral competences considered to be relevant for midwifery practice. Describing these competences not only depends on generic assumptions about the moral nature of midwifery practice but also reflects which issues practitioners themselves classify as moral. Objective: The goal of this study was to gain insight into the ethical issues midwives encounter in their daily work, the (...) key competences and resources they consider indispensable to understand and deal with them, and to assess phenomena linked to moral distress. Methods: We conducted individual semi-structured interviews with eight midwives and two other health professionals, varying in terms of years of experience and work setting. Interview transcripts were analyzed in an interdisciplinary research group, following thematic analysis. Ethical considerations: This study was not subject to approval according to the Swiss Law on Research with Humans. Participants were informed about the study goals and gave written informed consent prior to participation. Results: External constraints limiting the midwife’s and the patient’s autonomy and resulting interpersonal conflicts were found to be the most relevant ethical issues encountered in clinical practice and were most often associated with moral distress. These conflicts often arise in the context of medical interventions midwives consider as not appropriate and situations in which less experienced midwives in particular observe a lack of both interprofessional communication and trust in their professional competence. Ethical issues related to late abortions or prenatal diagnostics and selective abortions were also frequently addressed, but many midwives involved had learned to cope with them. Discussion: In the light of the ethical issues and factors contributing to phenomena of moral distress, an empirically grounded profile of moral competences is drafted. Curricular implications in the light of possible adaptations within undergraduate midwifery education are critically discussed. (shrink)

From my own standpoint as a scientist, I, in this paper attempt to explore the scientific judgement-making process from an ethical perspective. In the process of developing truthful scientific knowledge, there are a myriad of judgements to make for the scientist. However, our contemporary world, dominated by technology, rules and regulations, presents us with less unconditioned opportunities for exercising our judgmental abilities. Any deliberation about a choice of action within our practice is, in a manner, made for us, and not (...) by us. The challenges that we meet is largely assumed solved either by rules of conduct or by formulas where the right thing to do is based on mechanical computations, or as within utilitarianism where one focuses on the consequences of an action. My thesis is, however, that virtue ethics and the concept of Phronesis, as a framework, is better suited to grasp the peculiarity of the scientific practice compared to the contemporary mind-set. Hence, I will try to display my perspective and show how virtue ethics can lead to enhanced understanding of both the epistemological and the ethical parts of the scientific practice. (shrink)

The aim of the present study was to describe and explore the perception of ethical guidelines and their role in ethical competence-building among Swedish physicians and research nurses. Twelve informants were interviewed in depth. The results demonstrated that the informants had a critical attitude towards ethical guidelines and claimed to make little use of them in practical moral judgements. Ethical competence was seen primarily as character-building, related to virtues such as being empathic, honest and loyal to patients. Ethical competence was (...) assumed to be learned through good examples, role models and practical experience, while ethical guidelines were not perceived as valuable in this process. In order to improve the staff's familiarity with and the usability of ethical guidelines, the workplace needs to provide opportunities for ethical dialogues. In such discussions, argumentation can improve, virtues can be developed and guidelines can be usefully invoked. (shrink)

BackgroundPatients have the right to equal, respectful treatment. Nowadays, one third of patient complaints concern health care staff’s behavior towards patients. Ethically safe care requires ethical competence, which has been addressed as a core competence in physiotherapy. It has been defined in terms of character strength, ethical awareness, moral judgment skills in decision-making, and willingness to do good. The purpose of this study was to analyze the ethical competence of practicing physiotherapists.MethodA self-evaluation instrument (Physiotherapist’s Ethical Competence Evaluation Tool) based on (...) an analysis of a concept “ethical competence” was constructed in 2016 and physiotherapists (n = 839), working in public health services or private practice responded to the questionnaire.ResultsBased on the results, most of the physiotherapists evaluated themselves highly ethically competent in all areas of ethical competence, subscales being Strength, Awareness, Skills and Will. Willingness to do good was evaluated as highest, while character strength, including the strength to support ethical processes and speak on behalf of the patient, was evaluated the lowest. Physiotherapists most commonly consult a colleague when encountering an ethical problem. Other methods for problem solving are not very familiar, neither are the international or national ethical codes of conduct.ConclusionsThis was the first attempt to assess all aspects of ethical competence empirically in a clinical environment in physiotherapy, using a novel self-evaluation instrument. Even if physiotherapists evaluate themselves as competent in ethics, further exploration is needed for ethical awareness. Also the patients’ viewpoints about ethically competent care should be considered, to better ensure ethical safety of the patient. (shrink)

In this paper, I discuss the role of care and competence, as well as their relationship to one another, in contemporary medical practice. I distinguish between two types of care. The first type, care1, represents a natural concern that motivates physicians to help or to act on the behalf of patients, i.e. to care about them. However, this care cannot guarantee the correct technical or right ethical action of physicians to meet the bodily and existential needs of patients, i.e. to (...) take care of them—care2. To that end, physicians must be competent in the practice of medicine both as evidence—based science (technical competence) and as patient—centered art (ethical competence). Only then, I argue, can physicians take care of (care2) patients’ bodily and existential needs in a compassionate and comprehensive manner. Importantly, although care1 precedes competence, competence—both technical and ethical—is required for genuine care2, which in turn reinforces an authentic care1. I utilize the play Wit, especially the character Jason Posner, and Francis Peabody’s exposition on caring for patients, to illustrate the role of care and competence in contemporary medical practice. (shrink)

Background: Exploring the concept of ethical competence in the context of healthcare is essential as it pertains to better quality of care. The concept still lacks a comprehensive definition covering the aspects of ethical expertise, ethical knowledge and action of a health professional. Objective: This article aims to report an analysis of the concept of ethical competence. Method: A modified strategy suggested by Walker and Avant was used to analyse the concept. Results: As a result, the concept of ethical competence (...) can be defined in terms of character strength, ethical awareness, moral judgement skills and willingness to do good. Virtuous professional, experience of a professional, human communication, ethical knowledge and supporting surroundings in the organisation can be seen as prerequisites for ethical competence. Ethical competence results in the best possible solutions for the patient, reduced moral distress at work and development and democratisation of society. Conclusion: The results of the analysis establish a basis for an instrument to evaluate health professionals’ ethical competence. It will guide educators, as well as managers in healthcare, to support the development of ethical conduct in healthcare. (shrink)

BackgroundClinical Ethics Support (CES) services are offered to support healthcare professionals in dealing with ethically difficult situations. Evaluation of CES is important to understand if it is indeed a supportive service in order to inform and improve future implementation of CES. Yet, methods to measure outcomes of CES are scarce. In 2014, the European Moral Case Deliberation Outcomes Instrument (Euro-MCD) was developed to measure outcomes of Moral Case Deliberation (MCD). To further validate the instrument, we tested it in field studies (...) and revised it. This paper presents the Euro-MCD 2.0 and describes the revision process.MethodsThe revision process comprised an iterative dialogue among the authors as Euro-MCD-project team, including empirical findings from six Euro-MCD field-studies and input from European experts in CES and theory. Empirical findings contained perceptions and experiences of MCD outcomes among healthcare professionals who participated in MCDs in various settings in Norway, Sweden and the Netherlands. Theoretical viewpoints on CES, literature on goals of CES and MCD and ethics theory guided the interpretation of the empirical findings and final selection of MCD outcomes.ResultsThe Euro-MCD 2.0 Instrument includes three domains: Moral Competence, Moral Teamwork and Moral Action. Moral Competence consists of items about moral sensitivity, analytical skills and virtuous attitude. Moral Teamwork includes open dialogue and supportive relationships and Moral Action refers to moral decision-making and responsible care. During the revision process, we made decisions about adding and reformulating items as well as decreasing the number from 26 to 15 items. We also altered the sentence structure of items to assess the current status of outcomes (e.g. ‘now’) instead of an assumed improvement over time (e.g. ‘better’) and we omitted the question about perceived importance.ConclusionsThe Euro-MCD 2.0 is shorter, less complex and more strongly substantiated by an integration of empirical findings, theoretical reflections and dialogues with participants and experts. Use of the Euro-MCD 2.0 will facilitate evaluation of MCD and can thereby monitor and foster implementation and quality of MCD. The Euro-MCD 2.0 will strengthen future research on evaluation of outcomes of MCD. (shrink)

DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be (...) developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions. Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis. Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing. In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient. (shrink)