The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and (...) guidelines carefully crafted over time. In this paper we disentangle some of the arguments put forward in the ongoing debate about Covid-19 human challenge studies and the concomitant role of health-related research ethics in pandemic times. We suggest it might be helpful to think through a lens differentiating between risk, strict uncertainty and ignorance. We provide some examples of lessons learned by harm done in the name of research in the past and discuss the relevance of this legacy in the current situation. (shrink)

Background: In accordance with ethical guidelines for nurses, leaders for nurse services in general are responsible for facilitating professional development and ethical reflection and to use ethical guidelines as a management tool. Research describes a gap between employees’ and nurse leaders’ perceptions of priorities. Objective: The purpose of this article is to gain deeper insight into how nurses as leaders in somatic hospitals describe ethical challenges. Design and method: We conducted individual, quality interview with 10 nurse leaders, nine females and (...) one male nurse aged 34–64 years. We used a hermeneutical approach to analyse the data. Ethical considerations: The participants received oral and written information about the study. Participation in the study was voluntary, and the participants were given the opportunity to withdraw. All of them gave written consent. The Norwegian Centre for Research Data approved the research project. In addition, the head of the hospitals gave permission to conduct our study. Findings: Four main areas were identified: deficient ethical language, conflicting demands on nurse leaders regarding staff management, concerns regarding young nurses’ ethical consciousness and restricting factors on the creation of a climate of ethics. The nurse leaders experienced considerable pressure. An unexpected finding was the lack of – and even disregard for – an ethical language. Discussion and conclusion: It is crucial to recognise ethics in all types of nursing approaches and to make it explicit. Ethical language must be implemented in nursing education. It must be recognised and used in clinical practice. Recommendations: We recommend further research be conducted into how nurses understand the concept of ethics and how to incorporate ethical principles into clinical nursing and nurse leadership. (shrink)

Because of the transfer of responsibility from hospitals to community-based settings, providers in home-based care have more responsibilities and a wider range of tasks and responsibilities than before, often with limited resources. The increased responsibilities and the complexity of tasks and patient groups may lead to several ethical challenges. A systematic search in the databases MEDLINE, CINAHL, and SveMed+ was carried out in February 2019 and August 2020. The research question was translated into a modified PICO worksheet. A total of (...) 40 articles were included. The review is conducted according to the Vancouver Protocol. The main findings from the systematic literature review show that ethical challenges experienced by healthcare and social care providers in home-based care are related to autonomy and balancing ethical principles, decisions regarding intensity of care, challenges related to priority settings, truth-telling, and balancing the professional role. Findings regarding ethical challenges within home-based care are in line with findings from institutional healthcare and social care settings. However, some significant differences from the institutional context are also highlighted. (shrink)

The overall purpose of this cross-country Nordic study was to gain further knowledge about maintaining and promoting dignity in nursing home residents. The purpose of this article is to present results pertaining to the following question: How is nursing home residents’ dignity maintained, promoted or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods in (...) this part of this study consisted of individual research interviews. Altogether, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: ‘A feeling of being abandoned’. The sub-themes are designated as follows: deprived of the feeling of belonging, deprived of dignity due to acts of omission, deprived of confirmation, deprived of dignity due to physical humiliation, deprived of dignity due to psychological humiliation and deprived of parts of life. (shrink)

Background Home-based care workers mainly work alone in the patient’s home. They encounter a diverse patient population with complex health issues. This inevitably leads to several ethical challenges. Aim The aim is to gain insight into ethical challenges related to patient autonomy in home-based care and how home-based care staff handle such challenges. Research design The study is based on a 9-month fieldwork, including participant observation and interviews in home-based care. Data were analysed with a thematic analysis approach. Participants and (...) research context The study took place within home-based care in three municipalities in Eastern Norway, with six staff members as key informants. Ethical considerations The Norwegian Agency for Shared Services in Education and Research evaluated the study. All participants were competent to consent and signed an informed consent form. Findings A main challenge was that staff found it difficult to respect the patient’s autonomy while at the same time practicing appropriate care. We found two main themes: Autonomy and risk in tension; and strategies to balance autonomy and risk. These were explicated in four sub-themes: Refusing and resisting care; when choosing to live at home becomes risky; sweet-talking and coaxing; and building trust over time. Staff’s threshold for considering the use of coercion appeared to be high. Conclusions Arguably, home-based care staff need improved knowledge of coercion and the legislation regulating it. There is also a need for arenas for ethics reflection and building of competence in balancing ethical values in recurrent ethical problems. (shrink)

Background: Empathy and moral courage are important virtues in nursing and nursing ethics. Hence, it is of great importance that nursing students and nurses develop their ability to empathize and their willingness to demonstrate moral courage. Research aim: The aim of this article is to explore third-year undergraduate nursing students’ perceptions and experiences in developing empathy and moral courage. Research design: This study employed a longitudinal qualitative design based on individual interviews. Participants and research context: Seven undergraduate nursing students were (...) interviewed during or immediately following their final clinical placement. Ethical considerations: The Norwegian Social Science Data Services (NSD) approved the study. Participants were informed that their participation was voluntary and were assured confidentiality. They were informed that they could withdraw from the study at any time, without providing reasons. Findings: Affective empathy seemed to be strong among third-year undergraduate nursing students. However, they tried to handle the situations in a ‘professional’ way, and to balance their emotions. At the same time, they expressed how difficult it can be to show moral courage when confronted with poor patient care. In addition, they spoke about a lack of role models during clinical practice and supervision. Conclusions: Undergraduate nursing students are in a vulnerable position throughout their journey to become professional and to develop empathy and moral courage. The professional socialisation and forming of professional empathy and moral courage among nursing students, may be seen as a complex interaction of formal and hidden curriculum, where role models play an important role. We argue that the main theme ‘Vulnerable students – a journey towards professional empathy and moral courage’ may cover the longitudinal project as a whole. This vulnerability is something both teachers and supervisors should be aware of when following up with students in their clinical placements. (shrink)

Background Equal access to healthcare is a core principle in Norway’s public healthcare system. The COVID-19 pandemic challenged healthcare systems in the early phase – in particular, related to testing and hospital capacity. There is little knowledge on how older people experienced being infected with an unfamiliar and severe disease, and how they experienced the need for healthcare early in the pandemic Aim To explore the experiences of older people infected by COVID-19 and their need for testing and hospitalisation. Research (...) design An explorative and descriptive approach, with qualitative interviews conducted in October 2020. Participants and research context Seventeen participants above 60 years of age hospitalised due to COVID-19 during spring 2020 were recruited 6 months after discharge. Ethical considerations Ethical approval was granted by the Regional Committee for Medical and Health Research Ethics in South-Eastern Norway (155425). Findings The main finding was that the informants experienced vulnerability and arbitrariness. This finding was supported by three sub-themes: experiences with a severe and unfamiliar disease, the strict criteria and the importance of someone advocating needs. Discussion Participants described varying access to healthcare. Those who did not meet the national criteria to be tested or hospitalised struggled against the system. Findings reveal arbitrary access to healthcare, in contrast to Norway’s ethical principle of fair and just access to health services. Moreover, to access and receive necessary healthcare, informants were dependent on their next-of-kin’s advocacy. Conclusion Even when dealing with an unfamiliar disease, health professionals’ assessments of symptoms must be performed with an ethical obligation to applicate competent appraisal and the exercise of discernment; this is in line with care ethics and ethical standards for nurses. These perspectives are a significant part of caring and the intension of doing good. (shrink)

Introduction: Expressions of dignity as a clinical phenomenon in nursing homes as expressed by caregivers were investigated. A coherence could be detected between the concepts and phenomena of existence and dignity in relationships and caring culture as a context. A caring culture is interpreted by caregivers as the meaning-making of what is accepted or not in the ward culture. Background: The rationale for the connection between existence and dignity in relationships and caring culture is that suffering is a part of (...) existence, as well as compassion in relieving suffering, and ontological interdependency. Aim: To describe different expressions of dignity in relationships and existence in context of caring cultures from the perspective of the caregivers. Research design: The methodology and method are hermeneutic. The method used was to merge the theoretical preunderstanding as one horizon of understanding with empirical data. Participants and research context: Focus group interviews with caregivers in nursing homes. Ethical considerations: The principles of the Helsinki Declaration have been followed to, for example, preserve self-determination, integrity, dignity, confidentiality and privacy of the research persons. Findings: Data interpretation resulted in four themes: Encountering existential needs that promote dignity in a caring culture; To amplify dignity in relationships by the creative art of caring in a caring culture; Violation of dignity by ignorance or neglect in a non-caring culture and The ethic of words and appropriated ground values in a caring culture. Discussion: Dignity-promoting acts of caring, or dignity-depriving acts of non-caring are adequate to see from the perspective of dignity in relationships and existence and the caring culture. Conclusions: Dignity in relationships seems to touch the innermost existential life, as the existential life is dependent on confirmation from others. (shrink)

The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible to plan (...) all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondents. (shrink)

The aim of this article is to investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia. The study had a qualitative design and used a phenomenological and hermeneutic approach. Participant observation in two nursing home units was combined with qualitative interviews with five residents living in these units. The study took place between March and December 2010. The residents feel that their freedom is restricted, and they describe feelings of homesickness. They also experience (...) that they are not being seen and heard as individual autonomous persons. This lack of freedom, experiences of homesickness and feelings of not being confirmed and respected as individual autonomous persons may be a threat to their personal dignity. In order to protect and enforce the dignity of persons with dementia living in nursing home, we should confirm them as whole and as individual persons, and we should try to make the nursing homes less institutional and more home like. (shrink)

The early coronavirus disease 2019 (COVID‐19) outbreak inflicted vulnerability on individuals and societies on a completely different scale than we have seen previously. The pandemic developed rapidly from 1 day to the next, and both society and individuals were put to the test. Older people's experiences of the early outbreak were no exception. Using an abductive analytical approach, the study explores the individual experiences of vulnerability as described by older people hospitalised with COVID–19 in the early outbreak. In these older (...) people, we found that the societal context and the individual experiences of vulnerability were inextricable linked. The study demonstrates that despite significant individual stress, informants displayed an interesting ability to also view their situation to reorient their perspective. The experience of vulnerability is both conditional and individual, which imposes a degree of unpredictability that neither they nor others were able to negotiate. The article discusses the phenomenon of unpredictability in light of a modern society with regard to how individuals and society may encounter unexpected events in the future where the potential to reorient will be vital. (shrink)