Older people's experiences of vulnerability in a trust-based welfare society affected by the COVID-19 pandemic.

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.

Blurred lines: Ethical challenges related to autonomy in home-based care.

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.

'A Story of Being Invisible': A Single Case Study on the Significance of Being Recognised When Needing Acute Healthcare in the Early COVID-19 Pandemic.

Severe illness is often an existential threat that triggers emotions like fear, stress, and anxiousness. Such emotions can affect ill patients' encounters with healthcare personnel. We present a single case study of an older woman who contracted COVID-19 and her challenge to be recognised by healthcare personnel in the early pandemic. Storytelling is vital to understand how patients can create meaning in illness as it gives them the opportunity to reshape and restore their past and to project a future. We used Arthur Frank's dialogical narrative analysis to explore how one patient experienced her encounters with healthcare personnel. Although she felt very ill from COVID-19, she experienced being almost invisible and not being believed by healthcare personnel in a system marked by high stress levels and uncertainty. Despite rejections and illness, she managed to mobilise her resources, even though she depended on significant others. Her story brings forward altered self-understanding and growth. The importance of facilitating dialogical settings for healthcare professionals through patient storytelling also contributes to a broader societal understanding of illness beyond a biological perspective.

Dignity in relationships and existence in nursing homes' cultures.

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.

Ethical challenges and lack of ethical language in nurse leadership.

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.

"This path I must walk alone". Challenges experienced by older patients while recovering from severe COVID-19 - a qualitative study.

BACKGROUND: In March 2020, the COVID-19 pandemic challenged both the Norwegian population and healthcare system. In this study we explored how older men and women experienced rehabilitation and recovery after hospitalisation due to severe COVID-19. METHODS: Semi-structured interviews with 17 participants aged 60-96 years were performed 6 months after discharge from hospital. A thematic descriptive analysis was conducted. RESULTS: The results revealed that the participants experienced a challenging span between loneliness and companionship in recovering from severe COVID-19. The four subthemes highlighted experiences of being discharged to home and left to themselves, the importance of exercise and companionship at rehabilitation stay, requirement of self-effort and time to recover, and the challenging span between loneliness and companionship when being with family. CONCLUSION: Among participants, the experiences of loneliness throughout the recovery period were striking. An individualised approach including psychological support should be emphasized in primary healthcare to promote recovery in older survivors after severe COVID-19 and their next-of-kin.

Older patients' perspectives on illness and healthcare during the early phase of the COVID-19 pandemic.

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.

A vulnerable journey towards professional empathy and moral courage.

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.

Ethics reflection groups for school nurses.

BACKGROUND: School nurses have great responsibilities as the connecting link between school, children/adolescents, parents, and other healthcare services. Being in this middle position, and handling complex situations and problems related to children in school, may be demanding and also lead to ethical challenges. Clinical ethics support, such as ethics reflection groups, may be of help when dealing with ethical challenges. However, there is little research on experiences with ethics reflection groups among school nurses. AIM: The aim of this research was to explore how nurses in school healthcare experience their role, and how they experience participation in ethics reflection groups, using a model for systematic ethics reflection, the Centre for Medical Ethics model. RESEARCH DESIGN: The project had a qualitative design, using focus group interviews and thematic analysis. ETHICAL CONSIDERATIONS: The study was evaluated by the Data Protection Official at the Norwegian Centre for Research Data (project no. 57373). The participants were given oral and written information about the study and signed a written consent. PARTICIPANTS AND CONTEXT: Twelve participants from school healthcare were recruited to the interviews. FINDINGS: School nurses described their role as extremely challenging. How the school nurses experienced their role also influenced how they experienced participating in ethics reflection groups. The Centre for Medical Ethics model was experienced as both challenging and comprehensive. However, they also experienced that the model helped them to clarify their role and could also help them to find better solutions. CONCLUSION: The role as school nurse is complex and demanding, with several ethical challenges. Ethics reflection groups may be of great help when dealing with these challenges. However, it is of great importance that the methods used are adjusted to the professionals' needs and context.

Ethical challenges in home-based care: A systematic literature review.

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 (Population, Intervention, Comparison, and Outcome) 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.

Back to WHAT? The role of research ethics in pandemic times.

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 (CHIs) 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.

Is allocation of nursing home placement in Norway just?

BACKGROUND: One of the core ethical principles in the Norwegian welfare state is the principle of justice; all citizens should have equal access to healthcare services, including nursing homes, independent of where they live, socioeconomic status or age. Patients who apply for a permanent place in a nursing home are among society's most vulnerable. Hence, it is of great importance that the process of nursing home placement is just. The purpose of this study was to explore which criteria and values allocation of nursing home placements are built on, and whether the process is just. METHODS: The study has a qualitative design. Data were collected through individual interviews and observation. Executive officers in different municipalities who have the formal responsibility for the placements, and GPs and nurses on short-term wards in nursing homes were interviewed. In addition, one of the researchers observed meetings where allocation of municipal healthcare services was discussed. RESULTS: Healthcare personnel in primary health care mainly agree on which criteria are the most important in order to safeguard the principle of justice. However, some unintended and less highlighted factors could jeopardise the ideal of fair and just allocation. Some of these were organizational variations, variations in the municipalities' economy, variations in individual judgments and resourceful and strong-willed relatives. CONCLUSIONS: Our study indicates that some of the weakest and most vulnerable patients in the Norwegian society are not treated equally. In order to safeguard the principle of justice, specific national criteria should be used in allocation of nursing home placements. However, national criteria are not enough. We suggest that in addition to guiding criteria, the unintended factors should be given more attention and focus on how to control them in a better way.

Clinical application research through reflection, interpretation and new understanding - a hermeneutic design.

The implementation of theoretical knowledge in clinical practice and the implementation of good clinical practice into theory have been of interest in caring science for the last 30 years. The aim of this article was to elaborate and discuss a methodology named clinical application research. The method is grounded in a hermeneutical design inspired by Gadamer's philosophy. The methodology, clinical application research, has been used in a research project A life in dignity and experiences from the researchers forms the bases for the elaboration and discussion. The project was performed in collaboration with residents, family caregivers and healthcare providers at six nursing homes in Scandinavia. The material for this article is based on the previous research, that is the results from 10 different articles showing the meaning of dignity and indignity in daily life in nursing homes. Data were generated from 56 individual interviews and 18 focus-group interviews with a total of 40 staff members with five to eight participants at every interview session. By reflection, interpretation and new understanding our results provide knowledge about dignity and how to preserve dignity for older people in an appropriate ethical way. The methodology was relevant for the research project A life in dignity and relevant to caring practice in nursing homes as it opens new possibilities and new ways of thinking when performing dignified care to older people.

Undergraduate nursing students' ability to empathize: A qualitative study.

BACKGROUND: Empathy is of great importance in nursing, as it helps us to see and meet the needs of patients and hence to care for patients in an appropriate way. Therefore, it is of great importance that nursing students and nurses develop their ability to empathize. OBJECTIVE: The study aimed at gaining knowledge on what characterizes undergraduate nursing students' ability to empathize with patients during their first practice in a nursing home. In addition, the aim of the study was to investigate what nursing students think is important with regard to upholding their ability to empathize with patients in a professional way. RESEARCH DESIGN: This research has a phenomenological and hermeneutic design, based on qualitative interviews. Participants and research context: A total of 11 undergraduate nursing students participated in interviews during or right after their first practice in a nursing home. Ethical considerations: Norwegian Social Science Data Services approved the study. Participants were informed that their participation was voluntary. The participants were also assured confidentiality, and they were informed that they could withdraw from the study at any time, without providing any reasons. FINDINGS: What the findings show is that affective empathy is strong among undergraduate nursing students in their first practice. They think the emotions are important to be able to empathize, and they are afraid of becoming indifferent. At the same time, they are afraid that the feelings will hinder them from acting in a professional manner. DISCUSSION: The findings are discussed in light of previous theories on empathy, and especially perspectives on empathy, emotions, and morality. CONCLUSION: Affective empathy seems to be strong among nursing students, and this may be of great importance to be sensitive to patients' well-being. However, affective and cognitive empathy should be balanced if nurses will have to meet patients in a professional way.

Fostering dignity in the care of nursing home residents through slow caring.

BACKGROUND: Physical impairment and dependency on others may be a threat to dignity. RESEARCH QUESTIONS: The purpose of this study was to explore dignity as a core concept in caring, and how healthcare personnel focus on and foster dignity in nursing home residents. RESEARCH DESIGN: This study has a hermeneutic design. Participants and research context: In all, 40 healthcare personnel from six nursing homes in Scandinavia participated in focus group interviews in this study. Ethical considerations: This study has been evaluated and approved by the Regional Ethical Committees and the Social Science Data Services in the respective Scandinavian countries. FINDINGS: Two main themes emerged: dignity as distinction (I), and dignity as influence and participation (II). DISCUSSION: A common understanding was that stress and business was a daily challenge. CONCLUSION: Therefore, and according to the health personnel, maintaining human dignity requires slow caring in nursing homes, as an essential approach.

The significance of meaningful and enjoyable activities for nursing home resident's experiences of dignity.

BACKGROUND: Living in a nursing home may be challenging to the residents' experience of dignity. Residents' perception of how their dignity is respected in everyday care is important. AIM: To examine how nursing home residents experience dignity through the provision of activities that foster meaning and joy in their daily life. METHOD: A qualitative design was used and 28 individual semistructured interviews conducted with nursing home residents from six nursing homes in Denmark, Norway and Sweden. The data were analysed with qualitative content analysis. Independent ethical committees in all participating countries granted their approval for the study. FINDINGS: The participants highlight two dimensions of the activities that foster experiences of dignity in nursing homes in Scandinavia. These two categories were (i) fostering dignity through meaningful participation and (ii) fostering dignity through experiencing enjoyable individualised activities. CONCLUSION: Activities are important for residents to experience dignity in their daily life in nursing homes. However, it is important to tailor the activities to the individual and to enable the residents to take part actively. Nurses should collect information about the resident's preferences for participation in activities at the nursing home.

Maintaining dignity in vulnerability: A qualitative study of the residents' perspective on dignity in nursing homes.

BACKGROUND: Older people, living in nursing homes, are exposed to diverse situations, which may be associated with loss of dignity. To help them maintain their dignity, it is important to explore, how dignity is preserved in such context. Views of dignity and factors influencing dignity have been studied from both the residents' and the care providers' perspective. However, most of these studies pertain to experiences in the dying or the illness context. Knowledge is scarce about how older people experience their dignity within their everyday lives in nursing homes. AIM: To illuminate the meaning of maintaining dignity from the perspective of older people living in nursing homes. METHOD: This qualitative study is based on individual interviews. Twenty-eight nursing home residents were included from six nursing homes in Scandinavia. A phenomenological-hermeneutic approach, inspired by Ricoeur was used to understand the meaning of the narrated text. RESULTS: The meaning of maintaining dignity was constituted in a sense of vulnerability to the self, and elucidated in three major interrelated themes: Being involved as a human being, being involved as the person one is and strives to become, and being involved as an integrated member of the society. CONCLUSION: The results reveal that maintaining dignity in nursing homes from the perspective of the residents can be explained as a kind of ongoing identity process based on opportunities to be involved, and confirmed in interaction with significant others.

The Dialectical Movement Between Deprivation and Preservation of a Person's Life Space: A Question of Nursing Home Residents' Dignity.

The aim of this study was to answer the question "What do nursing home residents do themselves in order to maintain their dignity?" Twenty-eight residents, 8 men and 20 women, aged 62 to 103 years, from 6 different nursing homes in Scandinavia were interviewed. The results showed that the residents tried to expand their life space, both physical and ontological, in order to experience health and dignity.

How individuals with dementia in nursing homes maintain their dignity through life storytelling - a case study.

AIMS AND OBJECTIVES: The aim of this article was to present and discuss findings on what individuals with dementia do by themselves to maintain or promote their dignity of identity when they live in a nursing home. BACKGROUND: The majority of residents living in Norwegian nursing homes suffer from dementia. Individuals who suffer from dementia are particularly vulnerable, and their dignity of identity is at risk. It is therefore of great importance to explore how we can maintain their dignity of identity. DESIGN: The study builds on a phenomenological and hermeneutic design. METHODS: The article reports three cases or life stories based on participant observation in two different nursing homes and interviews with five residents with dementia living in these nursing homes. Fifteen residents with dementia from these nursing home wards were included in the overall study. RESULTS: Individuals with dementia living in nursing homes may use life storytelling or narratives to manage chaos and to find safety in their lives. Storytelling is also used as a way to present and maintain identity. We can see this as a way of maintaining dignity of identity or social dignity. CONCLUSION: Life storytelling can be seen as an important way of preserving dignity for people with dementia. It is of great importance that health care professionals are open to and listen to the life stories people with dementia tell. RELEVANCE TO CLINICAL PRACTICE: As nurses we have an obligation to ensure that dignity is enhanced in care for people with dementia. Knowledge about how residents with dementia use life storytelling as a way to maintain dignity is therefore of great importance to health care workers in nursing homes.

Dignity and care for people with dementia living in nursing homes.

This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.