Background Nurse leaders increasingly need effective tools that facilitate the prioritisation of ethics and help staff navigate ethical challenges and prevent moral distress. This study examined experiences with a new digital tool for ethical reflection, tailored to improve the capabilities of both leaders and employees in the context of municipal long-term care. Aim The aim was to explore the experiences of nurse leaders and nurses in using Digital Ethical Reflection as a tool for ethics work in home (...) class='Hi'>nursing care. Research design The study employed a qualitative design, incorporating individual and focus group interviews for data collection. Qualitative content analysis was used to analyse the data. Participants and research context The participants comprised six nurse leaders and 13 nurses, representing six home care zones across two Norwegian municipalities. Ethical considerations The study involved informed, voluntary participation and was approved by the Norwegian Agency for Shared Services in Education and Research. Findings Four themes were developed: a constant walk on the edge between engagement and discouragement and lost in translation describe the process, while tuning in to the ethical dimension and navigating ethical uncertainties illuminate the experienced significance of Digital Ethical Reflection. Conclusion Success with Digital Ethical Reflection in home nursing care depends on clear leadership planning, nurses’ understanding of the tool’s purpose, and active use of digital registrations. Support from ethically interested nurses enhances overall engagement. Further research is needed to explore the potential of Digital Ethical Reflection as an additional tool in long-term care ethics work. (shrink)

The aim of this study was to illuminate the meaning of receiving help from home nursing care for the chronically ill, elderly persons living in their homes. The study was carried out in Norway. Data were collected by narrative interviews and analysed by phenomenological hermeneutic interpretations. Receiving help from home nursing care sometimes meant ‘Being ill and dependent on help’. Other times it meant ‘Being at the mercy of help’. It could also mean ‘Feeling (...) inferior as a human being’. Sometimes help was given by nurses who were respectful and proficient at caring for an elderly person, while at other times nurses seemed to be incompetent and worked with a paternalistic attitude without respect for privacy. Receiving help also meant elderly persons wanted to be regarded and approached as equal human beings, supported in the courage to meet challenges in life. (shrink)

The purpose of this study was to investigate nurses’ decisions about priorities in home-based nursing care. Qualitative research interviews were conducted with 17 nurses in home-based care. The interviews were analyzed and interpreted according to a hermeneutic methodology. Nurses describe clinical priorities in home-based care as rationing care to mind the gap between an extensive workload and staff shortages. By organizing home-based care according to tight time schedules, the nurses’ are (...) able to provide care for as many patients as possible. Furthermore, legal norms set boundaries for clinical priority decisions, resulting in marginalized care. Hence, rationing care jeopardizes important values in the nurse-patient relationship, in particular the value of individualized and inclusive nursing care. The findings are highly relevant for clinical practice, since they have major implications for provision of nursing care. They revive debates about the protection of values and standards of care, and nurses’ role and responsibility when resources are limited. (shrink)

Elderly people are a particularly vulnerable group in society and have special health problems. The world population of older people is increasing. People who are 65 years or older constitute 6% of the Turkish population, 90% of whom have chronic health problems. In Turkey, there is a high possibility that elderly people’s requirements are not met by today’s health care system in the way they would wish. They prefer not to be hospitalized when they have health problems. From a (...) wider perspective, various countries are still seeking how to provide the best care for elderly people. Our goal was to characterize home-based care for elderly people using an ethical approach as an area of interest for nurses and other health care professionals now and in the future, both for Turkey specifically and from a global perspective. We studied four case histories and then prepared a composite scenario and a short questionnaire for elderly people living in a specific district of Istanbul to evaluate their expectations from the health care system. We compared our findings with situations in other countries and have proposed some practical solutions. The results showed that these older people preferred to receive nursing care at home instead of in hospital in Turkey, and also in many other countries. In this article we discuss our findings, comparing them with those in the literature, and suggest that there should be nursing care at home with insurance coverage while using a proper ethical approach. (shrink)

Over the last twenty years, ‘palliative care’ has evolved as a special nursing field in Germany. Its historic roots are seen in the hospices of the Middle Ages or in the hospice movement of the twentieth century. Actually, there are numerous everyday sources to be found about this subject from the nineteenth century. The article at hand deals with the history of nursing the terminally ill and dying in domestic care in the nineteenth century. Taking (...) class='Hi'>care of and nursing the dying was part of everyday routine in the nursing care as practiced by the deaconesses and sisters in those days. Mit der Seelenpflege bei den unheilbar Kranken und Sterbenden schufen die Kaiserswerther Diakonissen sich einen von Ärzten unabhängigen Kompetenzbereich. Meine Analysen zur Privatpflege zeigen jedoch darüber hinaus, dass die in ihrer Aufmerksamkeit auf das Mutterhaus ausgerichteten Diakonissen auch in Leibespflege sehr viel unabhängiger von den Ärzten zu agieren schienen als die freien Krankenschwestern. The article takes a look not only at the actual nursing activities but also at the relationship between the sisters and their patients and their relatives and the family doctor. On the basis of the recorded letters which the nurses wrote to the deaconess motherhouse in Kaiserswerth, it is also possible to analyze how the deaconesses communicated and reflected their actions at the deathbed. (shrink)

Background: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised. Objective: This study aimed to explore nurses’ experiences of compassion when caring for palliative patients in home nursing care. Design and (...) participants: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway. Ethical considerations: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data. Findings: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient’s plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes. Discussion: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content. Conclusion: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient – and a nurse perspective. (shrink)

The aim of this study was to explore and interpret the diverse subject of positions, or roles, that nurses construct when caring for patients in their own home. Ten interviews were analysed and interpreted using discourse analysis. The findings show that these nurses working in home care constructed two positions: `guest' and `professional'. They had to make a choice between these positions because it was impossible to be both at the same time. An ethics of care (...) and an ethics of justice were present in these positions, both of which create diverse ethical appeals, that is, implicit demands to perform according to a guest or to a professional norm. (shrink)

One aim of this study was to explore the role, or subject position, patients take in the care they receive from nurses in their own home. Another was to examine the subject position that patients say the nurses take when giving care to them in their own home. Ten interviews were analysed and interpreted according to a discourse analytical method. The findings show that patients constructed their subject position as `safeguard', and the nurses' subject position as (...) `substitute' for themselves. These subject positions provided the opportunities, and the obstacles, for the patients' possibilities to receive care in their home. The subject positions described have ethical repercussions and illuminate that the patients put great demands on tailored care. (shrink)

Abstract This article explores interview data from a study of 50 Norwegian generalist nurses' focus group accounts of caring for dying patients in the hospital and care home. An eclectic discourse analytic approach was applied to nurses' accounts of the patient and three discursive contexts of reference to the patient were identified: the 'taken as read' patient, the patient paired with particular characteristics and the patient as psychologically present. Talk about the patient falls mainly into the first two (...) contexts, which position the patient in relation to three closely related discursive processes: individualization, anonymization and objectification. The third context presents the patient as a person with a particular identity. The analysis is discussed in a broader philosophical and sociological context in which we return to some of the theoretical work on death and dying of the 1990s and the topic of sequestration. We suggest that nurses' talk about the patient can be heard to participate in a continuing sequestration of the dying patient in healthcare institutions focused on 'result-oriented' care. (shrink)

The difficulties faced in the recruitment and retention of nursing staff in nursing homes for older people are an international challenge. It is therefore essential that the causes of nurses’ reluctance to work in these settings are determined. This paper considers the influence that multiple‐source care funding issues have on nursing home nurses’ experiences and views regarding the practice and appeal of the role. The methodology for this study was hermeneutic phenomenology. Thirteen nurses from seven (...) nursing homes in the North East of England were interviewed in a sequence of up to five interviews and data were analysed using a literary analysis method. Findings indicate that participants are uncomfortable with the business aspects that funding issues bring to their role. The primary difficulties faced are: tensions between care issues and funding issues; challenges associated with ‘selling beds’; and coping with self‐funding residents’ changing expectations of care. The findings of the study suggest that multiple‐source care funding systems that operate in nursing homes for older people pose challenges to nursing home nurses. Some of these challenges may impact on their recruitment and retention. (shrink)

From the state to the family: reconfiguring the responsibility for long‐term nursing care at homeThis paper discusses the implications of the shift in the location of the provision of healthcare services from healthcare institutions to the home, which has occurred or is projected to occur in coming years. It is argued that the responsibility for the provision of care and assistance needed by the elderly living at home and people with long‐term conditions living at (...) class='Hi'>home has shifted from public services to the family. Studies of care‐givers have shown that in many situations they experience tremendous burdens, financial difficulties and health problems. Their social lives have been confined to the home, and contacts with friends and neighbors have been significantly reduced. This situation needs to be addressed by nurses, who in many cases serve as the bridge between the home and the official healthcare system. Using Foucault’s exploration of power, particularly his idea of governmentality, a genealogy of care‐giving in the home in Iceland’s health‐care has been constructed. The main findings were that, although this is occurring somewhat later than in many other countries, the state is withdrawing from its previously defined responsibility for the health and well‐being of the nation. At the same time the citizen’s responsibility for maintaining health is emphasized. Based on these findings, the argument is made that nurses in Iceland can have a profound influence on policy‐making in relation to the organization of services provided in those homes. Suggestions are made as to how this can be done, which may be of interest to nurses in other countries. (shrink)

Background: Older, frail patients with multimorbidity are at an especially high risk for disease severity and death from COVID-19. The social restrictions proved challenging for the residents, their relatives, and the care staff. While these restrictions clearly impacted daily life in Norwegian nursing homes, knowledge about how the pandemic influenced nursing practice is sparse. Aim: The aim of the study was to illuminate ethical difficult situations experienced by Norwegian nurses working in nursing homes during the COVID-19 (...) pandemic. Research design and participants: The research design involved semistructured individual interviews conducted with 15 nurses working in 8 nursing homes in 3 health regions in Norway, within both urban and rural areas. Ethical considerations: Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Norwegian Centre for Research Data. Findings: Four ethical difficult situations were identified: (a) turning the nursing home into a prison; (b) using medication to maintain peace and order; (c) being left alone with the responsibility; and (d) s. impact on decision-making. Conclusions: The nurses’ ethical challenges were intertwined with external factors, such as national and local guidelines, and the nurses’ own internalized factors, which were connected to their subjective professionality. This duality inflicted emotional distress and gave nurses few opportunities to perform nursing in a professionally sound and safe manner. (shrink)

Ongoing changes in many Western countries have resulted in more healthcare services being transferred to municipalities and taking place in patients’ homes. This greatly impacts nurses’ work in home care, making their work increasingly diverse and demanding. In this study, we explore home‐care nursing through a critical discourse analysis of focus group interviews with home‐care nurses. Drawing on insights from positioning theory, we discuss the content and delineation of their work and the interweaving (...) of contextual changes. Nurses hold a crucial position in home healthcare, particularly in ensuring care for sicker patients with complex needs. Assessing health needs, performing advanced care, and at the same time, providing customized solutions in various homes were identified as distinctive for home‐care nurses’ work. Changes have made nurses’ work become driven by comprehensive tasks and acute medical needs that require much of their competence and time. Urgent care seems to take precedence in nurses’ work, leaving less time and attention for other tasks such as conversations and support for coping with everyday life. This underlines the need to investigate and discuss the content and scope of nurses’ work to help shape the further development of home‐care nursing. (shrink)

Background In long-term care, registered nurses and other care providers often experience tensions between ideals and realities in the delivery of services, which can result in stress of conscience. Burnout, low quality of care and a tendency to leave the profession are perceived as consequences. Objectives This study aimed to identify the socio-demographic and work-related factors associated with a high level of stress of conscience, particularly between nursing occupations. Research design A cross-sectional survey was conducted among (...) care providers who worked in Norwegian nursing homes and home care services in the spring of 2021. The sample consisted of 950 registered nurses and 1143 other care providers. Data were collected online using the Stress of Conscience Questionnaire (SCQ). Ethical considerations Participation was voluntary and based on consent. The study was approved by the Norwegian Center for Research Data. Results Registered nurses were nearly twice as likely to report high levels of stress of conscience compared to other care providers in long-term care. In addition, being a female, living alone, caring for their own children, working in an institution (versus home based), working >75% time, working shifts, not having scheduled meetings for ethical reflection and working in municipalities with a higher population density were factors associated with a high level of SCQ score. Discussion Knowledge of factors that increase the risk of high SCQ scores in registered nurses provides opportunities for prevention. Managers in long-term care should pay more attention to how work is distributed between the occupational groups and should facilitate real opportunities for ethical reflection. Conclusions The results of this study show that registered nurses have particular exposure to high levels of stress of conscience compared to other care providers in long-term care. Particular attention should be paid to registered nurses working in nursing homes. (shrink)

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two (...) groups of relevant others. The high burden of home‐care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical‐ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others. (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 (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. (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 A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study (...) involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73–9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29–5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0–1); 95% confidence interval 0.08–0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03–0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage. (shrink)

Nowadays, it is common that newly built hospitals are designed with single‐room accommodation, unlike in the past, where shared accommodation was the favoured standard. Despite this change in hospital design, very little is known about how single‐room accommodation affects nurses' work environment and nursing care. This study evaluates how the single‐room design affects nurses and nursing care in the single‐room hospital design. Nurses working in the single‐room design predominantly work alone with little opportunity for peer training, (...) interaction and reflection. In addition, the single‐room design affects the nurses' work environment due to changes in sensory stimulation and increased walking distances. Furthermore, a change in the discourse, namely, regarding the single room as the patient's home, makes the nurses react to queries, demands and tasks in a new way. Overall, the new hospital design forces the nurses into a more reactive role and affect their way of providing nursing care. Despite this, the nurses find single‐room accommodation beneficial for the patients and their nursing care. (shrink)

Background: Troubled conscience among nurses and other healthcare workers represents a significant contributor to healthcare worker moral distress, burnout and attrition. While research in this area has examined critical care in hospitals, less knowledge has been obtained from long-term care contexts such as nursing homes, despite widely recognised challenges with regard to vulnerable patients, increasing workload and maintaining workforce sustainability among nurses. Objective: The aim of this study was to illuminate and interpret the meaning of the lived (...) experience of troubled conscience among registered nurses (RNs) working in nursing homes. Research design: This qualitative research employed narrative interviews with eight nurses to obtain essential meanings of their lived experiences of troubled conscience. The interview texts were analysed using a phenomenological hermeneutic approach. Ethical considerations: Participation was voluntary, informed and was conducted with written consent. The Norwegian Centre for Research Data approved the data processing of personal data. Findings: The analysis uncovered two themes: (1) troubled conscience means abandoning ideals, with the subthemes: failing dependent patients; being disloyal to colleagues; being inadequate in the performance of work tasks and (2) troubled conscience means facing realities, with the subthemes: accepting being part of the system; responding to barriers. Discussion: Troubled conscience meant experiencing continuous and simmering tension between one’s ideals and realities and feeling a drive to preserve accountability and one’s moral integrity. Endangered ideals were often under cross-pressure and included humanistic values, professional values, working life values and the values of the organisation. Conclusion: Nurses’ troubled conscience refers to a struggle, but also a force that plays out at various levels and arenas in long-term care. Openness and dialogue about how professional values and the welfare state’s intentions can be realised within the given framework are important for individual nurses’ occupational health as well as the quality of care provided to patients. (shrink)

Five registered nurses were interviewed as part of a comprehensive investigation by five researchers into the narratives of five enrolled nurses (study 1, published in Nursing Ethics 2004), five registered nurses (study 2) and 10 patients (study 3) describing their experiences in an acute care ward at one university hospital in Sweden. The project was developed at the Centre for Nursing Science at Ö rebro University Hospital. The ward in question was opened in 1997 and provides (...) class='Hi'>care for a period of up to three days, during which time a decision has to be made regarding further care elsewhere or a return home. The registered nurses were interviewed concerning their experience of being in ethically difficult care situations in their work. Interpretation of the theme ‘ethical problems’ was left to the interviewees to reflect upon. A phenomenological hermeneutic method (inspired by the French philosopher Paul Ricoeur) was used in all three studies. The most prominent feature revealed was the enormous responsibility present. When discussing their responsibility, their working environment and their own reactions such as stress and conscience, the registered nurses focused on the patients and the possible negative consequences for them, and showed what was at stake for the patients themselves. The nurses demonstrated both directly and indirectly what they consider to be good nursing practices. They therefore demand very high standards of themselves in their interactions with their patients. They create demands on themselves that they believe to be identical to those expected by patients. (shrink)

Background: Nurse managers are expected to continuously ensure that ethical standards are met and to support healthcare workers’ ethical competence. Several studies have concluded that nurses across various healthcare settings lack the support needed to provide safe, compassionate and competent ethical care. Objective: The aim of this study was to explore and understand how nurse managers perceive their role in supporting their staff in conducting ethically sound care in nursing homes and home nursing care. (...) Design and participants: Qualitative individual interviews were performed with 10 nurse managers with human resources responsibilities for healthcare workers in four nursing home wards and six home nursing care districts. Content analysis was used to analyse the data. Ethical considerations: The Norwegian Centre for Research Data granted permission for this study. Findings: The analysis resulted in seven subcategories that were grouped into three main categories: managers’ perception of the importance of the role, managers’ experiences of exercising the role and managers’ opportunities to fulfil the role. Challenges with conceptualizing ethics were highlighted, as well as lack of applicable tools or time and varying motivation among employees. Discussion: The leaders tended to perceive ethics as a ‘personal matter’ and that the need for and benefit of ethical support (e.g., ethics reflection) depended on individuals’ vulnerability, attitudes, commitment and previous experiences. The managers did not seem to distinguish between their own responsibility to support ethical competence and the responsibility of the individual employee to provide ethical care. Conclusions: Our findings suggest that nurse managers need support themselves, both to understand and to carry out their responsibilities to foster their staffs’ ethical conduct. Supporting staff in conducting ethically sound care requires more than organizing meeting places for ethical reflection; it also requires greater awareness and understanding of what ethical leadership means. (shrink)

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. (shrink)

Background Moral distress is a far-reaching problem for nurses in different settings as it threatens their health. Aim This study examined which situations lead to moral distress in home-care nursing, how and with which consequences home-care nurses experience moral distress, and how they cope with morally stressful situations and the resulting moral distress. Research design A qualitative interview study with reflexive thematic analysis was used. Participants and research context We conducted semi-structured interviews with 20 (...) class='Hi'>home-care nurses in Germany. Ethical considerations The study was approved by the Data Protection Office and Ethics Committee of the German Federal Institute for Occupational Safety and Health. Findings Twenty (14 female and 6 male) home-care nurses were interviewed between April and August 2023 at their chosen location. The situations leading to moral distress were inadequate care of the person in need of care, not being able to protect one’s health, extended responsibility for the entire care arrangement, work–privacy conflicts, and conflicts between the understanding of care or professional ethics and the performance and billing system. The nurses experienced moral distress as they worked alone and provided care in the patient’s territory. Short- and long-term strains with destructive cognitions, negative emotions, physical symptoms, and health consequences were reported. They faced challenges in coping with moral distress on institutional and individual levels. Conclusions In cases of tension between the service and billing system and the understanding of these nurses’ care services, moral distress is unavoidable. Alternative forms of organization and billing modalities, such as payment by time and the expansion and refinancing of service, should be implemented. The latter relates to systematic case and ethics meetings. Further, a transfer of medical activities, such as the prescription of wound material to registered nurses, could prevent morally stressful situations and improve patients’ quality of care. (shrink)

Background: A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for (...) nursing staff, less stress, and greater mutual understanding. Going through studies focusing on the experiences of nursing home patients’ relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words. Aim: The aim of the study is to investigate relatives of persons with dementia’s experiences with quality care in nursing homes. Method: The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological–hermeneutical method for the study of lived experiences. Participants and research context: Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included. Ethical considerations: The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study. Findings: Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives’ experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt. Discussion: The results are discussed considering the concepts of trust, power and asymmetry. Conclusion: When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim. (shrink)

Background Prioritization decision-making arises when nurses encounter intricate situations that demand ethically challenging judgments about care. This phenomenon has rarely been studied in nursing homes. Prioritization decision-making may lead to instances where individuals in social and healthcare may not receive all services they need. Making prioritization decisions and awareness of their consequences can increase nurses’ workload. Aim To describe prioritization decision-making regarding unfinished nursing care in nursing homes. Research design A qualitative descriptive study conducted through (...) individual theme interviews. Participants were recruited through social media. The data was analyzed using inductive content analysis. Participants and research context Nurses ( n = 23) working in nursing homes for the elderly people in Finland. Data were collected between June 2022 and February 2023. Ethical considerations Finnish legislation does not mandate an ethical review or research permits, as the participants took part as private individuals. [ask authors to make reference here to informed consent process and anonymity] Findings Nurses stated that the need for prioritization decision-making arises from challenges associated with nurses’ engagement with person-centered care, the culture of the work community, the burden due to workload and challenges associated with the leadership. Prioritization decision-making was based on the interests of residents, striving for an efficient workflow and nurse’s personal interests. Nurses did not receive support for decision-making regarding unfinished care, and protocols for prioritization had not been established in their work communities. Prioritization decision-making and unfinished care were concealed and left unspoken. Conclusion Nursing leaders should address this hidden phenomenon, making it visible through discussions with nurses and by involving them in the development of protocols. The findings can be utilized for developing new approaches to support nurses and reduce their workload and for enhancing the quality and person-centeredness of nursing care in nursing homes. (shrink)

Background: Confidentiality lies at the core of medical ethics and is the cornerstone for developing and keeping a trusting relationship between nurses and patients. In the wake of the HIV epidemic, there has been a heightened focus on confidentiality in healthcare contexts. Nurses’ follow-up of HIV-positive women and their susceptible HIV-exposed children has proved to be challenging in this regard, but the ethical dilemmas concerning confidentiality that emerge in the process of ensuring HIV-free survival of the third party – the (...) child – have attracted limited attention. Objective: The study explores challenges of confidentiality linked to a third party in nurse–patient relationships in a rural Tanzanian HIV/AIDS context. Study context: The study was carried out in rural and semi-urban settings of Tanzania where the population is largely agro-pastoral, the formal educational level is low and poverty is rife. The HIV prevalence of 1.5% is low compared to the national prevalence of 5.1%. Methods: Data were collected during 9 months of ethnographic fieldwork and consisted of participant observation in clinical settings and during home visits combined with in-depth interviews. The main categories of informants were nurses employed in prevention of mother-to-child transmission of HIV programmes and HIV-positive women enrolled in these programmes. Ethical considerations: Based on information about the study aims, all informants consented to participate. Ethical approval was granted by ethics review boards in Tanzania and Norway. Findings and discussion: The material indicates a delicate balance between the nurses’ attempt to secure the HIV-free survival of the babies and the mothers’ desire to preserve confidentiality. Profound confidentiality-related dilemmas emerged in actual practice, and indications of a lack of thorough consideration of the implication of a patient’s restricted disclosure came to light during follow-up of the HIV-positive women and the third party – the child who is at risk of HIV infection through mother’s milk. World Health Organization’s substantial focus on infant survival (Millennium Development Goal-4) and the strong calls for disclosure among the HIV-positive are reflected on in the discussion. (shrink)

Background Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents. Aim The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research (...) design, participants, and research context We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize. (shrink)

The high-tech health service work done by amateur family caregivers in U.S. homes challenges the conventional division of the social world into public and private. Under new federal reimbursement systems, the diagnosis-related groups, patients are being discharged sicker than before from hospitals and nursing homes, or after treatments in outpatient clinics. Health care facilities depend on a work transfer, shifting their earlier responsibilities for the sick to the family. There, women family members do for free the work once (...) done by paid health service workers in health care facilities, caring for family members who need their nursing and housekeeping services. Women's unpaid work knits together “public” and “private,” demonstrating how capitalism reorganizes the labor process to make use of free service labor. (shrink)

Background: Autonomy and participation are threatened within the group of older people living in nursing homes. Evidence suggests that healthcare personnel act on behalf of older people but are still excluding them from decision-making in everyday care. Objective: The purpose was to describe registered nurses’ experience of caring for older people in nursing homes to promote autonomy and participation. Research design: A descriptive design with a phenomenological approach was used. Data were collected by semi-structured individual interviews. Analysis (...) was inspired by Giorgi’s method. Participants and research context: A total of 13 registered nurses from 10 nursing homes participated. Ethical considerations: Ethical approval was obtained from the Regional Research Ethics Committee. Informed consent was achieved and confidentiality guaranteed. Findings: The essence of caring for older people in nursing homes to promote autonomy and participation consisted of registered nurses’ awareness of older people’s frailty and the impact of illness to support health and well-being, and awareness of acknowledgement in everyday life and trusting relationships. Paying attention to older people by being open to the persons’ wishes were aspects that relied on registered nurses’ trusting relationships with older people, their relatives and surrounding healthcare personnel. The awareness reflected challenges in caring to promote older people’s right to autonomy and participation in nursing homes. Registered nurses’ strategies, hopes for and/or concerns about development of everyday life in nursing homes were revealed and mirrored their engagement in caring for older people. Discussion and conclusion: Awareness of older people’s frailty in nursing homes and the importance of maintained health and well-being were described as the main source for promoting autonomy and participation. Everyday life and care in nursing homes needs to be addressed from both older people’s and healthcare personnel’s perspectives, to promote autonomy and participation for residents in nursing homes. (shrink)

Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses’ perspectives of providing care to older persons at the end of life in a nursing (...) home. Research design: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; “Death a natural part of life”; “The older person’s well-being”; and “Care in the moment of death”; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons’ dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development. (shrink)

The ethical dimension of care work is less explored in Chinese long-term care (LTC) settings. This paper accentuates care ethics embodied by direct care workers (DCWs) from an ethnographic study of care at Sunlight Nursing Home in central China. I include the notion of xiao (filial piety) to construe care ethics by engaging both feminist and intersectional approaches. Empirical findings highlight the narrative of mei banfa (‘there is nothing you can do about (...) it’) in revealing the complexity of caregiving in a commercialised environment where both physical and emotional care intertwine. Mei banfa compels DCWs to invoke their agency in care practice despite inadequate support from the nursing home and negative social portrayals of care work. It is a cognitive coping strategy of DCWs to harness their energy in upholding care ethics for both the elderly residents and their own family members. Such commitment is unlikely to be sustained if structural barriers continue to impede the recognition of care labour as part of social production. Arguably, an ethically informed approach to both policymaking and care practice gives voice to human interdependency in care work and affords ways to reimagine a caring future. (shrink)

Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In (...) order to explore this, poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of ‘plugged in’ as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative care. (shrink)

The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing (...) homes and for dying people with dementia. This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia. (shrink)

Background: Human rights are an important part of nursing practice. Although there is increasing recognition regarding the importance of including human rights education in nursing education, few studies have focused on nursing students’ perspectives and experiences in relation to human rights in nursing, especially regarding older nursing home residents’ right to food. Objective: To explore nursing students’ perspectives and experiences in relation to the right to food. Research design: The study followed a qualitative (...) interpretative research design. Data were collected from multistage focus groups before, during and after clinical placement in a nursing home and analysed through thematic analysis. Participants and research context: Participants were 18 first-year nursing students; the study was conducted in 2017. Ethical considerations: This study was approved by the Norwegian Centre for Research Data. Findings: Students’ understanding of older nursing home residents’ right to food was a dynamic process. Their perceptions evolved from a polarized perspective to a reality orientation and finally to retrospective reflection. Discussion: The article discusses how nursing students learn about and understand human rights within and throughout their placements. Conclusion: The study bridges human rights theory and practice. Findings suggest that the human right to food must be enacted in daily practice for students to learn in context. Human rights education, specifically pertaining to nutritional care, thus benefits from a practice-oriented approach preparing students to face ‘real life’ challenges and ethical dilemmas. Findings will help nurse educators tailor education in this field. (shrink)

ZusammenfassungDerzeit gibt es in Österreich kein in allen Bundesländern einheitlich etabliertes Betreuungsmodell eines „Heimarztes“ für Pflegeheime. Im Bundesland Wien werden seit mehr als 100 Jahren chronisch Kranke und hochgradig pflegebedürftige Menschen in den städtischen Pflegeeinrichtungen und in einigen Institutionen geistlicher Träger rund um die Uhr von angestellten geriatrisch versierten ÄrztInnen betreut. Die Rechtsform dieser Häuser entspricht prinzipiell der einer „Pflegeanstalt für Chronisch Kranke“ nach dem Österreichischen Krankenanstaltengesetz. Aber auch andere Träger in Wien und Niederösterreich beschäftigen angestellte ÄrztInnen an Bettenstationen von (...) Pflege- und Wohnheimen. Der Bedarf nach einer kontinuierlichen, fachlich spezialisierten ärztlichen Betreuung ergibt sich vor allem aus der Notwendigkeit der Therapie psychiatrischer Erkrankungen im hohen Alter mit Psychopharmaka, der komplexen Multimorbidität und Polypharmazie, sowie aus dem Bedarf nach rehabilitativen Maßnahmen bzw. palliativer Begleitung am Lebensende. Mit dieser Aufgabenstellung sind geriatrisch nicht adäquat ausgebildete bzw. nicht in den Pflegeheimen integrierte ÄrztInnen häufig überfordert. Die Konsequenzen davon sind häufige Spitalseinweisungen bzw. suboptimale ärztliche Betreuung. Als notwendige Maßnahmen zur Qualitätssicherung in geriatrischen Pflegeeinrichtungen ist daher bundesweit die Implementierung von qualifizierten HeimärztInnen nach niederländischem Vorbild zu fordern. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and (...) context: A case study was conducted in a professional development course (‘learning circle’) for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

In this paper, we argue that ‘good care’ in residential nursing homes is enacted through different care practices that are either inspired by a ‘professional logic of care’ that aims for justice and non-maleficence in the professional treatment of residents, or by a ‘relational logic of care’, which attends to the relational quality and the meaning of interpersonal connectedness in people’s lives. Rather than favoring one care logic over the other, this paper indicates how (...) important aspects of care are constantly negotiated between different care practices. Based on the intricate everyday negotiations observed during an ethnographic field study at an elderly nursing home in Germany, the paper puts forth the argument that care is always a matter of tinkering with different, sometimes competing ‘goods’. This tinkering process, which unfolds through ‘intuitive deliberation’, ‘situated assessment’ and ‘affective juggling’ is then theorized along the conceptualization of a ‘practical ethics of care’: an ethics which makes no a priori judgments of what may be considered as good or bad care, but instead calls for momentary judgments that are pliable across changing situations. (shrink)

Background: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a (...) complex undertaking. It is unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. Objectives: The aim of this study was to explore the professional caregivers’ perspectives on good care for residents with Korsakoff syndrome. Methods: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. Participants and research context: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. Ethical considerations: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. Findings: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. Discussion and conclusion: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners’ reflection on their own ideas about good care for people with Korsakoff syndrome. (shrink)

Book reviewed in this article: Unloving Care: The Nursing Home Tragedy. By Brace C. Vladeck.

Patients in nursing homes sometimes give accounts of episodes in which they feel their autonomy and/or self-respect are violated as a result of the care they receive from nursing staff. In these ethically difficult care situations nurses use strategies such as negotiation, explanation and, in some cases, restraint. This study investigates how nurses apply these strategies to resolve ethical dilemmas in such a way that patients experience respect rather than violation. Critical issues that will be discussed (...) include the definition of ethically difficult care situations in nursing homes and the identification of strategies for resolving such situations. Examples of the use of three strategies are presented. The use of negotiation, restraint and explanation are discussed in order to ensure respect for patients’ autonomy and thus to optimize health care outcomes. (shrink)

In this article I will argue that futile medical and nursing care is not only inefficacious but that it may be harmful to the patient and also to health professionals, who may be diminished both as clinicians and as persons if they are not able to give appropriate care to dying patients and their families. I discuss futile care in intensive care units because the opportunities and the temptation to provide futile care in these (...) settings is higher than, for instance, in internal medicine and nursing home care. I argue, following two nurse ethicists, Carol Taylor and Colleen Scanlon, that, even if nurses are not the initiators of futile care, they play an important role in its prevention because of their clinical expertise. They can do this by convening ‘patient care conferences’ when they recognize the need to bring together the various parties that have conflicting expectations. These conferences would then result in appropriate palliative care. The nurses providing this care would demonstrate their understanding of the process whereby living becomes the process of dying. (shrink)

In the state of Victoria, Australia in the late 1950s and early 1960s, restorative treatment was introduced into the state‐subsidised benevolent homes, and they were reclassified as geriatric hospitals. In the process, the nursing care of incapacitated old people was identified in terms of particular skills and knowledge, and specific forms of training were established for nurses at two levels of training: nurses’ aides and supervisory nurses with a postbasic qualification. These institutional changes were complemented by the introduction (...) of a nursing role into the body responsible for overseeing care for the aged in Victoria. Little was made of this opportunity to establish a leading role for nurses in the field of care for the aged. However, this episode raises fertile questions for further research into the development of nursing in Australia, as a set of practices divided along the lines of acute and chronic illness. (shrink)

A large proportion of nursing home residents in developed countries come from ethnic minority groups. Unmet care needs and poor quality of care for this resident population have been widely reported. This systematic review aimed to explore social conditions affecting ethnic minority residents' ability to exercise their autonomy in communication and care while in nursing homes. In total, 19 studies were included in the review. Findings revealed that ethno‐specific nursing homes create the ideal (...) social condition for residents to express their care needs and preferences in a language of choice. In nonethno‐specific nursing homes, staff cultural competence and nursing home commitment to culturally safe care are crucial social conditions that enable this group of residents to fulfil their autonomy in communicating and in participating in their care. In contrast, social conditions that undermine residents' ability to express their care needs and preferences include low levels of staff cultural awareness and cultural desire, negative attitudes towards residents and limited organisational support for staff to improve culturally responsive and culturally safe care. In conclusion, it is important to optimise the social conditions to support ethnic minority residents to communicate their care needs and preferences. (shrink)