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: 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)

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)

Internationally, primary health care has in recent years gained a more central position in political priorities to ensure sustainable health care for the population. Thus, more people receive health care locally and in their own homes, where home‐care nursing plays a large role. In this article, we investigate how home‐care nursing is articulated and made visible in contemporary Norwegian policy documents. The study is a Fairclough‐inspired critical discourse analysis seeking to uncover (...) the position of nursing in the prevailing political ideologies on current primary health care. In the documents, we identified several complementary and conflicting understandings about home‐care nursing. Home‐care nursing is presented as a basic part of a municipality's health services, but at the same time, its content and contribution are unclear and almost invisible. We argue that the absence of nursing leads to significant perspectives being left out and tie this to the fact that some patient groups and tasks seem to be disadvantaged. The political placement of home‐care nursing in the health‐care landscape is thus not just about nursing as a professional practice but also concerns fundamental care values in our society in relation to disadvantaged groups and work tasks. (shrink)

Background Nurses frequently face situations in their daily practice that are ethically difficult to handle and can lead to moral distress. Objective This study aimed to explore the phenomenon of moral distress and describe its work-related predictors and individual consequences for home-care nurses in Germany. Research design A cross-sectional design was employed. The moral distress scale and the COPSOQ III-questionnaire were used within the framework of an online survey conducted among home-care nurses in Germany. Frequency analyses, (...) multiple linear and logistic regressions, and Rasch analyses were performed. Participants and research context The invitation to participate was sent to every German home-care service ( n = 16,608). Ethical considerations The study was approved by the Data Protection Office and Ethics Committee of the German Federal Institute for Occupational Safety and Health. Results A total of 976 home-care nurses participated in this study. Job characteristics, such as high emotional demands, frequent work-life-conflicts, low influence at work, and low social support, were associated with higher disturbance caused by moral distress in home-care nurses. Organizational characteristics of home-care services, such as time margin with patients, predicted moral distress. High disturbance levels due to moral distress predicted higher burnout, worse state of health, and the intention to leave the job and the profession, but did not predict sickness absence. Conclusions To prevent home-care nurses from experiencing severe consequences of moral distress, adequate interventions should be developed. Home-care services ought to consider family friendly shifts, provide social support, such as opportunities for exchange within the team, and facilitate coping with emotional demands. Sufficient time for patient care must be scheduled and short-term takeover of unknown tours should be prevented. There is a need to develop and evaluate additional interventions aimed at reducing moral distress, specifically in the home-care nursing sector. (shrink)

Interpretations of family carer empowerment in much nursing research, and in home‐care practice and policy, rarely attend explicitly to families’ choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home‐care nurses’ interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 (...) nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed. (shrink)

The patient’s home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home‐care nursing encounters (HCNEs) between the nurse, patient and patient’s relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to (...) explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co‐creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co‐creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co‐creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person‐centered approach. (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)

The aim of this study was to explore the meaning of experience for home‐care nurses in a multicultural area of Sweden. Interviews and group discussions with a team of five home‐care nurses were interpreted in accordance with a hermeneutical perspective. The meaning was expressed in connection with the complexities of place, and space for care. Contradictions developed from diversities of perspectives incorporated in this particular multicultural area. Nurses saw themselves as mediators and allowed complexity to (...) be considered in order to manage care. They took on responsibility of creating a ‘space of care’, while the organizational structures of home care were perceived as something outside the care praxis. Making contradictions evident renders an intermediary caring strategy feasible. (shrink)

This study aimed to identify the ethical issues faced by home care physicians and nurses, and the support they require. It was conducted in collaboration with the Japanese Association for Home Care Medicine from November to December 2020. An e-mail was sent to 2785 physicians and 582 nurses who are members of the society, requesting their participation in a web-based survey targeting physicians and nurses with practical experience in home care; 152 physicians and 53 (...) nurses responded. Home care physicians and nurses face ethical issues, some of which are that “the patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity” and “there is disagreement between the patient and their family members over the necessary healthcare.” The respondents sought “experience with, and insight into, healthcare ethics” and “home care” from people with whom they would consult on ethical issues, but at the time of the actual consultation, those individuals were the main healthcare professionals involved with the patient. In addition, the respondents desired to have “multidisciplinary discussions in the community,” “participation of healthcare ethics experts at meetings,” and “meetings held by healthcare ethics experts” to discuss specific cases. Given these results and the history of healthcare ethics education in Japan—which has been implemented mostly for healthcare providers—we conclude that it is important for academic societies that offer healthcare ethics education to healthcare providers and regional core hospitals with ethics support resources to collaborate to provide ethics consultation services in the community. (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)

Background: Critical care nurses have risked their lives and in some cases their families through hazardous duty during the COVID-19 pandemic and have faced multiple ethical challenges. Research/aim: The purpose of our study was to examine how critical care nurses coped with the sustained multi-faceted pressures of the critical care environment during the unchartered waters of the COVID-19 pandemic. It was anticipated that our study might reveal numerous ethical challenges and decision points. Research design: A qualitative descriptive (...) study, utilizing an interpretivist paradigm. Participants and research setting: Critical care nurses, working in either intensive care units or emergency departments (N = 11) who were primarily from Northern California hospitals. Individual in-depth ZOOM® session interviews, guided by semi-structured questions, were used to collect data. Interviews lasted between 18 and 59 min, with an average length of 33 min. Session interviews were transcribed and analyzed. Ethical considerations: This study was approved by the researchers’ university Institutional Review Board. Findings: Five main themes emerged: Fear of the Unknown, Adapting to Practice Changes and Challenges, Patient Advocacy and Moral Distress, Isolation and the Depersonalization of Care, and Professionalism and a Call to Duty. Discussion and conclusion: Fear of becoming ill or bringing COVID-19 home to their families was a constant source of anxiety for nurses. There were numerous changes in policy and challenges to standard practice protocols, including most notably shortages in personal protective equipment, which nurses navigated resourcefully. Most nurses interviewed were motivated by a sense of professional duty. The nurses experienced some moral distress in their inability to advocate as they might like for their patients, especially at end of life. Infection control requirements for isolation. (shrink)

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)

Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person’s home. We (...) discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient’s home. (shrink)

Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation (...) to dignity and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes influences whether dignified care is provided, (2) an ethos that is reflected on and appropriated by the caregiver mirrors itself in ethical caring acts and as artful caring in an ethical context and (3) caring culture is assumed to be a more ontological or universal concept than, for example, an ethical context or ethical person-to-person acts. Research design: The methodological approach is hermeneutic. The data consist of 28 interviews with relatives of older persons from Norway, Denmark and Sweden. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the whole research process. Findings: Three patterns were revealed: dignity as at-home-ness, dignity as the little extra and non-dignifying ethical context. Discussion: Caring communion, invitation, at-home-ness and ‘the little extra’ are expressions of ethical contexts and caring acts in a caring culture. A non-caring culture may not consider the dignity of its residents and may be represented by routinized care that values organizational efficiency and instrumentalism rather than an individual’s dignity and self-worth. Conclusion: An ethos must be integrated in both the organization and in the individual caregiver in order to be expressed in caring acts and in an ethical context that supports these caring acts. (shrink)

This study seeks to understand, in the context of intersectional theory, the roles of family members in nursing home care. The unique social locus at which each person sits is the result of the intersection of gender, status, ethnicity and class; it is situational, shifting with the context of every encounter. A content analysis of 15 qualitative interviews with relatives of nursing home residents in Sweden was used to gain a perspective on the relationships between (...) relatives and residents, relatives and the nursing home as an institution, and relatives and the nursing home staff. We sought to understand these relationships in terms of gendered notions of the family and the residents, which are handed down from generation to generation and thus condition who and how relatives should be involved in care, and the ways in which relationships change as care moves from home to nursing home. It requires knowledge and awareness that the nursing home culture is based on intersectional power structures in order for relatives to be involved in nursing home care in alternative and individual ways. (shrink)

Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation (...) to dignity and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes influences whether dignified care is provided, (2) an ethos that is reflected on and appropriated by the caregiver mirrors itself in ethical caring acts and as artful caring in an ethical context and (3) caring culture is assumed to be a more ontological or universal concept than, for example, an ethical context or ethical person-to-person acts. Research design: The methodological approach is hermeneutic. The data consist of 28 interviews with relatives of older persons from Norway, Denmark and Sweden. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the whole research process. Findings: Three patterns were revealed: dignity as at-home-ness, dignity as the little extra and non-dignifying ethical context. Discussion: Caring communion, invitation, at-home-ness and ‘the little extra’ are expressions of ethical contexts and caring acts in a caring culture. A non-caring culture may not consider the dignity of its residents and may be represented by routinized care that values organizational efficiency and instrumentalism rather than an individual’s dignity and self-worth. Conclusion: An ethos must be integrated in both the organization and in the individual caregiver in order to be expressed in caring acts and in an ethical context that supports these caring acts. (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)

Twenty-five long-term care nurses in eight nursing homes in central Kentucky were inter viewed concerning ways in which they might assist elderly residents to preserve and enhance their personal autonomy. Data from the interviews were analysed using grounded theory methodology. Seven specific categories of assisting were discovered and described: personalizing, informing, persuading, shaping instrumental circumstances, considering, mentioning opportunities, and assessing causes of an impaired capacity for decision-making. The ethical implications of these categories of assisting for clinical prac tice (...) are examined. Although nurses recognized the importance of resident autonomy, the majority of them failed consistently to employ the categories of assistance to foster resi dent self-determination and most of them held an inadequate understanding of the con cepts of consent and decisional capacity. To assure confidentiality, pseudonyms are used in the following cases and discussions for all names of nurses, residents and facilities. (shrink)

Nurses often play crucial roles on teams involved in providing care to infants and families in the context of child protection services, making them well‐placed to research topics concerning these groups. Developed by North American legal scholar Martha Fineman in 2008, a contemporary macro‐legal‐political theory with potential to inform studies related to the nexus between healthcare and law is ‘vulnerability theory.’ Conceiving vulnerability as a universal, inevitable, and enduring aspect of the human condition, it contends that the onus is (...) on the State to respond to universal vulnerability by ensuring institutions and structures do not confer unfair advantage or disadvantage. When access to rights is particularly difficult, a ‘targeted group approach’ should be considered as well as consideration of the notion that responses to vulnerability have the potential to increase vulnerability. This paper outlines the background of vulnerability theory, explaining its key tenets and criticisms, before considering how it might be useful to inform studies focused on infants in out of home care. (shrink)

The aim of this study was to explore metaphors for discovering values and norms held by nurses in home-based nursing care. Ten interviews were analysed and interpreted in accordance with a metaphor analytical method. In the analysis, metaphoric linguistic expressions and two entailments emerged, grounded in the conceptual metaphor ‘home-based nursing care is an endless journey’, which were created in a cross-domain mapping between the two conceptual domains of home-based nursing care (...) and travel. The metaphor exposed home-based nursing care as being in constant motion, thereby requiring nurses to adjust to circumstances that demand ethical maturity. The study focuses on the importance of developing further theories supporting nurses’ expressions of their experiences of everyday ethical issues. (shrink)

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on (...) the involvement of family caregivers when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided (...) was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

ZusammenfassungDer nächtliche Konflikt einer Pflegenden zeigt die Gratwanderung zwischen dem Recht des betroffenen Heimbewohners, nicht vorschnell mit Medikamenten ruhig gestellt zu werden, und den legitimen Interessen der Mitbewohner, nicht gravierend im eigenen Wohlbefinden gestört zu werden, bedrückend deutlich. Wer stellt die Angemessenheit der Psychopharmakagabe im Bedarfsfalle fest? Der vorliegende Beitrag diskutiert ethische Probleme im Zusammenhang mit der Psychopharmakagabe, aber auch Alltagsverrichtungen im Altenpflegheim, die oftmals durch Konflikte zwischen den Fürsorgepflichten und Verantwortlichkeiten der Pflegenden für die alten Menschen geprägt sind und (...) ihren Bemühungen, der individuellen Autonomie der Heimbewohnerin bzw. -bewohners gerecht zu werden. Für viele Probleme im Altenpflegeheim bieten sich keine raschen, einfachen Lösungen an. Der Blick auf einen individuellen Menschen und seine Bedürfnisse und Rechte verlangt neben der professionellen Fortbildung eine beständige Auseinandersetzung mit moralischen Handlungsbegründungen. Der offene Austausch im geschützten Raum einer Ethik-Beratung kann die ethische Entscheidungskultur fördern und transparent machen und damit zur Zufriedenheit und zum Wohlergehen aller beitragen. (shrink)

Little is known about older persons’ expectancies (or anticipations) about the possible actions of home-care professionals, although such data have implications for the ethics of home care and home-care policies. From a longitudinal study of older women’s experience of home care, findings are reported concerning their expectancies of professional home-care providers. A descriptive phenomenological method was used to detail the structure of the experience and its context. Data were analyzed from (...) a series of interviews with 13 women aged 82 to 96 years. Among the five key structures of experience were ‘finding that someone has the job of helping me here’ and ‘determining where the helper’s field lies’. Two subsets within a category of expectancies were differentiated: speculations about helpers’ possible actions and expectancies about outcomes of helpers’ actions. As parameters of relational ethics, clients’ speculations and expectancies are appropriate bases for dialogue about older widows’ relationships with home-care professionals and the foci of home-care policies. (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)

‘Client involvement’ has been a mantra within health policies, education curricula and healthcare institutions over many years, yet very little is known about how ‘client involvement’ is practised in home‐care services. The aim of this article is to analyse ‘client involvement’ in practise seen from the positions of healthcare professionals, an elderly person and his relative in a home‐care setting. A sociologically inspired single case study was conducted, consisting of three weeks of observations and interviews. The (...) study has a focus on the relational aspects of home care and the structural, political and administrative frames that rule home‐ care practice. Client involvement is shown within four constructed analytical categories: ‘Structural conditions of providing and receiving home care’; ‘Client involvement inside the home: performing a professional task and living an everyday life’; ‘Client involvement outside the home: liberal business and mutual goal setting’; and ‘Converting a home to a working place: refurnishing a life’. The meaning of involvement is depending on which position it is viewed from. On the basis of this analysis, we raise the question of the extent to which involvement of the client in public home‐care practice remains limited. (shrink)

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end‐of‐life at home. Data were collected from in‐depth interviews (n = (...) 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender‐based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end‐of‐life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost‐efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. (shrink)

The cost-effectiveness of 24-hour care makes it a major source of support for elderly people in need of home-based care in Austria. Language barriers, feelings of isolation when living with chronically ill people and a lack of adequate training and quality control create stressful working conditions for 24-hour caregivers in Austria, who mainly come from Slovakia, Hungary and Romania. The challenges not only affect the 24-hour caregivers themselves but also their clients, relatives and registered care agency (...) nurses in care settings. The aim of the qualitative study was to assess user needs in order to develop an app to improve working conditions and quality assurance in 24-hour home-care. The study consisted of guided interviews, focus group and cultural probes and 45 interviewees. The collected data were analyzed using Kuckartz’s method of content structuring qualitative content analysis. The main results show that 24-hour caregivers predominantly require information about common geriatric diseases and the law on 24-hour care. Additionally, medical emergencies can cause insecurities, which creates high interest in professional emergency management skills. Clients and relatives are especially interested in 24-hour caregivers having better German language skills. Care agencies and registered nurses would particularly welcome electronic care documentation to ensure traceability of the activities and measures taken. The study points to the need for a digital tool that would meet demand for an appropriate assistance system for 24-hour home-care that complies with the AAL requirements of the aligned project. Therefore, the intended software solution meets challenges in 24-hour home-care for 24-hour caregivers, persons in need of care, their relatives and professionals involved in the 24-hour care setting. (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)

The aim of this study was to identify and analyse ethical decision making in the home care of persons with long-term mental illness. A focus was placed on how health care workers interpret and deal with the principle of autonomy in actual situations. Three focus groups involving mental health nurses who were experienced in the home care of persons with chronic mental illness were conducted in order to stimulate an interactive dialogue on this topic. A (...) constant comparative analysis of the transcribed audiotaped sessions identified a central theme that concerned the moral symbolic meaning of ‘home’. This reflected the health care workers’ conflict between their professional role and their moral role, which they perceived as unclear. (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)

The performance of home care globally is significantly impacted by the political reforms in the public and private sectors. This research investigated the Australian contexts of home care quality and the use of “brokerage” during times of change. The research utilised a qualitative post‐structural approach to gather data about home care service provision through conducting semi‐structured interviews of 10 Australian home care business leaders. What emerged in the discourse was how central to (...) everyday practices was the need for business leaders to network and ‘dance a political tango’ to ensure quality in service provision. Illuminated was how the leaders pushed back against governmental and economic structures by using models of brokerage to compensate for economic and staffing deficiencies. This is essential for the ongoing improvement and performance of home care in the Australian social arena of caring for our most vulnerable consumers. (shrink)

Certified nursing assistants (CNAs) provide the majority of direct care to nursing home residents in the United States and, therefore, are keys to ensuring optimal health outcomes for this frail older adult population. These diverse direct care workers, however, are often not recognized for their important contributions to older adult care and are subjected to poor working conditions. It is probable that social‐based discrimination lies at the core of poor treatment toward CNAs. This review (...) uses perspectives from critical social theory to explore the phenomenon of social‐based discrimination toward CNAs that may originate from social order, power, and culture. Understanding manifestations of social‐based discrimination in nursing homes is critical to creating solutions for severe disparity problems among perceived lower‐class workers and subsequently improving resident care delivery. (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)

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: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the (...) process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research. (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 glaring lack of formal and informal caregivers in Germany has not only become apparent in hospitals and nursing homes but also in home care arrangements. One tension is particularly pertinent in such arrangements: a ‘family-oriented’ logic of the long-term care insurance and the individual wishes of those in need of care meet the actual possibilities of family carers. This care gap has been compensated for by 24-hour care workers, so-called ‘live-ins’, from Eastern (...) Europe for some years. This contribution maps the ‘live-ins’ situation comprehensively from an ethical perspective. Based on different constellations regarding the ‘live-ins’ status as a professional nurse or non-professional caregiver, which ethical principles and moral norms are affected by whom and potentially conflict with each other in such home care arrangements at a micro and meso level of care are outlined. Special attention is paid to the tension between self-care and care for others, and to questions of the shared responsibility in and social responsibility of those external services that are involved in home care in addition to the ‘live-in’. In order to uncover, understand and influence the current ethical problems, an ethical framework that considers both the divergent interests of all individuals involved in the home care arrangement and their mutual dependency and vulnerability is needed. (shrink)

Background With an increasing older population, the pressure on home care resources is growing, which makes it important to ensure the maintenance of quality care. It is known that compassion and ethical sensitivity can improve the quality of care, but little is known about care leaders’ perceptions on ethical sensitivity and compassion in home care and how it is associated with staff competence and thus quality of care. Aim The aim of the (...) study was to explore home care leaders’ perceptions of ethical sensitivity and compassion associated with care quality in home care. Research design, participants, and research context A hermeneutical approach with a qualitative explorative design was used. The data consists of texts from 10 in-depth interviews with home care leaders. Content analysis was used as a method. Ethical considerations The study was conducted following the ethical guidelines of the Declaration of Helsinki and the Finnish Advisory Board of Research Ethics. Research ethics permission was applied for from a Research Ethics Board. Findings One overall theme and four subthemes were found. The overall theme was: “Compassion provides deeper meaning and ethical sensitivity provides means for knowing how to act”. Discussion If nurses fail to be sensitive and compassionate with patients, good and high qualitative home care cannot be achieved. Ethical sensitivity and compassion can be seen as resources in home care but the organization and the care leaders need to provide the support for these to develop. Conclusion This study provides an understanding of the meaning of ethical sensitivity and compassion as sources of strength and their link to quality of care in a home care context. Further studies could focus on how to build compassion and ethical sensitivity into home-based care and how to ensure adequate support for healthcare professionals’ compassion and ethical sensitivity. (shrink)

BackgroundIn Palliative Care, family and close people are an essential part of provision of care. They assume highly complex tasks for which they are not prepared, with considerable physical, psychological, social and economic impact. Informal Caregivers often falter in the final stage of life and develop distress, enhancing emotional burden and complicated grief. The lack of available and accessible in-person counselling resources is often reported by ICs. Online resources can promote early access to help and support for patient-IC (...) dyads in palliative care. The primary aim of this research is to co-design, develop and test the feasibility of the Help2Care-PAL mHealth app that addresses the needs of ICs of palliative patients cared for at home. This Digital Health Intervention in palliative care will be used for education, symptom management, communication and decision-making, to enhance Quality of Life of patients and ICs, fostering anticipatory grief and the reach and efficiency of services.MethodsThis study will use an iterative co-design process and convergent mixed-methods design, following the MORECare consensus for developing a complex intervention. Construction of the DHI will follow four main phases: a needs assessment ; design and co-production of mHealth materials and interventions to support ICs; the development of a mHealth app; and usability and feasibility of the mHealth app. The Help2Care-PAL platform seeks to build resources from the perspectives and needs of both family dyads and nursing professionals working in the field of community palliative care. User-centeredness will be ensured by the active participation of patient-IC dyads and professionals of the palliative care community.DiscussionThis mixed-method study will offer new insights on needs and expectations of patient-IC dyads and nurses in community palliative care regarding caregiving preparedness and online health resources. Through the implementation of an adaptive digital tool, we aim to improve access to palliative care family support, which is highly linked with the wellbeing of patients and especially new ICs. (shrink)