Mysticism is condemned as often as it is praised. Much of the condemnation comes from mysticism’s apparent disregard of morality and ethics. For mystics, the experience of “union” transcends all moral concern. In this careful examination of the works of such practitioners or examiners of mysticism as Paul Tillich, Thomas Merton, Evelyn Underhill, and Martin Buber, the author posits a spectrum of uneasy relationships between mysticism and morality. Horne explores the polarities of apophatic (imageless) and imaginative mysticism, the contemplative and (...) the active life, and morality and amorality. He stresses the importance of the distinction between “proper-name” (entirely personal) morality and “social” morality, for the history of Christian mysticism is a mix of minimal moral concern, proper-name morality, and social morality. The volume will be of interest to students of religious experience, ethics, and the recent history of mysticism. Carefully reasoned and documented, the argument is couched in clear prose, easily accessible to lay readers as well as to scholars. (shrink)

p166 In February 1965, the United States escalated the war against South Vietnam radically, and also, on the side, began regular bombing of the North at a much lower level. That was a big public issue in the United States: Should we bomb North Vietnam? The bombing of the South was ignored. The same shows up in the internal planning, for which we now have an extremely rich record, not only from the Pentagon Papers, but from tons of declassified documents (...) that have been released in the last couple of years. It turns out again, one of the very few interesting revelations of the Pentagon Papers that there was no planning for the escalated bombing of the South. There was very meticulous planning about the bombing of the North carefully calibrated, when should we do it, and a lot of agonizing about it. The bombing of the South at triple the scale of the North is barely discussed. There are a few casual decisions here and there. The same shows up in McNamara's recent memoirs. He discusses at great length the bombing of the North. The bombing of the South he literally doesn't mention. He mentions what he did on January 21, 1965, a really important day: there was a big discussion about whether to bomb North Vietnam. He doesn't mention what we know from other documents, that on that same day, he authorized for the first time the use of jet planes to escalate the bombing of South Vietnam over and above the massive bombing that had been going on for years that's not even mentioned. (shrink)

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good (...) care involves attending to the needs of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. (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)

Because of the gradual aging of the population, hospital facilities for socio-sanitary care of the elderly are quite scarce relative to the very high number of elderly people present in the country. This has pushed a high number of families to privately hire home-care workers. The scientific literature gives a picture of the psycho-physical risks that this type of profession is exposed to; however, there is still a need for a more systemic reflection with regard to representations (...) about their role and competences. The aim of the present study is to outline the representations of the role and the skills it requires from home-care workers’ point of view. We reconstructed how home-care workers perceive and define the profession, and understand the necessary skills required from their point of view. Our results show that the professional profile of home-care workers still remains poorly defined and that professionals themselves struggle to find value and recognition, and to articulate what the skill set they develop is formed of. (shrink)

This commentary responds to “Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice,” by Coleman Solis and colleagues, in the May‐June 2023 issue of the Hastings Center Report. More specifically, we respond to the authors’ call for “inquiry into the nature, value, and practice” of home care. We argue that the most urgently needed normative reset for thinking about care work is the replacement of dominant individualistic thinking with systemic thinking. (...) Deepening a focus on the social, economic, and historical forces that shape the state of contemporary care work will help bioethicists to argue more effectively for improvements to working conditions. In turn, better working conditions will ease the oppositional stance between caregivers and receivers that has been set up by the current system, enabling all parties involved to better pursue the feminist ethical ideal of care. (shrink)

Unionization of home care has depended on the state location of the occupation. Government social policies and funding created home care, shaping the structure of the industry and the conditions of work. The welfare nexus, linking old age, disability, health, and welfare policies, however, also transformed care hidden in the home into a public service. Through case studies of California and Oregon, leaders in deinstitutionalizing care of the elderly and disabled, we explore the (...) social struggles that forced the state to recognize its invisible workforce. The home location of personal attendants and other health aides has entailed not only organizing challenges but policy innovation as well. Using the welfare state location of the labor, workers allied with consumers to develop the public authority as a newstructure of representation. The history of home care shows that social welfare and health policy have long been entangled with labor policy. (shrink)

Nel Noddings, one of the central figures in the contemporary discussion of ethics and moral education, argues that caring--a way of life learned at home--can be extended into a theory that guides social policy. Tackling issues such as capital punishment, drug treatment, homelessness, mental illness, and abortion, Noddings inverts traditional philosophical priorities to show how an ethic of care can have profound and compelling implications for social and political thought. Instead of beginning with an ideal state and then (...) describing a role for home and family, this book starts with an ideal home and asks how what is learned there may be extended to the larger social domain. Noddings examines the tension between freedom and equality that characterized liberal thought in the twentieth century and finds that--for all its strengths--liberalism is still inadequate as social policy. She suggests instead that an attitude of attentive love in the home induces a corresponding responsiveness that can serve as a foundation for social policy. With her characteristic sensitivity to the individual and to the vulnerable in society, the author concludes that any corrective practice that does more harm than the behavior it is aimed at correcting should be abandoned. This suggests an end to the disastrous war on drugs. In addition, Noddings states that the caring professions that deal with the homeless should be guided by flexible policies that allow practitioners to respond adequately to the needs of very different clients. She recommends that the school curriculum should include serious preparation for home life as well as for professional and civic life. Emphasizing the importance of improving life in everyday homes and the possible role social policy might play in this improvement, _Starting at Home_ highlights the inextricable link between the development of care in individual lives and any discussion of moral life and social policy. (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)

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)

Nel Noddings, one of the central figures in the contemporary discussion of ethics and moral education, argues that caring--a way of life learned at home--can be extended into a theory that guides social policy. Tackling issues such as capital punishment, drug treatment, homelessness, mental illness, and abortion, Noddings inverts traditional philosophical priorities to show how an ethic of care can have profound and compelling implications for social and political thought. Instead of beginning with an ideal state and then (...) describing a role for home and family, this book starts with an ideal home and asks how what is learned there may be extended to the larger social domain. Noddings examines the tension between freedom and equality that characterized liberal thought in the twentieth century and finds that--for all its strengths--liberalism is still inadequate as social policy. She suggests instead that an attitude of attentive love in the home induces a corresponding responsiveness that can serve as a foundation for social policy. With her characteristic sensitivity to the individual and to the vulnerable in society, the author concludes that any corrective practice that does more harm than the behavior it is aimed at correcting should be abandoned. This suggests an end to the disastrous war on drugs. In addition, Noddings states that the caring professions that deal with the homeless should be guided by flexible policies that allow practitioners to respond adequately to the needs of very different clients. She recommends that the school curriculum should include serious preparation for home life as well as for professional and civic life. Emphasizing the importance of improving life in everyday homes and the possible role social policy might play in this improvement, _Starting at Home_ highlights the inextricable link between the development of care in individual lives and any discussion of moral life and social policy. (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 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)

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)

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)

In this paper, I argue that addressing the medical needs of older persons warrants expanding the array of insured services as described by the Canada Health Act to include home care. The growing importance of chronic care supports my call for federally regulated home care services as the nature of disease management has changed significantly in the last decades. In addition, if the values of equity, fairness and solidarity, which are the keystone values of the (...) CHA, are to be upheld within the current social and demographic context, then Canada’s health care system should adapt accordingly. I focus my argument on the services provided to older persons for two main reasons. First, the changing nature of disease management is best seen in this population. If it is to be successfully argued that the transformations in medicine warrant an expansion of insured services covered by the CHA, it will be best illustrated by looking at the needs of older persons. Second, with the demographic shift looming large in the policy agenda, an exploration of this issue is not only crucial but timely. (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)

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)

Aging populations have become a major concern in the developed world and are expected to require novel care strategies. Public policies, health-care regimes and technology developers alike stress the need for a more individualized care to meet the increased demand for care services in response to demographic change. Increasingly, care services are offered to individuals with diseases and or disabilities in their homes by means of Personalized Health-Monitoring (PHM) technologies. PHM-based home care is (...) typically portrayed as the key to a cost-effective future care that better can accommodate the needs of an aging population and promote care recipients’ independence. In light of the emerging technology-based home care, this article sets forth to investigate the significance and implications of a strong emphasis on independence in relation to this novel care form. Notions of independence as used by care planners, care providers and technology developers are examined in relation to ICT-based home care and the reasonableness of independence as an aim for future health-care is critically discussed. In conclusion, the need for a shift from a strong emphasis on independence to a right to healthy dependence is advocated. (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)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children (...) are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (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)

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 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)

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)

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 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)

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)

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)

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)

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)

Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the (...) perceived need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay ?citizen-carers?. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship. (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 American system of long‐term care is disorganized and expensive. Obtaining care for a loved one is a confusing and difficult journey. When it comes to paying for that care, a bit over half who receive care are supported at least partially by insurance, and those with no insurance pay entirely out of pocket. The costs are exorbitant. What makes the system function is reliance on unpaid family members, who care for their loved ones often (...) at considerable cost to themselves.As the baby boom generation ages, this creaky system will become increasingly dysfunctional, and a likely shortage of caregivers will be at the heart of the difficulties. The supply of unpaid family caregivers will become limited, as the ratio of people in the category of ages forty‐five to sixty‐four compared to those who are eighty and older shrinks from just above seven to one in 2010 to just above four to one in 2030. Paid caregivers will be needed to take up the slack, yet they are poorly paid, work under very difficult conditions, and receive little respect from the health care system. In this essay, I discuss the circumstances facing these paid home‐care workers and a possible path forward, illustrating the current problems by drawing on interviews I conducted for a book‐length study published in 2017. (shrink)

Community care for frail elderly people rests heavily on the work of low-status, paraprofessional home care workers. Home care workers describe their work as highly personalized caring labor that often seeps out of its formal boundaries into informal, unpaid activities. Although these activities are valued by workers, their supervisors, elderly clients, and family members, they represent uncompensated and exploited labor. Cost-cutting trends in home care management that seek to depersonalize home care (...) labor are likely to increase its exploitative potential for paid care workers and, simultaneously, to disadvantage and jeopardize elderly home care clients and their unpaid family caregivers. (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)