Ethical self-efficacy among healthcare professionals caring for people with dementia: a brief pre- and post-report on the CARE intervention.

BACKGROUND: Interventions targeting healthcare professionals' confidence in managing ethical issues in dementia care are limited despite documented positive effects of educational programs on staff knowledge and self-efficacy. However, inconsistencies in the literature regarding the impact of educational programs underscore the need for targeted interventions. The CARE intervention, specifically designed to enhance confidence in ethical decision-making, aims to address this gap. This study evaluates the effectiveness of the CARE intervention in enhancing the ethical self-efficacy of healthcare professionals caring for people with dementia, particularly those with initially low levels of self-efficacy. METHODS: Using a non-experimental pre-post evaluation design, the CARE intervention was administered to healthcare professionals (n = 86), measuring ethical self-efficacy pre-and post-intervention. We hypothesized significant differences in ethical self-efficacy mean scores pre- and post-intervention for all participants, particularly those with low pre-measurement scores, whom we expected to benefit most from the intervention. Statistical analysis included paired t-tests and Wilcoxon tests for the low pre-measurement subgroup analysis. RESULTS: While no significant change was observed in the entire sample, participants with low initial self-efficacy showed a statistically significant improvement post-intervention. CONCLUSIONS: The CARE intervention holds promise in improving ethical self-efficacy among healthcare professionals with initial low confidence levels. Targeted interventions are essential in addressing confidence gaps in managing ethical challenges in dementia care, with implications for professional well-being and quality of care. Further research should explore long-term effects and expand sample size to enhance generalizability and sustainability of findings.

[Words and views on old age, or how ageism undermines the care relationship]. / Mots et regards sur la vieillesse, ou comment l'âgisme mine la relation de soins.

Anxiety about ageing, as well as old age, is rooted in public discourse and has a negative impact on the quality of the relationship with the elderly, particularly in the context of care relationships with more vulnerable seniors. This text proposes a theoretical and empirical reflection on ageism, manifested as much in its hostile as in its compassionate forms.

Nursing vaccine mandates: Ethically justified, an infringement on autonomy, or both?

After almost a year and a half of the COVID-19 pandemic, many healthcare institutions in the United States announced that they would mandate COVID-19 vaccination, with medical and religious exceptions, as a term of employment. The mandates resulted in widely publicized protests from hospital staff, including some nurses, who argued that these medical institutions violated the ethical principle of autonomy. As the world enters the "post-pandemic period," decisions such as these, made during times of crisis, must be reviewed to provide clarity for when the next pandemic occurs. In this paper, we support the argument that such mandates are ethically justifiable. We explore the framework of objections that were brought forward by dissenters of this vaccine mandate. Next, we provide an analysis of conflicting ethical principles present when such mandates were deployed. Utilizing the American Nurses Association's Code of Ethics for Nurses, notably provisions 2, 3, and 6 we argue that it is an ethical duty of the nurse to be vaccinated. Specifically, we turn to provision two, which most explicitly underscores the necessity of vaccination as a function of the nurse's primary commitment to the patient. Next, we highlight the International Council of Nurses Code of Ethics which provides similar guidance internationally. Finally, we examine the applicability of the principles of public health, care ethics, and the nursing role as frameworks to underpin such mandates both for the current and for potential future pandemics, arguing that the nurse's ethical duty to be vaccinated spans these contexts.

Caregivers' perceptions of lying to people with dementia in Denmark: a qualitative study.

OBJECTIVES: This study aims to examine caregivers' perspectives on and justifications for lying when caring for people with dementia. METHOD: The data consisted of interviews and observations of discussions among family and professional caregivers with various educational backgrounds. Thematic analysis was applied to identify key themes related to caregivers' perspectives on lying. RESULTS: The study revealed that lies were frequently employed by caregivers and were seen as effective tools in the caregivers' toolkit. These practices were often labelled 'white lies' and were rationalised based on their potential to enhance the well-being of people with dementia or to facilitate smooth interactions. The potential negative consequences of lying were also acknowledged. In addition, some caregivers suggested that the practice of 'stepping into the person with dementia's reality' might not constitute lying. CONCLUSION: The findings suggest that the caregivers perceived lying to be a legitimate strategy when caring for people with dementia; surprisingly, some did not recognize their practices as constituting acts of lying at all. This finding carries significant clinical relevance, as the varying perceptions of lying underscore the potential need for a consistent approach to deception. Addressing this complexity can lead to more ethical caregiving practices, ultimately enhancing the quality of care provided to people with dementia.

Care-ethical considerations of technology-care-assemblages.

Technology plays a major role in care. Against the background of demographic ageing, the use of assistive technologies to support and relieve carers in their work is becoming more and more important. One sector that is increasingly coming into focus is home care by family caregivers. Here, the use of assistive technologies takes place under specific conditions. The article proposes a care-ethical perspective to understand these conditions. It critically discusses issues of power and participation in the negotiation of care that can be associated with the use of technology and outlines a care-ethical perspective on technocare.

From bare life and necropolitics to a feminist care ethic: ageism in the COVID-19 pandemic and future directions.

This perspective paper begins with discussing how COVID-19 magnified the pre-pandemic 'bare life' conditions which exposed older people's lives to risks and indignities in the health and social care system. Then, by using the concept of Necropolitics, the life and death decisions, based on age as a proxy measure for population health during the pandemic, are discussed. This discussion includes examples of 'exceptional' practices that were implemented in the UK during the first wave, including 'Do Not Resuscitate' orders, unsafe hospital discharges, not transferring to hospitals, and denying access to treatment for older people. It then goes on to renew the call for a feminist care ethic to be central to the ways in which our future health and social care systems are configured. Arguing for the need to politically reframe ageing, health and social care provision towards a radical alternative system that rethinks care relations and addresses inequality.

In constant search of the good: a qualitative study into insiders' perspectives on living well with dementia.

Introduction: The new concept of 'living well with dementia' is currently gaining traction in practice, policy, and research. However, people with dementia and their carers' own understanding of this concept has not received much scholarly attention. This is because empirical studies into living well with dementia are predominantly quantitative; there are only a few qualitative studies on this topic. This study therefore sets out to investigate what living well means for 'insiders' in an everyday context. Methods: To explore insiders' own perspectives on living well with dementia, we conducted interviews and focus group discussions with 21 dementia stakeholders. The study included ten individuals with mild-to-moderate dementia living at home, five family carers who are or have been involved in the care for a person with dementia, and six health and social care professionals. Results: Living well with dementia, for our study participants, revolves around shaping their daily lives according to their values. In this sense, living well with dementia is no different than without. As it involves the values of the person with dementia and those of their social network, living well is both an individual and a collective concern. Having dementia undermines people with dementia's ability to substantiate their values, but it is still possible to live well. As they attempt to shape living well with dementia, respondents encounter tensions within the social network and within the person with dementia. To handle these tensions, they work for mutual attunement by using sensitivity and switching between leading and following in social interactions. Discussion: Living well with dementia in a daily context is a dynamic process in which people with dementia, family carers, and professionals constantly seek the good together. This insight contributes to a better understanding of stakeholders' ongoing, invisible efforts to mutually attune. It may also help bypass dichotomizing approaches to dementia. Finally, it opens up new venues for research into reciprocity in the care collective. The article closes with recommendations to improve dementia care and support in light of these findings.

Who has a meaningful life? A care ethics analysis of selective trait abortion.

Trait Selective Abortions (TSA) have come under critique as a medical practice that presents potential disabled infants as burdens and lacking the potential for meaningful lives. This paper, using the author's background as a disabled person, contends that the philosophy underpinning TSAs reflects liberal society's lack of a theory of needs. The author argues for a care ethics based approach informed by disability analyses to engage with TSAs.

It's very difficult to set the boundaries, it's human nature to want to respond: exploring health professions educators' responses to student mental health difficulties through a positioning theory lens.

By virtue of their teaching role and contact with students, health professions (HP) educators are often the first point of connection for students who are experiencing mental health difficulties. Educators are increasingly expected to include some form of pastoral care in their role. Mental health-related interactions with students may have a negative emotional impact on educators, particularly when roles and expectations are not clearly defined and where boundaries are not managed effectively. Using positioning theory as a lens, this study explored how educators experienced such interactions and how this manifested in positions, storylines, and speech acts. Interviews were conducted with 27 HP educators at a faculty of medicine and health sciences. Reflexive thematic analysis using inductive coding identified themes corresponding to the nearing, weighted, ambivalent, and distancing positions participants adopted in relation to students with mental health difficulties. There was fluidity in and between positions, and more than one position could be occupied simultaneously; participants each moved through different positions in response to different relational situations. Multiple storylines informed these positions, representing how moral- and care-informed responsibility intersected with responsiveness to make certain actions possible or impossible. Normative and personal value narratives were evident in storylines, in many cases underscored by care or justice ethics. The value of positioning theory in facilitating reflective faculty development initiatives for educators engaged in these interactions is discussed.

Bodily contrast experiences in cultivating character for care.

Since 2008, in Flanders, we organize immersion sessions in a simulated context with the aim of stimulating student nurses and health professionals to learn virtuous caring. In this contribution, we first outline the purpose of this experiential learning: the cultivation of moral character. We come to the core of what we mean by moral character for care. We refer to Joan Tronto and Stan van Hooft to claim that caring is central to all aspects of nursing practice and is the basis of its moral quality. We also stipulate that caring involves the integration of action with emotions, motivations, and knowledge. Second, we briefly explain how the immersion sessions in the care ethics lab take place and, in particular, reflect on what it yields in terms of experiences for the participants who take on the role of simulant patients in this experiential learning process. We focus on the significant role contrast experiences play in these experiences. Especially the negative contrast experiences do not wear off easily; care professionals remember even long after the immersion session and continue to carry them with them as a "corporeal built-in alarm." Third, we discuss the role of contrast experiences in cultivating moral character for care. In particular, we explore the role of the body in the kind of knowing it cultivates and, by extension, its role in cultivating virtuous caring. By referring to specific philosophical ideas of Gabriël Marcel, Hans Jonas and Emmanuel Levinas, we try to understand how contrast experiences bring about an integration of virtuous action into knowledge, motivation, and emotion. We conclude that we need more space for contrast experiences in cultivating moral character. More attention should be paid to the role of the body in this learning process.

Truth-telling to the seriously ill child - Nurses' experiences, attitudes, and beliefs.

BACKGROUND: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. METHODS: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. ETHICAL CONSIDERATIONS: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. RESULTS: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. CONCLUSION: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios.

Family involvement in dementia special care units in nursing homes: A qualitative care ethical study into family experiences.

AIM: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto. DESIGN: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing. METHODS: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020. Forty-two interviews were conducted, based on a semi-structured open-ended design. A thematic narrative approach combined with the five phases of care as defined by Tronto was used to analyse the empirical data. Subsequently, Tronto's identified ethical qualities were used to identify the moral dimension of these empirical findings. RESULTS: We found that in the care process (1) family can find it difficult to recognize their loved one's care needs; (2) both family and staff are reluctant to discuss the allocation of responsibilities with each other; (3) family sometimes feels insecure when it comes to connecting with their loved one; (4) family is often reluctant to provide feedback to staff when they are critical about the care that has been given; and (5) family is generally mild in judging staff, due to staff shortages. The care ethical interpretation of these findings showed that the moral qualities of attentiveness, responsibility, competence, responsiveness, and solidarity are under pressure to a certain extent. CONCLUSION: Family experiences moral distress during the care process, which hinders family involvement in nursing homes for people with dementia. IMPACT: Nursing home staff can look for and pilot strategies focused on supporting families to act more in accordance with the moral qualities that are under pressure. This can improve family involvement in practice. PATIENT OR PUBLIC CONTRIBUTION: No Patient/Public Contribution. IMPLICATIONS FOR PRACTICE/POLICY: Nursing home staff paying more attention to families' emotional struggles related to the decline of their loved one, could help families to be more attentive to noticing true care needs of the resident. Both family and nursing home staff should take more often initiatives to evaluate the division of care responsibilities with each other. Nursing home staff should help family connect with their loved one during their visits if they experience difficulties in doing so. Nursing home staff taking more often initiatives to contact family and ask them how they perceive the care for their loved one, can positively affect the responsiveness of both family and staff. It would be helpful if nursing home management could ensure the presence of sufficient and qualified staff so that the first four phases of the care process are not hindered by the lack of staff.

Accompaniment of minors during health care procedures.

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents. We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans. The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.

Perspectives on the role of the nurse ethicist.

This paper offers four contrasting perspectives on the role of the nurse ethicist from authors based in different areas of world, with different professional backgrounds and at different career stages. Each author raises questions about how to understand the role of the nurse ethicist. The first author reflects upon their career, the scope and purpose of their work, ultimately arguing that the distinction between 'nurse ethicist' and 'clinical ethicist' is largely irrelevant. The second author describes the impact and value that a nurse in an ethics role plays, highlighting the 'tacit knowledge' and 'lived experience' they bring to clinical ethics consultation. However, the second author also warns that the 'nurse ethicist' must be cautious in their approach to avoid being viewed as a resource only for nurses. The third author questions the introduction of additional professional distinctions such as 'nurse ethicist' on the basis that distinctions threaten the creation of egalitarian healthcare systems, while also acknowledging that clinical ethicists ought not strive for objective attachment in their work. In direct contrast, the final author suggests that the nurse ethicist can play a pivotal role in highlighting and addressing ethical challenges that are specific to nurses. These four short pieces raise questions and point to concepts that will be expanded upon and debated throughout this special issue of Nursing Ethics.

Living in an 'ordinary' neighborhood? A care-ethical exploration of the experiences of young adults with mild intellectual disabilities.

Care ethics considers the moral good as arising within practices and in people's experiences in these practices. This contribution applies a care-ethical approach to inquire into the effects of a major change in the social domain policy in The Netherlands. The new policy is based upon the expectation that young adults with Mild Intellectual Disabilities (MID) become 'active citizens, participating in their neighborhood', with the support of care organizations and local municipalities. Accordingly, care responsibilities were transferred to the local level (municipalities). On this level, however, basic insights were lacking concerning the needs and wishes of the young adults with Mild Intellectual Disabilities, and concerning the possibilities for local collaboration. Research was performed by taking Joan Tronto's definition of care as a starting point and applying a method adequate to capture young adults' experiences in one municipality. We conclude that this neighborhood is not an environment wherein they can participate. Points of interestThis article offers new insight into the effects of a major change in long-term care policy in the Netherlands that emphasizes participation.Care ethics focusses on practices, in which more than two people are involved, that help meet needs of care (or fail in this respect).The article presents an inquiry into the experiences and needs of six participants living in a Dutch facility where youths and young adults with Mild Intellectual Disability are supported to participate in society, as expressed by themselves in photos and interviews and as observed through the method of shadowing.The results of this inquiry are three aerial photos that show how the participants live in supporting networks with gaps, underscoring their experiences of being displaced and feeling unacknowledged in the vicinity of their home.Different organizations directed at care for young adults with Mild Intellectual Disability can learn from the care needs that result from this way of organizing care.

Acompañamiento a los menores durante los procedimientos asistenciales / Accompaniment of minors during health care procedures

En la práctica clínica no es infrecuente observar situaciones en las cuales se invita a los progenitores y la familia a dejar a los menores en soledad junto al equipo asistencial en estancias repletas de tecnología durante la realización de procedimientos, dando lugar en ocasiones a conflictos, pero sobre todo con consecuencias emocionales en los niños o adolescentes.Se ha realizado una revisión narrativa de la literatura mediante búsqueda bibliográfica en la biblioteca virtual del sistema sanitario público de Andalucía, siendo los criterios de inclusión utilizados, estudios que conciernen a las experiencias de profesionales sanitarios y familiares sobre el acompañamiento de la población pediátrica en los procedimientos asistenciales. El resultado de la búsqueda se limitó a trabajos en humanos en español e inglés.Esta revisión pone de manifiesto la necesidad de humanizar la asistencia sanitaria para mejorar la calidad de la atención. Se justifica la necesidad de acompañamiento de los menores, a través de trabajos que han analizado los factores que intervienen en la permanencia de estas conductas y actitudes tanto por profesionales como padres. Se recomienda la necesidad de políticas institucionales y figuras mediadoras que recojan las declaraciones de algunas sociedades nacionales e internacionales teniendo en cuenta aspectos legales, pero sobre todo los valores en juego desde una ética del cuidado y búsqueda del interés superior del menor.(AU)

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents.We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans.The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.(AU)

Ethical conflicts experienced by community nurses: A qualitative study.

BACKGROUND: Despite news reports of morally distressing situations resulting from complex and demanding community-care delivery in Canada, there has been little research on the topic of ethical conflicts experienced by community-based health care professionals. RESEARCH AIM: To identify ethical conflicts experienced by community nurses. RESEARCH DESIGN: Data were collected using semi-structured interviews and then relevant text was extracted and condensed using qualitative content analysis. This research was part of a larger grounded theory project examining how community nurses manage ethical conflict. RESEARCH CONTEXT AND PARTICIPANTS: Community nurses, including 13 public health nurses and 11 home care nurses from two Canadian provinces, were interviewed. ETHICAL CONSIDERATIONS: Study approval was granted by the Health Research Ethics Authority of Newfoundland and Labrador and by provincial health authorities. FINDINGS: Seven ethical conflicts were identified and assigned to one of two groups. In the grouping categorized as challenges with obligations or risks, the ethical conflicts were: (1) screening for child developmental issues knowing there is a lack of timely early intervention services; (2) encountering inequities in the health care system; (3) not fulfilling principles, goals, and initiatives of primary and secondary prevention; and (4) feeling powerless to advocate for clients. The remaining ethical conflicts were categorized as challenges with process, risks, and consequences, and were: (5) jeopardizing therapeutic relationships while reporting signs of a child at risk; (6) managing confidentiality when neighbors are clients; and (7) supporting client autonomy and decision-making but uncertain of the consequences. CONCLUSIONS: Research investigation will continue to be important to raise awareness and mobilize ethics supports as health care services are steadily shifted from institutional to community settings. Moreover, with heightened potential for communicable disease outbreaks across international borders from global warming, community nurses around the world will continue to be required to address ethically-difficult care situations with competence and compassion.

A care ethics approach to a reduced ability to eat.

Patients with advanced cancer often experience a reduced ability to eat, which may result in tensions between patients and family members. Often with advanced cancer diagnoses, patients' appetites decline markedly, while family members focus on nutritional intake with the hope that this will postpone death. This hope might cause tensions between the patient and family; the family may expect healthcare professionals to encourage the patient to eat more, whereas the patient needs to be supported in their reduced ability to eat. When these tensions arise, healthcare professionals can experience challenges in providing good palliative care. To address these challenges in the provision of palliative care, healthcare professionals may adopt a care ethics approach. Similar to palliative care's focus on patient and family members' relationships, a care ethics approach emphasizes interdependency and social relationships. Using Joan Tronto's care ethics approach, we conducted a normative analysis of what caring for patients with reduced ability to eat and their family members should look like. Tronto's approach includes five phases of care: caring about, taking care of, care giving, care-receiving, and caring with. Based on our analysis and empirical studies on patients with advanced cancer and family members, concerns with their lack of appetite, we assert that healthcare professionals must be mindful of the potential of tensions related to appetite and be adept in dealing with these tensions. We urge that education is needed for healthcare professionals regarding the psychosocial impact of reduced ability to eat on both patients and family members and interprofessional collaboration is of the essence.

Two cases of nursing older nursing home residents during COVID-19.

INTRODUCTION: Two ethical challenges of nursing home nurses during the COVID-19 pandemic in Sweden are discussed in this paper. BACKGROUND: Historically, the nurse's primary concern is for the person who is ill, which is the core of nurses' moral responsibility and identity. In Sweden, person-centered care is generally deemed important in nursing older nursing home residents. OBJECTIVE: To chart moral responsibilities of nursing home nurses in two cases involving older residents during the COVID-19 pandemic in Sweden. METHODS: We used Margaret Urban Walker's framework for moral responsibilities and the International Council of Nurses (ICN) code of ethics for nurses (2021) for our normative analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given that participation was entirely voluntary and possible to cancel at any time before the work was published. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to this research project (Dnr. 2020-05649). FINDINGS: Case #1: a palliative older nursing home resident who was coercively tested for COVID-19, and case #2: a COVID-19-infected resident with dementia who was isolated using sedation. The decision that was finally made in the respective case was analyzed in the light of either consequentialist/utilitarian or non-consequentialist/deontological reasons. DISCUSSION: Empowerment of nurses as moral agents is required for the application of practical wisdom in the balancing of different care relationships (responsibilities), moral identities (professional virtues), and competing moral values. This requires resources and opens possibilities for profound ethical reflection in nursing education and at work. CONCLUSION: During the COVID-19 pandemic, the moral and professional responsibility of nursing home nurses to deliver person-centered care was sometimes problematically abandoned in favor of a more utilitarian manner of ethical decision-making.