An increasingly ageing society together with concerns about sustainability of old-age benefits call for reforming the care structure of many western welfare states. However, finding an acceptable balance between the formal care provided by institutions and informal care provided by family members is a delicate policy choice with profound ethical implications. In this respect, literature on intergenerational familial relationships can offer insights to inform policymaking in this field and help resolve the ethical concerns that excessive reliance (...) on informal caregiving might entail. In this contribution, we start by presenting – with Switzerland as a case study – the challenges of the current care structure and illustrate some of the ethical issues that reshaping the balance between formal and informal care raises. We then review and analyse available theoretical literature on intergenerational familial relationships and present three dimensions that underpin such relationships: ethical, theoretical and practical. Based on our analysis, we provide two recommendations to inform policymaking on how to support care needs of the elderly and set an ethically acceptable balance between formal and informal care when familial generations are involved. (shrink)

STAJDUHAR K, FUNK L, JAKOBSSON E and ÖHLÉN J. Nursing Inquiry 2010; 17: 221–230A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care-givingTraditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial (...) for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers. (shrink)

Background: Frequent exposure to ethical conflict and a perceived lack of organizational support to address ethical conflict may negatively influence nursing family care in the intensive care unit. Research aims: The specific aims of this study were to determine: (1) if intensive care unit climate of care variables (ethical conflict, organizational resources for ethical conflict, and nurse burnout) were predictive of nursing family care and family wellbeing and (2) direct and indirect effects (...) of the climate of care on the quality of nursing family care and family wellbeing. Research design: A cross-sectional, correlational design was used. Participants and research context: Convenience sample of 111 nurses and 44 family members from five intensive care units at a Midwest hospital in the United States. Instruments: The Ethical Conflict Questionnaire-Critical Care Version, Maslach Burnout Inventory-Human Services Survey and Hospital Ethical Climate Scale were used to measure climate of care. The Family-Centered Care-Adult Version and Nurse Provided Family Social Support Scale were family measures of the quality of nursing family care. The Family Wellbeing Index was used to measure family wellbeing. Data analysis: Hierarchical regression and mediation analysis were used to answer the study aims. Ethical considerations: The study was approved by the Institutional Review Board at the study site. Findings: In separate regression models, organizational resources for ethical conflict (β =.401, p =.006) and depersonalization (β = −.511, p =.006), a component of burnout, were significant predictors of family-centered care. In simple mediation analysis the relationship between organizational resources for ethical conflict and family-centered care was mediated by depersonalization (β =.341, 95% confidence interval (.015,.707)). Discussion: Inadequate organizational resources and depersonalization may be related to family care delivery, and present obstacles to family-centered care in the intensive care unit. Conclusion: Further research to explicate the relationships among organizational resources, ethical conflict, burnout, and family-centered care is needed to guide the development of effective interventions that enhance the quality of nursing family care in the intensive care unit. (shrink)

This article contributes to carework scholarship by examining the nexus of gender, class, and race in long-term care facilities. We draw out a family ideology at work that promotes good care of residents and thus benefits nursing homes. We also found that careworkers value fictive kin relationships with residents, yet we uncover how the family model may be used to exploit these low-income careworkers. Reflecting a subordinate and racialized version of being “part of the family,” (...) we call for an ethic of reciprocity and for concrete change toward valuing equally the humanity of those who need and those who give care. (shrink)

Recent research has found diat family caregivers do not discuss their caregiving in terms of tasks but instead describe their care as shaped by concerns, commitments and goals. The purpose of this paper is to challenge the ways in which nurses approach die family caregiving process and to explore possibilities for evolving nursing knowledge by questioning existing practice in die light of developing insight into die ways in which being a family caregiver is meaningful. A critique (...) of die philosophical orientations of rationalism and empiricism provides a platform to discuss the merits of a Heideggerian phe-nomenological approach in assisting nurses to better understand family caring experience. Such critique serves to support the notion of displacing die traditional scientific view as die prime means of disclosing trudi, acknowledging alternative ways of knowing. (shrink)

Using data on submitted and published manuscripts in Feminist Economics from 1995 to 2019, we examine differences in method and scope used by authors residing in the Global North and Global South. We specifically focus on research methods, intersectional analyses, region of analysis, and co-authorship status. Further, using logistic regression models, we examine the relationship between authors’ location and use of research methods. We find authors in the Global South are more likely to engage in empirical and mixed-methods papers compared (...) to Global North authors in our sample. Moreover, a greater share of Global South authors engage in intersectional analysis and exhibit geographical focus on developing countries. Drawing insights from the Feminist Economics manuscripts data, we argue that encouraging Global South research can contribute to the goals of the field of feminist economics – aimed at inclusivity, diversity of standpoints, and plurality in research methods, thereby improving overall economic research. (shrink)

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences (...) and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia. (shrink)

The ICN 1973 Code for nurses states that 'Nurses render health services to the individual, the family and the community...'. It goes on to say that, 'The nurse's primary respon sibility is to those people who require nursing care.' Thus, our primary responsibility to provide comprehensive care to patients and their families is a concept we teach and preach, but can it be achieved? In this paper, I would like to present the ethical dilemmas expressed by nurses (...) as inherent in the care of patients and their families, address the difficulties in treating patients and their families in the light of these dilemmas and propose a different approach to dealing with the problem. (shrink)

This paper examines moral dilemmas faced by family caregivers of older adults who employ live-in migrant care workers. Being both a family caregiver as well as an employer of a live-in migrant care worker often puts family members at a crossroad, where moral decisions must be made. Lacking a formal role, family members do not have a professional code of ethics or other clear rules that can guide their actions, and their choices are rooted (...) in cultural, community, familial, and personal values. This paper discusses moral dilemmas that result from family caregivers’ dual commitment, to the wellbeing of their older sick relative who is the recipient of care, and to the wellbeing of the live-in care worker whom they employ. The paper uses relational ethics as a theoretical framework to discuss three cases that involve complex moral decision making in real life. (shrink)

The spread of liberal individualism to the family is often portrayed as deeply inimical to the welfare of children and young people. In this view, the family is the bastion of the private and the antithesis of the contractual, rights-oriented model that underpins public life. This chapter examines that proposition critically.

Intensive care nursing is prone to episodic anxiety linked to patients’ immediate needs for treatment. Balancing biomedical interventions with compassionate patient‐centred nursing can be particularly anxiety provoking. These patterns of anxiety may impact compassion and patient‐centred nursing. The aim of this paper is to discuss the application of Bowen Family Systems Theory to intensive care nursing, mapping a framework to support critical care nurses’ well‐being and, consequently, the quality of care they provide. This article is (...) founded on research, theoretical papers and texts focused on Bowen Family Systems Theory (BFST), and findings from a constructivist study on patient‐centred nursing and compassion in the intensive care unit. The goal of Bowen Family Systems Theory is to empower individuals, decreasing blame and reactivity. Bowen Family Systems Theory can be applied to the sometimes intimate relationships that develop in this environment, aiding understanding of nurses’ experience of compassion satisfaction and fatigue. Where organizational factors and management styles fall short in supporting critical care nurses to meet expectations, BFST can offer a perspective on the processes that occur within the intensive care unit, impacting nurse well‐being and quality of care. This paper makes plain the importance of understanding the anxiety that occurs within the intensive care unit as a system, so that individuals, such as critical care nurses, can be supported appropriately to ensure nurse well‐being and quality care. (shrink)

This paper asks whether adult children have aduty of justice to act as caregivers for theirfrail, elderly parents. I begin (Sections I.and II.) by locating the historical reasons whyrelationships within families were not thoughtto raise issues of justice. I argue that thesereasons are misguided. The paper next presentsspecific examples showing the relevance ofjustice to family relationships. I point outthat in the United States today, the burden ofcaregiving for dependent parents fallsdisproportionately on women (Sections III. andIV.). The paper goes on (...) to use Rawls''theoretical tool of the veil of ignorance toargue that caring for parents should not belinked to a person''s sex and more generally,that there is no duty of justice to assume therole of caregiver for dependent parents(Sections V.). Although justice does notprovide the moral foundations for parent care,I show that it nonetheless places importantlimits on the instinct to care. I concludethat the voice of justice should be audible,and is intrinsically present, withinfamilies. (shrink)

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect (...) the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

The paediatric intensive care unit (PICU) is a high-stress environment for parents, families and health care professionals (HCPs) alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal (...) clinical care and compromise patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care (FCC) central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit. (shrink)

Developing a care plan in a critical care context can be challenging when the therapeutic alliance between clinicians and families is compromised by anger. When these cases occur, clinicians often turn to clinical ethics consultants to assist them with repairing this alliance before further damage can occur. This paper describes five different reasons family members may feel and express anger and offers concrete strategies for clinical ethics consultants to use when working with angry families acting as surrogate (...) decision makers for critical care patients. We reviewed records of consults using thematic analysis between January 2015 and June 2016. Each case was coded to identify whether the case involved a negative encounter with an angry family. In our review, we selected 11 cases with at least one of the following concerns or reasons for anger: perceived or actual medical error, concerns about the medical team’s competence, miscommunication, perceived conflict of interest or commitment, or loss of control. To successfully implement these strategies, clinical ethics consultants, members of the medical team, and family members should share responsibility for creating a mutually respectful relationship. (shrink)

Inequitable access to health care, social inequities, and racist and discriminatory care has resulted in the trend toward poorer health outcomes for Indigenous infants and their families when compared to non‐Indigenous families in Canada. How Indigenous mothers experience care during an admission of their infant to the Neonatal Intensive Care Unit has implications for future health‐seeking behaviors which may influence infant health outcomes. Nurses are well positioned to promote positive health care interactions and improve health (...) outcomes by effectively meeting the needs of Indigenous families. This qualitative study was guided by interpretive description and the Two‐Eyed Seeing framework and aimed to understand how Indigenous mothers experience accessing and using the health care system for their infants. Data were collected by way of interviews and a discussion group with self‐identifying Indigenous mothers of infants less than two years of age living in Hamilton, Ontario, Canada. Data underwent thematic analysis, identifying nursing strategies to support positive health care interactions and promote the health and wellness of Indigenous infants and their families. Building relationships, providing holistic care, and taking a trauma‐informed approach to the involvement of child protection services are three key strategies that nurses can use to positively impact health care experiences for Indigenous families. (shrink)

According to the literature, the family is now considered to be the most important resource for the care and support of a sick family member. Families are being increasingly invited and trained to play a utilitarian role, not just as family caregivers, but as healthcare agents. Healthcare institutions, based on neoliberal health policies, are encouraging them to perform increasingly complex and professionalized tasks. The burden associated with this expanded healthcare function, however, is significant (fatigue, emotional distress (...) and exhaustion). The aim of this article was to present French sociologist Jacques Donzelot's theoretical perspective on governing through the family. According to Donzelot, such a government is exercised through various power techniques, including the instrumentalization of the family role and the transfer to families of the responsibility for health care. This author describes how healthcare institutions call on the family to perform hospital and biomedical practices within the home. A spin‐off of neoliberalism, the practices of governing through families specifically target women, who are considered to be the pillar of the family. Donzelot's perspective is very relevant to nursing, but is still rarely mobilized in the discipline. His critical perspective allows for a re‐reading of relations of power and mechanisms of surveillance and control of families, issues that are often overlooked in nursing research. (shrink)

Background When a patient commits suicide while hospitalized in the psychiatric ward, the mental healthcare professionals (MHCPs) who have had the patient in their care encounter the family members immediately following the suicide. Professionals who encounter the bereaved in this first critical phase may have a significant impact on the grieving process. By providing ethically responsible and professionally competent care, they have the opportunity to influence what can alleviate and reduce suffering and promote health in a longer (...) perspective. Aim The aim of this study is to investigate MHCPs’ experiences in the encounter with family members who has been bereaved by suicide. Methods Data material consists of text from in-depth interviews with six MHCPs belonging to a total of five different psychiatric units in two hospitals. The findings have emerged through analysis using a hermeneutical approach based on Gadamer’s philosophical hermeneutics. Ethical considerations The study was approved by the Ombudsman for Privacy of the Norwegian Social Science Data Services and is based on informed consent and confidentiality. Findings Three themes emerged: Confirming the suffering. Creating encounter through dialogue. Providing consolation and reconciliation. Findings illuminate how MHCPs understand their responsibilities and how they act in the encounter with the bereaved following suicide. Conclusion The participants appear to be led by the responsibility that grows through witnessing the suffering of the bereaved. Encountering the family member’s aggression and threats against staff members is an ethical challenge to the professional’s ability to confirm the bereaved, create dialogue and provide consolation and reconciliation at the start of their grieving process. MHCPs need to be aware of the different reactions and needs of family members following suicide. More research is needed about how to provide sensitive and flexible care in ways that can be perceived as helpful for those left behind. (shrink)

In industrialized democracies, contractionist social welfare policies have transformed healthcare systems. This has led to reallocations of long‐term care work that have perpetuated gender inequities. The appropriated work of female family caregivers substitutes for paid nursing work, and the household is the primary site for long‐term care delivery. In this article, central premises of critical social theory are used to analyse current long‐term care policy and to explicate how research facilitated the development of mixed economies of (...) care. Problematic consequences of home caregiving are revealed through a depiction of contemporary Canadian families, a critique of the related empirical research literature, and a discussion of the assumptions that underlie long‐term care policies. The article concludes with suggestions which nurse researchers could use to contribute to the reformulation of policies to render them just and equitable. (shrink)

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person’s worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family’s collective Indian Hindu worldview (...) and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses’ well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society’s views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents’ right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm. (shrink)

Mary Ann Meeker’s article admirably reminds readers that family members are involved in—or “responsively manage”—the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There’s reason to be worried, however, that one explicit aim of the article—to ease the standing anxieties (...) that many clinicians and ethicists have about the reliability of family members as proxy decision makers—will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients’ interests and the actions of professional providers.To determine whether and when such alterations are something to be concerned about, we’ll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients’ interests above those of non-patients—as Meeker’s own results suggest—any strict allegiance to such a framework may be more notional than normative—as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that. (shrink)

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the (...) same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia : ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. (shrink)

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system (...) and how they interrelate and influence each other. (shrink)

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members’ weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with (...) constrained power to explicitly protest or make care‐related choices. Underpinning people’s weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings. (shrink)

The purpose of this prospective study was to develop a grounded theory explaining the process that family decision makers use to make care decisions with or for a family member with advanced cancer. Adult surrogate decision makers were recruited for multiple interviews over the patient’s care trajectory: 40 surrogates provided 80 semi-structured interviews. Analysis of these narratives revealed a process of responsive care management that is inclusive of, but not limited to, decision-making roles. Monitoring, buffering, (...) and taking over comprise the three phases of the process. Decision making was embedded within the family member’s broader relational and care responsibilities. (shrink)

This article reveals the outcome of a study on the perceptions of elders, family members, and healthcare professionals and administration providing care in a range of different long-term care facilities in Hong Kong with primary focus on the concepts of autonomy and dignity of elders, quality and location of care, decision making, and financing of long term care. It was found that aging in place and family care were considered the best approaches to (...) long term care insofar as procuring and balancing the values of dignity, autonomy, family integrity and social sustainability were concerned. An elder having the final say was generally accepted. The results also initiated the importance of sharing of financial responsibility among elders, children and government albeit the emphasis was placed on individuals. Furthermore, dignity of elders was not considered purely a synonym of autonomy, but it had also to do with respect, family and social connections. (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)

Across the world, socio-economic forces are shifting the locus of long-term care from the family to institutional settings, producing significant moral, not just financial costs. This essay explores these costs and the distortions in the role of the family they involve. These reflections offer grounds for critically questioning the extent to which moral concerns regarding long-term care in Hong Kong and in mainland China are the same as those voiced in the United States, although family (...) resemblances surely exist. Chinese moral values such as virtue and filial piety embedded in a Confucian moral and social context cannot be recast without distortion in terms of modern Western European notions. The essay concludes that the Confucian resources must be taken seriously in order to develop an authentic Chinese bioethics of long-term care and a defensible approach to long-term care policy for contemporary society in general and Chinese society in particular. (shrink)

This research investigates sociological ambivalence in negotiating care work in Japanese families. Women and their aging parents experience ambivalence based on conflicting norms of filial obligation, gender ideology, and cultural beliefs about the parent—child bond. Analysis of in-depth interview data showed ambivalence was based on conflict between norms and cultural beliefs and intergenerational differences in norms of caregiving. Not only are norms of care work in Japan gendered, but they also create conflicting demands for women who are torn (...) among providing care for their parents, providing care for their in-laws, and changing expectations for women in contemporary Japan. In the families studied, norms of filial obligation were challenged, but gendered definitions of care work were left largely intact. These findings challenge theories of elder care that identify a hierarchy of preferred caregivers based on filial obligation and gender. (shrink)

Cancer care has transitioned from clinical-based to home-based care to support longterm care in a more familiar and comfortable environment. This care transition has put family caregivers (FCGs) in a strategic position as care providers. Cancer care at home involves psychological and emotional treatment at some point, making FCGs deal with the stress of cancer patients frequently. Due to their limited care competencies, they need supportive care from healthcare professionals in cancer (...) stress management. This study aims to examine how types of demanded healthcare information affect the FCG’s role in reducing the stress of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand for cancer-specific information were more likely to need support in reducing the stress of female cancer patients. Meanwhile, FCGs with a higher demand for information about support services were less likely to need support to reduce cancer patients’ stress. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced stress. This study reveals that the demanded cancer-specific information, e.g., cancer prognosis or likely outcome, must be prioritized to assist FCG’s role in managing cancer stress. (shrink)

What is family-centred care of a hospitalized child? A critical understanding of the concept of family-centred care is necessary if this widely preferred model is to be differentiated from other health care ideals and properly evaluated as appropriate to the care of hospitalized children. The article identifies distinguishable interpretations of family-centred care that can pull health professionals in different, sometimes conflicting directions. Some of these interpretations are not qualitatively different from robust interpretations (...) of the ideals of parental participation, care-by-parent and partnership in care that are said to be the precursors of family-centred care. A prominent interpretation that regards the child and his or her family collectively as the ‘unit of care’ arguably arises from ambiguity and is significantly problematic as a model for the care of hospitalized children. Clinical practice driven by this interpretation can include courses of action that do not aim to do what will best promote a hospitalized child’s welfare, and such cases will not be unusual. More broadly, this interpretation raises challenging questions about the responsibilities and authority of health professionals in relation to the interests of hospitalized children and their families. (shrink)

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated (...) as a person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. (...) We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members—as agreed to by the patient and those family members—into the medical care dialogue. The family covenant formulates advance directives in conversation with (...) family members and with the assistance of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient’s preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation. J Am Geriatr Soc 51:1155–1158, 2003. (shrink)

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring (...) of dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

Volume 20, Issue 6, June 2020, Page 80-82.

The ethical implications of disaster planning garner increasing scrutiny. The role of families in disaster efforts is a topic that requires additional ethical examination. This article reviews the potential roles for families before and during disasters, with particular attention to the impact on children and vulnerable elderly patients. The potential positive and negative impact of family participation in different aspects of healthcare and disaster efforts is assessed.

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the (...) conventional content analysis method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method (n = 34). In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

The family, like so many other modern institutions, often looks more like an arena of competing wills than an ordered life in common. If we hope, therefore, to protect the special role that parents should have in relation to their children, and that the family in general should have in relation to its members, we will need a much more developed account of the goods that are at stake and why we think they are important enough to require (...) authority, even when members of the family oppose the decisions of that authority. This essay develops an older account of authority, one rooted in the thought of Aristotle and St. Thomas Aquinas, and applies this account to our present difficulties concerning the authority of the family over its members in health care decision making. (shrink)