The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

Women from post-socialist countries started migrating to Turkey in the second half of the 1990s to work in the domestic work sector. Migrant domestics have formed their niche as live-in caregivers, due to the disinclination of the existing local labour power to work in the care sector. Yet, the employer mothers, besides asking their live-in workers to tend their children, often demand that they also do the daily chores in the home, purposely leaving the heavy cleaning to (...) their Turkish domestics. This way, live-in migrant domestics are promoted from the status of foreign employees to fictitious family members, to eventually embody `the ideal housewife'. (shrink)

The aim of the present study was, by means of discussion highlighting ethical questions and moral reasonings, to increase understanding of the situations of caregivers and relatives of older persons living in a public nursing home in Sweden. The findings show that these circumstances can be better understood by considering two different perspectives: an individual perspective, which focuses on the direct contact that occurs among older people, caregivers and relatives; and a societal perspective, which focuses on the norms, (...) values, rules and laws that govern a society. Relatives and caregivers thought that the politicians were sending out mixed messages: they were praising caregivers and relatives for their efforts, but at the same time the public health care sector was subjected to significant cutbacks in resources. Both caregivers and relatives were dissatisfied and frustrated with the present situation regarding the care of older persons in public nursing homes. (shrink)

This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views of those involved in the care of people living (...) with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research. (shrink)

Professional caregivers who work with the trauma and suffering of others, such as doctors, nurses and psychologists, may face significant challenges along with the risk of adverse, long-term mental and physical health problems. Caregivers with responsibility for dependants outside their professional work reported more stress. This finding is of particular relevance in respect of caregivers in under-developed countries such as Zimbabwe, where many households have taken in additional children who have been orphaned, whose parents are ill, or (...) whose parents have temporarily gone elsewhere in search of work. For the purposes of the study, a qualitative phenomenological research design was selected as appropriate to the focus on human experience. An interpretative approach was adopted to explore and explicate the lived experiences of the participants and the meaning they attached to them. The major sources of stress for professional caregivers emerged as being resource constraints, interpersonal issues, and personal issues. Factors found to promote coping include the caregiver’s meaning making perspective, making a difference, and constructing a sense of personal control. (shrink)

In the early twenty-first century, we stand on the threshold of welcoming robots into domains of human activity that will expand their presence in our lives dramatically. One provocative new frontier in robotics, motivated by a convergence of demographic, economic, cultural, and institutional pressures, is the development of “carebots”—robots intended to assist or replace human caregivers in the practice of caring for vulnerable persons such as the elderly, young, sick, or disabled. I argue here that existing philosophical reflections on (...) the ethical implications of carebots neglect a critical dimension of the issue: namely, the potential moral value of caregiving practices for caregivers. This value, I argue, gives rise to considerations that must be weighed alongside consideration of the likely impact of carebots on care recipients. Focusing on the goods internal to caring practices, I then examine the potential impact of carebots on caregivers by means of three complementary ethical approaches: virtue ethics, care ethics, and the capabilities approach. Each of these, I argue, sheds new light on the contexts in which carebots might deprive potential caregivers of important moral goods central to caring practices, as well as those contexts in which carebots might help caregivers sustain or even enrich those practices, and their attendant goods. (shrink)

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care (...) decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (shrink)

The glaring lack of formal and informal caregivers in Germany has not only become apparent in hospitals and nursing homes but also in home care arrangements. One tension is particularly pertinent in such arrangements: a ‘family-oriented’ logic of the long-term care insurance and the individual wishes of those in need of care meet the actual possibilities of family carers. This care gap has been compensated for by 24-hour care workers, so-called ‘live-ins’, from Eastern Europe for some years. This (...) contribution maps the ‘live-ins’ situation comprehensively from an ethical perspective. Based on different constellations regarding the ‘live-ins’ status as a professional nurse or non-professional caregiver, which ethical principles and moral norms are affected by whom and potentially conflict with each other in such home care arrangements at a micro and meso level of care are outlined. Special attention is paid to the tension between self-care and care for others, and to questions of the shared responsibility in and social responsibility of those external services that are involved in home care in addition to the ‘live-in’. In order to uncover, understand and influence the current ethical problems, an ethical framework that considers both the divergent interests of all individuals involved in the home care arrangement and their mutual dependency and vulnerability is needed. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

While caregiving in northern, rural and remote communities takes place in the context of conditions unique to smaller communities, caregivers live with social policies that are shaped by urban norms rather than rural realities. In times of economic decline and government cuts rural issues of limited services and infrastructure as well as dependency on a single industry can lead to unemployment, community and family instability, and a decline in health and well-being. During these times caregivers face increased (...) pressure to voluntarily fill the gaps left by service cuts. Research with women caregivers in four communities in northern British Columbia (BC), Canada explores the experiences of caring and the social, geographic, economic and political contexts within which the caregiving occurs. The discourse of economic efficiencies that speaks solely to the monetary value of care is contrasted with the human condition of connectedness and relationships. These two contradictory perspectives are uncovered during interviews with women caregivers and analyzed in the framework of Olena Hankivsky's discussion of an ethic of care. (shrink)

Background:The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential.Objectives:To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences.Research design:This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry.Participants and research context:This article focused on three (...) cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.Ethical consideration:Approval was obtained from the university ethics committee.Findings:The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers.Conclusion:This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people. (shrink)

Aurama is a system designed to provide peace of mind and a sense of connectedness to adults who care for elderly parents living alone. Aurama monitors the elders at home using unobtrusive sensor technology and collects data about sleeping patterns, weight trends, cognitive abilities and presence at home. The system provides an unobtrusive ambient information display that presents the status of the elder and lets its users inspect long-term data about the well-being of the elder interactively. Aurama was designed iteratively (...) with substantial user involvement through interviews, prototype evaluation, focus groups and lab tests. The final prototype was evaluated in two field trials each involving an elder and their adult children. The input of users throughout the design process and during these tests demonstrates clearly the potential of awareness systems to support the target user group to obtain peace of mind and feel connected. Furthermore, the users indicate a clear need for information on long-term trends relating to the well-being of aging parents, in contrast to the current emphasis in this field of research on providing instantaneous status information about daily activities and context. (shrink)

Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. (...) The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with. (shrink)

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are differentiated, modified or (...) contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field. (shrink)

Despite the fact that there is unmet demand for nurses in health services around the world, some nurses migrate to destination countries to work as domestic workers. According to the literature, these nurses experience contradictions in class mobility and are at increased risk of exploitation and abuse. This article presents a critical discussion of the migration of nurses as domestic workers using the concept of ‘global care chain’. Although several scholars have used the concept of global care chains to illustrate (...) south to north migration of domestic workers and nurses, there is a paucity of literature on the migration of nurses to destination countries as domestic workers. The migration of nurses to destination countries as domestic workers involves the extraction of reproductive and skilled care labor without adequate compensatory mechanisms to such skilled nurses. Using the case of the Canadian Live‐in Caregiver Program, the study illustrates how the global movement of internationally educated nurses as migrant domestic workers reinforces inequities that are structured along the power gradient of gender, class, race, nationality, and ethnicity, especially within an era of global nursing shortage. (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 number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to (...) avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

The recent process of deinstitutionalization of the psychiatric treatment system, in both Denmark and other European countries, has relied heavily on the involvement in treatment and recovery of cohabitant relatives of diagnosed people. However, political objectives regarding depression and involvement rely on a limited body of knowledge about people’s ways of managing illness-related problems in everyday life. Drawing on a discursive notion of gender laid out by Raewyn Connell, the aim of the article is to elucidate how the involvement of (...) relatives is guided by an extra- individual rationale about gender and caregiving, and how this gendered discourse might frame different challenges and burdens, depending on the gender of the diagnosed person and the cohabitant relative. Drawn from a larger, multisited field study on involvement processes in Danish psychiatry, t he article is based on field notes and 21 interviews with seven heterosexual couples. The analysis shows that gender works as a decisive premise for the division of caregiving labour among the couples, and clarifies how the couples’ gendered institution is disrupted after the onset of depression. The article argues that gender-blind involvement strategies could produce divergent treatment outcomes and varying social effects in relation to couples’ everyday family lives. (shrink)

Traditional considerations of justice for those who require caregiving have centered on what is due to the dependent person. However, considerations of justice also bear strongly on what is due to the caregiver. I focus on unpaid dependency work, too long treated as a private matter rather than a public concern. More is owed to those who render care: the division of labor is unjust, the nature of dependency work creates vulnerabilities for caregivers, and unpaid caregivers are disadvantaged (...) in the world of paid work. Obligations to mitigate these facts are ultimately based on the truth that all members of society at some point in their lives benefit from caregiving and that noncaregivers benefit unfairly from the heavy distribution of dependency work to a small number of certain kinds of individuals. It is necessary to ask which agents of justice are responsible for remedying this state of affairs, and how. I propose a distributed scheme of obligation in which members of society and the state, as arbiter of social responsibility, share responsibility for the remedy. It is incumbent upon us as a society to refrain from making vulnerable the most essential among us, to reap benefits without sowing unjust burdens. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to (...) avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

ABSTRACT The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way (...) to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

With the increasing number of people living with HIV/AIDS and the escalating costs of health care, there is an increasing demand for informal caregiving in the community. Currently, much emphasis is placed on individuals who are living with HIV/AIDS (in terms of the provision of social, psychological and economic support), but very little attention has been paid to the well-being and quality of life of informal caregivers. Lack of support and care for caregivers may have a negative impact (...) on the quality of care and effective services for individuals living with HIV/AIDS. This paper is based on findings from a qualitative study that explored major sources of stress associated with caregiving among informal caregivers in a village in the southern part of Botswana. The paper suggests that informal caregivers are an integral part of the continuum of care. As a result, they need to be nurtured and supported for the betterment of those both infected and affected by HIV/AIDS. The paper concludes by discussing the implications for further research, policy and programme development. (shrink)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of attorney, as (...) well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (shrink)

While parents have long received guidance on how to raise children, a relatively new element of this involves explicit references to infant brain development, drawing on brain scans and neuroscientific knowledge. Sometimes called ‘brain-based parenting’, this has been criticised from within sociological and policy circles alike. However, the engagement of parents themselves with neuroscientific concepts is far less researched. Drawing on 22 interviews with parents/carers of children living in Scotland, this article examines how they account for their use of concepts (...) and understandings relating to neuroscience. Three normative tropes were salient: information about children’s processing speed, evidence about deprived Romanian orphans in the 1990s, and ideas relating to whether or not children should ‘self-settle’ when falling asleep. We interrogate how parents reflexively weigh and judge such understandings and ideas. In some cases, neuroscientific knowledge was enrolled by parents in ways that supported biologically reductionist models of childhood agency. This reductionism commonly had generative effects, enjoining new care practices and producing particular parent and infant subjectivities. Notably, parents do not uncritically adopt or accept neurobiological and/or psychological knowledge; rather, they reflect on whether and when it is applicable to and relevant for raising their children. Thus, our respondents draw on everyday epistemologies of parenting to negotiate brain-based understandings of infant development and behaviour, and invest meaning in these in ways that cannot be fully anticipated within straightforward celebrations or critiques of the content of parenting programmes drawing on neuropsychological ideas. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to (...) avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

Modernization in China is accompanied by some specific features: aging, individualization, the emergence of the nuclear family, and changing filial piety. While young Chinese people are still the main caregivers for older adults, understanding the attitudes of young Chinese people toward aging and living independently in the context of modernization is important because it relates to future elderly care problems in China. By using in-depth interviews and qualitative methods, 45 participants were enrolled in the study, 38 were women and (...) 37 had no siblings. The ages ranged from 17 to 25 years. Results revealed that participants held diverse attitudes about older adults, but the general attitudes were that older adults are lonely, financially disadvantaged, have poor social support, lack hobbies, and care about their children more than themselves. Chinese college students were affected both by traditional filial piety and individualism; however, of the two, they seemed put greater value on independence. Moreover, traditional filial piety is changing in a modern direction, affected by Western ideas of individualism: the status of the senior is diminishing, and living with one’s parents is no longer regarded as a necessary component. Implications concerning age stereotypes, elderly care policies, and strategies are discussed. (shrink)

Kamphof offers an illuminating depiction of the technological mediation of morality. Her case serves as the basis for a plea for modesty up and against the somewhat heroic conceptualizations of techno-moral change to date—less logos, less autos, more practice, more relationality. Rather than a displacement of these conceptualizations, I question whether Kamphof’s art of living offers only a different perspective: in scale, and in unit of analysis. As a supplement and not an alternative, this modest art has nonetheless audacious implications (...) for the ethics of surveillance. (shrink)

Much of the debate around temporary foreign worker programs in recent years has focused on full or partial access to rights, and, in particular, on the extent to which liberal democratic states may be justified in restricting rights of membership to those who come and work on their territory. Many accounts of the situation of temporary foreign workers assume that a full set of rights will remedy moral inequities that they suffer in their new homes. I aim to show two (...) things: first, and based on experiences reported by former Live-in-Caregivers in Canada who now have access to the full set of citizenship rights, and German citizens who are descendants of Kurdish guestworkers in Germany, I have proposed that even after gaining citizenship, many of them experience social stigma and a sense of exclusion. Second, I have argued that this neglects a basic need that individuals have, which is to have access to relational resources within society in order to be protected against social deprivation. This need is seemingly immune to be effectively protected through the known catalogue of social, civic and political rights. Instead, I argue that social deprivation needs to be analyzed through the lens of institutional vulnerability to yield an analysis of the moral obligations of liberal democratic states. (shrink)

The World Economic Forum has called dementia one of the biggest global health crises of the 21st century. In this paper, I make the case that unpaid caregiving by family or close others of persons living with dementia should be a matter of public health. Shaji and Reddy proposed this in 2012 in the context of dementia care in India. They explicitly acknowledge the influence of Talley and Crews’ 2007 article on caregiving as an emerging public health concern. However, they (...) narrow their proposal to caregiving for persons living with Alzheimer’s disease and related dementias (ADRD), which I take to be an important first step in building an argument for putting caregiving more firmly on a public health agenda. In order to support my claim, first, I establish that caregiving is a social determinant of health. Second, I counter objections to the addition of caregiving for persons living with ADRD to a public health agenda, as it would lead to public health mission creep. I then argue that a broad understanding of public health can be inclusive of this type caregiving and is preferable as it highlights an issue of health equity, the gendered nature of caregiving. Finally, I make the case that a definition of public health inclusive of the social determinants of health and caregiving is more adequately suited to address the health consequences of the current changing demographic patterns. My argument adds support to writings on migration calling for broadening the scope of public health. (shrink)

The practice of pastoral care (cura animarum) over the ages has been informed and influenced by the need to develop creative ways (interventions) to respond to people’s contextual challenges. These approaches have been well documented. However, the history, developments and emerging pastoral care practices in Africa have not been documented. This article, by way of a survey, considers the pastoral care approaches that emerged in Africa from the period when Christianity was introduced to the continent. It addresses three interlinked questions. (...) Firstly, to what extent has pastoral care approaches and practices in Africa been influenced by the African context and developments? Secondly, to what extent has the context and the emerging pastoral care approaches in Africa been discerned from historical developments and documented? Thirdly, what links can be drawn between pastoral care practices in Africa and its historical as well as cultural context? In answering these questions, the article retrieves pastoral care developments in Africa by discerning pastoral care during the periods of Christianity in Africa. The notion of cura animarum as ‘soul care’, referring to care for the whole person (holistic care, i.e., nephesh care) from a Christian spiritual perspective, will be employed as a framework. The assumption guiding the article is that pastoral care practices and approaches in Africa have arisen as responses to the contextual realities being experienced at the interface of Christianity and the African people. These realities arose and persist to this day as a struggle to relate, apply and live out an authentic African Christian life to cope with life in a meaningful way. It concludes by suggesting ways on how pastoral care in Africa should be practiced in the current period and going forward. (shrink)

This paper examines the phenomenon of transformational growth in maternal caregivers of children who have undergone a kidney transplant. Semi-structured interviews were conducted with seven mothers of transplant children who shared narrative accounts of their lived experience. Through a phenomenological analysis of the interview data, the fundamental structure of positive growth in caregivers of transplant children was illuminated, revealing both themes of unresolved suffering and trauma and themes of posttraumatic growth and transformation.

This article extends recent scholarship on masculinity by analyzing the effects of social structure, social relations, and gendered caregiving ideology on the care men give to kin and friends. To be sure, men spend significantly less time giving care than do women. However, much variation is contingent on the women in men's lives: It is primarily the characteristics of men's families more than employment or gendered caregiving ideology that shape the amount and kind of caregiving men provide. Our findings suggest (...) that although men's caregiving is variable and socially patterned, it is contingent on women: Wives and daughters pull men into caregiving, while adult sisters substitute for them. (shrink)

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more (...) autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community. (shrink)

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two groups of relevant others. The (...) high burden of home‐care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical‐ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, (...) ranging from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. Dyads (...) participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

Advance directives such as living wills are attractive in that they give us a sense of control over our futures. But they also tend to obscure conflicts between a patient's competent wishes and later, incompetent interests. They allow caregivers to avoid evaluating quality of life in assessing the best interests of incompetent patients.

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts (...) or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

We, in the rare disease community are grateful to Halley et al. (2023) for highlighting some of the long-overlooked barriers to care. As the parent of a non-ambulatory, teenage boy living with Duch...

As artist-in-residence at the Zen Hospice Project Guest House, Wendy MacNaughton experienced firsthand how difficult it is to know what to do when we're sharing final moments with a loved one. In this tenderly illustrated guide to saying goodbye, with a foreword by renowned physician and author BJ Miller, MacNaughton shows how to make sure those moments are meaningful. Using a framework of "the five things" taught to her by a professional caregiver, How to Say Goodbye provides a model for (...) having conversations of love, respect, and closure: with the words "I forgive you," "Please forgive me," "Thank you," "I love you," and "Goodbye," each oriented toward finding mutual peace and understanding when it matters most. How to Say Goodbye features MacNaughton's drawn-from-life artwork from both the Zen Hospice Project Guest House and her own aunt's bedside as she died, each paired with hospice caregivers' gentle advice on creating a positive sensory experience, acknowledging what you can't control, and sharing memories and gratitude. A poignant guide to embracing the present and deepening relationships during great vulnerability, How to Say Goodbye shows that just as there is no one right way to live a good life, there is no one right way to say goodbye. Whether confused, scared, or uncertain, this book is a starting point. (shrink)

A central concept in Dutch health law is the care of a good caregiver. We find this standard in various statutes and in legal doctrine. This concept is, however, vague and open and must be made more concrete in professional practice, in moral theory, and in law. In this article, we explore the implications of this complex standard and analyze what moral philosophy and jurisprudence can contribute to its clarification and implementation in professional practice and law. We start with some (...) reflections on how practitioners see this norm and try to live up to it. (shrink)

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person’s perceived dignity changes in response to certain interactions and experiences with other persons. In (...) this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. (shrink)

Background:Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.Aim:To explore the view of people in the early stage of dementia on planning for future care.Research design:The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research context:Dementia nurses assisted in the recruiting of people with dementia for participation in the study. Study information (...) was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerations:People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.Findings:The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.Discussion:High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.Conclusion:The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

The literature on aging has grown exponentially in recent years, accompanied by a slew of reports providing data detailing progress, challenges, and opportunities in caring for the aging. Yet such reports too often omit the lived experience of older persons and in‐depth discussion of the particular challenges and opportunities that arise within what Janelle S. Taylor calls “moral laboratories.” The Evening of Life: The Challenges of Aging and Dying Well, a volume edited by Joseph E. Davis and Paul Scherz and (...) to which Taylor is a contributor, helps fill this gap. With expert analyses from social scientists, philosophers, and health care professionals, the book contains evocative stories that facilitate reflection on the complexity, ambiguity, and diversity of being in later years. (shrink)

Over the last few decades there has been a revival of interest in virtue ethics, with the emphasis on the virtuous caregiver. This paper deals with the ‘virtuous patient’, specifically the patient with End Stage Renal Disease (ESRD). We believe that a virtue approach provides insights not available to current methods of studying coping styles and coping strategies. Data are derived from seven semi-structured in-depth interviews. The transcripts of the interviews were subjected to an Interpretative Phenomenological Analysis (IPA). The focus (...) of the analysis was on ‘living well with chronic illness’. It appears that the moral challenges faced by patients with an ESRD are manifold. When they are invited to tell the story of their illness, they do not explicitly speak of virtues, but they often refer to moral qualities, and to attitudes that can be regarded as virtuous. We identify several such concepts in the narratives of patients with ESRD. We conclude that the Aristotelian model of virtue ethics is particularly descriptively (and possibly also normatively) relevant to the explanation of the life narratives and the moral challenges of patients with an ESRD. (shrink)