It is a common view that artificial systems could play an important role in dealing with the shortage of caregivers due to demographic change. One argument to show that this is also in the interest of care-dependent persons is that artificial systems might significantly enhance user autonomy since they might stay longer in their homes. This argument presupposes that the artificial systems in question do not require permanent supervision and control by human caregivers. For this reason, they (...) need the capacity for some degree of moral decision-making and agency to cope with morally relevant situations (artificial morality). Machine ethics provides the theoretical and ethical framework for artificial morality. This article scrutinizes the question how artificial moral agents that enhance user autonomy could look like. It discusses, in particular, the suggestion that they should be designed as moral avatars of their users to enhance user autonomy in a substantial sense. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for (...) older persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

The gendered division of labour in combination with the feminisation of international migration contribute to shortages of care, a phenomenon often called ‘care drain’. I argue that this phenomenon is an issue of global gender justice. I look at two methodological challenges and favourably analyse the suggestions that care drain studies should include the effects of fathers’ and other male caregivers’ migration and, in some cases, the effects of migration within national borders. I also explain why care drain is (...) a problem of distributive justice, by looking at the background conditions that result in much of the care-givers’ migration. (shrink)

The American system of long‐term care is disorganized and expensive. Obtaining care for a loved one is a confusing and difficult journey. When it comes to paying for that care, a bit over half who receive care are supported at least partially by insurance, and those with no insurance pay entirely out of pocket. The costs are exorbitant. What makes the system function is reliance on unpaid family members, who care for their loved ones often at considerable cost to themselves.As (...) the baby boom generation ages, this creaky system will become increasingly dysfunctional, and a likely shortage of caregivers will be at the heart of the difficulties. The supply of unpaid family caregivers will become limited, as the ratio of people in the category of ages forty‐five to sixty‐four compared to those who are eighty and older shrinks from just above seven to one in 2010 to just above four to one in 2030. Paid caregivers will be needed to take up the slack, yet they are poorly paid, work under very difficult conditions, and receive little respect from the health care system. In this essay, I discuss the circumstances facing these paid home‐care workers and a possible path forward, illustrating the current problems by drawing on interviews I conducted for a book‐length study published in 2017. (shrink)

Pastoral care is a biblical mandate to the Church to be involved in the lives of God's peop A key metaphor used by Jesus to describe his pastoral role was that of a shepherd. Thi to be God's shepherds and instruments of healing and transformation in God's world is imperative to all people, clergy and laity alike. The brokenness in South African society strikingly apparent, exacerbated by the effects of exceptionally high criminal behaviour statistics show. The demand for pastoral care (...) and assistance with various personal proble is on the increase, with many non-church goers turning to churches for help. Also appare in South Africa is the acute shortage of trained individuals to offer care and counselling. T task of offering care is not the sole responsibility of clergy, as all are called to be shepherds a caregivers. The importance and urgency in training church-based counselling teams cannot overstated. More so in that we are becoming increasingly aware that not only are individu in need of care, but whole communities are struggling with trauma and life's challenges, a often do not know whom to turn to. In pursuance of the realisation that pastoral care is t function and duty of all Christians, this article will delineate in particular an explanation lay counselling, reasons for its importance including biblical foundations, where and ho ordinary South Africans can get involved, and will propose certain models and approach for getting started. These models will not be discussed in depth, but present an opportun for the next. Teams for these models consist of professional counsellors, but ought not to restricted to a select few, as all are called to this special ministry and can be trained for t task, which will include on-going supervision and mentoring. The overall purpose of t article is to highlight the urgency of training lay counsellors and some recommendations w be made how to apply it, in an attempt to be faithful to the biblical mandate and examples by Jesus Christ. (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)

In the current global care regime, care shortages in wealthy nations such as the United States, Canada, Italy, and Hong Kong are being addressed through the global supply of cheap migrant care labor from less wealthy nations. This paper argues that Feminist Care Ethics has a great deal to offer in the analysis of this global care regime. Joan Tronto's own critiques of the migration of care workers have focused on analogies between workers and imported slaves: both are intrinsically exploited, (...) vulnerable, excluded, and stigmatized. She argues that this situation undermines human virtue and the possibility of adequate care, and she advocates instead a model wherein caregiving is seen as a basis for .. (shrink)

There is an ever increasing shortage of human organ transplants in Germany. This paper aims at understanding the reasons for that shortage better and then discusses various ways to overcome it. After estimating the potential supply of donor organs it is discussed why actual supply remains far below potential supply. Insufficient reimbursement for hospitals, a lack of incentives to donate, and mistaken donation rules are diagnosed to cause the shortage. Thus, organ shortage is due not to (...) natural constraints but to inappropriate social institutions. Introducing a presumed consent rule, reciprocity in organ allocation, better payments for hospitals and for donors seem potential remedies. (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)

When a caregiver names objects dominating a child’s view, the association between object and name is unambiguous and children are more likely to learn the object’s name. Children also learn to name things other than solid objects, including nonsolid substances like applesauce. However, it is unknown how caregivers structure linguistic and exploratory experiences with nonsolids to support learning. In this exploratory study of caregivers and children we compare caregiver-child free-play with novel solid objects and novel nonsolid substances to (...) identify the linguistic and exploratory experiences associated with children’s word learning. We found systematic differences in interactions with novel objects, such that children performed more manual actions on solids than nonsolids and caregivers named solids more than nonsolids. Additionally, there was less synchrony between caregivers’ naming and children’s manual and visual exploration of nonsolids than solids. Consistent with prior work, we found that synchronous naming was associated with accurate recognition of solid object names. However, naming synchrony was not associated with recognition of nonsolid substance names or with generalization. Together these findings, though exploratory, suggest the coordination of caregiver-child play can shape what children remember about novel word-object associations for solid objects, but not nonsolid substances. (shrink)

Ethics is a philosophical branch of inquiry that reasons between what is right and wrong. The moral philosophy of Socrates, Aristotle, and Plato from ancient Greek became the basis of most of the western ethics. These days, ethics can be divided based on its inquiries for example, normative, descriptive, metaethics, and applied ethics or based on its theories like utilitarianism, emotivism, and universal ethics. In context with applied ethics that examines issues involving emerging technologies, this study will look into the (...) ethics of Malaysian stem cell technology based on written literature. It was mainly to identify Malaysian literature on stem cell ethics through conventional search since the mainstream international database indicated an obvious shortage. The critical review of this literature will facilitate in the understanding of unique position of Malaysia towards stem cell and its ethics in reference to the limited number. Despite the limitation, this can be a preliminary study urging for more inquiries and exploration to fulfil the multiple perspectives in ethics such as the diversity of Malaysian ethics, the impact of ethics in stem cell regulation in Malaysia, and if western contemporary ethics influences Malaysian ethics particularly involving stem cell technology. (shrink)

Rehabilitation for disabled children requires long-term programmeswhich are expensive to the family. This study aimed to estimate the costincurred by caregivers’ children with disabilities from Pahang, Terengganu andKelantan participating in Community-Based Rehabilitation and cost of seeking alternative rehabilitation. Costanalysis using the Activity-Based Costing method was used to estimatetwelve-months’ expenditure in 2014 institutional year on 297 caregivers ofchildren with disability, aged 0 to 18 years who attended CBR. Data werecollected using a self-administered costing questionnaire and presentedin median. Results showed (...) that the median direct and indirect costs,excluding medications and alternative care were nearly four times as highin Home-Based compared to Centre-Based vs. RM608. Both groups of caregivers spent a significant amount ofresources on alternative rehabilitation. The high costs incurred for alternativerehabilitation is a major economic burden to the family. (shrink)

Any program seeking to provide antiretroviral treatment to the many patients in need is bound to confront ethical dilemmas. Dilemmas, as we know, are situations in which decisionmakers are faced with a choice between equally unsatisfactory alternatives. Yet those in charge must make a decision or establish a policy that takes one pathway to the exclusion of another. Reasonable people may disagree over the choice, arguing that an alternative selection would have been ethically superior.

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops and expands the notion of care itself and its connection to practice. Organised around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach to dependency, responsibility, (...) and justice, The Ethics of Carepresents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, indigenous rights and postcolonialism in care and theoretical approaches to the concept of care. Offering discussions from a variety of disciplinary approaches, including sociology, communication, and social theory, as well as hermeneutics, phenomenology, and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and the question of how we think about care as a notion and social form, and how this is related to practice. (shrink)

The classical notions of 'virtue' and 'leisure' offer excellent insights into the essentially moral nature of medical practice. This is especially evident in the understanding that professional caregiving has the potential to enhance the moral character as well as the moral awareness of the practitioner. Reflective awareness of the moral nature of the caregiving process can also contribute to coping with negative stress, which almost always has its origins in frustrations rooted in moral quandaries and evaluations. Understanding the process required (...) arises from implementation of caregiving in combination with deliberate, conscious development of spiritual awareness and reflection on moral meaning. (shrink)

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview scores. Generalized estimating equations were used for (...) the longitudinal data analysis.ResultsParticipants with Lewy body disease had a significantly higher caregiving burden compared with those with Alzheimer's disease after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations. (shrink)

BackgroundCaregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on patients-caregivers (...) relationship and their alignment in the treatment decision-making process and estimate related improvement in patient' compliance/adherence to treatments.MethodsA total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned.DiscussionA positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment. (shrink)

The coronavirus disease 2019 (COVID-19) pandemic has had profound effects on all aspects of society. Families were among those directly impacted by the first measures imposed by health authorities worldwide to contain the spread of the Sars-CoV-2 virus, where social distancing and mandatory quarantine were the main approaches implemented. Notably, little is yet known about how social distancing during COVID-19 has altered families' daily routines, particularly regarding music-related behaviors. The aim of this study was 2-fold: (i) to explore changes in (...) families' daily routine and caregivers' levels of well-being and stress during the COVID-19 outbreak in Brazil and (ii) to investigate whether musical behaviors of caregivers and the children under their care (aged from 3 to 6 years old) changed during social distancing. One hundred and eighty-eight caregivers residing in Brazil participated in an online cross-sectional study conducted between July and August 2020. Our findings suggest significant changes in families' dynamics during the COVID-19 outbreak, with parents (especially mothers) spending more time on childcare and a substantial decrease in caregiver's well-being. Regarding music-related behaviors, our results revealed considerable changes in caregivers' and children's musical activities at home during social distancing, including an increase in child-only musical behaviors and shared caregiver-child activities. Moreover, sociodemographic factors such as caregiver background and well-being as well as the child's disability status significantly influenced musical engagement at home during social distancing. This study captured some features of the home musical environment of middle-class families in Brazil in the first stages of social distancing restrictions during the pandemic and caregivers' role in providing an environment where musical experiences are nurtured. Further research is needed to better understand aspects such as the long-term impact of the changes of musical behaviors at home on musical parenting and families' well-being. (shrink)

Despite a recent economic downturn, there is considerable political and industry pressure to retain or even increase the number of scientists in the UK and other developed countries. Claims are made that the supply of scientists (including engineers and mathematicians) is crucial to the economy and the health of the nation, and a large number of initiatives have been funded to address the problem. We consider these claims in light of a re-analysis of existing figures from 1986 to 2009, for (...) young scientists passing through education and into employment. Science graduates are heavily stratified by social origin, and this sorting takes place during initial schooling just as it does with other 'prestige' subjects. The majority of science graduates then move into initial occupations that are not directly related to their degree, suggesting that at this stage of life at least, the demand for scientists trained in specific areas is more than met by existing numbers. We have no reason to believe that the situation is different to other vocational and non-vocational subjects, so perhaps science is not as special as politicians and business leaders imagine. Perhaps young people are put off careers in science by their education. Or perhaps the incentives are not right, leading to the 'wrong' kinds of students in science, and so wastage and inefficiency in the supply process. More pertinently, perhaps this vocational outcome is not how a developed country should assess the value and importance of scientific knowledge among its population. (shrink)

Replacements for corporate farm managers are increasingly hard to find. At the same time, there is a large pool of potential managers that has been hardly tapped into: young female professionals. Focusing on the supply side of the labor market for farm managers, we investigate how gender-specific life aspirations impact occupational intention. To explain gender-specific occupational intention, we operationalize two conceptual frameworks: a behavioral economic conceptualization that focuses on the material and non-material cost and benefits associated with occupational choice, and (...) a psychological conceptualization based on the theory of planned behavior. Our analysis of survey data among agricultural students shows that participating women are less inclined to pursue a farm manager position than participating men for two main reasons: first, they expect less internal benefits from such a position. Second, they believe to be less suited to meet the professional requirements. (shrink)

In a short rejoinder, I thank Macklin and Benatar for their very helpful and thought-provoking comments and at the same time, I want to provide some additional information, which might be of interest to Macklin and our readers.

AbstractHow far can smart machines, or carebots, go in performing the profoundly intimate human work of patient caregivers? How will mechanization alter how we understand the essential features of the human task of caregiving and the role of the caregiver? It is these complex questions, with real world implications, that this article discusses in reviewing “Caregiving, Carebots, and Contagion” by philosopher and bioethicist Michael Brannagan.

This study explores the emergence and productivity of word order usage in Mandarin-speaking typically-developing children and children with autism spectrum disorder, and examines how this emergence relates to frequency of use in caregiver input. Forty-two caregiver-child dyads participated in video-recorded 30-min semi-structured play sessions. Eleven children with ASD were matched with 10 20-month-old TD children and another 11 children with ASD were matched with 10 26-month-old TD children, on expressive language. We report four major findings: Preschool Mandarin-speaking children with ASD (...) produced word order structures with pervasive ellipsis at similar rates to language-matched TD children, but also displayed differences from TD children in their usage of SVt and VtO frames; Grammatical productivity was observed in both TD children and children with ASD; moreover, children with ASD with higher expressive language produced less stereotyped language; Both TD children and children with ASD heard a range of word orders in their caregivers’ input, with TD children’s input greater in amount and complexity; however, caregivers of both groups also showed no age/language-related changes in word order usage; Few word-order-specific correlations emerged between caregivers and their children; however, strong correlations were observed for mean length of utterances for both groups: Caregivers who produced longer/more complex utterances had children who did the same. Taken together, it seems that despite their pragmatic deficits, the early grammatical knowledge of word order in Mandarin-exposed children with ASD is well preserved and in general follows the typical developmental pattern. Moreover, caregiver input is broadly rather than finely tuned to the linguistic development of TD children and children with ASD, and plays a more important role in children’s general syntactic development than in specific word order acquisition. Thus, early word order usage in preschool Mandarin-speaking TD children and children with ASD may be influenced by both caregiver input and child abilities. (shrink)

Research on the unrepresentability of death in Samuel Beckett’s oeuvre abound in Beckett scholarship, but little attention has been given to the artist’s representation of caregiving to the dying in his plays. With reference to Martin Heidegger’s concept of _care_ and Albert Camus’s idea of the _absurd_, this article analyzes _Endgame_ (1957) and _Footfalls_ (1976) by attending to Beckett’s dramatic representation of caregiving as undergirded by a sense of its absurdity. The almost 20-year gap between the writing of both plays (...) highlights the development of an understanding that this sense of absurdity is never about the caregiver’s questioning of one’s obligation to the dependent but about how one chooses to respond to caregiving as an absurd predicament. The pertinence of such a representation of caregiving by Beckett lies in its poignant articulation of a complex experience that is often left unexpressed by caregivers who prioritize their dependent loved ones over themselves. (shrink)

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time (...) spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing.These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups. (shrink)

We verified moral distress related to organ shortage for transplantation in nursing students. This quantitative pilot study analyzed data from 104 nursing undergraduate students. Data were collected through a survey composed of four questions and two sociodemographic items. The chi-squared test was used to examine categorical variables, whereas continuous variable data were analyzed using ANOVA and the Pearson Product Moment correlational test for determining the existence of moral distress regarding the availability of one heart for four individuals susceptible to (...) heart transplantation. A high level of moral distress was identified with regard to the hypothetical decision-making process, which justifies the need for further studies on the subject. Given the hypothetical scenario, moral distress was observed among the students, reaching severe distress in some cases. Approval CEP-University of Alberta Pro00068610. (shrink)

The aim of this article is to report the results of therapy sessions conducted with survivors of an earthquake that struck Luku Township in Nantou County, central Taiwan, in September 1999. The sessions explored survivors’ feelings, interactions, and interpretations of the crisis, as well as their roles in post-earthquake relief efforts. The participants were teachers and administrators from four primary schools. The results indicated three distinct forms of caring, namely: encumbered caring, connected caring, and reflected caring. The findings were used (...) to construct a framework for caregiver self-monitoring. They also suggest that therapy groups provide an inner space that self-regulates the frustrations arising from this type of experience, for both caregivers and survivors. The intrasubjective and intersubjective dialogues within the groups are essentially reflective practices for improving services and generating new knowledge about medical ethics. (shrink)

The COVID-19 pandemic has resulted in major stressors such as unemployment, financial insecurity, sickness, separation from family members, and isolation for much of the world population. These stressors have been linked to mental health difficulties for parents and caregivers. Religion and spirituality, on the other hand, is often viewed as promotive of mental health. However, the mechanisms by which R/S might promote mental health for parents during the pandemic remain unclear. Thus, this longitudinal study explores how R/S is associated (...) with better caregiver mental health during the COVID-19 pandemic through higher levels of positive coping skills. A sample of N = 549 caregivers across Canada, the United States, the United Kingdom, and Australia were recruited through the Prolific® research panel [67.8% female; age M = 41.33 years, 72.3% White/European]. Participants were assessed on measures of psychological distress, coping, R/S, and COVID-19 disruption at three time points between May and November 2020. Cross-lagged panel analysis revealed that caregiver coping mediated the relationship between caregiver R/S and caregiver mental health. Findings highlight a mechanism through which R/S naturally conveys a mental health benefit during periods of social disruption, which may provide an important target for public health promotion and clinical intervention. (shrink)

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that shed light on a care ethical approach toward the role of emotions in care practices, and may be used by practitioners and (...) facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved. (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)

Caregiving relationships are often characterized by an imbalance of power between the caregiver and her cared-for. The danger that this power will be abused is a source of serious moral concern. In this article, I argue that the risk of an abuse of power sometimes stems not from the possession of power itself, but from the very nature of caring relationships. This is because carers must be prepared to exercise non-minimal amounts of power over their cared-fors, even if doing so (...) is likely to cause the cared-for distress or even pain. This means that caring itself, rather than the malign influence of power dynamics, generates a risk of unintentional abuse. One of the ways in which this risk can be reduced, I argue, is by trying to avoid an exclusive focus on the outcomes of care, and by paying more attention to the way in which that care is delivered. (shrink)

When a doctor sees a patient, answers to a few questions can be crucial. So what to do when no one at the hospital speaks the patient's language? Doctors can often devise creative, makeshift ways of communicating with their patients, but the problem calls ultimately for a creative organizational response.

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients’ surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims (...) to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one’s condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. (shrink)

Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with (...) a participatory approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

Child assent is recommended in addition to parental consent when enrolling children in clinical research; however, appreciation and relevance ascribed to these concepts vary in different contexts, and information on attitudes towards storage of biological samples for future research is limited, especially in developing countries. We assessed caregivers’ understanding and appreciation of consent and assent procedures, and their attitudes towards use of stored blood samples for future research prior to enrolling a child in clinical research. A total of 17 (...) in-depth interviews were conducted with primary caregivers of children at enrolment or on the immediate follow-up date. All caregivers recalled significant amount information from the study information sheet and were able to appropriately link such information to the consent process. While all participants confirmed information received prior to blood sampling as adequate, a few noted that the purpose was not sufficiently well communicated. Caregivers felt children were cognitively vulnerable, and prone to decisions that were not necessarily in their best interest. Nearly all caregivers felt it was their right and responsibility to overrule objections from their ward’s regarding enrolment into specific study or receipt of a therapeutic procedure. There were no objections or concerns regarding use of stored biological samples for future research purposes. There is thus, a need to improve understanding of caregivers on the information provided during the informed consent process. Context-specific studies on the age of assent in specific populations are needed. (shrink)