This book is devoted to the welfare of invertebrates, which make up 99% of animal species on earth. Addressing animal welfare, we do not often think of invertebrates; in fact we seldom consider them to be deserving of welfare evaluation. And yet we should. Welfare is a broad concern for any animal that we house, control or utilize – and we utilize invertebrates a lot. The Authors start with an emphasis on the values of non-vertebrate animals and discuss the need (...) for a book on the present topic. The following chapters focus on specific taxa, tackling questions that are most appropriate to each one. What is pain in crustaceans, and how might we prevent it? How do we ensure that octopuses are not bored? What do bees need to thrive, pollinate our plants and give us honey? Since invertebrates have distinct personalities and some social animals have group personalities, how do we consider this? And, as in the European Union’s application of welfare consideration to cephalopods, how do the practical regulatory issues play out? We have previously relegated invertebrates to the category ‘things’ and did not worry about their treatment. New research suggest that some invertebrates such as cephalopods and crustaceans can have pain and suffering, might also have consciousness and awareness. Also, good welfare is going to mean different things to spiders, bees, corals, etc. This book is taking animal welfare in a very different direction. Academics and students of animal welfare science, those who keep invertebrates for scientific research or in service to the goals of humans, as well as philosophers will find this work thought-provoking, instructive and informative. (shrink)

This paper offers an ethical framework for the development of robots as home companions that are intended to address the isolation and reduced physical functioning of frail older people with capacity, especially those living alone in a noninstitutional setting. Our ethical framework gives autonomy priority in a list of purposes served by assistive technology in general, and carebots in particular. It first introduces the notion of “presence” and draws a distinction between humanoid multi-function robots and non-humanoid robots to suggest that (...) the former provide a more sophisticated presence than the latter. It then looks at the difference between lower-tech assistive technological support for older people and its benefits, and contrasts these with what robots can offer. This provides some context for the ethical assessment of robotic assistive technology. We then consider what might need to be added to presence to produce care from a companion robot that deals with older people’s reduced functioning and isolation. Finally, we outline and explain our ethical framework. We discuss how it combines sometimes conflicting values that the design of a carebot might incorporate, if informed by an analysis of the different roles that can be served by a companion robot. (shrink)

Alzheimer's disease is the most common neurodegenerative disorder in today's developed world that is also increasingly picked out as a focal theme in fictional literature. In dealing with the subjectivity of human experience, such literature enhances the reader's empathy and is able to teach about moral, emotional and philosophical issues, offering the chance to see situations from a position otherwise possibly never taken by the reader. The understanding and insight so gained may well be unscientific, but the literary approach offers (...) an insight into the whole person's perspective and the particularity and uniqueness of a situation that includes ethical conflicts. A key motif of fictional literature centred around dementia remains the burden the adult-child carer is confronted with, considering the parent's remorseless decline and personality change, the sudden demand for devoted and continuous care, and the constantly changing relationship with the declining parent. In the context of an ever increasing demand for a constructive public discussion regarding end-of-life treatment of demented patients, Christine Devars (Le Piano Désaccordé) and Andrés Barba (Ahora Tocad Música de Baile) illustrate how powerful and burdensome the impact of Alzheimer's disease is on both patient and carer and what extremes may be reached under such truly exceptional circumstances. (shrink)

Whilst care imperatives have arisen across the breadth of Western societies, within the education sector they appear both prolific and urgent. This paper explores the deployment of care discourses within education generally and draws upon the case of Australian Health and Physical Education (HPE) more specifically, to undertake a Foucauldian interrogation of care. In so doing I demonstrate the usefulness of Foucault's pastoral power lens and its capacity to provide insight into the moral and ethical work conducted by caring teachers (...) on behalf of the state (Acker, 1995). Following a brief overview of the advocacy, challenges and debates surrounding the issue of caring teaching within education, I draw on the work of Hunter (1994) and three case studies from a genealogical interrogation of HPE that employed Foucualt's ethical fourfold as a heuristic device to reveal the ethical practices and objectives of the good HPE teacher. Drawing on this genealogical work, I argue that HPE teachers and their colleagues have been purposefully incited to constitute themselves as agents of pastoral power. From this Foucauldian perspective, I conclude with an exploration of the unintended and possibly ‘dangerous’ practices of caring teaching that may emerge within the complex and messy nexus of contemporary self‐constitution. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophers, Carers, and Psychodramatic GamesCorinne Gal (bio), Alexandre Chapy (bio), Marielle Fau (bio), and Muriel Guaveia (bio)Dear Jonathan D. Moreno,Thank you for the honor of taking the time to comment on the work we do. It is very meaningful for us to be able to talk with you.We, too, see a big difference between philosophers and carers (in the broadest sense) who deal with the suffering of (...) patients and try to find methods to help them. But, if theory is at the service of the clinic, it becomes a formidable asset to refine our therapeutic methods and better understand what is happening to our patients.Indeed, patients suffering from psychosis, severe neurosis … are difficult to accompany and “recalcitrant to therapy by word alone” to use your terms. It is on this point that Ludwig Binswanger distanced himself from psychoanalysis. Binswanger ran a sanatorium in Switzerland (the Bellevue Clinic) and took in patients suffering from this type of psychological pathology. Aware that “the divan” and the analysis of the transference (unconscious) made little progress, he sought other ways of understanding his patients. The work of Edmund Husserl, the founder of the phenomenological movement, and then the work of Martin Heidegger1 fascinated him because they attempted to answer fundamental questions about being. The patients we work with ask themselves and us the same question: What is being? How can we feel existence within ourselves? Binswanger then created daseinsanalysis as an analysis of existence in which he was able to develop, among other dimensions, what he called “artists’ gestures,” including the possibility of (physical) contact with the patients. The body regained existential importance in the therapy.There are also strong similarities between psychiatric phenomenology and the work of Jacob Levy Moreno (2014, p. 214). We would like to quote your work: “ Nonetheless, there were links between them. Heidegger and J.L. shared preoccupation with personal authenticity and meaning [End Page 230] just enough to be considered part of the trends that led to postwar existentialism and fueled the new humanistic psychology, NTL, and encounter groups.”Jacob Levy Moreno’s working methods are much more powerful, allowing us to work as closely as possible with bodily feelings, since the body involved in the action is so present in psychodrama. Because, to this question of being posed by our patients, is linked the body as a felt, sensing body: the body that I am (which differs from the object body). Schizophrenic patients often express, and this is a terrible suffering, that they no longer feel anything, that they no longer feel they exist, that they no longer feel emotions or feelings. They do not know how to be in the world and with others. For us it is a fundamental symptom, as much as hallucinations. We link it to the loss of natural evidence (Blankenburg, 1991), the loss of contact with reality (Minkowski, 1929). Most of the time, in psychodrama, we “externalize” what the patients feel in different roles played by players, which allows us to work at the heart of each person’s difficulties in interaction. Trained in psychodrama by Anne Ancelin Schützenberger, we have to our credit a set of techniques to support the expression of psychodramatic play, a sort of “toolbox.” Depending on the context, the moment of the patient, our own state, we open our toolbox and try to choose and use the technique that best fits the needs of the game, of what we understand about the difficulty of the protagonist or the group. We do not do anything systematic, we are craftsmen. We have chosen to present a very simple game, without any technique used, except for the initial soliloquy, with a stabilized patient suffering from paucisymptomatic forms of schizophrenia. This is to demonstrate how the possibility of encounter, constitutive of existence, is a fundamental dimension of psychodrama.We thank you for the examples you have given us, they will be a source of inspiration and will fill our toolbox.To John Nolte:We thank you very much for your comments which honor us.The aim of the article was to present how the encounter in... (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in (...) the encounter. The implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)

This essay reflects on my academic work and personal experience as a bonsai enthusiast. Specifically, I plan to point out how Deleuzian theory informs my bonsai practice. First, I situate bonsai gardening as an encounter with the vegetal world. Then I consider this encounter as a form of Deleuzian becoming. Becoming reifies a transformation of the two species to become another version of itself—one that occurs between a bonsai and its carer. As a bonsai carer myself, I find becoming as (...) a precise illustration of my relationship with bonsais; hence, a vegetal encounter in the making. (shrink)

The many difficult ethical issues raised by family caregiving have been thrust into prominence by recent changes to hospital funding systems which encourage earlier discharge of patients. This paper investigates the sort of involvement that health professionals might justifiably have in family caregiving arrangements. It argues that the proper role of health professionals in protecting exhausted family caregivers can be clarified by considering some analogies with arguments about justifiable breaches of patient confidentiality. The paper also argues that health professionals who (...) seek to encourage neglectful adult children to help care for their sick parents should not do so by appealing to what a health professional takes those childrens’ filial duties to be. (shrink)

A number of dichotomies bedevil the concept of care, among them, the question of whether healthcare is posited on care or cure. On one side the question is whether it is enough to cure without caring (to cure is to care) and on the other whether caring is sufficient without a cure. This has received attention in recent years from feminists, particularly in the nursing profession, and from renewed interest in virtue ethics. This paper describes a study that was undertaken (...) to explore what a group of experienced United Kingdom based osteopaths understand care to be. Following interviews and transcript analysis using Grounded Theory, a number of themes were identified: Care as communication; Care as understanding the patient; Care as the therapeutic relationship; Care as action; Care as most beneficial outcome. The relationships between the various themes were explored and a ‘model of osteopathic care’ was proposed. Most of the respondents put beneficial outcome of some kind at the heart of their understanding but the process of caring was not regarded as particularly important on its own. In fact the expressed intention of osteopathic care was to facilitate a beneficial outcome. However, beneficial outcome was described in very broad terms and was not confined to the resolution of patients' presenting symptoms. In placing beneficial outcome at the heart of their model of care, respondents did not appear to recognize the dichotomy between care and cure, a finding that contrasts sharply with a number of nursing studies. The paper concludes by suggesting how it may be possible to differentiate between care and good practice. (shrink)

This article explores how paid domestic work is framed in state policies and discourses, drawing upon theoretical discussions on gender, welfare and global care chains. Based on a case study of the political debate on the `reconciliation of personal, family and work life' in Spain, the author argues that dominant policy frames relate gender inequality to women's unpaid domestic work and care, while domestic workers are essentially the invisible `other'. Empowering and disempowering frames are discussed; domestic workers are mainly constructed (...) as a solution to the care problem and only marginally as subjects and rights-holders. The overall aim is to examine how public policies legitimize and produce social inequalities related to gender, class and nationality. (shrink)

The care of terminally ill patients can be physically, emotionally as well as psychologically exhausting. In the era where everyone is busy with his or her hectic daily schedule, caring for someone diagnosed with HIV on her or his deathbed can be a daunting challenge. Caring for someone dying of AIDS does not only challenge the physical being but rather leaves the carer emotionally drained. What was of concern to the author was to see the struggle that the caregiver goes (...) through whilst caring for the sufferer. More often than not, pastoral care and counselling concentrate mainly on the pain and the suffering of the sick person. In the process, pastoral care loses sight of the agony, the emotional strain and, above all, the trauma of the caregivers in their search for answers as they care for the infected. This scenario has prompted the author to look into the theology of caring with an emphasis on pastoral care of the carers with a view of alleviating their emotional burden in caring for the HIV patients. (shrink)

Teaching on social work values is centrally important in social work education as a core aspect of underpinning knowledge in preparing students for practice. This paper describes an innovative project occurring within the first year of the degree in social work, where service users and carers have assisted students with their understanding of social work values. The positive contribution of service users and carers in facilitating students to make links between theory and practice is now well documented. Applying (...) this user perspective to the educational domain of values, however, is relatively uncharted territory given the challenges that have traditionally accompanied the teaching of values. Importantly, this paper describes the ?value talk? which occurred when first-year students sought further meaning from service-user and carer groups in their community settings following classroom teaching on values. The paper not only discusses the detailed preparations involved in the project but also the learning which resulted, drawing on the evaluation findings from the students and participating groups. Whilst the findings show that the students' understanding of social work values has been most significantly influenced by the contributions from service users and carers, it is recognized that further research is needed to monitor the longer term impact on social work students' practice after they qualify. (shrink)

This study will be of interest to anyone concerned with a critical appraisal of mental health service users’ and carers’ participation in research collaboration and with the potential of the postcolonial paradigm of cultural safety to contribute to the service user research (SUR) movement. The history and nature of the mental health field and its relationship to colonial processes provokes a consideration of whether cultural safety could focus attention on diversity, power imbalance, cultural dominance and structural inequality, identified as (...) barriers and tensions in SUR. We consider these issues in the context of state‐driven approaches towards SUR in planning and evaluation and the concurrent rise of the SUR movement in the UK and Australia, societies with an intimate involvement in processes of colonisation. We consider the principles and motivations underlying cultural safety and SUR in the context of the policy agenda informing SUR. We conclude that while both cultural safety and SUR are underpinned by social constructionism constituting similarities in principles and intent, cultural safety has additional dimensions. Hence, we call on researchers to use the explicitly political and self‐reflective process of cultural safety to think about and address issues of diversity, power and social justice in research collaboration. (shrink)

This article will explore some previously unrecognised legal and ethical issues associated with informal care-giving and criminal justice in the context of end of life decision-making. It was prompted by a recent case in Leeds Crown Court, which raises important issues for the people who care for their loved ones at home and for the criminal justice system more generally. Government figures estimate that over 5.2 million Britons are responsible for the care of relatives or loved ones. In order to (...) evaluate some of the ways in which they might find themselves exposed to unexpected criminal liability we have characterised this group as untrained carers who assume responsibility. (shrink)

Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability over time of potential predictive factors themselves is understudied. The current study aims to gain considerable insight into caregiving experiences and perceptions over time by using photovoice methodology to support semi-structured interviews. A case study, longitudinal design is taken with three female caregivers who provide detailed insight into their caregivers' experiences over a 12 month period. The interview transcripts were analyzed using IPA- Interpretative Phenomenological Analysis. (...) This innovative combination of methods resulted in the emergence of three related themes which included consuming the role, feeling consumed by the role, and letting go of the role. The idiographic approach taken allowed both within case differences to be examined over time, and also between carer differences to be highlighted. Implications of illness type and its characteristics, and of attachment and relationship quality with the care recipient were seen in terms of how and when the caregivers moved between the themes identified. The use of others' support or respite care is examined vis-a vis caregiver's own beliefs, emotions, relationship attachment and motivations to care. Caregivers self-efficacy beliefs also shifted over time and were influential in caregiver experience as the care recipient condition or needs changed. No previous studies have found that negative caregiving consequences are, in part, under volitional control and yet our data on the underlying reasons for consuming caregiving or allowing themselves to consume, would suggest this may in part be true. This is important because it suggests that interventions to support caregivers should address relational and motivational factors more fully. (shrink)

In this analysis I apply a Foucauldian approach to ethics to examine the politically prescribed moral and ethical character required of carers of aged persons at home in Australia and the role of nurses in shaping these behaviours. The work that spousal carers provide, although often founded on love and/or obligation, has been formalized through a variety of policy initiatives and technologies that serve to construct the moral approach they must adopt. This shaping of conduct at the most (...) personal level takes place through the application of codes of behaviour policed largely by nurses. These codes redefine the mode of coexistence between an aged husband and wife and propose a new form of relationship that is derived from and supports policies of the deinstitutionalization of care services for elderly persons. In this way modern carer policy has drawn on knowledge and governance of the self to produce a morality of caring that is both authoritative and scientific. (shrink)

In this article, I examine the legal position of those who perform caregiving work within the context of a cohabiting relationship through a novel relational vulnerability lens. I argue that the state, through privatising and devaluing caregiving labour, situates carers within an unequal and imbalanced relational framework, exposing them economic, emotional, and spatial harms. Unlike universal vulnerability, which is inherent and unavoidable, relational vulnerability can be avoided and reduced if the state were to acknowledge that humans are embodied and (...) relational rather than self-sufficient and rational. Law’s treatment of cohabiting carers reflects the state’s broader tendency to value economic self-sufficiency, while confining caregiving to the private family. I argue that the state has a duty to respond directly to relational vulnerability and should aim to make cohabiting carers resilient. Resilience must involve the provision of material resources but should also have a normative commitment to achieving autonomy and equality for those marginalised by law and state policies. (shrink)

For qualitative researchers seeking the perspectives of people with unusual characteristics or circumstances, compliance with expectations about participant anonymity can be difficult, if not impossible. In the age of internet communications and emerging research methodologies, traditional strategies require ongoing re-examination to ensure cohesion between a project’s ethical framework and its research practice. This paper reflects on the approach to informed consent used in a study with parent carers whose children had high-level support needs. A two-step process of written consent (...) was developed in response to concerns about the possible re-identification of these parents as a result of their highly individual circumstances. This approach acknowledged the potential for identification, and maximised participants’ agency in choosing the level of risk that they were comfortable to accommodate. The paper discusses the researcher’s and participants’ responses to the adapted consent process and recommends that researchers and ethics review committees remain open to the development of collaborative and innovative approaches that are also culturally and contextually relevant, to enable people to contribute perspectives that might otherwise be silenced by the very ethical frameworks that purport to protect their interests. (shrink)

This paper reflects on the complex methodological and ethical issues encountered in an exploratory research study on young carers in Zimbabwe. Several interviews were distressing for the young people interviewed and for the social worker conducting the interviews. The dilemmas raised by interview distress and subsequent withdrawal of co-operation are explored in reflections on the methodology and ethics of researching young people who care.

This paper reflects on the complex methodological and ethical issues encountered in an exploratory research study on young carers in Zimbabwe. Several interviews were distressing for the young peop...

The incidence of chronic illness is growing globally. As a result, there are fiscal and social implications for health delivery. Alongside the increased burden on health resources is the expectation that someone within the family will assume the responsibility of carer for those who are chronically ill. The expectation to assume the role of carer may be amplified for family members who are also nurses. Currently, there is little research that investigates the impact of nurses who are carers for (...) family with a chronic illness. Consequently, this qualitative study, based on face‐to‐face and telephone dialogue, was conducted using unstructured interviews. A phenomenological‐hermeneutic approach utilizing the hermeneutic circle was employed to understand the meaning of the transcriptions. Hermeneutic phenomenology inspired by Heideggerian philosophy was used as a framework to clarify themes and build ways of understanding the phenomenon of ‘Being’ a nurse and a family carer. Themes identified in the analysis of the study included a personal world, a professional world and a practical world. This paper explicates the findings from examination of the personal world of ‘Being’ a nurse who is also a family carer. Analysis revealed there were three facets to this way of ‘Being’: a shared experience, a caring experience and a fraught experience. The findings of the study disclosed that participants were informed by experiences that were both enriching and conflicting. These insights can enlighten healthcare professionals to the tensions which exist for nurses who care for family so that these considerations are incorporated into individualized and effective family‐centred care. (shrink)

Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory (...) analysis of half of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population. (shrink)

The paper points out three serious problems in Ruud ter Meulen’s view of solidarity and of its role in healthcare ethics. First, it is not clear whether and to what extent ter Meulen expects normative concepts to be rooted in existing social practices: his criticism of liberal theories of justice seems to imply a different view on this issue than his implicit assumption that normative concepts are independent from social and historical trends. Second, it is not clear at which level (...) his notion of solidarity is meant to be applied: does it provide principles for individuals or for institutions? Nor is it clear at what level of generality it should work: is it meant for healthcare institutions or for states, for citizens or for healthcare practitioners? Third, it is not at all clear how the communitarian and the universalist aspirations in his conception of solidarity can be reconciled. In light of such difficulties it is argued that within philosophical discourse solidarity can be a useful notion only if it can be clearly distinguished from existing and commonly used ethical concepts. Three examples of such narrow and specific uses of solidarity are presented. Finally, a sceptical view of confining the work of applied philosophers to articulating normative concepts is put forward and an alternative view of blending empirical and philosophical analysis is proposed. This vision of field philosophy requires serious attention and careful understanding of the circumstances and constraints within which normative recommendations operate. It is suggested that such a modest and empirically grounded understanding of normative work is a better way of honouring the belief that philosophy is rooted in social institutions and in complex webs of relations. (shrink)

Excessive alcohol consumption can have adverse effects on health, and patients who suffer from alcohol use disorders are subject to much stigmatization. Nurses are often the first point of contact when patients enter the acute medical unit, and it is pivotal that this contact establishes the basis for future collaboration. The aim of this study is to elucidate nurses’ lived experience of providing care to patients suffering from alcohol use disorders. This present study has a qualitative research design, anchored in (...) phenomenological and hermeneutical methodology as described in reflective lifeworld research. Ten in‐depth, open‐ended interviews with nurses working in an acute medical unit were conducted. The analysis showed that providing care to patients suffering from alcohol use disorders was a highly complex task to accomplish. This required the nurse to engage with the patient in a sensitive cooperation in order to be dealing with the intricacy of the patient's life situation and balancing care between standardized procedures and the complexity of the patients. Further, a two‐sided feeling of responsibility emerged: a professional responsibility and a personal responsibility causing the provision of care as being caught between feelings of despondency and resignation. Nurses lack opportunities for being creative in determining how to provide care; instead, patients' perspectives of well‐being should be taken into account and should guide the provision of a meaningful care. Nurses must call for opportunities to deviate from the firmly established procedures restraining the care of this population. (shrink)

Many Turkish people migrated to Germany between 1955 and 1975. This study was carried out in Göttingen, Germany. Fifty Turkish people (described as patients) were asked about the care they had received from German health care personnel, and 50 German nurses and 50 German physiotherapists were questioned about care they had given to Turkish patients. Significant findings were the needs of the Turkish patients for good communication, physical contact and understanding of their culture-based expressions of illness. The German nurses and (...) physiotherapists expressed the need for language barriers to be minimized and for education in the specific culture of Turkish patients. Our findings are discussed from an ethical viewpoint. The International Council of Nurses’ code of ethics is used to guide the ethical debate about the findings within the context of transcultural and multicultural care. Suggestions for better transcultural health care paradigms are made for relating to patients from different cultures when patients and care providers have little understanding of each other’s needs and expectations. (shrink)

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he (...) has the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care. (shrink)

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms (...) the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects. (shrink)

Wars and armed conflicts have a devastating impact at the economic, social, and individual level. Millions of children and adolescents are forced to bear their disastrous consequences, also in terms of mental health. Their effects are even more complicated when intertwined with those of other disasters such as the current COVID-19 pandemic. To help them face such adverse events, lay adults can be supported by psychoeducational interventions involving simple tools to assist children and adolescents emotionally. Hence, we planned and implemented (...) two public communication campaigns concerning wars to support adult carers such as parents, teachers, educators, psychologists, first responders, and others interested in young people’s wellbeing. We developed psychoeducational materials to help children and adolescents cope with negative emotions related to indirect and direct exposure to wars. This study had the objective to identify the content for two pamphlets, testing their comprehensibility, usability, and utility, and monitoring their dissemination. First, based on classifications of coping strategies and on a previous campaign about COVID-19 pandemic, we decided to include in the psychoeducational materials basic information on news about wars and common reactions to wars, respectively; on emotions that might be experienced; and on coping strategies for dealing with negative emotions. For the first pamphlet, we identified the strategies involving 141 adults. They completed an online survey with open-ended questions concerning ways to help children and adolescents cope with negative emotions associated with the Russia-Ukraine war. For the second pamphlet, we selected the contents based on Psychological First Aid manuals. Through content analyses, we chose 24 strategies. Second, data gathered with 108 adults who had consulted the psychoeducational materials supported their comprehensibility, usability, and utility. Third, we monitored the visibility of the campaigns after the release of the pamphlets, using Google Analytics™ data from the HEMOT® website through which we disseminated them. To conclude, our findings supported the comprehensibility, the usability, and the utility of the two pamphlets, to be disseminated as psychoeducational materials in the early phase of a disaster. (shrink)

Despite devoting their time to another person’s needs, many carers paradoxically experience guilt during their caregiving tenure concerning whether they are providing enough care. When discussing the “enough” of anything, what is at stake is that thing’s quantification. Given that there are seemingly no quantifiable units of care by which to measure the role, concerns regarding whether enough care is being provided often focus on what constitutes enough time as a carer. In exploring this aspect of the carer’s experience, (...) two key parameters emerge; guilt, and, quantified time. The guilt that carers report regarding whether they devote “enough time” to their caring responsibilities can be examined through Henri Bergson’s philosophical conception of quantification. By integrating contemporary analyses of carers’ guilt from the social sciences, most significantly via the sociology of Rebecca Olson, the relationship between quantified time and guilt becomes apparent. A quantified conception of time frames the assumption that spending more time on caregiving will reduce the amount of guilt felt by a carer. However, whilst care is structured according to quantified, clocked and calendared time, there are not comparable, quantifiable parameters for guilt. This means that suppositions of an inverse relationship between how much time one spends giving care, and how much guilt they will feel in terms of their caregiving, are problematic. These insights become relevant to health care policies via a coherence with calls to make the role of unpaid, caregiving, labour time more visible, and by explaining how understanding quantified time can help policies guide how caregivers negotiate guilt. (shrink)

This article considers some of the ethical implications of social workers undertaking more direct work with carers and children in the field of child protection. Following the UK government's near-complete acceptance of the recommendations of the Munro report into child protection in England and Wales, it seems inevitable that direct work will become more and more a feature of practice for child protection social workers. Whilst this development is almost universally welcomed, this should not disguise the fact that direct (...) work can be fraught with ethical difficulties and challenges. This article explores in general terms three of the main potential areas of difficulty?the use of video-recording, informed consent and interpreting the meaning of direct work?before considering some specific responses to these in the context of a particular skills-based training intervention to improve the ability of child protection social workers to engage in direct work. (shrink)

BackgroundThe Quality of Life in Life-threatening Illness-Family Carer Version has been proven to be a brief, reliable, and valid instrument for measuring the caregivers’ QOL in western cultures. However, whether it is suitable to be used in Chinese culture is unclear. This study aimed to test the reliability and validity of the Chinese version of.Materials and methodsA total of 202 family caregivers of advanced cancer patients from Fujian Provincial hospice care center were investigated using the Chinese version of QOLLTI-F-CV from (...) September 2019 to August 2020. The questionnaire was evaluated using an exploratory structural equation model. Its psychometric properties were examined in terms of factor structure, convergent validity, discriminant validity, internal consistency, and test–retest reliability.ResultsDifferently from the seven-domain original QOLLTI-F, its Chinese version had only three domains including caregiver’s self-feelings, caregiver’s stress, and caregiver’s outlooks. The total variance explanation rate for the domains was 55.4%. The Chinese version fitted well with the structure model ; its comparative fit index was 0.971; Tucker–Lewis index was 0.954; and the root mean square error of approximation was 0.072. The success rate of its convergent and discriminant validity calibration test was 100%. Its Cronbach’s alpha coefficient of the whole questionnaire and three domains was from 0.650 to 0.874, and test–retest reliability was 0.836.ConclusionThe 3-domain QOLLTI-F-CV is a valid and reliable instrument for identifying QOL concerns of FCs of advanced cancer patients in China. The refactoring structure optimally matches Chinese culture and value system well. (shrink)

Feminist literature on care has extensively addressed inequalities that cut across the social categories of gender, class and ethnicity in relation to care work. One category that has received less attention in theories of caregiving so far is age. Built on the feminist literature of care and taking young (female) carers as its subject matter, this article tackles age as a third social category of intersectional inequalities along with class and gender. Firstly, through dealing with Nancy Fraser’s justice framework (...) of participatory parity, it is argued that addressing the intersectional inequalities that young (female) carers face necessitates a justice framework that contemplates both the distributional and recognitional aspects of care. In this respect a dual conceptualisation of care is presented – both as a social good and a social process. Secondly, a critical analysis will be presented of the elements of the justice framework of Fraser, where the notion of subordinated status will be related to the identities of young carers. Lastly, the normative framework participatory parity will be discussed in relation to the politics of need, as care practices define the needs of young carers that are contextualised in the care processes, but also in a childhood space. (shrink)

This article explores notions of intimacy in the caring context. The aspects discussed are: privacy and intimacy; intimacy as emotional and/or physical closeness; intimacy as touch; sexual intimacy and normal ageing; sexual intimacy and patients suffering from dementia; and intimacy as trust. Examples are given and problems are identified, with reflection on the attitude and behaviour of the carer. It is suggested that when trying to make moral decisions in concrete situations it is imperative that the carer is aware of (...) the values upon which his or her own thinking is based. It is argued that the guiding principle should be the moral assumption that the carer’s responsibility can never be interpreted as a right to disregard the wishes of the patient. Hence, the key word in daily care is ‘respect’. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in (...) the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)

In his recent paper, Adam Cureton presents a compelling case in support of the right of parents with disabilities to conceive and raise children. Cureton argues that caring for a parent with a disability may be beneficial for a child and the creation of a child with the intention of him/her being a carer for his/her disabled parent is objectionable. This response to Cureton's paper will focus on the creation of children with the purpose of them being carers for (...) their disabled parents. I will respond to Cureton on three counts. First, I propose that claims and are incompatible. Second, I will argue that even from a Kantian perspective it is not clear that creating a child as a carer is objectionable. Third, I will argue more broadly that the intentions with which parents bring children into the world are not predictive of the concern parents should show their children once they come into existence. (shrink)

People in rich countries increasingly rely on paid workers to care for many of their health and personal care needs. We expect that, in most families, love or filial piety underpin caring relationships, and that these moral bonds ensure good quality care. If paid caring relationships are not underpinned by love, what moral bonds can they rely on? Exploring contract, professional duty, and compassionate gift as normative “resources” for good paid care, I conclude that we cannot expect paid carers (...) to reproduce an idealized private sphere. Instead we can expect “good enough” care, supported by a range of normative resources. (shrink)