Family caregivers' involvement in caring for frail older family members using welfare technology: a qualitative study of home care in transition.

BACKGROUND: Demographic, economic and organisational changes challenge home care services. Increased use of welfare technology and involvement of family members as co-producers of care are political initiatives to meet these challenges. However, these initiatives also involve ethical aspects. METHOD: The aim of this qualitative study was to explore family caregivers' experience of involvement and possible ethical aspects of caring for frail older family members receiving home care services supported by welfare technology. This study used a qualitative explorative and descriptive design within a phenomenological-hermeneutical approach. Sixteen interviews with eighteen family caregivers were conducted. The participants were sons, daughters, siblings and spouses of frail older people receiving home care services with the support of welfare technology. Data were analysed using reflexive thematic analysis. The COREQ checklist was used. RESULTS: The analysis led to five main themes. First, the family caregivers' experienced caring as meaningful but increasingly demanding concerning the changes in home care services. Second, they experienced a change in relationships, roles, tasks, and responsibilities related to more family involvement and the use of welfare technology. This also challenged their sense of autonomy. However, welfare technology helped them deal with responsibilities, especially safety. The family caregivers requested early involvement, dialogue for care decisions, more cooperation and support from health professionals. Third, the participants experienced that health professionals decided the conditions for co-production without discussion. Their need for information and knowledge about welfare technology were not met. Fourth, the family caregivers felt that the health professionals did not adequately recognise their unique knowledge of the care receiver and did not use this knowledge for customising the welfare technology to the care receiver and their families. Fifth, the family caregivers expressed concern about service and welfare technology inequality in home care services. CONCLUSIONS: Co-production in the involvement of family caregivers in care is still not an integral part of home care service. Welfare technology was appreciated, but the family caregivers called for early involvement to ensure successful and safe implementation and use. More attention needs to be given to ethical concerns about the change in relations, transfer of tasks and responsibility, and risk of inequality.

Visibility of nursing in policy documents related to health care priorities.

AIM: To explore the visibility of nursing in policy documents concerning health care priorities in the Nordic countries. BACKGROUND: Nurses at all levels in health care organisations set priorities on a daily basis. Such prioritization entails allocation of scarce public resources with implications for patients, nurses and society. Although prioritization in health care has been on the political agenda for many years, prioritization in nursing seems to be obscure in policy documents. METHODOLOGY: Each author searched for relevant documents from their own country. Text analyses were conducted of the included documents concerning nursing visibility. RESULTS: All the Nordic countries have published documents articulating values and criteria relating to health care priorities. Nursing is seldom explicitly mentioned but rather is included and implicit in discussions of health care prioritization in general. CONCLUSION: There is a need to make priorities in nursing visible to prevent missed nursing care and ensure fair allocation of limited resources. IMPLICATIONS FOR NURSING MANAGEMENT: To highlight nursing priorities, we suggest that the fundamental need for nursing care and what this implies for patient care in different organisational settings be clarified and that policymakers explicitly include this information in national policy documents.

Resource allocation and rationing in nursing care: A discussion paper.

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues - missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care left undone - suggesting that nurses, in certain contexts, are actively engaged in rationing care - in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care - despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource.

Who is the mother? Negotiating identity in an Irish surrogacy case.

An Irish surrogacy case from 2013 illustrates how negotiations of the mother's identity in a given national and legal context are drawing on novel scientific perspectives, at a time when the use of new biotechnological possibilities (such as IVF) is becoming more widespread and commonplace. The Roman dictum, 'Mater Semper Certa Est' (the mother is always certain, i.e. proven by giving birth) is contested by the finding of this Irish court, in which the judge made a declaration of parentage stating that the genetic parents of twins born using a surrogate (the mother's sister) were the parents. This article critically examines the normative background assumptions involved in this ruling. It will argue that the particular deployment of arguments from genetics and epigenetics in this court case produces a naturalization of the mother's identity that is inherently reductive. A second surrogacy case is also examined, this time regarding the rights of a woman of Irish nationality to receive paid maternity leave or paid leave similar to adoptive leave after the birth of her daughter to a surrogate mother in the US state of California. This case, which was brought to the Equality Tribunal in Ireland and decided by the Court of Justice of the European Union, is used to illustrate the possible ramifications of conflicting definitions of motherhood in the legal system. In concluding, this article argues for the development and deployment of a more complex understanding of the evolving state of motherhood within the courts, in keeping with developments in the IVF industry and the various new mother-relations it makes possible.

The silencing of Kierkegaard in Habermas' critique of genetic enhancement.

The main purpose of this paper is to draw attention to an important part of Habermas' critique of genetic enhancement, which has been largely ignored in the discussion; namely his use of Kierkegaard's reflections on the existential conditions for becoming one-self from Either/or and the Sickness unto Death. It will be argued that, although Habermas presents some valuable and highly significant perspectives on the effect of genetic enhancement on the individual's self-understanding and ability to experience him- or herself as a free and equal individual, he does not succeed in working out a consistent argument. The claim is that he fails to explain how the existential analysis is related to his reflections on the sociological and psychological impacts of genetic enhancement in the realm of communicative action. It is this lack of theoretical clarity, which seems to render Habermas vulnerable to some of the critique which has been raised against his theory from a number of different scientific disciplines and areas of research. Hence, the first part of the paper provides some examples of the nature and variety of this critique, the second part presents Habermas' own critique of genetic enhancement in the context of a dispute between so-called 'liberal' and 'conservative' arguments, and finally, the third part discusses the limits and possibilities of his position in a future debate about genetic enhancement.

[The physician's role elucidated through literature and philosophy]. / Laegerollen belyst gennem litteratur og filosofi.

The primary aim of the described course at the Faculty of Health Sciences, Aarhus University, is to provide the medical student with an opportunity to reflect on the preconditions to being a "good physician" through the reading of literature and philosophy. The course gives the student a number of analytical, methodological and practical tools for understanding and handling the demands of his or her future career as a health professional.