Relationships and burden: An empirical-ethical investigation of lived experience in home nursing arrangements.

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

Ethical Issues in Family Care Today.

The abstract consideration of ethical questions in family and informal caregiving might rightly be criticized for ignoring the lived experience of people. This chapter seeks to avoid such oversight by reflecting on ethical issues in family care in a way that is based on careful social scientific inquiry into the well-being of caregivers. The chapter draws on our research and experience in working with family caregivers, both professionally and personally. We step back from a practical concern with policies to support the well-being of caregivers to consider ethical issues associated with their typically hidden role. The chapter begins by noting the growing reliance on family care today. It proceeds to outline the dynamic experience of moving into and out of the caregiver role, before discussing key ethical issues associated with family care. Many of these stem from the risk that caregivers can come to share in the reduced circumstances and vulnerability of those for whom they care. Critical ethical issues are related to the typically "unboundaried" responsibility of family caregivers for the well-being of the cared-for person, something that can be contrasted with the more boundaried and intermittent responsibility of formal caregivers. Additionally, all too often, family caregivers encounter situations where their responsibilities exceed their capacities, but where a choice to not provide care will result in harm to the cared-for person. In discussing these issues, this chapter seeks to make the case for developing more responsive forms of support that promote positive benefits for both caregivers and care recipients.

Ethical aspects of using GPS for tracking people with dementia: recommendations for practice.

BACKGROUND: Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines. METHODS: Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia. RESULTS: The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought. CONCLUSIONS: The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.

Ethics of using assistive technology in the care for community-dwelling elderly people: an overview of the literature.

OBJECTIVES: This article provides an overview of the international literature on the most important ethical considerations in the field of assistive technology (AT) in the care for community-dwelling elderly people, focused on dementia. METHOD: A systematic literature review was performed. RESULTS: A total of 46 papers met the inclusion criteria. Three main themes were found. The first theme, personal living environment, involves the subthemes privacy, autonomy and obtrusiveness. The second theme, the outside world, involves the subthemes stigma and human contact. The third theme, the design of AT devices, involves the subthemes individual approach, affordability and safety. The often referred to umbrella term of 'obtrusiveness' is frequently used by many authors in the discussion, while a clear description of the concept is mostly absent. CONCLUSION: When it comes to AT use in the care for elderly people living at home, ethical debate appears not to be a priority. The little discussion there relies heavily on thick concepts such as autonomy and obtrusiveness which seem to complicate the debate rather than clarify it, because they contain many underlying ambiguous concepts and assumptions. Most encountered ethical objections originate from the view that people are, or should be, independent and self-determinant. It is questionable whether the view is correct and helpful in the debate on AT use in the care for (frail) elderly people. Other ethical approaches that view people as social and reciprocal might be more applicable and shed a different light on the ethical aspects of AT use.

Beware of Discharge: A Case Exploring the Ethics of Societal Expectations Placed on Families at Hospital Discharge.

As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.

Home pediatric compassionate extubation: bridging intensive and palliative care.

Compassionate home extubation for pediatric patients is a topic that seldom appears in the literature and is of unknown clinical importance. However, standards in pediatric intensive care unit (PICU) and among pediatric critical care physicians regarding end-of-life decisions are changing, including where and when patient extubation occurs. The authors' hospice recently consulted on an infant with spinal muscular atrophy in the PICU requiring mechanical ventilation, for whom further life-sustaining care was deemed futile. In consultation with the family, nursing staff, physicians, and the ethics committee, and following protocol guidelines, arrangements were made for this infant and his parents to be transported home. Once comfortable with his family, a small amount of lorazepam was given and the endotracheal tube removed. The infant died quietly about 20 minutes later. This case prompted the authors to review the current state of published articles covering this topic, suggest a protocol for implementing home extubation, realize imposed barriers, and discuss potential solutions. A well-developed plan for home extubation procedures may improve interactions with PICU and hospice services and at the same time provide additional choices for parents and patients wishing to maximize end-of-life quality outside the hospital setting.

Nurses' experiences of caring for their own family members.

There is a wealth of literature that addresses the needs of informal caregivers and the needs of health professionals caring for someone with a life-threatening illness. However, there is a paucity of research that deals with nurses who are caring for their own relative who has a life-threatening illness. This qualitative study explores the information needs, support systems available, and the impact that this experience has upon the nurse's quality of life. Individual semi-structured interviews were transcribed and analysed using interpretative phenomenological analysis (Smith and Osbourne, 2003). Four superordinate themes emerged from the data: quality of life, personal and professional boundaries, disempowerment and positive aspects to the role. These themes were then linked to validated models of caregiving (Caron and Bowers 2003; Sherwood et al, 2004) to further explore their impact upon the nurse in his/her role as family carer. This study has established that nurses providing care for their own relatives have specific needs with regard to their dual role as a health professional and family carer. In understanding these specific needs, it may be possible to provide a more effective and equal level of support for these individuals. Implications for practice and future research are discussed.

Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home.

The present paper provides an overview of the application of the key ethical issues which arose in an EU-funded research, technology and development project, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). The primary aim of the ACTION project was to support frail older people and their family carers in their own homes across England, Northern Ireland, the Republic of Ireland, Sweden and Portugal via the use of user-friendly information and communication technology. Ethical guidelines were developed in the project and used as a tool to enable the multidisciplinary project team to increase their awareness of ethical issues in their everyday work, and to act as a useful ethical framework for regular team discussions at international and local meetings across the partner countries. A range of ethical issues arose during the field-study phases of the project when the ACTION services were introduced into a number of families' own homes. It can be argued that these ethical issues reflect factors relating both to the application of research into practice, as well as those relating more directly to the use of new technology by families and care professionals. Key issues centre upon the ethical concepts of autonomy, independence, quality of life, beneficence, non-maleficence and justice, and more specifically, on ethical issues of security, privacy and confidentiality, increased expectations, and withdrawal of the service. This paper is intended to facilitate dialogue and debate in the area of enabling (assistive) technology in home care for older people and their families.

Witnessing social injustice downstream and advocating for health equity upstream: "the trombone slide" of nursing.

Two aspects of a study examining the congruence of critical caring theory with public health nursing practice are reported. They confirm a congruence between expert public health nursing practice and the theory in terms of (a) a caring/social justice ethics that underpins practice and (b) the relevance to their practice of the carative health promoting process of contributing to the creation of supportive and sustainable physical, social, political, and economic environments. Public health nurse participants encountered many barriers to a practice underpinned by a caring/social justice ethic, some of which limited their moral agency.

Growth-attenuation therapy: principles for practice.

Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for similarly affected children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children with profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.

Confidentiality or continuity? Family caregivers' experiences with care for HIV/AIDS patients in home-based care in Lesotho.

In the context of poor access to antiretroviral therapies in sub-Saharan Africa, the minimum treatment package intended to treat opportunistic infections common with HIV infection is inadequate but appealing, since it presumes universal coverage of medical care for patients living with HIV and AIDS. The overall objective of this study was to analyse the challenges which family caregivers encountered in home-based care when they tried to access medical treatment for home-based AIDS patients in the context of confidentiality and limited medical care. A qualitative study using in-depth interviews with a sample of 21 family caregivers -16 females and 5 males aged between 23 and 85 years was conducted with the assistance of health personnel in two hospitals in Lesotho. Using the concept of continuity of care, this article discusses the experiences of family caregivers about home care, including their experiences of adherence to confidentiality by health care professionals and non-disclosure of AIDS as the context of illness, the circumstances under which the caregivers initiated caregiving and sought medical care, and how these factors could be stressors in caregiving. There was continuity of care where the caregivers obtained hospital support. However, when confidentiality was adhered to the caregivers were frustrated by lack of information, disrupted treatment, exclusion of their perspectives in medical care, failure to secure hospitalisation, ambiguous goals and non-responsiveness, so that continuity of care was jeopardised. Thus it can be concluded that professional-assisted disclosure benefited the patients because it facilitated continuity of care through the caregivers.