Home-Based Telemental Health: A Proposed Privacy and Safety Protocol and Tool.

Objectives: To describe the development of a protocol and practical tool for the safe delivery of telemental health (TMH) services to the home. The COVID-19 pandemic forced providers to rapidly transition their outpatient practices to home-based TMH (HB-TMH) without existing protocols or tools to guide them. This experience underscored the need for a standardized privacy and safety tool as HB-TMH is expected to continue as a resource during future crises as well as to become a component of the routine mental health care landscape. Methods: The authors represent a subset of the Child and Adolescent Psychiatry Telemental Health Consortium. They met weekly through videoconferencing to review published safety standards of care, existing TMH guidelines for clinic-based and home-based services, and their own institutional protocols. They agreed on three domains foundational to the delivery of HB-TMH: environmental safety, clinical safety, and disposition planning. Through multiple iterations, they agreed upon a final Privacy and Safety Protocol for HB-TMH. The protocol was then operationalized into the Privacy and Safety Assessment Tool (PSA Tool) based on two keystone medical safety constructs: the World Health Organization (WHO) Surgical Safety Checklist/Time-Out and the Checklist Manifesto.Results: The PSA Tool comprised four modules: (1) Screening for Safety for HB-TMH; (2) Assessment for Safety During the HB-TMH Initial Visit; (3) End of the Initial Visit and Disposition Planning; and (4) the TMH Time-Out and Reassessment during subsequent visits. A sample workflow guides implementation. Conclusions: The Privacy and Safety Protocol and PSA Tool aim to prepare providers for the private and safe delivery of HB-TMH. Its modular format can be adapted to each site's resources. Going forward, the PSA Tool should help to facilitate the integration of HB-TMH into the routine mental health care landscape.

Ethical sensitivity and perceptiveness in palliative home care through co-creation.

BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient's quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients' and their relatives' needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. AIM: The aim of this study was to explore nurses' experiences of caring encounters and co-creation in palliative home care from an ethical perspective. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. FINDINGS: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient's wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. DISCUSSION: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses' ethical competence. CONCLUSION: Patients' dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients' perspectives should be the focus of future research.

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare.

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.

Ethical issues related to the use of gerontechnology in older people care: A scoping review.

BACKGROUND: Demographic trends indicate growth of population aged 65 and older in Western countries. One of the greatest challenges is to provide high-quality care for all. Technological solutions designed for older people, gerontechnology, can somewhat balance the gap between resources and the increasing demand of healthcare services. However, there are also ethical issues in the use of gerontechnology that need to be pointed out. PURPOSE: To describe what ethical issues are related to the use of gerontechnology in the care of community-dwelling older people. METHODS: A scoping review was performed to identify and analyse studies concerning ethical issues when using gerontechnology in the home care of older people. The literature search was limited to studies published after 1990 and addressed to the electronic databases CINAHL, PubMed, Cochrane, Medic, IEEE Explore and Web of Science. The search was performed in July-August 2018. Data from empirical studies were analysed using thematic analysis. ETHICAL CONSIDERATIONS: This scoping review was conducted in accordance with good scientific practice. The work of other researchers was respected and cited appropriately. RESULTS: A total of 17 studies were identified. Two main themes were found. 'Balancing between the benefits of using gerontechnology and the basic rights of older people', consisted of the subthemes safety, privacy and autonomy. The other main theme, 'Gerontechnology as a risk of insecurity for older people', included the subthemes fear of losing human contact and concern and fear. Surveillance and monitoring technologies were mainly studied. CONCLUSION: These results suggest that there may be ethical issues related to the use of gerontechnology and they must therefore be taken into consideration when implementing technology in the care of community-dwelling older people.

A feminist phenomenology on the emotional labor and morality of live-in migrant care workers caring for older people in the community.

BACKGROUND: Global societal changes, such as increasing longevity and a shortage of family caregivers, have given rise to a popular worldwide trend of employing live-in migrant care workers (MCWs) to provide homecare for older people. However, the emotional labor and morality inherent in their interactions with older people are largely unknown. The aim of the present study is to understand the corporeal experiences of live-in migrant care workers in the delivery of emotional labor as seen in their interactions with older people by: (1) describing the ways by which they manage emotional displays with older people; and (2) exploring their morality as enacted through emotional labor. METHODS: We performed a secondary analysis drawing on feminist phenomenology to thematically analyze data from interviews with 11 female MCWs. Follow-up interviews were conducted with 10 participants. The participants had two to 15 years of experience in caring for older people in their homes in Hong Kong. RESULTS: Performing emotional labor by suppressing and inducing emotions is morally demanding for live-in MCWs, who experience socio-culturally oppressive relationships. However, developing genuine emotions in their relationships with older people prompted the MCWs to protect the interests of older people. Through demonstrating both fake and genuine emotions, emotional labor was a tactic that live-in MCWs demonstrated to interact morally with older people. CONCLUSIONS: Emotional labor allowed live-in MCWs to avoid conflict with older people, and to further protect their own welfare and that of others. This study highlights the significance of empowering live-in MCWs by training them in ways that will help them to adapt to working conditions where they will encounter diverse customs and older people who will develop an increasing dependence on them. Thus, there is a need to develop culturally appropriate interventions to empower live-in MCWs to deliver emotional labor in a moral manner.

Meeting in a 'free-zone': Clinical ethical support in integrated heart-failure and palliative care.

BACKGROUND: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams. OBJECTIVE: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare. METHOD: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis. RESULTS: The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints. CONCLUSION: Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.

[Withdrawal of chronic mechanical ventilation at home: coordination, organisation and implementation]. / Beëindiging van chronische beademing in de thuissituatie.

In the Netherlands, an increasing number of patients are dependent on domiciliary ventilation. General practitioners and elderly care physicians caring for these patients are increasingly confronted with problems related to chronic ventilation. Most patients die due to progression of respiratory failure, however, patients may ask their physician to electively withdraw their assisted ventilation. According to the Dutch Medical Treatment Contracts Act, withdrawal of domiciliary ventilation at the request of a patient constitutes normal medical care and concerns neither the assessment of, nor the compliance with, a request for euthanasia. Currently, there is no Dutch guidance or guideline containing practical advice regarding the medical, ethical, organisational and supportive aspects of withdrawal of domiciliary ventilation. This paper addresses the planning necessary for the patient and between treating professionals, for the organisation and implementation of withdrawal of domiciliary ventilation at the patient's home, a nursing home or hospice.

Home Extubation in a Neonate.

End-of-life care for many infants involves the withdrawal of mechanical ventilation. Usually this takes place in the hospital environment, but sometimes parents request that their infant dies at home. Facilitating this has significant practical and resource implications and raises both logistical and ethical questions. In this article, we report a neonatal case involving home extubation, explaining the processes involved as well as providing an ethical context.

Maintaining Professional Nursing Boundaries in the Pediatric Home Care Setting.

Pediatric home care nurses often become a valuable part of the family unit, and this can blur the professional boundary between nurse and patient. Home care professionals must educate themselves as well as patients and family members about the integrity of their professional relationship, and prevent boundary crossing before it occurs. This article highlights four case studies that describe situations of boundary crossing that could have been managed differently. Strategies for maintaining professional boundaries with patients and their families are provided.

ETHICS OF SMART HOUSE WELFARE TECHNOLOGY FOR OLDER ADULTS: A SYSTEMATIC LITERATURE REVIEW.

BACKGROUND: The University College of Southeast Norway has an on-going project to develop a smart house welfare system to allow older adults and people with disabilities to remain in their homes for as long as they wish in safe, dignified, living conditions. OBJECTIVES: This article reviews reported ethical challenges to implementing smart houses for older adults. METHODS: A systematic literature review identified twenty-four articles in English, French, Spanish, and Norwegian, which were analyzed and synthesized using Hofmann's question list to investigate the reported ethical challenges. RESULTS: Smart houses offer a promising way to improve access to home care for older adults and people with disabilities. However, important ethical challenges arise when implementing smart houses, including cost-effectiveness, privacy, autonomy, informed consent, dignity, safety, and trust. CONCLUSIONS: The identified ethical challenges are important to consider when developing smart house systems. Due to the limitations of smart house technology, designers and users should be mindful that smart houses can achieve a safer and more dignified life-style but cannot solve all the challenges related to ageing, disabilities, and disease. At some point, smart houses can no longer help persons as they develop needs that smart houses cannot meet.

AN INTEGRATED PERSPECTIVE ON THE ASSESSMENT OF TECHNOLOGIES: INTEGRATE-HTA.

OBJECTIVES: Current health technology assessment (HTA) is not well equipped to assess complex technologies as insufficient attention is being paid to the diversity in patient characteristics and preferences, context, and implementation. Strategies to integrate these and several other aspects, such as ethical considerations, in a comprehensive assessment are missing. The aim of the European research project INTEGRATE-HTA was to develop a model for an integrated HTA of complex technologies. METHODS: A multi-method, four-stage approach guided the development of the INTEGRATE-HTA Model: (i) definition of the different dimensions of information to be integrated, (ii) literature review of existing methods for integration, (iii) adjustment of concepts and methods for assessing distinct aspects of complex technologies in the frame of an integrated process, and (iv) application of the model in a case study and subsequent revisions. RESULTS: The INTEGRATE-HTA Model consists of five steps, each involving stakeholders: (i) definition of the technology and the objective of the HTA; (ii) development of a logic model to provide a structured overview of the technology and the system in which it is embedded; (iii) evidence assessment on effectiveness, economic, ethical, legal, and socio-cultural aspects, taking variability of participants, context, implementation issues, and their interactions into account; (iv) populating the logic model with the data generated in step 3; (v) structured process of decision-making. CONCLUSIONS: The INTEGRATE-HTA Model provides a structured process for integrated HTAs of complex technologies. Stakeholder involvement in all steps is essential as a means of ensuring relevance and meaningful interpretation of the evidence.

Smart homes, private homes? An empirical study of technology researchers' perceptions of ethical issues in developing smart-home health technologies.

BACKGROUND: Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology's potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought to contribute to dialogue between ethics and the engineering community. METHODS: Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants' consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. RESULTS: Two overarching themes emerged: in 'Privacy', researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In 'Choice', researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. CONCLUSIONS: The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of (bio)ethics as a critical partner to smart-home engineering.

An ethical analysis of a home visit case study.

This article will explore a clinical case study of a home visit carried out by the case manager nurse. In this case, we will discuss the dilemma of finding the balance between autonomy and beneficence from the perspective of principlist ethics, virtue ethics and the 'ethics of care'. The main conflict in this case study deals with all proposals are unsuitable and it is not necessary for a nurse to pay him a home visit, whereas for the healthcare system it is considered necessary. We could conclude that, during the home visit, the case manager aspires to achieve excellence, and throughout his clinical relationship with Francesc, searches for a series of virtues, respecting certain fundamental principles. In this way, the case managers ensure that Jaume's care is more humanised. The case has been anonymised and confidentiality maintained.

Might constraint be compatible with care? Home care as a situational ethics.

Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people's needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally-based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people's homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing 'constraint in practice': a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear-cut distinction between technical gestures and moral values. Having outlined the characters of such a 'situational ethics', the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to 'maintaining the trouble' in care practices.