Caregivers' Perspectives on Ethical Challenges and Patient Safety in Tele-Palliative Care: An Integrative Review.

Tele-palliative care enables people with a life-limiting illness to consult with palliative care staff without having to leave their homes but requires commitment from all stakeholders, particularly on ethical challenges and patient safety issues. When using telecommunications and virtual technology, ethical challenges and patient safety aspects must be taken into account. The aim was to describe formal and informal caregivers' opportunities in tele-palliative care and the associated ethical and safety challenges using a Whittemore and Knafl integrative review method. Ethical and patient safety perspectives were extracted from studies reporting on tele-palliative care interventions. Content on ethically considerable information on the intervention was coded, categorized, and summarized into a matrix developed in advance from literature on socio-technical arrangements and eHealth applications. Nine studies from experimental and nonexperimental research were included. Four studies reported exclusively on the perspective of formal caregivers, 3 studies addressed the perspective of patients and informal caregivers, and 2 studies covered the perspectives of both. Studies of tele-palliative care interventions implicate effects on patient-caregiver relationships but also show that technology is not seen as a replacement of holistic palliative care. However, the authors do not address other relevant ethical issues (eg, sustainability) or consider aspects of patient safety. There is a need for further research to assess privacy, data security, and patient safety in tele-palliative care from the perspective of caregivers as telehealth becomes increasingly important.

Piloting of the virtual telecare technology 'Addison Care' to promote self-management in persons with chronic diseases in a community setting: protocol for a mixed-methods user experience, user engagement and usability pilot study.

INTRODUCTION: Chronic diseases in older adults are one of the major epidemiological challenges of current times and leading cause of disability, poor quality of life, high healthcare costs and death. Self-management of chronic diseases is essential to improve health behaviours and health outcomes. Technology-assisted interventions have shown to improve self-management of chronic diseases. Virtual avatars can be a key factor for the acceptance of these technologies. Addison Care is a home-based telecare solution equipped with a virtual avatar named Addison, connecting older persons with their caregivers via an easy-to-use technology. A central advantage is that Addison Care provides access to self-management support for an up-to-now highly under-represented population-older persons with chronic disease(s), which enables them to profit from e-health in everyday life. METHODS AND ANALYSIS: A pragmatic, non-randomised, one-arm pilot study applying an embedded mixed-methods approach will be conducted to examine user experience, usability and user engagement of the virtual avatar Addison. Participants will be at least 65 years and will be recruited between September 2022 and November 2022 from hospitals during the discharge process to home care. Standardised instruments, such as the User Experience Questionnaire, System Usability Scale, Instrumental Activities of Daily Living scale, Short-Form-8-Questionnaire, UCLA Loneliness Scale, Geriatric Depression Scale, Stendal Adherence with Medication Score and Self-Efficacy for Managing Chronic Diseases Scale, as well as survey-based assessments, semistructured interviews and think-aloud protocols, will be used. The study seeks to enrol 20 patients that meet the criteria. ETHICS AND DISSEMINATION: The study protocol has been approved by the ethic committee of the German Society for Nursing Science (21-037). The results are intended to be published in peer-reviewed journals and disseminated through conference papers. TRIAL REGISTRATION NUMBER: DRKS00025992.