Identification of Digital Health Priorities for Palliative Care Research:Modified Delphi Study

Background Developments in digital health has the potential to transform the delivery of health and social care to help citizens manage their own health. Currently there is a lack consensus about digital health research priorities in palliative care and a lack theories about how these technologies might improve care outcomes. Therefore, it is important for healthcare leaders to identify innovations to ensure that an increasingly frail population have appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step to determine how we should allocate finite resources to a field saturated with rapidly developing innovations. Objective To identify research priority areas for digital health in palliative care. Methods We selected the digital health trends, most relevant to palliative care, from a list of emerging trends reported by a world-leading Institute of quantitative futurists. We conducted two rounds of Delphi questionnaire, followed by a consensus meeting and a public engagement workshop to establish final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives of the agreed priorities. Results One hundred and three experts (representing 11 countries) participated in the 1st Delphi round. Fifty-five participated in the 2nd round (53% of 1st round). Eleven experts attended the final consensus meeting. We identified 16 priorities areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of disease, education and training, communication, care coordination and research methodology. We summarised the priority areas into eight topic areas, which were: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy. Conclusions The identified priorities in this paper represent a wide range of important emerging areas in field of digital health, personalised medicine, and data science. Human-centred design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and do not cause unintentional harm

Robotic technology for palliative and supportive care: Strengths, weaknesses, opportunities and threats

Background: Medical robots are increasingly used for a variety of applications in healthcare. Robots have mainly been used to support surgical procedures, and for a variety of assistive uses in dementia and elderly care. To date, there has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care. Aim: The objective of this article is to examine the possible future impact of medical robotics on palliative, supportive care and end-of-life care. Specifically, we will discuss the strengths, weaknesses, opportunities and threats (SWOT) of this technology. Methods: A SWOT analysis to understand the strengths, weaknesses, opportunities and threats of robotic technology in palliative and supportive care. Results: The opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. However, there are a number of technical, societal, economic and ethical factors which need to be considered to ensure meaningful use of this technology in palliative care. Conclusion: Robotics could have a number of potential applications in palliative, supportive and end-of-life care. Future work should evaluate the health-related, economic, societal and ethical implications of using this technology. There is a need for collaborative research to establish use-cases and inform policy, to ensure the appropriate use (or non-use) of robots for people with serious illness

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries:the iLIVE study

Background:End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020.</p

‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family’s role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers’ points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff’s model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers’ field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families’ active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world endof- life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

BackgroundEnd-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.MethodsVolunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital.ResultsBarriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK).ConclusionEstablishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained.Trial registrationNCT04678310. Registered 21/12/2020

Barriers and drivers of public engagement in palliative care, Scoping review

Background The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.Methods Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. Keywords: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.Results Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.Conclusion Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated

Barriers and drivers of public engagement in palliative care, Scoping review

Background The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.Methods Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. Keywords: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.Results Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.Conclusion Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated

Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085

The 'lived experience' of palliative care patients in one acute hospital setting - a qualitative study

Background There is limited understanding of the ‘lived experience’ of palliative care patient within the acute care setting. Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health delivery. Understanding ‘patient experience’ can enable care providers to ensure services are responsive and adaptive to individual patient need. Methods The aim of this study was to explore the ‘lived experience’ of a group of patients with palliative care needs who had recently been in-patients in one acute hospital trust in the north-west of England. Qualitative research using narrative interviews was undertaken, and data was analysed using thematic analysis. A sample of 20 consecutive patients complying with the inclusion/exclusion criteria were recruited and interviewed. Results Patient Sample: Of the 20 patients recruited, there was a fairly equal gender split; all had a cancer diagnosis and the majority were white British, with an age range of 43–87 years. Findings from Interviews: Overall inpatient experience was viewed positively. Individual narratives illustrated compassionate and responsive care, with the patient at the centre. Acts of compassion appeared to be expressed through the ‘little things’ staff could do for patients, i.e., time to talk, time to care, humanity and comfort measures. AHSPCT involvement resulted in perceived improvements in pain control and holistic wellbeing. However, challenges were evident, particularly regarding over-stretched staff and resources, and modes of communication, which seemed to impact on patient experience. Conclusions Listening to patients’ experiences of care across the organisation provided a unique opportunity to impact upon delivery of care. Further research should focus on exploring issues such as: why some patients within the same organisation have a positive experience of care, while others may not; how do staff attitudes and behaviours impact on the experience of care; transitions of care from hospital to home, and the role of social networks