57 Digital legacy and digital inequality: a rapid scoping review

IntroductionThe need for palliative care is increasing1 and it is essential to look at how emerging technologies can improve care for palliative patients and their carers in the future.2 With...

BackgroundThe need for palliative care is increasing1 and it is essential to look at how emerging technologies can improve care for palliative patients and their carers in the future.2 With...

Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. To identify palliative care healthcare professionals' experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. A constructivist grounded theory approach was used to understand healthcare professionals' experiences of managing digital legacy. Semi-structured interviews were carried out. Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. Four theoretical categories were found to revolve around an emergent theory 'understanding the impact of digital legacy' which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were 'accessing digital legacy'; 'becoming part of advance care planning'; 'impacting grief and bereavement'; and 'raising awareness of digital legacy'. The emerging theory 'understanding the impact of digital legacy' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations.

BackgroundThe need for palliative care is increasing (World Health Organization, 2020) and it is essential to look at how emerging technologies can improve care for palliative patients and their carers...

BackgroundResearch, using design and digital methods, can potentially help patients and caregivers to manage their digital legacy (the digital information available about someone following their death – Coop, Marlow. Palliat...

IntroductionThe need for palliative care is increasing1 and it is essential to consider emerging technologies that have the potential to enhance care for palliative patients and their carers.2 Recent data...

BackgroundDesign-focused research can potentially help patients and caregivers to manage their digital legacy (the digital information available about someone following their death). However, there is a lack of multi-disciplinary partnerships...

BackgroundDevelopments in digital health have the potential to transform the delivery of health and social care to help citizens manage their health. Currently, there is a lack of consensus about digital health research priorities in palliative care and a lack of theories about how these technologies might improve care outcomes. Therefore, it is important for health care leaders to identify innovations to ensure that an increasingly frail population has appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step in determining how finite resources should be allocated to a field saturated with rapidly developing innovation.ObjectiveThe aim of this study is to identify research priority areas for digital health in palliative care.MethodsWe selected digital health trends, most relevant to palliative care, from a list of emerging trends reported by a leading institute of quantitative futurists. We conducted 2 rounds of the Delphi questionnaire, followed by a consensus meeting and public engagement workshop to establish a final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives on the agreed priorities.ResultsA total of 103 experts (representing 11 countries) participated in the first Delphi round. Of the 103 experts, 55 (53.3%) participated in the second round. The final consensus meetings were attended by 10.7% (11/103) of the experts. We identified 16 priority areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of diseases, education and training, communication, care coordination, and research methodology. We summarized the priority areas into eight topics: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, smart home, biotechnology, and digital legacy.ConclusionsThe priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered 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.

BackgroundDigital legacy is the virtual remnant of individual after death. There is a lack of awareness of how society should prepare, and manage, digital assets before and after death. We...

Background The development of data-driven technology presents an opportunity to improve quality and efficiency of healthcare provision and patient experience. It is important to carefully evaluate current and planned future developments, to identify research priority areas and determine how resources should be best utilised. This project aimed to explore how digital technology can improve the care of people with palliative care needs by setting ‘priority areas’ for further research and development. Methods and objectives A scoping literature review was conducted. Two rounds of international Delphi questionnaires were completed, followed by a consensus meeting of experts and a public engagement event. Results One hundred and eight experts (from healthcare, academic and technology) from 11 countries participated in round 1 Delphi. The second round Delphi questionnaire was completed by 55 (53% of 1st round) participants in nine countries. Eleven experts attended the final consensus meeting. A total of 12 priorities were selected (from a list of 33) which were summarised into eight themes. These themes were: Big Data; mobile devices; ehealth/telehealth; virtual reality; smart homes; biotechnology and digital legacy. A public engagement meeting of six lay representative was conducted to discuss each priority area in depth and identify future research questions. Conclusion The identified priorities represent a wide range of important emerging areas in field of digital health, personalised medicine and data science. Collaborative studies are required to address these priority areas, which will aim to improve the care and experience for people with palliative care needs.

Background/aims: The development of data-driven technology presents an opportunity to improve quality and efficiency of healthcare provision and patient experience. It is important to carefully evaluate current and planned future developments, to identify research priority areas and determine how resources should be best utilised. This project aimed to explore how digital technology can improve the care of people with palliative care needs by setting “priority areas” for further research and development. Methods: A scoping literature review was conducted. Two rounds of international Delphi questionnaires were completed, followed by a consensus meeting of experts and a public engagement event. Results: One hundred and eight experts (from healthcare, academic and technology) from 11 countries participated in round 1 Delphi. The second round Delphi questionnaire was completed by 55 (53% of 1 st round) participants in nine countries. Eleven experts attended the final consensus meeting. A total of 12 priorities were selected (from a list of 33) which were summarised into eight themes. These themes were: Big Data; mobile devices; ehealth/telehealth; virtual reality; smart homes; biotechnology and digital legacy. A public engagement meeting of six lay representative was conducted to discuss each priority area in depth and identify future research questions. Conclusions: The identified priorities represent a wide range of important emerging areas in field of digital health, personalised medicine and data science. Collaborative studies are required to address these priority areas, which will aim to improve the care and experience for people with palliative care needs.

Background Digital legacy is the digital content that we leave after death. Social media is becoming a more prominent part of our everyday lives. A recent report found that 94% digital consumers, aged 16–64, have at least one social media account, with one in every three minutes online devoted to social networking (GWI Social, 2017). It has been predicted that by 2098 Facebook could be the biggest virtual graveyard (The Telegraph, 2016). It is a forum where palliative care is prominent with 685 500 tweets in a two-year period relating to palliative care, from both health care professionals and the general public. (Nwosu et al, 2015). It has been seen as beneficial for a specialist palliative care team to gain insight to how a patient is feeling through their blog (Lowney & O’Brien, 2012). Dr. Kate Granger used social media to document her journey, which has given a unique insight of a doctor living with a terminal illness (Granger, 2014). However, use of social media can also have negative consequences; a father felt his son’s dying process had been violated by friends setting up a Facebook page to raise money for his children’s future school fees (Smith, 2011). The Digital Legacy Association – https://digitallegacyassociation.org/ – has produced a public awareness leaflet to help drive the importance of digital legacy forward, but as health care professionals do we assist this? Question How well do we as palliative care professionals prepare patients for their digital legacy? Methods An online questionnaire will be sent to doctors, nurses and social workers working at hospices within the West Midlands which they are asked to complete and submit within six weeks. The questionnaire asks about: their own use of social media; if they have thought about their own digital legacy; whether they have discussed digital legacy with a patient and, if so, what stimulated that conversation. Results The results are pending and will be complete by August 2017.

One implication of social media is that when we die, we live on to an extent through our online presence and digital footprint or legacy. By 2098, for instance, dead Facebook users will outnumber living ones (Newsweek, 2016), effectively making the website into the largest graveyard in the world, albeit in digital form. The terminally ill, as well as their families and friends, can use these internet pages in various ways, as a legacy, tribute and memorial for addressing loss and bereavement. In recent years, various enterprises, services, and associations have sprung up (e.g. Dead Social, the Digital Beyond, Final Road Map, and the Digital Legacy Association) with powerful implications for linking interactive digital tools like social media and blogging to the work of palliative healthcare professionals. Longer lifespans combined with widespread technological trends are inevitably reshaping experiences and perceptions of death and grief – with compelling questions for how palliative care can use such trends to improve its practices. Depending on how they are used, digital assets and legacies may help support people’s coping and grieving processes, or they may have more negative effects, inhibiting acceptance and prolonging more dysfunctional responses to grief and loss. Through research into the development of the Digital Legacy movement, and an ongoing programme of semi-structured interviews with hospice staff, technological innovators, patients and bereaved parties, this paper is aimed at critically assessing how effective palliative care might be delivered through various digital legacy services. Implications and conclusions are drawn for finding out and addressing the needs of patients and grieving relatives through online media, integrating digital legacies with existing palliative frameworks to improve care, and the ethical challenges of using new technologies to engage the highly sensitive, taboo subjects of dying and death.

BackgroundThe acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. ObjectiveTo formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. Design and methodA rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. Data sourcesWe searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. ResultsIn total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains ‘advance care planning’ and ‘psychological aspects of care’. The lowest number of papers informed the domains ‘ethical care’, ‘care of the dying’, ‘spiritual care’ and ‘bereavement care’. We found no papers that informed the ‘cultural aspects of care’ domain. ConclusionLiterature that focuses specifically on palliative care for people with dementia in long-term care facilities during the COVID-19 pandemic is still largely lacking. Particular challenges that need addressing involve care of the dying and the bereaved, and ethical, cultural and spiritual aspects of care. Moreover, we must acknowledge grief and moral distress among nursing staff. Nursing leadership is needed to safeguard the quality of care and nursing staff should work together within an interprofessional care team to initiate advance care planning conversations in a timely manner, to review and document advance care plans, and to adapt goals of care as they may change due to the COVID-19 situation.Tweetable abstract: The current COVID-19 pandemic affects people living with dementia, their families and their professional caregivers. This rapid scoping review searched for academic and grey literature to formulate practical recommendations for nursing staff working in long-term care facilities on how to provide palliative care for people with dementia in times of COVID-19. There is a particular need for grief and bereavement support and we must acknowledge grief and moral distress among nursing staff. This review exposes practice and knowledge gaps in the response to COVID-19 that reflect the longstanding neglect and weaknesses of palliative care in the long-term care sector. Nursing leadership is needed to safeguard the quality of palliative care, interprofessional collaboration and peer support among nursing staff.

<h3>Introduction</h3> The need for palliative care is expected to increase globally due to a number of socioeconomic factors,¹ therefore it is essential for society to use technology better to improve palliative care.² <h3>Aims</h3> This project looks to identify learning beyond the COVID19 pandemic in the United Kingdom (UK), highlighting knowledge and skills required to support healthcare professionals to adopt technology to support communication. <h3>Method</h3> An electronic survey was developed consisting of a maximum of 36 multiple choice and free text response questions gathering demographic information and covering three themed areas: Communication within the multidisciplinary team, use of technology for education and using technology to support communication with patients and carers. <h3>Results</h3> The survey received 234 responses from palliative care healthcare professionals across the UK, with 97% of respondents reporting that they have used technology to support communication more since the beginning of the Covid19 pandemic. Responses have highlighted several benefits of using technology to support communication in these areas, whilst providing greater understanding of the barriers that exist. <h3>Conclusion</h3> Our work has shown that there is an increasing use of technology to support communication in palliative care. It is essential that organisations acknowledge and adapt to this change in order for healthcare professionals to provide the best possible care by improving access and quality of palliative care services. <h3>Impact</h3> This work highlights areas of improvement needed to allow healthcare professionals to use technology to support communication. If used well, this can improve the scope of palliative care delivery in the future. <h3>References</h3> Bone AE, Gomes B, Etkind SN, <i>et al</i>. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. <i>Palliative Medicine</i> 2017;<b>32</b>(2):329–36. doi:10.1177/0269216317734435 Nwosu AC, Collins B, Mason S. Big data analysis to improve care for people living with serious illness: the potential to use new emerging technology in palliative care. <i>Palliative Medicine</i> 2018;<b>32</b>(1):164–66. doi:10.1177/0269216317726250