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Background: Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough's weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one's quality of life and that the process of finding a care home had been traumatic. No studies investigated patients' views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

Background: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). Aim: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. Design: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. Setting/participants: Eight social workers from different hospices in the UK. Results: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). Conclusions: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis. [ABSTRACT FROM AUTHOR]

Background: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. Aim: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. Design: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. Setting/participants: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. Results: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. Conclusions: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy. [ABSTRACT FROM AUTHOR]

Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. Setting/participants: 711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Results: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member. Conclusions: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased. [ABSTRACT FROM AUTHOR]

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death. [ABSTRACT FROM AUTHOR]

Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'. [ABSTRACT FROM AUTHOR]

Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children's hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important. [ABSTRACT FROM AUTHOR]

Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. Design: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death. [ABSTRACT FROM AUTHOR]

Background: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person's life, memories and achievements. Aim: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. Design: A qualitative study underpinned by interpretative phenomenological analysis. Setting/participants: People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee. Results: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos. Conclusion: This study expands the existing continuing bonds model of grief to include an 'autobiographical chapter', creating 'The Model of Reciprocal Bonds Formation'. [ABSTRACT FROM AUTHOR]

Background: The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism from the public, media, politicians and healthcare professionals culminated with a critical independent review (July 2013) and subsequent withdrawal of the Liverpool Care Pathway. Aim: This research explores experiences of doctors using the Liverpool Care Pathway, prior to and during its withdrawal, to better understand shortfallings and inform future initiatives in hospital end-of-life care. Design: Individual semi-structured audio-recorded interviews were transcribed verbatim and concurrently analysed using thematic analysis. Setting/participants: Following ethical approval, volunteer participants from an acute UK hospital were sought (n = 73). A total of 18 specialist doctors were purposively selected. Results: Seven themes shaped doctors’ experiences of using the Liverpool Care Pathway: (1) changing perceptions according to length of clinical practice, (2) individual interpretation and application of the Liverpool Care Pathway, (3) limitations arising from setting, speciality and basic end-of-life care competence, (4) understanding and acceptance of medical uncertainty at the end-of-life, (5) centrality of communication and fear of discussing dying, (6) external challenges, including a culture to cure, role modelling and the media and (7) desire for reassurance in end-of-life care decisions. Conclusion: Future initiatives in hospital end-of-life care must address doctors’ fears, (in)abilty to tolerate medical uncertainty, communication skills and understanding of the dying phase, in order to provide optimum care in the last days of life. [ABSTRACT FROM AUTHOR]

Background: Nurses are the professional group with the greatest contact with those at the end of life and their attitudes towards the care of the dying is important in care delivery. Aim: We investigated the relationship between student nurses’ attitudes towards care of the dying and (1) demographics, (2) course factors and (3) experience of caring for people who are dying. Design: A cross-sectional survey using the Frommelt’s Attitude Toward Care of the Dying scale to measure respondents’ attitudes. Setting/participants: Nursing students studying at a university in the United Kingdom. Results: A total of 567 completed questionnaires were returned, with 91.9% of respondents being classed as having a positive attitude towards care of the dying (Frommelt’s Attitude Toward Care of the Dying score ⩾65). In adjusted analysis, higher (more positive) Frommelt’s Attitude Toward Care of the Dying scores were associated with time on course and experience of caring for the dying. Third-year students had a score of 2.18 points greater than those in their first year (95% confidence interval: 0.36–4.01, p = 0.017). The adjusted differences in scores were 2.22 points greater for those who had prepared a dead body (95% confidence interval: 0.57–3.87, p = 0.008), 2.95 points greater for those who had cared for a dying patient (95% confidence interval: 1.09–4.08, p = 0.002) and 2.03 points greater for those who had cared for a dying relative or friend (95% confidence interval: 0.69–3.37, p = 0.003). Conclusion: The length of time in education and practical experience of caring for dying individuals are independently associated with positive attitudes towards care of the dying among student nurses. [ABSTRACT FROM AUTHOR]