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Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. Aim: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. Design: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. Setting/participants: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. Results: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%–98%) and a specificity of 94% (95% CI 90%–99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94–1). Conclusion: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. Trial registry: ISCRTN 97417474. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a s ocial constructivist paradigm, a secondary discourse analysis of s emi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities. [ABSTRACT FROM AUTHOR]

The article focuses on evaluating the quality of reporting in palliative and end-of-life care intervention studies regarding social characteristics like socioeconomic position, race, religion, and main language of participants. Topics include the findings that a significant proportion of studies do not report these characteristics adequately, with a tendency to use broad categories that may not capture the diversity of participants, hindering efforts to address inequalities in palliative care.

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: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. Design: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. Setting: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. Results: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. Conclusion: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric). [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Background: Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims: To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and the factors that influence their choices. Design: A qualitative multiple case study of three UK palliative care trials. Data collection included interviews and study documentation. Analysis involved developing and refining theoretical propositions, guided by the '6Ps' of the 'Social Marketing Mix Framework' as an a priori framework (identifying participants, product, price, place, promotion and working with partners). Framework Analysis guided within and then cross-case analysis. Settings/participants: Study investigators and research staff (n = 3, 9, 7) from trial coordinating centres and recruitment sites (hospice and hospital). Results: Cross-case analysis suggests the 'Social Marketing Mix Framework' is useful for understanding recruitment processes but wider contextual issues need to be incorporated. These include the 'emotional labour' of diagnosing dying and communicating palliative and end-of-life care to potential participants and how the recruitment process is influenced by the power relationships and hierarchies that exist among professional groups. These factors can lead to and support paternalistic practices. Conclusions: Those planning trials need to ensure that trial recruiters, depending on their experience and trial characteristics, have access to training and support to address the 'emotional labour' of recruitment. The type of training required requires further research. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Background: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people's actual experiences of suffering in this clinical setting. Aim: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering. Design: An observational study, using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of 3 months in 2016, 186 h of observations of clinical care were carried out. Settings/participants: The study was carried out on a 30-bedded acute older peoples' hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors. Results: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience. Conclusion: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care. [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: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Background: The optimal management of diminishing drinking at the end of life is contentious. Clinicians and family members may understand the phenomenon differently and hold divergent priorities regarding care. Family members can be distressed by diminishing drinking and its management, particularly when in a hospital environment. Aim: To explore the experiences of family members when witnessing the diminishing drinking of a dying relative. Design: A narrative inquiry methodology, derived from pragmatism. Setting and participants: Thirteen recently bereaved family members were recruited through the bereavement services of three UK hospitals. Inclusion criteria included having an adult relative who died in hospital of any diagnosis more than 48 hours from admission and who had had noticeable diminishing drinking. Findings: Participants experienced diminishing drinking as an unfolding process that was part of overall decline. They all believed it to be detrimental. Three groups of responses were identified: promoting, accepting and ameliorating. Supportive measures included offering equipment to support drinking, staff being present and communicating about expectations and care management aims. Conclusions: There is potential to improve family members' experiences through re-conceptualisation of diminishing drinking aligned to their experiences, supporting family members by listening to their experiences with insight and strengthening their agency within the management of their relatives with diminishing drinking. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Background: People who use drugs with life-limiting illnesses experience substantial barriers to accessing palliative care. Demand for palliative care is expected to increase during communicable disease epidemics and pandemics. Understanding how epidemics and pandemics affect palliative care for people who use drugs is important from a service delivery perspective and for reducing population health inequities. Aim: To explore what is known about communicable disease epidemics and pandemics, palliative care, and people who use drugs. Design: Scoping review. Data sources: We searched six bibliographic databases from inception to April 2021 as well as the grey literature. We included English and French records about palliative care access, programs, and policies and guidelines for people ⩾18 years old who use drugs during communicable disease epidemics and pandemics. Results: Forty-four articles were included in our analysis. We identified limited knowledge about palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS. Through our thematic synthesis of the records, we generated the following themes: enablers and barriers to access, organizational barriers, structural inequity, access to opioids and other psychoactive substances, and stigma. Conclusions: Our findings underscore the need for further research about how best to provide palliative care for people who use drugs during epidemics and pandemics. We suggest four ways that health systems can be better prepared to help alleviate the structural barriers that limit access as well as support the provision of high-quality palliative care during future epidemics and pandemics. [ABSTRACT FROM AUTHOR]

Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research. [ABSTRACT FROM AUTHOR]

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. Aim: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. Design: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. Setting/participants: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. Results: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31–40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002–0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62–0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75–49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). Conclusions: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics. [ABSTRACT FROM AUTHOR]

Background: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. Aim: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. Design: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. Participants: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. Results: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. Conclusions: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care. [ABSTRACT FROM AUTHOR]

Background: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (<18 years old) are able to participate in research and appreciate the opportunity to participate in studies. Aim: To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. Findings: The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children's, adolescents' and parents' project advisory groups to support recruitment, data collection and analysis. Conclusions: Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research. [ABSTRACT FROM AUTHOR]

Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. Aim: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required. [ABSTRACT FROM AUTHOR]

Background: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. Aim: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. Design: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. Setting / Participants: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. Results: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. Conclusions: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. Aim: To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Design: Qualitative semi-structured interviews were conducted, with thematic analysis of the data. Setting/participants: A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Results: Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming. Conclusions: Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children. [ABSTRACT FROM AUTHOR]

Background: Prescribing clinicians have to negotiate ambiguities around information provision and consent for medications on a daily basis, despite the availability of professional guidance. Aim: This study aims to explore some of the many factors prescribing clinicians in the United Kingdom take into account when deciding what information to give to patients about medication choices, and when. Design: In depth face-to-face interviews, utilising both a hypothetical scenario and semi-structured prompts, were conducted in order to elicit extended reflections on how clinicians individually work through such dilemmas and make decisions. Setting/participants: Ten prescribing clinicians (doctors and nurses) from a large combined team of National Health Service (NHS) secondary and community palliative care providers in England. Results: Palliative care staff regularly face choices about information provision in prescribing discussions, in particular when considering whether information might increase distress. Participants presented three overlapping framings that helped them assess the range of factors that could potentially be taken into account; (1) assessing the individual patient, (2) tailoring the provision of information and (3) jointly forming a plan. Conclusions: Information provision about medication choices and effects is a demanding, ongoing process, requiring nuanced judgements that constitute an unacknowledged yet significant aspect of clinical workload. Although current medical guidelines allow clinical discretion about information provision, this can leave individual clinicians feeling vulnerable. Further evolution of guidelines needs to establish a more sophisticated way to acknowledge professional and legal requirements, whilst also promoting professional autonomy and judgement. [ABSTRACT FROM AUTHOR]

Background: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. Aim: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. Design: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. Setting/participants: Two healthcare trusts within the United Kingdom. Results: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. Conclusions: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support. [ABSTRACT FROM AUTHOR]

Background: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. Aim: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. Design: Qualitative study involving framework analysis of data from semi-structured interviews. Setting/participants: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. Results: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. Conclusions: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care. [ABSTRACT FROM AUTHOR]

Background: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. Aim: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries – the United Kingdom (UK), Aotearoa New Zealand and Canada. Design: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. Results: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. Conclusion: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment. [ABSTRACT FROM AUTHOR]

Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. Aim: To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. Design: A mixed methods study conducted by telephone interview. Setting/participants: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. Results: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. Conclusions: Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions. [ABSTRACT FROM AUTHOR]

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities. [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: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers (n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it's where I'm meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients' fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers. [ABSTRACT FROM AUTHOR]

Background: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. Aim: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. Design: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. Setting/participants: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. Results: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. Conclusion: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/participants: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation. [ABSTRACT FROM AUTHOR]

Background: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. Aims: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. Design: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015–19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths. Results: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%. Conclusions: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality. [ABSTRACT FROM AUTHOR]

Background: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. Aim: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. Design: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. Setting: Primary care in Flanders, Belgium. Results: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. Conclusions: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions. [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: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model. [ABSTRACT FROM AUTHOR]

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom (n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a 'one size fits all' approach will not work; rather bespoke targeting is required with educational and media messaging aligned. [ABSTRACT FROM AUTHOR]