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Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Findings: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

Background: Recently, healthcare services have witnessed an exponential increase in the use of immersive and non-immersive virtual reality (VR) technology to improve health-related outcomes. However, the use of VR in palliative care remains relatively unexplored. Aims: To review and synthesise evidence regarding the experiences of patients, families and healthcare professionals in palliative care who have engaged with immersive/non-immersive VR technology. Methods: A systematic integrative review using pre-defined MeSH search terms to identify eligible studies from five electronic databases (Cochrane Library, CINAHL, OVID Medline, Pubmed and Scopus) between April 2020 and February 2021. Findings: In total, 1066 articles were reviewed, 55 articles were considered eligible and subject to further analysis and a total of 16 articles met the inclusion criteria and were subject to critical appraisal. Rigorous analysis of eligible articles resulted in the identification of five overarching and interconnected themes: connection, VR as an emergent technology, perceptual change, safety, and future research. Conclusion: This review identified that VR could support patients, families and healthcare professionals in palliative care. As a result of the COVID-19 pandemic, the findings could prove particularly significant for facilitating connection. However, further research is necessary to explore the full scope of VR use in this speciality.

Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional.Underpinned by the Capability, Opportunity, Motivation-Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified.Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction.Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents’ experience of the initiation of their child’s advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were ‘giving up’. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families’ individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known:• In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child’s end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New:• Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals’ approach needs to be professional, respectful and empathetic to the parent and child’s situation.• Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.

Whilst loneliness and social isolation amongst older care-givers are becoming increasingly recognised, little is known about how these concepts impact on specific sub-groups of care-givers, such as older males. In the current study, we aimed to gain a better understanding of the experiences of loneliness and social isolation amongst older spousal male care-givers. Semi-structured interviews were undertaken with 24 participants, caring for a spouse/partner with a long-term chronic condition. After thematic analysis of the data, three themes were identified: dwindling social interactions, loneliness in the spousal relationship, and living with loneliness and social isolation. Study findings suggest that opportunities for social interactions gradually ‘dwindled’ due to a reluctance by older male care-givers to leave their spouse/partner at home alone, to accept offers of help or respite, or to attend social events without their spouse/partner. Consequently, social isolation increased. Feelings of physical and emotional loneliness were evident, and the loss of spousal companionship (such as loss of conversation and shared interests) increased loneliness. Individualised coping strategies were adopted including focusing on moments of positivity, talking to others and using prescribed medication. Findings provide insight into the experience of loneliness and social isolation for many older male spousal care-givers. This may facilitate a better understanding of older male care-givers’ support needs in addressing loneliness and social isolation, and should help to inform the development of targeted support services for this population.

We aim to explore healthful leadership practices in nursing and midwifery evident within the COVID-19 pandemic in the United Kingdom, the contextual facilitators, barriers and outcomes.Globally, the health and care sectors are under pressure and despite nurses and other professionals, demonstrating resilience and resourcefulness in the COVID-19 pandemic; this has negatively impacted on their health and wellbeing and on patient care.Two searches were conducted in July 2021 and December 2021. Inclusion/exclusion criteria were identified to refine the search, including papers written since the beginning of the pandemic in 2020. A total of 38 papers were included principally from the United States and United Kingdom. Ten were research papers; the others were commentaries, opinion pieces and editorials. MS Teams literature repository was created. A unique critical appraisal tool was devised to capture contexts, mechanisms and outcomes whilst reflecting more standardized tools, that is, the Critical Appraisal Skills Programme and the Authority, Accuracy, Coverage, Objectivity and Date tool for reviewing grey literature to refine the search further.Six tentative theories of healthful leadership emerged from the literature around leadership strategies, which are relational, being visible and present; being open and engaging; caring for self and others; embodying values; being prepared and preparing others; and using available information and support. Contextual factors that enable healthful leadership practices are in the main, created by leaders' values, attributes and style. The literature suggests that leaders who embody values of compassion, empathy, courage and authenticity create conditions for positive and healthful relations between leaders and others. Nurse and midwives' voices are however absent from the literature in this review.Current available literature would suggest healthful leadership practices are not prioritized by nurse leaders. Perspectives of nurses' and midwives' about the impact of such practices on their wellbeing is also missing. Tentative theories are offered as a means of identifying healthful leadership strategies, the context that enable these and potential outcomes for nurses and midwives. These will be explored in phase two of this study.Nurse leaders must be adequately prepared to create working environments that support nurses' and midwives' wellbeing, so that they may be able to provide high-quality care. Ensuring a supportive organizational culture, which embodies the values of healthfulness, may help to mitigate the impact of the COVID-19 pandemic on nurses' and midwives' wellbeing in the immediate aftermath and going forward.

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.

Background: Person-centred approaches to practice are synonymous with effective healthcare. It is therefore important that the nursing workforce values, recognises and demonstrates person-centred practice. This has implications for nursing education and how curricula prepare students for person-centred practice. Aim: To conduct a meta-synthesis of person-centredness in nursing curricula. Method: Meta-synthesis. Results: The meta-synthesis included 48 papers. Four themes were identified: Moving beyond mediocrity (dissatisfaction with current teaching and learning approaches, and a desire to enhance curricula to promote person-centredness) Me, myself and I (promoting person-centredness in nursing curricula requires all participants in nursing education to have self-knowledge) The curricular suitcase (nursing curricula have finite capacity so the inclusion of person-centredness is an essential requirement for the career journey) Learning elevators (it is important to prioritise learning cultures and experiences that help students understand and enact person-centred practice) Conclusion: This study has found that nurse educators aspire to and are committed to the promotion of person-centred practice. Internationally, a range of pedagogies and curricular developments to promote person-centredness have been positively evaluated. However, there is generally a lack of conceptual clarity about the nature of person-centredness and no evidence of a systematic approach to whole-curriculum development that reflects the theoretical principles of person-centred practice. Implications for practice development: Person-centred practice is a prominent concept in healthcare policy. If the future nursing workforce is to be prepared for person-centred practice then proficiency standards and nursing curricula should consistently reflect this Nursing curricula need to be developed to encompass a breadth and depth of learning experiences in academic and practice settings, in order to optimise student learning about those issues that matter most to people in need of healthcare

Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.

Formal support comprises services provided by health, social care and community-based agencies (CBAs), including charities. Evidence indicates poor uptake of formal support by older male care-givers who often fail to accept help until a crisis point is reached. Given the growing recognition of caregiving as gendered, there is a need for an enhanced understanding of how support providers can assess and address the needs of this caregiving sub-group. The aim of this study was to explore formal care providers’ perspectives of support for older male spousal care-givers through focus group interviews. The study was conducted in a region in the United Kingdom (UK) with four CBAs (participants: n = 33), and five statutory healthcare providers (participants: n = 51). Thematic data analysis resulted in the identification of three themes: Service Priorities, Engaging Men, Assessment of Need. Findings revealed that service flexibility was key to providing support; difficulties in engaging men in support and low take-up of carers’ assessments were potential barriers to support. Social workers should have an in-depth understanding of how caregiving is gendered and how this may influence the support needs of older male spousal care-givers. Enhanced carers’ assessment training, which highlights collaboration in planning and delivery of tailored support, may result in support that enables older male care-givers to sustain their caregiving role.

Background There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. Methods A systematic review of several academic and grey databases were searched from January 2008–June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. Results The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. Conclusions Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

Background: Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs). Aim: To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan. Methods: A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework. Findings: Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks. Conclusion: Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings.

Objectives To synthesize evidence regarding Chinese diasporas’ understanding, experience, and factors influencing engagement with advance care planning. Methods: A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results: 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, “Awareness and knowledge” and “Engagement with advance care planning.” There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas’ original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results: Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Background An empirical social research approach, facilitating in-depth exploration of complex, contemporary contextualised phenomena, case study research has been used internationally in healthcare studies across clinical settings, to explore systems and processes of care delivery. In the United Kingdom, case study methods have been championed by nurse researchers, particularly in the context of community nursing and palliative care provision, where its applicability is well established. Yet, dogged by conceptual confusion, case study remains largely underutilised as a research approach. Method Drawing on examples from nursing and palliative care studies, this paper clarifies case study research, identifies key concepts and considers lessons learned about its potential for nursing research within the unique and complex palliative and end of life context. Conclusion A case study approach offers nurse researchers the opportunity for in-depth, contextualised understanding of the systems and processes which influence their role in palliative care delivery across settings. However, philosophical and conceptual understandings are needed and further training in case study methodology is required to enable researchers to articulate and conduct case study.

Older male care-givers play an increasingly important role in informal care-giving, yet they have received little attention in the literature. The aim of this study was to explore the impact of care-giving on the experience of spousal intimacy for older male care-givers. Twenty-four older male care-givers, drawn from a region of the United Kingdom, participated in one-to-one interviews about their care-giving role. Thematic analysis was used to analyse data, and the study was underpinned by theories of masculinity. Three main themes were identified: (a) ‘Impact of care-giving on the experience of sexual intimacy’; (b) ‘Impact of care-giving on the experience of emotional intimacy’; and (c) ‘Not up for discussion’. When sexual intimacy declined, some older male care-givers prioritised emotional intimacy; some struggled with the decline; and some were reluctant to discuss the issue. Additionally, some care-givers reported that they had not received support from external support providers for declining sexual or emotional intimacy. Intimacy has been highlighted as important for care-givers given its link with care-giver wellbeing and quality of life. Results of this study suggest that sexual and emotional intimacy was an issue for older male care-givers, and that this issue should be considered by external support providers as part of a holistic assessment of need in order to tailor effective support.

Background Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. Methods A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). Results A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. Conclusions Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies. Electronic supplementary material The online version of this article (10.1186/s12904-019-0436-3) contains supplementary material, which is available to authorized users.

Background Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. Methods A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. Results Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

Background Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. Methods An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. Results A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents’ levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person’s ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. Conclusions Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.

BackgroundLiving with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement, facilitated by artists, promotes a sense of well-being and connection with others. However, much of the evidence is drawn from the use of the arts in broad health contexts or from creative arts therapies’ literature. This review aimed to systematically identify and synthesize existing evidence in order to reveal key knowledge gaps and to inform future research and practice. MethodsAn integrative review of the literature was conducted using a pre-defined, comprehensive search strategy. Databases searched included: PubMed inclusive of MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase. Search terms included variations on visual arts, literary arts, and performing arts; service users or patients; and palliative care or end-of-life care. The quality and rigor of articles were scored using Hawker and colleagues’ tool designed to systematically appraise disparate studies. Synthesis was conducted using a constant comparison method as outlined in the integrative review framework.ResultsEight reviewed studies explored literary, performing, and visual arts engagement in residential hospice, day hospice, and hospitals in England, the United States, France, and Canada. Seven of eight studies used qualitative methods and one study engaged in mixed methods. Patient perspectives were most commonly represented followed by health care professionals and family members. Creative writing, music, and visual art were predominant modalities whilst dance and theatre were underrepresented. Themes identified across studies associated arts engagement with 1) a sense of well-being, 2) a newly discovered, or re-framed, sense of self, 3) connection with others, 4) challenges associated with practice. ConclusionThis review synthesized current evidence and key knowledge gaps regarding artists' facilitation of arts engagement in palliative and end-of-life (EOL) care. It serves as a starting point in the consideration of next steps in standardizing professional practice and preparation for artists working in palliative and EOL care settings specifically. Recommendations for future research include exploring the value of collaboration between artists and palliative care teams when engaging with individuals living with life-limiting illness.

Background: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional’s initiation of paediatric advance care planning process is lacking. Aim: To review and synthesise evidence on the factors associated with health care professional’s decision to initiate paediatric advance care planning. Design: Systematic integrative review using constant comparison method. Data Sources: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. Results: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative ( n = 8), qualitative ( n = 6) and theoretical ( n = 7) studies. Findings revealed overarching and interrelated themes ‘ The timing of initiation’, ‘What makes an initiator, ‘Professionals’ perceptions’ and ‘Prerequisites to initiation’. Conclusions: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.

Objectives A public health approach to palliative care that reorientates care towards the public is advocated in global policy. The public are drivers in identifying care priorities and partners in finding solutions to care issues; however, a necessary prerequisite is that the public knows what palliative care is and what it can achieve. The aim of this study was to investigate what young adults, an important cohort of the public, know about palliative care and identify key predictors of knowledge. Study design This is a cross-sectional online survey. Methods A cross-sectional online survey measured knowledge of palliative care using the Palliative Care Knowledge Scale (PaCKS), with young adults (aged 18–29 years) recruited from a university in the UK. Data relating to demographic characteristics and familiarity and experience of palliative care were collected, with descriptive, bivariate and multivariate analyses undertaken to determine respondents' knowledge levels and key predictors. Results In total, 83% (n = 710) of respondents (n = 859) had heard of the term palliative care. The mean score on the PaCKS was 8.87 (standard deviation = 3.4, range = 0–13); men had lower levels of knowledge (P = 0.016). Most respondents were aware that palliative care is not specifically for those with cancer or exclusively for older populations. They were unsure of timing and other key aspects reporting significant levels of ‘I don't ’know’ responses. Linear regression analysis demonstrated that familiarity and experience of palliative care moderated demographic influences (age, gender, education level) on knowledge (β = 0.45, P Conclusions The findings suggest that despite high levels of awareness and familiarity with the term, significant numbers of respondents indicated a lack of knowledge of palliative care rather than inaccurate knowledge. This suggests the need for public health organisations to partner with palliative care sectors to develop and disseminate clear unequivocal messaging relating to the breadth of palliative care that both informs and engages young adults.

Background: Given the increase in the number of deaths within long-term care facilities (LTCFs), the need for palliative and end-of-life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development. Objective: To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation. Methods: The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed-Methods Appraisal Tool. Results: A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience. Conclusions: Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large-scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population. Implications for practice: Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting. © 2020 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd

Background: Limited evidence exists on the impact of palliative rehabilitation during systemic treatment of advanced cancer. Aim: To explore the experiences and perceptions of patients and healthcare professionals on the feasibility and acceptability of palliative rehabilitation during advanced lung cancer treatment. Design: Qualitative design using individual semi-structured interviews transcribed verbatim and analysed thematically. Setting/participants: Eight patients and six healthcare professionals were recruited from a regional cancer centre in the United Kingdom following completion of a 6-week individualised behaviour change study which combined physical activity and nutritional guidance. Results: Palliative rehabilitation and study participation were positively viewed by both participants and healthcare professionals. Five themes were identified from patient interviews within an overarching theme of living with and beyond an advanced cancer diagnosis: (1) challenges of living with incurable cancer, (2) personal and altruistic reasons for participating in rehabilitation, (3) applicability of palliative rehabilitation content, (4) barriers and facilitators to adherence and (5) positive impact on self and others. Three themes were identified from healthcare professionals, within an overarching theme of palliative rehabilitation: exploring the concept (1) pre-study-mixed perceptions of palliative rehabilitation, (2) perceived benefits for patients and families and (3) lessons for future research. Conclusion: Patients described personal benefits associated with setting their own goals for physical activity and dietary intake. Healthcare professionals who initially expressed a negative or indifferent stance towards palliative rehabilitation, displayed a mind-set change and were keen to explore further opportunities to expand the evidence base.

Background Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research. Methods A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with “Ireland” or “Irish” to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes. Results In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder. Conclusions There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours’ care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes. Electronic supplementary material The online version of this article (10.1186/s12904-018-0364-7) contains supplementary material, which is available to authorized users.

Background: Observational Pain Tools (OPTs) are widely recommended in healthcare policies, clinical guidelines and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life. Aim: To explore hospice, secondary and primary care physicians’ and nurses’ use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs. Methods: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n=5), hospitals (n=6), hospices (n=4) and nursing homes (n=10). Semi-structured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim and thematic analysis applied to identify core themes. Results: Three key themes emerged: (1) use of OPTs in this vulnerable patient population; (2) barriers to the use of OPTs and lack of perceived ‘added value’ and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n=13) routinely used OPTs. Reasons for non-use included perceived limitations of such tools, difficulties with their use and integration with existing practice and lack of perceived ‘added value’. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties. Conclusions: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice and policy.

As the number of implantable cardioverter defibrillators (ICDs) implanted continues to rise, there is a growing challenge to ensure patients and family members are adequately equipped for involvement in future end-of-life decisions concerning their device.ObjectiveTo explore patients’, family members’ and professionals’ attitudes and understanding towards discussing ICD deactivation.MethodsCase study approach using qualitative interviews and framework analysis. A total of 29 qualitative interviews were undertaken, involving patients with a device, family members and healthcare professionals. Interviews were audio-recorded, transcribed verbatim and analysed using framework analysis. Data were triangulated with information obtained from the patients’ medical records (n=10).ResultsThree main themes: (1) Professionals were reluctant to engage in conversations concerning deactivation, particularly prior to implantation, believing this was in the patient’s best interest. (2) Patients and family members had limited understanding of the implanted device and its functions. It was frequently perceived as ‘life-saving’ with any negativity of the shock experience seen as acceptable. (3) All patients wanted the opportunity to discuss deactivation when death was imminent, but were indecisive whether family members should be involved. Similarly, some patients felt the decision to deactivate rested solely with the medical profession while others felt it should be a joint decision between patient, family and clinical team.ConclusionsPatients and family members require improved communication and information concerning their future treatment plan and functionality of an ICD. A proactive approach to discuss deactivation would enable shared clinical decision-making in the advanced stages of illness.

The number of people requiring palliative care is increasing sharply (Etkind et al., 2017). Forty per cent more people will need palliative care by 2040. Recommendations are that palliative care should be initiated at diagnosis, even concurrently with curative treatment (Guo et al., 2012). In response, Palliative Care Day Services are designed to support people during assessment and treatment through the provision of regular outpatient attendance at specialist centres to deliver out-patient services so that patients can remain at home. Such interventions have been found to be effective (Stevens, Martin & White, 2011), however the evidence is limited. To inform further development, we undertook retrospective chart reviews at three Marie Curie centres: reviewing the records of people attending for the first time in 2015. We found that services were accessed mainly by older people with a primary diagnosis of cancer; referrals came mostly from: hospitals, other palliative care services or a GP; and people typically attended weekly for 6 or 12 weeks. In 82 cases, we found people had their physical (331), psychological (55), social (46) and spiritual (14) needs addressed. Day Services were provided by nurses, doctors and therapists. Patients had their medication regime reviewed and equipment was ‘prescribed’ as necessary. In a third of cases, support was also offered to a family member. About half of patients were helped to develop an advance care plan and almost 300 referrals were made to other health and social care services. Day Services can provide specialist palliative care outside the inpatient unit to help address specific, pre-identified health and social care needs. The effectiveness of such services requires further investigation and chart reviews can be useful in contributing to such evaluations.

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under-represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male-specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

Global health care policy and regulatory requirements indicate that nursing students must be prepared for person-centred practice. Despite this, there is no evidence of a theoretically derived instrument to measure students' perceptions of person-centred practice.To adapt the Person-centred Practice Inventory-Staff instrument for use with healthcare students and to test the adapted instrument.This study involved a two-phased, modified Delphi Technique. In Phase 1 students' views about items in the Person-centred Practice Inventory-Staff were explored to gain consensus about items for inclusion in an adapted student version. In Phase 2, the psychometric properties of the adapted instrument were tested.A UK university.Pre-registration nursing students.Phase 1 involved an iterative process including three focus groups (n = 13) followed by Delphi surveys (Round 1: n = 382; Round 2: n = 144). Thematic analysis was used to analyse students' comments and consensus percentages were calculated after each Delphi round. Phase 2 involved a survey using the adapted instrument (n = 532). The measurement model was analysed using confirmatory factor analysis.The results indicated stability in the measurement model with this sample. Item correlation scores were between 0.22 and 0.74 with no evidence of collinearity and factor loadings ranged from 0.44-0.86. Fit indices indicated goodness of fit between the observed data and the respective domains in the Person-centred Practice Framework (chi-squared to degrees of freedom ratio of3, root mean square estimations of approximation 0.06 for all domains and between 0.05 and 0.07 at 90% confidence interval. Comparative fit index estimates ranged from 0.90-0.97).This study provides initial validation of the Person-centred Practice Inventory-Student instrument which is offered as a measure of students' perceptions of their person-centred practice. The instrument has utility in assessing the efficacy of curricula in preparing students as person-centred practitioners.