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Background: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. Methods: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. Results: The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. Conclusions: Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff. [ABSTRACT FROM AUTHOR]

Background: In the second half of the nineties, a scientific debate about the usefulness of qualitative research in medicine began in the main medical journals as well as the amount of "qualitative" papers published on peer reviewed journals has noticeably increased during these last years. Nevertheless the label of qualitative methodology has been assigned to an heterogeneous collection of studies. Some of them show a complete awareness of the specificity of this kind of research, while others are still largely influenced by the quantitative paradigm prevailing in the medical field. The concern with the rigour and credibility of qualitative methods has lead to the development of a number of checklist for assessing qualitative research. The purposes of this review were to describe the quality of the development of qualitative research in the medical field, focusing on oncology and palliative care, and to discuss the applicability of a descriptive checklist. Methods: A review was conducted on Medline and PsycINFO databases. On the basis of their abstract, papers found have been classified considering: publication year, kind of journal, paper type, data gathering method, sample size and declared methodological approach. A sub sample of the previous papers was than selected and their methodological characteristics were evaluated based on a descriptive checklist. Results: 351 abstracts and 26 full papers were analysed. An increase over time in the number of qualitative studies is evident. While most of the papers before 1999 were published on nursing journals (43%), afterwards also medical journals were largely represented. Psychological journals increased from 7% to 12%. The 22% of studies used a sample size lower than 15 and the 15% did not specify the sample size in the abstract. The methodological approach was also often not specified and the percentage increased in the second time period (from 73% to 80%). Grounded theory was the most employed methodological approach while phenomenology shows a decrease. Interview remains the most used data gathering method in both periods, even if it shows a 10% reductions, while focus group and multiple methods application both increase to 12%. The use of the descriptive checklist on the full text of the 26 papers shows that all the items present a larger percentage of satisfaction after 1 January 1999 than it was for the paper published before 1999. There seems to be two different types of quality criteria: specific and unspecific. The first ones mainly refer to qualitative paradigm (such as the relationship with the subject of research or evidence about how subjects perceived the research) and they are often not satisfied. In contrast unspecific criteria (such as the connection to an existing body of knowledge or systematic data gathering) which are mainly shared with the quantitative paradigm are more frequently satisfied. Conclusions: In oncology and palliative care the publication of qualitative studies increased during the nineties, reaching its peak in around 2000. The use of descriptive checklists even if it was not easy to apply, allows researchers to get a deeper insight into methodological facets that a global judgement may leave out. [ABSTRACT FROM AUTHOR]

Background: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature. Methods: Scoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched. Inclusion criteria: literature published in English; 2008–2023 (Oct); including children aged 0–19 years; focused on defining and/or quantifying population-level need for palliative care. Results: Three thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The 'Directory' of Life-Limiting Conditions; (3) 'List of Life-Limiting Conditions'; and (4) 'Complex Chronic Conditions'. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need. Conclusion: Overall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this. Methods: Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000–04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients' care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough's Weight of Evidence. Results: N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes. Conclusions: This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences. Trial registration: PROSPERO-CRD42022315252. [ABSTRACT FROM AUTHOR]

Background: Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture on many aspects of care in the palliative phase of an illness. However, disparities have been noted in the provision of palliative care to patients from culturally diverse backgrounds and challenges have been reported in meeting their needs and those of their families. Method: A qualitative systematic review of research papers identified through searching four databases. Papers were screened against inclusion criteria within the timeframe of January 2012 to March 2022. Data was extraction from all included studies and methodological quality assessed utilising the Critical Appraisal Skills Programme Tool. Thematic analysis followed Braun and Clarke's framework and the review is reported in line with PRISMA guidelines. Findings: The search yielded 1954 results of which 26 were included for appraisal and review. Four themes were identified: communication and connection, the role of the family in death and dying, the role of education in addressing uncertainty, and institutional and societal factors. The findings highlighted challenges of communication and a fear of acting in a culturally insensitive way, the pivotal role of the family, the need for an individualised approach to care, the universality of needs when approaching end of life and the need for education of practitioners. Conclusion: These findings suggest that healthcare practitioners draw on their existing skills to adapt their practice to meet the needs of patients from culturally diverse backgrounds. However, results also indicate a need for further education and identification of educational approaches best suited to supporting healthcare professionals in practice. [ABSTRACT FROM AUTHOR]

Background: Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory. Methodology: The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it. Results: Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback. Conclusion: Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Background: Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. Methods: The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. Results: The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. Conclusions: This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death. [ABSTRACT FROM AUTHOR]

Background: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016-2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006-15). Methods: A systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added. Results: In total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer -- nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%). Conclusions: There was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990--2005) and a similar review of Irish palliative care research (2002-2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended. [ABSTRACT FROM AUTHOR]

Background: Co-production of research aims to include people with lived experience of a phenomena throughout the research process. People experiencing homelessness often experience advance ill-health at a young age, yet access palliative care services at a disparately low rate to the level of palliative care need. The voices of people experiencing homelessness are infrequently heard throughout palliative care research, despite the complexities and intricacies of the area. Aim: To explore the experiences of experts in the field to identify key context considerations for involving people with lived experience of homelessness in palliative and end of life care research. Methods: Qualitative study comprising two data collection streams: interviews with professionals with experience of involving people experiencing homelessness in their work, and focus groups with people with lived experience (PWLE) of homelessness. Data were analysed using iterative, reflexive thematic analysis. Patient and Public Involvement contributors gave feedback on themes. Results: A total of 27 participants took part in semi-structured interviews (N = 16; professionals) or focus groups (N = 11; PWLE homelessness). Key considerations of involving people experiencing homelessness in palliative and end of life care research were developed into four key themes: complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement. Conclusions: Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research. Plain English summary: People experiencing homelessness often become unwell at a young age. They often experience several illnesses at the same time, and many people experiencing homelessness may also experience substance misuse disorders and/or mental illness. Despite this, they often are not identified as needing palliative care support, therefore rarely access services. Research into palliative care and homelessness may benefit from including people with lived experience of homelessness, yet this is rarely done, and is a sensitive and challenging area. The current study carried out interviews with professionals who have previously involved those with lived experience of homelessness in their work, and focus groups with people with lived experience of homelessness. Twenty seven participants took part: 16 professionals with extensive experience of supporting PEH and 11 people with lived experience. Key considerations of involving people experiencing homelessness in palliative care research were developed into four key themes: complexity of lived experience of homelessness; representation of homelessness within experts by experience; professionalising lived experience; and methods for involvement. Involvement of people with lived experience of homelessness is important in developing palliative care research. This paper begins to outline some contextual considerations for promoting involvement in a complex and intricate field of research. [ABSTRACT FROM AUTHOR]

Introduction: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. Methods: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. Results: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics". Conclusion: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged. [ABSTRACT FROM AUTHOR]

Background: Patients with palliative needs experience high psychological and symptom distress that may lead to hopelessness and impaired sense of dignity. Maintaining patient dignity or the quality of being valued is a core aim in palliative care. The notion of dignity is often explained by functionality, symptom relief and autonomy in decision making. However, this understanding and its implications in Middle Eastern countries is not clear. The aim of this review is to 1) explore the understanding of dignity and how dignity is preserved in adult patients with palliative care needs in the Middle East 2) critically assess the findings against the Dignity Model dominant in western literature. Method: Using an integrative review we searched four databases EMBASE, Psych-Info, CINAHL, and PubMed. These databases retrieve a broad literature on palliative care and are often chosen in other palliative care reviews. To enhance the search strategy, three online journals were hand searched, reference lists of review papers scanned, and forward citations sought. No time limits were applied. The retrieved papers were assessed independently by two authors including quality assessment using the Hawker's appraisal tool. Results: Out of the 5113 studies retrieved, 294 full texts were assessed. Sixteen studies were included for synthesis of which fourteen were published in Iran. Seven themes were developed after data analysis: Maintaining Privacy and Secrecy; Gentle communication with a dialogue that preserves hope instead of blunt truth-telling; Abundance characterised by accessibility to medical supplies and financial stability; Family Support where relatives deliver major assistance in care; Physical Fitness; Reliable health care, and Social justice that endorses equal care to all. Conclusion: The results are compatible with the existing evidence from the Dignity Model ascertaining that dignity is socially mediated and influenced by interactions and physical fitness. Nevertheless, the findings highlight that patient dignity is also shaped by the socio-political, cultural, and economic conditions of the country, where family support, gentle communication and accessible health care are essential elements. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? Aims: The paper aims to identify changes and challenges in palliative care due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. Methods: The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. Results and Conclusion: First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. [ABSTRACT FROM AUTHOR]

Objectives: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. Design: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). Participants: One hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached). Results: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. Conclusions: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations. [ABSTRACT FROM AUTHOR]

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. Methods: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. Results: In total, the Nordic child population comprises around six million children (0–19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. Conclusion: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context. [ABSTRACT FROM AUTHOR]

Background: Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. Methods: We undertook a scoping review using the framework by Arksey and O'Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. Results: The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 − 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. Conclusion: Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada. [ABSTRACT FROM AUTHOR]

It seems probable that some form of medically-assisted dying will become legal in England and Wales in the foreseeable future. Assisted dying Bills are at various stages of preparation in surrounding jurisdictions (Scotland, Republic of Ireland, Isle of Man, Jersey), and activists campaign unceasingly for a change in the law in England and Wales. There is generally uncritical supportive media coverage, and individual autonomy is seen as the unassailable trump card: 'my life, my death'. However, devising a law which is 'fit for purpose' is not an easy matter. The challenge is to achieve an appropriate balance between compassion and patient autonomy on the one hand, and respect for human life generally and medical autonomy on the other. More people should benefit from a change in the law than be harmed. In relation to medically-assisted dying, this may not be possible. Protecting the vulnerable is a key issue. Likewise, not impacting negatively on societal attitudes towards the disabled and frail elderly, particularly those with dementia. This paper compares three existing models of physician-assisted suicide: Switzerland, Oregon (USA), and Victoria (Australia). Vulnerability and autonomy are discussed, and concern expressed about the biased nature of much of the advocacy for assisted dying, tantamount to disinformation. A 'hidden' danger of assisted dying is noted, namely, increased suffering as more patients decline referral to palliative-hospice care because they fear they will be 'drugged to death'. Finally, suggestions are made for a possible 'least worse' way forward. One solution would seem to be for physician-assisted suicide to be the responsibility of a stand-alone Department for Assisted Dying overseen by lawyers or judges and operated by technicians. Doctors would be required only to confirm a patient's medical eligibility. Palliative-hospice care should definitely not be involved, and healthcare professionals must have an inviolable right to opt out of involvement. There is also an urgent need to improve the provision of care for all terminally ill patients. [ABSTRACT FROM AUTHOR]

Background: Palliative care in low- or middle-income country (LMIC) humanitarian settings is a new area, experiencing a degree of increased momentum over recent years. The review contributes to this growing body of knowledge, in addition to identifying gaps for future research. The overall aim is to systematically explore the evidence on palliative care needs of patients and/or their families in LMIC humanitarian settings. Methods: Arksey and O'Malley's (Int J Soc Res Methodol. 8:19-32, 2005) scoping review framework forms the basis of the study design, following further guidance from Levac et al. (Implement Sci 5:1-9, 2010), the Joanna Briggs Institute (JBI) Peters et al. (JBI Reviewer's Manual JBI: 406-452, 2020), and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) from Tricco et al. (Ann Intern Med 169:467-73, 2018). This incorporates a five-step approach and the population, concept, and context (PCC) framework. Using already identified key words/terms, searches for both published research and gray literature from January 2012 to October 2022 will be undertaken using databases (likely to include Cumulative Index of Nursing and Allied Health (CINAHL), MEDLINE, Embase, Global Health, Scopus, Applied Social Science Index and Abstracts (ASSIA), Web of Science, Policy Commons, JSTOR, Library Network International Monetary Fund and World Bank, Google Advanced Search, and Google Scholar) in addition to selected pre-print sites and websites. Data selection will be undertaken based on the inclusion and exclusion criteria and will be reviewed at each stage by two reviewers, with a third to resolve any differences. Extracted data will be charted in a table. Ethical approval is not required for this review. Discussion: Findings will be presented in tables and diagrams/charts, followed by a narrative description. The review will run from late October 2022 to early 2023. This is the first systematic scoping review specifically exploring the palliative care needs of patients and/or their family, in LMIC humanitarian settings. The paper from the review findings will be submitted for publication in 2023. [ABSTRACT FROM AUTHOR]

Background: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' Methods: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. Results: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. Conclusions: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East. [ABSTRACT FROM AUTHOR]

Background: Accurate estimation of the specialized pediatric palliative care (PPC) burden and the definition of the extent and quality of PPC service in Italy represent urgent needs to enable the proper allocation of PPC resources and the definition of prevention and educational plans. The PalliPed project aimed to provide the first comprehensive assessment of the characteristics of Italian patients requiring PPC, the quality and extent of regional PPC networks/facilities, and the number of dedicated resources. In this paper, we present the results of the second part of the project, regarding the implementation and quality of PPC services in Italy. Methods: The PalliPed study had an observational cross-sectional design. All Italian specialized PPC centers/facilities were invited to participate in the project and complete a survey on the characteristics of PPC centers/facilities in different care settings, reporting data as of 24 October 2022. Data were collected online. Results: 19 PPC specialized centers/facilities from 12 Italian regions and two autonomous provinces responded to the survey. Among them, 11 are regional referral centers. Seven Italian regions out of 20 reported no PPC centers/facilities, mainly in central-southern Italy. Less than half (45%) of the regional referral centers cover the entire regional territory, and three offer 24/7 service. Ten centers have a dedicated team. Half of the eight non-referral centers offer 24/7 service and have a dedicated team. A total of 1,092 patients were reported by 18 centers as of 24 October 2022. Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). The dedicated staff is inadequate, and most healthcare providers are not recognized at an institutional level. A shortage of 'young' staff and a lack of specific training was reported, particularly among nurses (77% had no training in PPC). Conclusions: The results obtained show how training, information, and research interventions are still necessary for the reorganization of the available resources and definition of proper strategies to respond dynamically to the new emerging needs of these populations. At the same time, our study represents a first step in defining a national registry of PPC models, useful for monitoring evolutions, and critical issues and planning any new or corrective strategy. [ABSTRACT FROM AUTHOR]

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide. [ABSTRACT FROM AUTHOR]

Background: In the last decade, there has been a growing concern to make palliative care more culturally sensitive and contextually appropriate. This concern is also relevant in Indonesia, where the progress of palliative care, particularly in home-based care, has been slow. Like elsewhere in the world, there has been a growing awareness of the importance of shifting from a curative orientation towards a palliative one, especially in cases where further medical treatment is futile. In this paper we argue that the development of palliative care practices would benefit greatly from learning about the values that are important for patients, families, and health professionals. It is important to understand these values to support forms of care that aim to enhance quality of life. To demonstrate this, we analyse the care values people in rural Java evoke in their home palliative care practices. Methods: We conducted an eight-month ethnographic study involving forty-nine patients, families, and health professionals. Results: We identified three specific Javanese Islamic values: making an effort (ikhtiar), being sincere (ikhlas), and being in a state of surrender (pasrah). These values influenced the participants' activities in a palliative care setting. Based on our findings, we suggest three strategies to incorporate these values into palliative care practices and to better facilitate palliative care's integration into Javanese Muslim communities. The first strategy is to include efforts to reduce suffering and improve the quality of life using the concept of ikhtiar. The second strategy is to foster sincerity (ikhlas) to help patients and families accept the realities of their condition and provide care for patients at home. The last strategy is to clarify that palliative care is not synonymous with 'giving up' but can be seen as an act of pious surrender. Conclusions: Our study identified three Islamic-Javanese values that can be incorporated to strategies aiming at enhancing palliative care practices, resulting in care focused on improving quality of life rather than futile attempts at a cure. [ABSTRACT FROM AUTHOR]

Background: Blogging can help to maximise the impact of one's work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders' views of blogs as a means to translate research findings. Methods: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis. Results: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs "sometimes" (39.1%), with < 19% reading them "often" or "very often". Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. Conclusions: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice. [ABSTRACT FROM AUTHOR]

Background/aims: Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be particularly challenging. This is because patients living with advanced malignant or non-malignant disease have a high risk of hospitalisation and/or death as a result of progression of their disease rather than due to the trial intervention or procedures. This paper presents a number of recommendations for managing serious adverse event reporting that are drawn from two palliative care non-pharmacological trials. Methods: The recommendations were iteratively developed across a number of exemplar trials. This included examining national and international safety reporting guidance, reviewing serious adverse event reporting procedures from other pharmacological and non-pharmacological trials, a review of the literature and collaboration between the ACTION study team and Data Safety Monitoring Committee. These two groups included expertise in oncology, palliative care, statistics and medical ethics and this collaboration led to the development of serious adverse event reporting procedures. Results: The recommendations included; allowing adequate time at the study planning stage to develop serious adverse event reporting procedures, especially in multi-national studies or research naïve settings; reviewing the level of trial oversight required; defining what a serious adverse event is in your trial based on your study population; development and implementation of standard operating procedures and training; refining the reporting procedures during the trial if necessary and publishing serious adverse events in findings papers. Conclusions: There is a need for researchers to share their experiences of managing this challenging aspect of trial conduct. This will ensure that the processes for managing serious adverse event reporting are continually refined and improved so optimising patient safety. Trial registration: ACTION trial registration number: ISRCTN63110516 (date of registration 03/10/2014). Namaste trial registration number: ISRCTN14948133 (date of registration 04/10/2017). [ABSTRACT FROM AUTHOR]

Background: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups. Methods: Mixed methods systematic review. The primary outcome measure was differences in receiving pain medication between people from different racial and ethnic groups. Five electronic databases were searched. Two researchers independently assessed quality using JBI checklists, weighted evidence, and extracted data. The quantitative findings on the primary outcome measure were cross-tabulated, and a thematic analysis was undertaken on the mixed methods studies. Themes were formulated into a conceptual/thematic matrix. Patient representatives from UK ethnically diverse groups were consulted. PRISMA 2020 guidelines were followed. Results: Eighteen papers were included in the primary outcome analysis. Three papers were rated 'High' weight of evidence, and 17/18 (94%) were based in the USA. Ten of the eighteen (56%) found no significant difference in the pain medication received between people of different ethnic groups. Forty-six papers were included in the mixed methods synthesis; 41/46 (89%) were based in the USA. Key themes: Patients from different ethnically diverse groups had concerns about tolerance, addiction and side effects. The evidence also showed: cultural and social doctor-patient communication issues; many patients with unmet pain management needs; differences in pain assessment by racial group, and two studies found racial and ethnic stereotyping. Conclusions: There was not enough high quality evidence to draw a conclusion on differences in receiving pain medication for people with advanced disease from different racial and ethnic groups. The mixed methods findings showed commonalities in fears about pain medication side effects, tolerance and addiction across diverse ethnic groups. However, these fears may have different foundations and are differently prioritised according to culture, faith, educational and social factors. There is a need to develop culturally competent pain management to address doctor-patient communication issues and patients' pain management concerns. Trial registration: PROSPERO-CRD42020167890. [ABSTRACT FROM AUTHOR]

Background: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. Methods: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. Results: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. Conclusions: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home. [ABSTRACT FROM AUTHOR]

Background: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access. Methods: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display%5frecord.php?ID=CRD42017080038. Results: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access. Conclusions: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards. [ABSTRACT FROM AUTHOR]

Background: There is widespread agreement about the importance of spiritual training programs (STPs) for healthcare professionals caring for cancer patients, and that reflecting on one's spirituality is the first step. Health professionals (HPs) working in hospitals must develop this dimension to guarantee the quality of life as well as spiritual and emotional support. In this paper, we propose a possible training format for hospital professionals and assess its implementation. Methods: This is a phase 0-I study that follows the Medical Research Council (MRC) framework. The program was implemented for hospital palliative care specialists. The program included one theory lesson, three spiritual interactions, four pieces of reflective writing, and two individual follow-up sessions for each participant. The evaluation was performed quantitatively according to the MRC framework and qualitatively according to Moore's framework with data triangulation from interviews, reflective writings, and indicators. Results: The program was implemented for palliative care physicians, nurses, psychologists, and bioethicists according to the plan, and the program components were highly appreciated by the participants. The results suggest the feasibility of a training course with some corrections, regarding both the components of the training and organizational issues. The qualitative analysis confirmed a shift in the meaning of the themes we identified. The trainees went from intrapersonal spirituality to interpersonal spirituality (engagement with the other person's spirituality, acknowledging their unique spiritual and cultural worldviews, beliefs, and practices), with colleagues, patients, and people close to them. The training had an impact on Moore's Level 3b. Conclusions: Spiritual training for hospital professionals working in palliative care is feasible. Having time dedicated to spirituality and the ongoing mentorship of spiritual care professionals were suggested as key elements. The next step is increasing awareness of spirituality from our hospital reality and creating a stable competent group (with nurses, chaplains, nuns, counselors, etc.) with the support of the management. [ABSTRACT FROM AUTHOR]

Background: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. Methods: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. Results: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book (http://www.re-equipp.co.uk/) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. Conclusion: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research. Plain Language Summary: Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a "jargon buster", an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation. [ABSTRACT FROM AUTHOR]

Background: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). Methods: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. Results: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. Conclusions: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients. [ABSTRACT FROM AUTHOR]

Background: Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee (SAC) recommendations were implemented throughout the Emergency Medicine Palliative Care Access (EMPallA) trial. EMPallA is a multi-center, pragmatic two-arm randomized controlled trial (RCT) comparing the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. Methods: A SAC consisting of 18 individuals, including patients with palliative care experience, members of healthcare organizations, and payers was convened for the EMPallA trial. The SAC engaged in community-based participatory research and assisted in all aspects from study design to dissemination. The SAC met with the research team quarterly and annually from project inception to dissemination. Using meeting notes and recordings we completed a qualitative thematic analysis using an iterative process to develop themes and subthemes to summarize SAC recommendations throughout the project's duration. Results: The SAC convened 16 times between 2017 and 2020. Over the course of the project, the SAC provided 41 unique recommendations. Twenty-six of the 41 (63%) recommendations were adapted into formal Institutional Review Board (IRB) study modifications. Recommendations were coded into four major themes: Scientific, Pragmatic, Resource and Dissemination. A majority of the recommendations were related to either the Scientific (46%) or Pragmatic (29%) themes. Recommendations were not mutually exclusive across three study phases: Preparatory, execution and translational. A vast majority (94%) of the recommendations made were related to the execution phase. Major IRB study modifications were made based on their recommendations including data collection of novel dependent variables and expanding recruitment to Spanish-speaking patients. Conclusions: Our study provides an example of successful integration of a SAC in the conduct of a pragmatic, multi-center RCT. Future trials should engage with SACs in all study phases to ensure trials are relevant, inclusive, patient-focused, and attentive to gaps between health care and patient and family needs. Trial Registration: Clinicaltrials.gov Identifier: NCT03325985, 10/30/2017. Plain English summary: Clinical research should involve patient and community stakeholder perspectives to make sure the study addresses questions important to the studied population. One way to do this is by creating a group of stakeholders who can advise on the conduct of a study. We assembled a Study Advisory Committee (SAC) for the Emergency Medicine Palliative Care Access (EMPallA) trial. The purpose of this clinical trial is to compare the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. This paper describes how the SACs involvement translated into direct impacts on the EMPallA trial. The trial research team held regular meetings with the SAC throughout the trial process. Their involvement led to many significant changes in the trial, such as expanding recruitment inclusion criteria (Spanish-speaking patients), and including survey instruments to measure lonelines and caregiver burden. The SAC also devised strategies to overcome patient and caregiver recruitment and retention challenges, including the creation of patient-friendly materials and training for research coordinators. This study provides a successful example of how actively engaging patient and community stakeholders, through committee engagement, can promote patient priorities in all phases of a trial while facilitating patient recruitment and retention. [ABSTRACT FROM AUTHOR]

Background: Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi's Waterloo Coalition Initiative (WCI) – a local project promoting palliative care integration through service development, staff training, and increased service access. Methods: Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. Results: 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. Conclusion: Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level. [ABSTRACT FROM AUTHOR]

Background: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. Methods: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker's appraisal tool. A narrative synthesis approach using Popay's work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members' bereavement experiences were included. We excluded papers studying bereavement through the death of a child. Results: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. Conclusion: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research. [ABSTRACT FROM AUTHOR]

Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death. Objective: To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts. Method: a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies. Results: Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women's perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents' ability to formulate realistic goals and meaningful interpersonal relationships, respectively. Conclusion: Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life. Health professionals can manage the family's hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study. Protocol registration: https://osf.io/u9xr5/. [ABSTRACT FROM AUTHOR]

Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations. [ABSTRACT FROM AUTHOR]

Background: Globally, digital transformation has been sweeping through healthcare in recent years. Reflecting this global change, Australia's health and social care sector is also undergoing rapid digitalisation. Digital approaches can enhance care planning and coordination activities, as well as improve efficiencies in documentation and coordination of care. As the aged care environment continues to become digitalised into the future, there is an expectation that nurses practise the delicate art and science of compassionate caregiving in a technology-proliferated environment where care planning, provisioning, and documenting require digital knowledge and skills. Aim: To explore the perspectives and expectations of nurses working in residential aged care setting regarding the utilisation of technology to enhance care at the end-of-life. Methods: A qualitative descriptive research study design based on the secondary analysis of data collected as part of a larger study. Data collection was conducted using six semi-structured interviews and 11 focus group discussions with care workers, nurses, and nursing managers working in Australian residential aged care setting. Results: A total of 64 participants took part in this study. Overall, four themes were generated from the data as following: engagement with various digital systems and platforms; 2) ambivalence toward technology; 3) challenges and concerns in technology use; and 4) anticipated technology roles in end-of-life care. This study found that, nurses in Australian RAC are open to engage with technologies for end-of-life provision, despite some ambivalence and challenges encountered in the process. Conclusion: Nurses in residential aged care have an important role in end-of-life care of many older Australians. Digital approaches offer care and coordination opportunities however require the aged care sector and nurses to take up these opportunities. While nurses demonstrate openness to technology, focus needs to be placed on technology use support. This presents an opportunity for nurses to actively shape the future of digital innovations in aged care, ensuring high-quality, compassionate care for residents in their final stages of life. [ABSTRACT FROM AUTHOR]

Background: Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. Methods: Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups' and carers' access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals' experiences. Results: Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. Conclusions: This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions. [ABSTRACT FROM AUTHOR]

Background: Clinicians are inaccurate at predicting survival. The 'Surprise Question' (SQ) is a screening tool that aims to identify people nearing the end of life. Potentially, its routine use could help identify patients who might benefit from palliative care services. The objective was to assess the accuracy of the SQ by time scale, clinician, and speciality.Methods: Searches were completed on Medline, Embase, CINAHL, AMED, Science Citation Index, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Open Grey literature (all from inception to November 2016). Studies were included if they reported the SQ and were written in English. Quality was assessed using the Newcastle-Ottawa Scale.Results: A total of 26 papers were included in the review, of which 22 reported a complete data set. There were 25,718 predictions of survival made in response to the SQ. The c-statistic of the SQ ranged from 0.512 to 0.822. In the meta-analysis, the pooled accuracy level was 74.8% (95% CI 68.6-80.5). There was a negligible difference in timescale of the SQ. Doctors appeared to be more accurate than nurses at recognising people in the last year of life (c-statistic = 0.735 vs. 0.688), and the SQ seemed more accurate in an oncology setting 76.1% (95% CI 69.7-86.3).Conclusions: There was a wide degree of accuracy, from poor to reasonable, reported across studies using the SQ. Further work investigating how the SQ could be used alongside other prognostic tools to increase the identification of people who would benefit from palliative care is warranted.Trial Registration: PROSPERO CRD42016046564 . [ABSTRACT FROM AUTHOR]

Background: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians' attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors. Methods: We systematically searched Pubmed, Cinahl®, Embase®, Scopus®, and Web of Science™ in early 2021 and updated the search results in late 2021. Eligible articles were published in English, reported on investigations of physicians' attitudes and experiences about withholding/withdrawing LST for children, and were quantitative. Results: In 23 included articles, overall, physicians stated that withholding/withdrawing LST can be ethically legitimate for children with life-limiting conditions. Physicians tended to follow parents' and parents-patient's wishes about withholding/withdrawing or continuing LST when they specified treatment preferences. Although most physicians agreed to share decision-making with parents and/or children, they nonetheless reported experiencing both negative and positive feelings during the decision-making process. Moderating factors were identified, including barriers to and facilitators of withholding/withdrawing LST. In general, there was only a limited number of quantitative studies to support the hypothesis that some factors can influence physicians' attitudes and experiences toward LST. Conclusion: Overall, physicians agreed to withhold/withdraw LST in dying patients, followed parent-patients' wishes, and involved them in decision-making. Barriers and facilitators relevant to the decision-making regarding withholding/withdrawing LST were identified. Future studies should explore children's involvement in decision-making and consider barriers that hinder implementation of decisions about withholding/withdrawing LST. [ABSTRACT FROM AUTHOR]

Background: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. Results: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences. [ABSTRACT FROM AUTHOR]

Objectives: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. Methods: A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. Results: Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). Conclusions: ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. [ABSTRACT FROM AUTHOR]

Background: Palliative care provision is expanding in low and middle income countries. Services are developing in the Caribbean in response to the region's ageing population, the significant burden of cancer, non-communicable diseases and HIV/AIDS. Appraisal of the existing evidence on palliative care needs, models of care, interventions and outcomes in the Caribbean is essential to inform emerging practice and future research. Methods: Systematic review and narrative synthesis. Following implementation of a search strategy, titles, abstracts and full texts were screened. Data from nine studies were synthesized. The Qualsyst tools were used to assess the quality of quantitative and qualitative studies. Data were extracted into a common table, and themes were generated from the available peer review evidence using narrative synthesis. Results: Nine papers were retained for appraisal. Eight papers described palliative care needs in the Caribbean. The needs for analgesia, support for patients, education and training of staff in palliative care and palliative care services were identified in the literature. Models of care for palliative care in the Caribbean were not described in great depth (n = 2 papers) and no intervention studies were found. Outcomes of palliative care such as quality of life, quality of care, and patient's preferred place of care and death were identified from six papers. Quantitative methodology was used in seven of the nine papers in this review. One paper used a mixed methodology design, and one a qualitative approach. Conclusions: Research from the Caribbean highlights the need for health care policy, training of staff, education, and access to analgesia and palliative care support services in this region. This sparse evidence must be taken into consideration with cultural beliefs and preferences of the Caribbean population in order to achieve improved outcomes for patients, their caregivers and health care professionals. This underscores the importance for more research in the field of palliative care in the Caribbean. [ABSTRACT FROM AUTHOR]

Background: Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. Methods: A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. Results: Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents' remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. Conclusions: This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents' wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes. [ABSTRACT FROM AUTHOR]

Background: Ureteral metastasis from gastric cancers are rare and can be a cause of ureteral obstruction. There have been few published case reports in the literature. In this paper, we report an additional case and a review of the literature of all the previous reported cases. Case presentation: A 67 years old North African women who was treated four years before for a gastric adenocarcinoma, presented with abdominal pain. Imaging and endoscopy showed a mural stenosis of the left ureter, without any other abnormality. Histopathology confirmed the gastric origin of the metastasis. A palliative chemotherapy was foreseen, but due to the deterioration of the general condition of the patient, she received palliative care. We have also reviewed the literature and reported the previously published cases of ureteral metastasis from gastric cancer. Conclusions: It is worth recalling that in a context of neoplasia and with the presence of signs of ureteral obstruction, it is important to keep in mind the possibility of a ureteral metastasis. [ABSTRACT FROM AUTHOR]

Background: In 2016 a French law created a new right for end-of-life patients: deep and continuous sedation maintained until death, with discontinuation of all treatments sustaining life such as artificial nutrition and hydration. It was totally unprecedented that nutrition and hydration were explicitly defined in France as sustaining life treatments, and remains a specificity of this law. End- of-life practices raise ethical and practical issues, especially in Europe actually. We aimed to know how oncology professionals deal with the law, their opinion and experience and their perception. Methods: Online mono-centric survey with closed-ended and open-ended questions in a Cancer Comprehensive Centre was elaborated. It was built during workshops of the ethics committee of the Institute, whose president is an oncologist with a doctoral degree in medical ethics. 58 oncologists and 121 nurses—all professionals of oncological departments -, received it, three times, as mail, with an information letter. Results: 63/ 179 professionals answered the questionnaire (35%). Conducting end-of-life discussions and advanced care planning were reported by 46/63 professionals. In the last three months, 18 doctors and 7 nurses faced a request for a deep and continuous sedation maintained until death, in response to physical or existential refractory suffering. Artificial nutrition and even more hydration were not uniformly considered as treatment. Evaluation of the prognosis, crucial to decide a deep and continuous sedation maintained until death, appears to be very difficult and various, between hours and few weeks. Half of respondents were concerned that this practice could lead to or hide euthanasia practices, whereas for the other half, this new law formalised practices necessary for the quality of palliative care at the end-of-life. Conclusion: Most respondents support the implementation of deep and continuous sedation maintained until death in routine end-of-life care. Nevertheless, difficulty to stop hydration, confusion with euthanasia practices, ethical debates it provokes and the risk of misunderstanding within teams and with families are significant. This is certainly shared by other teams. This could lead to a multi-centric survey and if confirmed might be reported to the legislator. Key messages: What is already known about the topic? Studies have explored the ethics of choices, such as withholding or withdrawing treatments, moral positions to euthanasia, sedation practices or evaluation of end-of-life prognosis, but none have explored, in real life, health care professionals' opinion and experience of all these aspects combined, in palliative cancer care. What this paper adds: This study highlights the discrepancy between some elements of the law and opinions of carers, along with the risk of conflict within teams and with families. It also highlights the risk of drifting towards euthanasia. Implications for practice, theory or policy: this study could lead to a multi-centric national study and could, if confirmed, add the voice of professionals to the ethical debate on end-of-life practices in France, which could be reported to the legislator. It could also lead colleagues of abroad to analyse practices in regard of their national laws on end-of-life. [ABSTRACT FROM AUTHOR]

Background: Patient reported outcome measures are frequently used standard questionnaires or tools designed to collect information from patients regarding their health status and care. Their use enables accurate and relevant insight into changes in health, quality of life, and symptom severity to be acquired. The purpose of this scoping review was to identify PROMs that had been subject to rigorous development and were suitable for use in palliative and end of life care for clinical practice and/or research purposes. The review had a specific focus on measures which could be used to assess perceptions of dignity in these contexts.Methods: A scoping review of English-language papers published between 2005 and 2015. Searches were devised in conjunction with an information science specialist and were undertaken in Medline; PsycINFO; EMBASE; CINAHL; Social Science Citation Index; ASSIA; CENTRAL; CDSR; DARE; HTA; Oxford PROM Bibliography; PROQOLID, using dignity related terms such as personhood; dignity or dignified; patient-centred care; which were linked (via the Boolean operator "AND") to care-related terms such as terminal care; hospice care; palliative care; end of life. Papers were assessed against inclusion criteria and appraised for quality.Results: The search strategy produced an initial 7845 articles. After three rounds of eligibility assessment, eight articles discussing eight patients reported outcome measures were found to meet the inclusion criteria and were included in the final review. These underwent a thorough critical appraisal process. All seven studies were empirical research focused on the development and testing of a PROM.Conclusions: The eight patient reported outcome measures had all undergone some psychometric testing, and covered dignity aspects suggesting that they could be considered for use for research purposes to assess dignity. There were also indications that some could be implemented into a clinical setting. However, each measure had limitations and scope for further development. [ABSTRACT FROM AUTHOR]

Background: Older people with noncancer conditions are less likely to be referred to palliative care services due to the inherent uncertain disease trajectory and a lack of standardised referral criteria. For older adults with noncancer conditions where prognostic estimation is unpredictable, needs-based criteria are likely more suitable. Eligibility criteria for participation in clinical trials on palliative care could inform a needs-based criteria. This review aimed to identify and synthesise eligibility criteria for trials in palliative care to construct a needs-based set of triggers for timely referral to palliative care for older adults severely affected by noncancer conditions. Methods: A systematic narrative review of published trials of palliative care service level interventions for older adults with noncancer conditions. Electronic databases Medline, Embase, CINAHL, PsycINFO, CENTRAL, and ClinicalTrials.gov. were searched from inception to June 2022. We included all types of randomised controlled trials. We selected trials that reported eligibility criteria for palliative care involvement for older adults with noncancer conditions, where > 50% of the population was aged ≥ 65 years. The methodological quality of the included studies was assessed using a revised Cochrane risk-of-bias tool for randomized trials. Descriptive analysis and narrative synthesis provided descriptions of the patterns and appraised the applicability of included trial eligibility criteria to identify patients likely to benefit from receiving palliative care. Results: 27 randomised controlled trials met eligibility out of 9,584 papers. We identified six major domains of trial eligibility criteria in three categories, needs-based, time-based and medical history-based criteria. Needs-based criteria were composed of symptoms, functional status, and quality of life criteria. The major trial eligibility criteria were diagnostic criteria (n = 26, 96%), followed by medical history-based criteria (n = 15, 56%), and physical and psychological symptom criteria (n = 14, 52%). Conclusion: For older adults severely affected by noncancer conditions, decisions about providing palliative care should be based on the present needs related to symptoms, functional status, and quality of life. Further research is needed to examine how the needs-based triggers can be operationalized as referral criteria in clinical settings and develop international consensus on referral criteria for older adults with noncancer conditions. [ABSTRACT FROM AUTHOR]

Background: The communication processes between different stakeholders in outpatient palliative care face challenges when multiprofessional teams want to keep each other updated on patient information. Meanwhile, the software market offers different tools to connect these teams in real-time to improve communication. In the research project ADAPTIVE (Impact of Digital Technologies in Palliative Care), we investigated how information and communication technology affects collaboration and work in multiprofessional teams and what advantages and disadvantages the use of said software might entail. Methods: We conducted 26 semi-structured interviews between August and November 2020 with general practitioners (n = 8), palliative care nurses (n = 17), and a pharmacist (n = 1). They were conducted in a hybrid format, meaning that both face-to-face interviews and telephone interviews were carried out. Subsequently, we analyzed the interviews following the qualitative content analysis according to Kuckartz. Results: Information and communication software has the potential to enable faster communication and delegation of tasks and to simplify communication and task management between providers. Furthermore, it creates the opportunity to decrease unnecessary supervision of duties and responsibilities for physicians in multiprofessional teams. Therefore, it allows facilitating the collaboration between multiprofessional teams that work independently of each other but care for the same patients. All providers have the same knowledge about their patients without time-consuming coordination such as phone calls or search processes in paper documentation. On the other hand, mishandling, poor Internet connection, and unfamiliarity with various features can diminish these benefits. Conclusion: Even though the use of such software offers many advantages, these advantages only reveal themselves if the software is used as it was intended by the developers. Misuse and unawareness of the individual functions can lead to the full potential not being realized. The software developers frequently offer specialized training, and the multiprofessional teams should utilize that to improve team communication, facilitate tasks, and allow physicians to delegate tasks. Trial registration: The study is registered in the German Clinical Trials Register (DRKS): https://www.drks.de/drks%5fweb/navigate.do?navigationId=trial.HTML&TRIAL%5fID=DRKS00021603 (Registration number: DRKS00021603; date of first registration: 02/07/2020). [ABSTRACT FROM AUTHOR]

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]