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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: 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: 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: 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: 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: 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: 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: 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: 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: 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: 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: 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: Non-beneficial treatment is closely tied to inappropriate treatment at the end-of-life. Understanding the interplay between how and why these situations arise in acute care settings according to the various stakeholders is pivotal to informing decision-making and best practice at end-of-life. Aim: To define and understand determinants of non-beneficial and inappropriate treatments for patients with a non-cancer diagnosis, in acute care settings at the end-of-life. Design: Systematic review of peer-reviewed studies focusing on the above and conducted in upper-middle- and high-income countries. A narrative synthesis was undertaken, guided by Realist principles. Data sources: Cochrane; PubMed; Scopus; Embase; CINAHL; and Web of Science. Results: Sixty-six studies (32 qualitative, 28 quantitative, and 6 mixed-methods) were included after screening 4,754 papers. Non-beneficial treatment was largely defined as when the burden of treatment outweighs any benefit to the patient. Inappropriate treatment at the end-of-life was similar to this, but additionally accounted for patient and family preferences. Contexts in which outcomes related to non-beneficial treatment and/or inappropriate treatment occurred were described as veiled by uncertainty, driven by organizational culture, and limited by profiles and characteristics of involved stakeholders. Mechanisms relating to 'Motivation to Address Conflict & Seek Agreement' helped to lessen uncertainty around decision-making. Establishing agreement was reliant on 'Valuing Clear Communication and Sharing of Information'. Reaching consensus was dependent on 'Choices around Timing & Documenting of end-of-life Decisions'. Conclusion: A framework mapping determinants of non-beneficial and inappropriate end-of-life treatment is developed and proposed to be potentially transferable to diverse contexts. Future studies should test and update the framework as an implementation tool. Trial registration: PROSPERO Protocol CRD42021214137. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. Methods: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. Results: Three themes emerged – healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. Conclusion: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions. [ABSTRACT FROM AUTHOR]

Background: Despite the significant benefits of palliative care (PC) services for cancer patients, multiple challenges hinder the provision of PC services for these patients. Low- and middle-income countries (LMICs) are witnessing a sharp growth in the burden of non-communicable diseases. There is a significant gap between demand and supply of PC in LMICs in current health services. This review aims to synthesise evidence from previous reviews and deliver a more comprehensive mapping of the existing literature about personal, system, policy, and organisational challenges and possible facilitators on the provision of PC services for cancer patients in LMICs. Methods: A systematic review of reviews was performed following PRISMA guidelines. PubMed, EMBASE, SCOPUS, PsycINFO, Web of Sciences, CINAHL, and Cochrane Library databases were searched to identify review papers published between 2000 and 2018 that considered challenges and possible facilitators to PC provision. A modified socioecological model was used as a framework for analysing and summarising findings. Results: Fourteen reviews were included. The reviews varied in terms of aim, settings, and detail of the challenges and possible facilitators. The main challenges of personal and health care systems included knowledge deficits and misunderstandings from patients, families, the general public, and health care providers about PC; and inadequate number of trained workforce. Besides, limited physical infrastructure, insufficient drugs for symptom relief and lack of a comprehensive national plan for implementing PC were the core organisational and policy level challenges that were recognised. Furthermore, the main possible facilitators that were identified included provision of adequate training for health care providers and health education for patients, families and the general public to enhance their knowledge, beliefs, and attitudes to PC. Finally, involvement of policymakers and making drugs available for symptom relief should also be in place to improve the health care systems. Conclusions: Understanding challenges to the provision of PC for people with cancer could help in the development of a PC pathway in LMICs. This knowledge could be used as a guide to develop an intervention programme to improve PC. Political influence and support are also required to ensure the sustainability and the provision of high-quality PC. [ABSTRACT FROM AUTHOR]

Background: Palliative care trials have higher rates of attrition. The MORECare guidance recommends applying classifications of attrition to report attrition to help interpret trial results. The guidance separates attrition into three categories: attrition due to death, illness or at random. The aim of our study is to apply the MORECare classifications on reported attrition rates in trials. Methods: A systematic review was conducted and attrition classifications retrospectively applied. Four databases, EMBASE; Medline, CINHAL and PsychINFO, were searched for randomised controlled trials of palliative care populations from 01.01.2010 to 08.10.2016. This systematic review is part of a larger review looking at recruitment to randomised controlled trials in palliative care, from January 1990 to early October 2016. We ran random-effect models with and without moderators and descriptive statistics to calculate rates of missing data. Results: One hundred nineteen trials showed a total attrition of 29% (95% CI 28 to 30%). We applied the MORECare classifications of attrition to the 91 papers that contained sufficient information. The main reason for attrition was attrition due to death with a weighted mean of 31.6% (SD 27.4) of attrition cases. Attrition due to illness was cited as the reason for 17.6% (SD 24.5) of participants. In 50.8% (SD 26.5) of cases, the attrition was at random. We did not observe significant differences in missing data between total attrition in non-cancer patients (26%; 95% CI 18–34%) and cancer patients (24%; 95% CI 20–29%). There was significantly more missing data in outpatients (29%; 95% CI 22–36%) than inpatients (16%; 95% CI 10–23%). We noted increased attrition in trials with longer durations. Conclusion: Reporting the cause of attrition is useful in helping to understand trial results. Prospective reporting using the MORECare classifications should improve our understanding of future trials. [ABSTRACT FROM AUTHOR]

Background: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase. Methods: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used. Results: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented. Conclusions: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system. [ABSTRACT FROM AUTHOR]

Background: Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness. Methods: A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations. Results: Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes. Conclusions: In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally. [ABSTRACT FROM AUTHOR]

Background: Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. Methods and design: A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. Discussion: We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences. [ABSTRACT FROM AUTHOR]

Background Volunteers make a major contribution to palliative patient care, and qualitative studies have been undertaken to explore their involvement. With the aim of making connections between existing studies to derive enhanced meanings, we undertook a systematic review of these qualitative studies including synthesising the findings. We sought to uncover how the role of volunteers with direct contact with patients in specialist palliative care is understood by volunteers, patients, their families, and staff. Methods We searched for relevant literature that explored the role of the volunteer including electronic citation databases and reference lists of included studies, and also undertook handsearches of selected journals to find studies which met inclusion criteria. We quality appraised included studies, and synthesised study findings using a novel synthesis method, thematic synthesis. Results We found 12 relevant studies undertaken in both inpatient and home-care settings, with volunteers, volunteer coordinators, patients and families. Studies explored the role of general volunteers as opposed to those offering any professional skills. Three theme clusters were found: the distinctness of the volunteer role, the characteristics of the role, and the volunteer experience of the role. The first answers the question, is there a separate volunteer role? We found that to some extent the role was distinctive. The volunteer may act as a mediator between the patient and the staff. However, we also found some contradictions. Volunteers may take on temporary surrogate family-type relationship roles. They may also take on some of the characteristics of a paid professional. The second cluster helps to describe the essence of the role. Here, we found that the dominant feature was that the role is social in nature. The third helps to explain aspects of the role from the point of view of volunteers themselves. It highlighted that the role is seen by volunteers as flexible, informal and sometimes peripheral. These characteristics some volunteers find stressful. Conclusions This paper demonstrates how qualitative research can be sythnesised systematically, extending methodological techniques to help answer difficult research questions. It provides information that may help managers and service planners to support volunteers appropriately. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning. Methods: Six databases were searched for peer-reviewed research papers from their respective inception through December 2016. All of the resulting studies relevant to both advance care planning and social worker were examined. The findings of relevant studies were synthesized thematically. Results: Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers' attitudes toward advance care planning; social workers' knowledge, education and training regarding advance care planning; social workers' involvement in advance care planning; social workers' perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities. Conclusions: This study provides useful knowledge for implementing advance care planning through illustrating social workers' perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers' involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts. [ABSTRACT FROM AUTHOR]

Background: Caring for individuals and their families with a life-limiting, symptomatic illness and those who are dying has long been an integral role of palliative care nurses. Yet, over the last two decades, the specialty of palliative care has undergone significant changes in technology and medical treatments which have altered both the disease trajectory and the delivery of palliative care. To date, there is little evidence as to the impact of these medical and nursing advancements on the role of nurses working in palliative care and how in clinical practice these nurses continue to uphold their nursing values and the philosophy of palliative care. Methods: An integrative review was conducted searching seven academic databases from the time period of January 2010 – December 2019 for studies identifying research relating to the role of the palliative care nurse working in specialist palliative care units and hospices. Research articles identified were screened against the inclusion criteria. Data extraction was completed on all included studies and the Crowe Critical Appraisal Tool was utilized to appraise the methodological quality and thematic analysis was performed guided by Braun and Clarke's framework. The review was conducted and reported in lines with PRISMA guidelines. Results: The search yielded 22,828 articles of which 7 were included for appraisal and review. Four themes were identified: (1) enhancing patient-centred care (2) being there (3) exposure to suffering and death (4) nursing values seen but not heard. The findings highlight that while palliative care nurses do not articulate their nurse values, their actions and behaviors evident within the literature demonstrate care, compassion, and commitment. Conclusion: These findings suggest that there is a need for nurses working in specialist palliative care units to articulate, document, and audit how they incorporate the values of nursing into their practice. This is pivotal not only for the future of palliative nursing within hospice and specialist palliative care units but also to the future of palliative care itself. To make visible the values of nursing further practice-based education and research is required. [ABSTRACT FROM AUTHOR]

Background: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. Methods: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0–18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. Results: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. Conclusions: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings. [ABSTRACT FROM AUTHOR]

Background: Access to palliative care is recognised as a human right, yet clear disparities exist. There have been recent appeals to examine people's contexts and interactions with social systems which for many, adversely influence their utilisation of palliative care. Intersectionality provides a way to understand these drivers of inequity and ultimately advocate for change. Aim: To identify and describe published studies utilising intersectionality in relation to need, access and experience of palliative care. Design: A scoping review. Data sources: Medline, PsycINFO, CINAHL and Google Scholar databases and a manual search were undertaken for studies published up to January 2023. Included studies were evidence based articles where palliative or end of life care was the focus and intersectionality was identified and/or applied to the research that was undertaken. Results: Ten published studies were included. An analytic framework was developed to identify the extent that intersectionality was utilised in each study. A wide range of different groups were researched across the studies, with most focusing on aspects of their participant's identity in relation to palliative care access and experience. Common topics of power, heterogeneity of people within the health system and barriers to palliative care were illuminated across the studies. Conclusions: Very limited research to date has utilised intersectionality to understand access, utilisation and experience of palliative care. This scoping review demonstrates intersectionality can provide a way to illuminate rich understandings of inequity in palliative care. It is imperative that future palliative research incorporates an intersectionality focus to further clarify the needs and experiences of structurally marginalised groups. [ABSTRACT FROM AUTHOR]

Background: As palliative care research continues to expand across Europe, and the world, questions exist about the nature and type of research undertaken in addition to the research priorities for the future. This systematic review, which is the first stage of a larger scale study to identify the research priorities for palliative care on the island of Ireland, examined palliative care research conducted on the island over the last decade. Methods: A comprehensive search strategy was implemented and strict eligibility criteria were applied in order to identify relevant peer-reviewed journal articles. Inclusion criteria were all of the palliative care studies undertaken on the island of Ireland and published between January 2002 and May 2012. These were assessed in relation to year, setting, sample size, research methodology, and relevant findings. Results: 412 publications were identified for screening and their abstracts obtained. After eliminating articles that did not meet the inclusion criteria, 151 remained for further analysis. A thematic analysis of 128 studies published between 2006 and 2012 revealed eight core themes: (1) specific groups/populations; (2) services and settings; (3) management of symptoms (physical, psychological, social); (4) bereavement; (5) communication and education; (6) death and dying; (7) spirituality; and (8) complementary and alternative medicine/intervention (CAM). There was an upward trend in the number of publications in palliative care research over the last ten years with over 72% of studies being published within the previous four years. A slightly higher number of studies were quantitative in nature (surveys, questionnaires, standardised assessments) followed by qualitative (individual and focus group interviews, case studies, documentary analysis and retrospective case note reviews), mixed methods, and systematic reviews. Conclusions: Whilst there has been a welcome growth in palliative care research across Ireland, this has largely been needs-based and small scale studies. In contrast, international researchers and decision makers recommend the need for more outcomes focused multidisciplinary research. An examination of palliative care research is an essential first step in seeking to develop future priority areas for further research, highlighting opportunities for future collaboration both nationally and internationally. [ABSTRACT FROM AUTHOR]

Background: Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods: A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results: There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion: Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology. [ABSTRACT FROM AUTHOR]

Background: Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). Methods: Arksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. Results: Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. Conclusion: The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. Trial registration: Review registration: (https://osf.io/yfch2/) and published protocol (Holmen et al. Syst Rev. 10:237, 2021). [ABSTRACT FROM AUTHOR]

Background: Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates. Methods: A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi. Results: 114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified. Conclusions: Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions. [ABSTRACT FROM AUTHOR]

Background: Women with advanced uterine cervical cancer suffer from a combination of moderate to severe physical, psychological, social, and spiritual distress due to their disease and are in need of palliative care to improve their quality of life. Approximately 85% of the women live in the low- and middle-income countries. Whether these women and their families access palliative care is not known. Objectives: To understand the geographic accessibility, availability, financial accessibility, and acceptability of palliative care by patients with advanced cervical cancer and their families. Methods: We conducted a Systematic review following PRISMA guidelines in CINAHL, Cochrane Central Register of Controlled Trials, MEDLINE, PsychINFO, PubMed and Scopus for the core concepts: palliative care, access, advanced uterine cervical cancer. Eligible articles were published in English, contained original data on experiences of patients and/or caregivers including symptoms management, and discussed available resources, communication, satisfaction, and healthcare utilization. Results: Overall there was limited access to palliative care with the few available facilities located in cities, far from the rural areas where most women lived. Pervasive poverty was common with poor affordability of healthcare, travelling, accommodation, and subsistence expenses. Misconceptions and poor knowledge of the disease, cultural beliefs and attitudes, and other health system insufficiencies also presented challenges for access. Conclusion: Concerted effort should be made to improve availability of palliative care facilities. Health education to address misconceptions and other cognitive barriers that limit access among cervical cancer patients and their families should be urgently undertaken in the LMICs. [ABSTRACT FROM AUTHOR]

Background: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. Methods: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). Results: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. Conclusions: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness—including brief, self-administered interventions—merits further investigation, using adequately powered, high-quality studies. Systematic review registration: This systematic review is registered on PROSPERO, number CRD42022311729. [ABSTRACT FROM AUTHOR]

Background: Life-limited patients may lose decision-making abilities during disease progression. Advance care planning can be used as a discussion method for healthcare professionals to understand patients' future care preferences. However, due to many difficulties, the participation rate of healthcare professionals in advance care planning is not high. Aim: To explore the facilitators of and barriers to healthcare professionals' provision of advance care planning to life-limited patients to better implement it for this population. Methods: We followed ENTREQ and PRISMA to guide this study. We conducted a systematic search of PubMed, Web of Science, Embase, CINAHL, PsycINFO, CNKI, and SinoMed to include qualitative data on the experiences and perspectives of healthcare professionals in different professional fields in providing advance care planning for life-limited patients. The Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research was used to assess the quality of the included studies. Results: A total of 11 studies were included. Two themes were identified: unsupported conditions and facilitative actions. Healthcare professionals regarded cultural concepts, limited time, and fragmented record services as obstacles to implementation. They had low confidence and were overly concerned about negative effects. They needed to possess multiple abilities, learn to flexibly initiate topics, and facilitate effective communication based on multidisciplinary collaboration. Conclusion: Healthcare professionals need an accepting cultural environment to implement advance care planning, a sound legal system, financial support, and a coordinated and shared system to support them. Healthcare systems need to develop educational training programs to increase the knowledge and skills of healthcare professionals and to promote multidisciplinary collaboration to facilitate effective communication. Future research should compare the differences in the needs of healthcare professionals in different cultures when implementing advance care planning to develop systematic implementation guidelines in different cultures. [ABSTRACT FROM AUTHOR]

Background: Chronic heart failure is a common condition, and its prevalence is expected to rise significantly over the next two decades. Research demonstrates the increasing multidimensional needs of patients and caregivers. However, access to palliative care services for this population has remained poor. This systematic review was to provide an evidence synthesis of the effectiveness and cost-effectiveness of palliative care interventions for people with chronic heart failure and their caregivers. Methods: Relevant publications were identified via electronic searches of MEDLINE, Embase, PsychInfo, CINAHL, CENTRAL and HMIC from inception to June 2019. Grey literature databases, reference list, and citations of key review articles were also searched. Quality was assessed using the Revised Cochrane Risk of Bias Tool. Results: Of the 2083 records, 18 studies were identified including 17 having randomised controlled trial (RCT) designs and one mixed methods study with an RCT component. There was significant heterogeneity in study settings, control groups, interventions delivered, and outcome measures used. The most commonly assessed outcome measures were functional status (n = 9), psychological symptoms (n = 9), disease-specific quality of life (n = 9), and physical symptom control (n = 8). The outcome measures with the greatest evidence for benefit included general and disease-specific quality of life, psychological symptom control, satisfaction with care, physical symptom control, medical utilisation, and caregiver burden. Moreover, the methodological quality of these studies was mixed, with only four having an overall low risk of bias and the remaining studies either demonstrating high risk of bias (n = 10) or showing some concerns (n = 4) due to small sample sizes and poor retention. Only two studies reported on economic costs. Both found statistically significant results showing the intervention group to be more cost effective than the control group, but the quality of both studies was at high risk of bias. Conclusions: This review supports the role of palliative care interventions in patients with chronic heart failure and their caregivers across various outcomes, particularly quality of life and psychological wellbeing. Due to the highly heterogeneous nature of palliative care interventions, it is not possible to provide definitive recommendations as to what guise palliative care interventions should take to best support the complex care of this population. Considerable future research, particularly focusing on quality of care after death and the caregiver population, is warranted. [ABSTRACT FROM AUTHOR]

Background: Those experiencing socioeconomic deprivation have poorer quality of health throughout their life course which can result in poorer quality of death – with decreased access to palliative care services, greater use of acute care, and reduced access to preferred place of care compared with patients from less deprived populations. Aim: To summarise the current global evidence from developed countries on end-of-life experience for those living with socio-economic deprivation. Design: Integrative review in accordance with PRISMA. A thorough search of major databases from 2010–2020, using clear definitions of end-of-life care and well-established proxy indicators of socio-economic deprivation. Empirical research describing experience of adult patients in the last year of life care were included. Results: Forty studies were included from a total of 3508 after screening and selection. These were deemed to be of high quality; from a wide range of countries with varying healthcare systems; and encompassed all palliative care settings for patients with malignant and non-malignant diagnoses. Three global themes were identified: 1) multi-dimensional symptom burden, 2) preferences and planning and 3) health and social care interactions at the end of life. Conclusions: Current models of healthcare services are not meeting the needs of those experiencing socioeconomic deprivation at the end-of-life. Further work is needed to understand the disparity in care, particularly around ensuring patients voices are heard and can influence service development and delivery. [ABSTRACT FROM AUTHOR]

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas. [ABSTRACT FROM AUTHOR]

Background: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. Methods: A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the “home of the patient” as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Results: Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. Conclusions: There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions. [ABSTRACT FROM AUTHOR]

Objectives: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area. Methods: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles). Results: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs. Conclusion: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited. [ABSTRACT FROM AUTHOR]

Background: Pain is an important issue in end of life care. Although musculoskeletal pain is common in older adults, it is rarely associated with the cause of death and may be overlooked as death approaches. Hence a major target for improving quality of life may be being missed. Methods: The aim of this study was to systematically search and critically review the literature on musculoskeletal pain at the end of life. Amed, Cinahl, Internurse, Medline, Psych Info, Web of Knowledge and Cochrane review databases were searched for relevant research up to September 2012. The search strategy combined key words expanding the terms 'palliative' for population, 'musculoskeletal' for exposure, and 'pain' for outcome. Predefined inclusion and exclusion criteria were applied. Results: Five relevant papers and one letter to the editor were found, including case studies and epidemiological research. Current evidence suggests musculoskeletal pain is common in older adults at the end of life and that it can have a substantial impact on individual experience. No information about community based treatment of musculoskeletal pain at the end of life was found. Conclusion: Priorities for future research include high quality epidemiological studies to establish the prevalence, natural history, impact, assessment, patient priorities and outcomes associated with musculoskeletal pain in the end of life period, and intervention research that provides an evidence base for treatment. [ABSTRACT FROM AUTHOR]

Background: Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical uncertainty. We aimed to develop a logic model of person-centred evidence-based tools to manage clinical uncertainty in older people. Methods: A systematic mixed-methods review with a results-based convergent synthesis design: a process-based iterative logic model was used, starting with a conceptual framework of clinical uncertainty in older people towards the end of life. This underpinned the methods. Medline, PsycINFO, CINAHL and ASSIA were searched from 2000 to December 2019, using a combination of terms: "uncertainty" AND "palliative care" AND "assessment" OR "care planning". Studies were included if they developed or evaluated a person-centred tool to manage clinical uncertainty in people aged ≥65 years approaching the end of life and quality appraised using QualSyst. Quantitative and qualitative data were narratively synthesised and thematically analysed respectively and integrated into the logic model. Results: Of the 17,095 articles identified, 44 were included, involving 63 tools. There was strong evidence that tools used in clinical care could improve identification of patient priorities and needs (n = 14 studies); that tools support partnership working between patients and practitioners (n = 8) and that tools support integrated care within and across teams and with patients and families (n = 14), improving patient outcomes such as quality of death and dying and satisfaction with care. Communication of clinical uncertainty to patients and families had the least evidence and is challenging to do well. Conclusion: The identified logic model moves current knowledge from conceptualising clinical uncertainty to applying evidence-based tools to optimise person-centred management and improve patient outcomes. Key causal pathways are identification of individual priorities and needs, individual care and treatment and integrated care. Communication of clinical uncertainty to patients is challenging and requires training and skill and the use of tools to support practice. [ABSTRACT FROM AUTHOR]

Background: Provision of palliative care to individuals with late-stage serious illnesses is critical to reduce suffering. Palliative care is slowly gaining momentum in Jamaica but requires a highly skilled workforce, including nurses. Out-migration of nurses to wealthier countries negatively impacts the delivery of health care services and may impede palliative care capacity-building. This critical review aimed to explore the evidence pertaining to the nurse migration effect on the integration of palliative care services in Jamaica and to formulate hypotheses about potential mitigating strategies. Methods: A comprehensive search in the PubMed, CINAHL, and ProQuest PAIS databases aimed to identify articles pertinent to nurse migration in the Caribbean context. Grant and Booth's methodologic framework for critical reviews was used to evaluate the literature. This methodology uses a narrative, chronologic synthesis and was guided by the World Health Organization (WHO) Public Health Model and the Model of Sustainability in Global Nursing. Results: Data from 14 articles were extracted and mapped. Poorer patient outcomes were in part attributed to the out-migration of the most skilled nurses. 'Push-factors' such as aggressive recruitment by wealthier countries, lack of continuing educational opportunities, disparate wages, and a lack of professional autonomy and respect were clear contributors. Gender inequalities negatively impacted females and children left behind. Poor working conditions were not necessarily a primary reason for nurse migration. Four main themes were identified across articles: (a) globalization creating opportunities for migration, (b) recruitment of skilled professionals from CARICOM by high income countries, (c) imbalance and inequities resulting from migration, and (d) mitigation strategies. Thirteen articles suggested education, partnerships, policy, and incentives as mitigation strategies. Those strategies directly align with the WHO Public Health Model drivers to palliative care integration. Conclusion: Emerged evidence supports that nurse migration is an ongoing phenomenon that strains health systems in Caribbean Community and Common Market (CARICOM) countries, with Jamaica being deeply impacted. This critical review demonstrates the importance of strategically addressing nurse migration as part of palliative care integration efforts in Jamaica. Future studies should include targeted migration mitigation interventions and should be guided by the three working hypotheses derived from this review. [ABSTRACT FROM AUTHOR]

Background: Palliative care can be demanding and stressful for providers. There is increasing recognition in the literature of the impact of caregiving in palliative care settings, including compassion fatigue and compassion satisfaction. However, to date this literature has not been systematically reviewed. The purpose of this scoping review was to map the literature on compassion fatigue and compassion satisfaction among palliative care health providers caring for adult patients. Methods: Scoping review method guided by Joanna Briggs Institute guidelines was conducted using four electronic databases to identify the relevant studies published with no time limit. Following the title and abstract review, two reviewers independently screened full-text articles, and extracted study data. A narrative approach to synthesizing the literature was used. Results: Twenty studies were included in the review. Five themes emerged from synthesis: conceptualisation of compassion fatigue and compassion satisfaction; measurement of compassion fatigue and compassion satisfaction; consequences of compassion fatigue or compassion satisfaction and providing care for patients with life-threatening conditions; predictors or associated factors of compassion fatigue and compassion satisfaction among palliative care health providers; and strategies or interventions to support palliative care health providers and reduce compassion fatigue. Conclusions: Limited studies examined the effectiveness of specific interventions to improve compassion satisfaction and reduce compassion fatigue among palliative care health providers. Further investigation of the impacts of compassion fatigue and compassion satisfaction on palliative care health providers and their work is also needed. [ABSTRACT FROM AUTHOR]

Background: As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. Methods: Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. Results: A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers' outcomes. The evidence of interventions delivered across other settings was generally inconsistent. Conclusions: Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice. [ABSTRACT FROM AUTHOR]

Background: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care. Methods: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014–2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies. Results: The findings are synthesized in the main theme: E-health applications – promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology. Conclusions: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources. [ABSTRACT FROM AUTHOR]

Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged. [ABSTRACT FROM AUTHOR]

Background: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. Method: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. Results: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. Conclusions: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. Trial registration: This systematic review was registered in Prospero (registration number: CRD42019119241). [ABSTRACT FROM AUTHOR]

Background: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. Methods: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. Results: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. Conclusions: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002. [ABSTRACT FROM AUTHOR]

Background: Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. Methods: PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. Results: Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. Conclusions: A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this. [ABSTRACT FROM AUTHOR]

Background: People who are homeless or vulnerably housed are a marginalized group who often experience high rates of morbidity and die young as a result of complex problems. Access to health care and support can be challenging, with access to palliative care even more so. This review presents a synthesis of published qualitative research exploring from the perspective of homeless people and those working to support them, current challenges to palliative care access and provision, in addition to suggestions for what may improve palliative care for this population. Methods: Systematic review of qualitative research analysed using thematic synthesis. PsycINFO, Medline, Sociological Abstracts, Social Services Abstracts, Science citations index and CINAHL were searched up to September 2016. Thematic synthesis involved a three-step inductive process to develop a deeper understanding of the challenges to and suggestions for the access and provision of palliative care for homeless people. Results: Thirteen qualitative articles, reporting nine studies were identified. The challenges to access and provision to palliative care were drawn from the data covering three broad areas, namely "the chaotic lifestyles sometimes associated with being homeless", "the delivery of palliative care within a hostel for homeless people" and provision within "mainstream health care systems". Obstacles were related to homeless persons competing day-to-day priorities, their experience of stigma in mainstream settings, the high burden on hostel staff in supporting residents at the end of life and inflexibility in mainstream health care systems. Suggestions for improving access to palliative care include building trust between homeless persons and health professionals, increasing collaboration between and flexibility within services, and providing more training and support for all professionals. Conclusions: The provision of palliative care can be complicated for all populations, however delivering palliative care for people who are homeless is influenced by a potentially greater and more varied range of factors, on both individual and systemic levels, than providing palliative care for the housed population. Careful consideration and potentially great changes will be needed within health care systems to ensure homeless populations have equitable access to palliative care. [ABSTRACT FROM AUTHOR]

Background: Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training. [ABSTRACT FROM AUTHOR]

Background: Recent concerns about suboptimal patient care and a lack of compassion have prompted policymakers to question the preparedness of clinicians for the challenging environment in which they practice. Compassionate care is expected by patients and is a professional obligation of clinicians; however, little is known about the state of research on clinical compassion. The purpose of this scoping review was to map the literature on compassion in clinical healthcare. Methods: Searches of eight electronic databases and the grey literature were conducted to identify empirical studies published over the last 25 years. Eligible studies explored perceptions or interventions of compassionate care in clinical populations, healthcare professionals, and healthcare students. Following the title and abstract review, two reviewers independently screened full-texts articles, and extracted study data. A narrative approach to synthesizing and mapping the literature was used. Results and discussion: Of 36,637 records, 648 studies were retrieved and 44 studies were included in the review. Less than one third of studies included patients. Six themes emerged from studies that explored perceptions of compassionate care: nature of compassion, development of compassion, interpersonal factors related to compassion, action and practical compassion, barriers and enablers of compassion, and outcomes of compassion. Intervention studies included two compassionate care trials with patients and eight educational programs that aimed to improve compassionate care in clinicians and students. Conclusions: This review identifies the limited empirical understanding of compassion in healthcare, highlighting the lack of patient and family voices in compassion research. A deeper understanding of the key behaviors and attitudes that lead to improved patient-reported outcomes through compassionate care is necessary. [ABSTRACT FROM AUTHOR]