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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]

Introduction: Dysphagia and communication changes are common in life-limiting conditions and Speech-Language Pathology (SLP) involvement to facilitate effective communication, eating and drinking contributes to the goals of comprehensive palliative care. Aim: To examine the existing literature around the role of SLPs in palliative care to define the best practice role for SLPs in this area, identify current services and interventions provided by SLPs to patients with life-limiting conditions, assess for potential gaps between best practice in the literature and everyday SLP practice and opportunities for improvement. Methods: The methods used were electronic literature searches within MEDLINE, EMBASE and CINAHL, and manual searching. Papers were classified according to type. Meta-analysis was not appropriate due to the nature of the papers, and so a narrative exploration of themes was conducted. Results: Thirty-two papers were included (eight research, twenty-four non-research). Discussion: Specific roles for SLPs in dysphagia, communication, and holistic professional practice were identified. There is insufficient research to determine whether this is reflected in everyday SLP practice. Potential challenges to providing services include the impact of working with people who are dying, limited professional preparation, ongoing education constraints, and legal and ethical considerations. Further research into SLP activities with patients with life-limiting conditions is required to explore the valuable contributions already being made by SLPs to the care of patients with life-limiting illnesses and to identify opportunities to develop and improve evidence-based services in this area. [ABSTRACT FROM PUBLISHER]

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

Over the last thirty years, the management of Malignant Ureteric Obstruction (MUO) has evolved from a single disciplinary decision to a multi-disciplinary approach. Careful consideration must be given to the risks and benefits of decompression of hydronephrosis for an individual patient. There is a lack of consensus of opinion as well as strong evidence to support the decision process. Outcomes that were identified amongst patients undergoing treatment for MUO included prognosis, quality of life (QOL), complications, morbidity and prognostication tools. A total of 63 papers were included. Median survival was 6.4 months in the 53 papers that stated this outcome. Significant predictors to poor outcomes included low serum albumin, hyponatremia, the number of malignancy related events, and performance status of 2 or worse on the European cooperative cancer group. We propose a multi-centre review of outcomes to enable evidence-based consultations for patients and their families. [ABSTRACT FROM AUTHOR]

Introduction The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. Aims To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. Methods Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. Results 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Conclusions The process and outcomes of decision-making for older people are affected by many factors—all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients. [ABSTRACT FROM AUTHOR]

Background Palliative care and rehabilitation both aim to support patients to live as actively as possible. Goal setting has been identified in health policy and clinical guidelines as a mechanism to achieve this. While goal setting is well established in traditional rehabilitation, it is unclear how it should be implemented within palliative care where people are faced with diminishing abilities. Aim To identify and synthesize published literature regarding goal setting in palliative care. Method Electronic searches were carried out on MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA, and Google Scholar databases between November 2010 and January 2011. Papers were included if they focused on patient-centred goal setting in palliative care. No restrictions were placed on study design or type of paper. Papers were classified according to the type and design and research papers were quality appraised. Papers were read and analysed using framework analysis. Findings Sixteen papers met the inclusion criteria. Three themes were identified: 1. Definitions, process, and functions of goal setting; 2. The challenges of delivering goal setting; 3. Theories underpinning goal setting. Conclusions Goal setting is recognized as an important component of patient-centred palliative care, but there is no agreement regarding 'best practice' and clinicians face particular challenges when trying to set goals with patients in this context. Little attention has been paid to developing a robust, theory-based approach to goal setting in this setting. Hope theory and theories of how people adapt to life-threatening illness could inform the process of goal setting in palliative care. [ABSTRACT FROM AUTHOR]

Severe pain is frequent in patients with locally advanced pancreatic ductal adenocarcinoma (PDCA). Stereotactic body radiotherapy (SBRT) provides high local control rates in these patients. The aim of this review was to systematically analyze the available evidence on pain relief in patients with PDCA. We updated our previous systematic review through a search on PubMed of papers published from 1 January 2018 to 30 June 2021. Studies with full available text, published in English, and reporting pain relief after SBRT on PDCA were included in this analysis. Statistical analysis was carried out using the MEDCALC statistical software. All tests were two-sided. The I2 statistic was used to quantify statistical heterogeneity (high heterogeneity level: >50%). Nineteen papers were included in this updated literature review. None of them specifically aimed at assessing pain and/or quality of life. The rate of analgesics reduction or suspension ranged between 40.0 and 100.0% (median: 60.3%) in six studies. The pooled rate was 71.5% (95% CI, 61.6–80.0%), with high heterogeneity between studies (Q2 test: p < 0.0001; I2 = 83.8%). The rate of complete response of pain after SBRT ranged between 30.0 and 81.3% (median: 48.4%) in three studies. The pooled rate was 51.9% (95% CI, 39.3–64.3%), with high heterogeneity (Q2 test: p < 0.008; I2 = 79.1%). The rate of partial plus complete pain response ranged between 44.4 and 100% (median: 78.6%) in nine studies. The pooled rate was 78.3% (95% CI, 71.0–84.5%), with high heterogeneity (Q2 test: p < 0.0001; I2 = 79.4%). A linear regression with sensitivity analysis showed significantly improved overall pain response as the EQD2α/β:10 increases (p: 0.005). Eight papers did not report any side effect during and after SBRT. In three studies only transient acute effects were recorded. The results of the included studies showed high heterogeneity. However, SBRT of PDCA resulted reasonably effective in producing pain relief in these patients. Further studies are needed to assess the impact of SBRT in this setting based on Patient-Reported Outcomes. [ABSTRACT FROM AUTHOR]

Background: The impact of living with palliative care needs arising from COPD disrupts an individual's existential situation. However, no comprehensive synthesis of existing research has been published to determine the presentation and impact of existential suffering. Aim: To provide a synthesis of existing evidence on existential suffering for those living with palliative care needs arising from COPD. Design: This is an integrative review paper, undertaken using the methodological approach developed by Soares and reported in accordance with PRISMA guidelines. Data analysis was undertaking using an integrated convergent synthesis approach. Data sources: Nine electronic databases were searched from April 2019 to December 2019. A second search was undertaken in January 2021 to identify recently published papers meeting the inclusion and exclusion criteria. No date restrictions were imposed. Only papers published in the English Language were considered for inclusion. Empirical research papers employing qualitative and/or quantitative methodologies and systematic literature reviews were included. Articles were accepted for inclusion if they discussed any component of existential suffering when living with COPD and palliative care needs. Results: Thirty-five papers were included within this review comprising of seven systematic reviews, 10 quantitative studies and 18 qualitative studies. The following themes relating to existential suffering were found: Liminality, Lamented Life, Loss of Personal Liberty, Life meaning and Existential isolation. The absence of life meaning, and purpose was of most importance to participants. Conclusions: This review suggests existential suffering is present and of significant impact within the daily lives of those living with palliative care needs arising from COPD. The absence of life meaning has the most significant impact. Further research is required to understand the essential components of an intervention to address existential suffering for this patient group, to ensure holistic palliative care delivery. [ABSTRACT FROM AUTHOR]

Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting. Objectives: This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium. Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program. Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records. Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university. Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment. [ABSTRACT FROM AUTHOR]

Research in palliative care is regarded as ethically challenging although there is increasing recognition that such research is important. Young adults with life-shortening conditions were not expected to reach adulthood but this population is growing and there is limited research that focuses on their lives or their experiences of engaging in research. The study explored the unintended consequences of pandemic control measures on the lives of young adults living with life-shortening conditions in the United Kingdom. This paper focuses on some of the methodological issues arising from this study, drawing on data that explores participants’ experiences of taking part. This is an interpretivist and inclusive qualitative study co-produced with three experts by experience using constructivist Grounded Theory method conducted during the first wave of the Coronavirus pandemic. In-depth interviews using a topic guide were transcribed verbatim and analysed iteratively until the point of data saturation. Twenty-six young adults aged 22–40 (17 female; 9 male), reporting a wide range of life-limiting and/or life-threatening conditions including rare and undiagnosed conditions and co-morbidities. Through analysis we identify four key themes focusing on participants’ experiences of taking part in the research: helping others and influencing change; reciprocity and support; therapeutic value; and (in)visibility and legacy. This paper offers methodological reflections on research in palliative care drawing on qualitative co-produced research involving young adults with life-shortening conditions. Our findings indicate that although participating in research can feel uncomfortable, this is outweighed by the perceived benefits of contributing to research. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is a process through which people communicate their goals and preferences for future medical care. Due to the complexity of the decision‐making process, decision aids can assist individuals in balancing potential benefits and risks of treatment options. Objective: While decision aids have the potential to better promote advance care planning, their characteristics, content and application effectiveness are unclear and lack systematic review. Therefore, we aimed to explore these three aspects and establish a foundation for future research. Design: Scoping review. Methods: This scoping review adheres to the framework proposed by Arksey and O'Malley and the PRISMA‐ScR list. Six English‐language databases were systematically searched from the time of construction until 1 December 2023. Two researchers conducted the article screening and data extraction, and the extracted data was presented in written tables and narrative summaries. Results: Of the 1479 titles and abstracts, 20 studies fulfilled the inclusion criteria. Types of decision aids were employed, mainly websites and videos. Decision aid's primary components center around 11 areas, such as furnishing information, exploring treatment and care preferences. The main manifestations were a significant increase in knowledge and improved recognition of patients' target value preferences. Among the aids, websites and videos for advance care planning have relatively high content acceptability and decision‐making process satisfaction, but their feasibility has yet to be tested. Conclusions: Decision aids were varied, with content focused on describing key information and exploring treatment and care preferences. Regarding application effects, the aids successfully facilitated the advance care planning process and improved the quality of participants' decisions. Overall, decision aids are efficient in improving the decision‐making process for implementing advance care planning in cancer and geriatric populations. In the future, personalised decision aids should be developed based on continuous optimization of tools' quality and promoted for clinical application. Reporting Method: The paper has adhered to the EQUATOR guidelines and referenced the PRISMAg‐ScR checklist. No Patient or Public Contribution: This is a review without patient and public contribution. Registration: https://doi.org/10.17605/OSF.IO/YPHKF, Open Science DOI: 10.17605/OSF.IO/YPHKF. [ABSTRACT FROM AUTHOR]

The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway is critical, but other criteria are relevant to positive results. This paper aims to contribute to the early/late referral dualism in pediatric palliative care (PPC) and highlight the importance of a collaborative approach between oncologists and palliative care teams. This study investigates the impact of early versus late referral to PPC, intersecting it with the synergy work between services and the related outcomes. The four pediatric cancer cases were selected based on clinical (e.g., disease duration, multiple treatments, and pain management), management (e.g., involvement of multiple services and multiple home-hospital transitions), and relevance of multidisciplinary team (e.g., difficult clinical decisions and ethical discussions) criteria. A mixed-methods approach was employed, combining qualitative case analysis using clinical diaries, literature review, and practice guidelines development. Critical clinical information, time course, clinician-family communication, and patient involvement were analyzed. The outcomes show how simultaneous care creates continuous discussion and dialogue between professionals. The results indicate the importance of better communication and care coordination to improve patient and family satisfaction, highlighting the uniqueness of the pediatric field and the relationship with children and families. Through the discussion of clinical cases and a literature review, we provide practical guidance for clinicians working in oncology and PPC. These findings underscore the crucial need for amultidisciplinary approach in pediatric oncology, advocating policy changes to support early PPC integration and translate it into complementarity best operating practices. In conclusion, besides assessing the timeliness of referral to the PPC service, the synergy, harmony, and choralwork of the professionals involved are equally valuable for a quality-of-life-oriented care plan. [ABSTRACT FROM AUTHOR]

The article includes a comprehensive bibliography focused on significant papers across various priority journals. Topics include public perception of palliative care in Germany, aspects of palliative care in multiple sclerosis, and the lack of a palliative approach in terminal hospital admissions for chronic disease in rural settings. Relevant research papers, reviews, and case reports are indexed, primarily in English, and include full source data and abstracts.

Objectives: The objectives of this study were to examine the roles and needs of allied health professionals (AHPs) working in public healthcare settings in rural and regional Victoria, Australia in providing components of palliative care in their routine practice. Methods: A cross-sectional study was conducted between March and May 2023. Surveys were collected from AHPs working in public healthcare settings in the Loddon Mallee region of Victoria, Australia. Clinicians reported on the frequency of provision of care to patients with terminal illness, and their self-reported skill and confidence in providing interventions to patients with palliative care needs. Results: In total, 121 clinicians completed the survey. Almost every respondent reported they had provided care to patients with a terminal illness, with 41% of clinicians providing this care daily or weekly. The respondents were confident carrying out generalist interventions such as maintaining physical function but reported lower confidence in managing common symptoms of terminal illness such as loss of appetite, swallowing difficulties and changing communication needs. Two-thirds of respondents had not undertaken any training specific to palliative care, with many unaware of how to access palliative care-specific training. Conclusion: AHPs in rural and remote areas regularly provide care to patients with terminal illness. As the number of patients seen in non-specialist palliative care settings is likely to increase in rural and regional areas, the low self-reported confidence in providing common components of care, and the low uptake of palliative care-specific training must be addressed to ensure AHPs can provide high-quality care to people with terminal illness. What is known about the topic? Due to the increasing demand for palliative care services, this care is increasingly delivered by general non-specialist clinicians such as allied health professionals. What does this paper add? This study provides evidence for how often a surveyed population of allied health professionals in rural and regional Australia are providing care to people with a terminal illness, as well as their confidence, competence and learning needs. What are the implications for practitioners? High-quality care is needed at end-of-life, therefore rural and regional health services need to support allied health professionals to increase confidence and competence in providing palliative care. [ABSTRACT FROM AUTHOR]

WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work. When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions. Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care. [ABSTRACT FROM AUTHOR]

Many people are experiencing serious health-related suffering that would benefit from palliative care. However, this service is inaccessible or underdeveloped in many parts of the world. One of the main starting points for introducing or developing palliative care services is improving awareness and participation in palliative care in the community. A group of clinicians from diverse backgrounds discussed how to implement this and this paper is a culmination of ideas arising from these conversations. For awareness building, social media campaigns, awareness at food festivals, national palliative care day programs, sharing stories and testimonials to stimulate conversations regarding palliative care and a "human library" project were described. For improving community participation, community volunteer development programs, the "adopt a grandma" initiative, medical student palliative care project, workshops and training for non-communicable diseases and community nursing cross-specialty collaborations are suggested. It is hoped that these proposals will stimulate further ideas and support the implementation of palliative care in different settings. [ABSTRACT FROM AUTHOR]

Copyright of Paliatia: Journal of Palliative Care is the property of HOSPICE Casa Sperantei Foundation and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Palliative care is expanding in Africa as the continent faces a rising disease burden. As the specialty takes form, it is important to acknowledge the cultural mores regarding health and disease. Many Africans perceive health as more than the individual's physical body, instead include the spirituality and well-being of family, community and ancestors. Much of living is done with the goal of becoming an ancestor, which is tied to the individual's burial and ceremonies. Despite their importance, conversations about death are often thought to be culturally taboo. This poses a challenge to palliative care which is based on the individual preferences and priorities, usually identified through shared decision-making. Little is known about the end-of-life priorities and preferences in Africa, leading to the research question: What are the end-of-life preferences and priorities for community dwelling adults in Mozambique? This paper examines instruments that can be used to measure end-of-life preferences. [ABSTRACT FROM AUTHOR]

Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. Design: A co-designed evaluation approach utilizing mixed-method design is used. Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept. Plain language summary: 'Citizen organization': an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells. [ABSTRACT FROM AUTHOR]

Aim: To offer an overall picture of the research published regarding the different aspects of death and dying during the COVID-19 pandemic in journals covering the field of nursing in the Scopus database. Design: bibliometric analysis. Methods: The metadata obtained were exported from Scopus for subsequent analysis through Bibliometrix. Using the VOSviewer co-word analysis function, the conceptual and thematic structure of the publications was identified. Results: A total of 119 papers were retrieved, with the participation of 527 authors. The publications were found in 71 journals covering the nursing area. The main lines of research revolved around the keywords "palliative care" and "end-of-life care" in regard to the ethical, psychological, and organizational challenges faced by the health professionals who cared for these patients. Conclusion: The results obtained offer a range of data and images that characterize the scientific production published on this topic, coming to the conclusion that, due to the multifaceted and multidisciplinary approach to the experience of death, care, and accompaniment in the dying process, bibliometric maps improve the comprehensive understanding of the semantic and conceptual structure of this field of research. This study was retrospectively registered with the OSF Registries on the 14 March 2024. [ABSTRACT FROM AUTHOR]

Copyright of Psycho-Oncologie is the property of Tech Science Press and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers. [ABSTRACT FROM AUTHOR]

Objectives: Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating in many settings worldwide for a considerable time, the specific costs associated with VAD seem unclear. The aim of this study was therefore to outline the common resource implications associated with VAD. Methods: A rapid literature review and grey literature search were undertaken. Results: We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and a future research agenda. Conclusions: There is a lack of publicly available information related to the costs associated with implementing VAD. Given that this is a significant change in policy and many multidisciplinary practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resources can be allocated. What is known about the topic? Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating internationally for a considerable time, there have been calls for more data to understand the resources required to implement VAD. What does this paper add? We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and outline a research agenda. What are the implications for practitioners? Given that a significant number of practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resource allocation can be considered. [ABSTRACT FROM AUTHOR]

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease. [ABSTRACT FROM AUTHOR]

Pain continues to be a significant problem for cancer patients, and the impact of a population-based strategy on their experiences is not completely understood. Our study aimed to determine the impact of palliative care on mitigating pain and its associated effects in determining the quality of life (QoL) among colon cancer outpatients. Six collection databases were used to perform a structured systematic review of the available literature, considering all papers published between the year 2000 and February 2023. PRISMA guidelines were adopted in our study, and a total of 9792 papers were evaluated. However, only 126 articles met the inclusion criteria. A precise diagnosis of disruptive colorectal cancer (CRC) pain disorders among patients under palliative care is necessary to mitigate it and its associated effects, enhance health, promote life expectancy, increase therapeutic responsiveness, and decrease comorbidity complications. Physical activities, the use of validated pain assessment tools, remote outpatient education and monitoring, chemotherapeutic pain reduction strategies, music and massage therapies, and bridging social isolation gaps are essential in enhancing QoL. We recommend and place a strong emphasis on the adoption of online training/or coaching programs and the integration of formal and informal palliative care systems for maximum QoL benefits among CRC outpatients. [ABSTRACT FROM AUTHOR]

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

Spiritual care specialists on the palliative care team are uniquely trained in performing spiritual assessments, a skillset necessary for identifying and treating spiritual distress (SD). While the importance of addressing SD as part of whole-person care has been explored in patients with diagnoses such as cancer and heart failure, the prevalence and treatment of SD in patients with dyspnea are not present in the literature. Using valid and reliable measurement tools to assess SD in severe dyspnea could improve patient-centered care at end-of-life, referring patients to spiritual care specialists and incorporating identified needs into the overall care plan. This paper reviews three tools designed to measure SD in patients with dyspnea. One tool, the Spiritual Distress Scale, has the greatest specificity and lowest patient burden. Recommendations for future research include creating and validating a shorter version of the tool to further reduce the burden on dyspneic patients. [ABSTRACT FROM AUTHOR]

Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Background: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. Aims: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. Design: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. Results: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. Conclusion: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff. [ABSTRACT FROM AUTHOR]

Background: People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations. Aims: To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care. Design: A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616). Data sources: MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal. Results: Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care. Conclusions: Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder. [ABSTRACT FROM AUTHOR]

Providing and maintaining hospice and palliative care during disasters poses significant challenges. To understand the impact of disasters on the provision of hospice and palliative care and the disaster preparedness initiatives in the field, a systematic review was undertaken. Eligibility criteria for the selection of studies were: peer-reviewed original research papers addressing HPC during disasters published between January 2001 and February 2023 in English. The databases CINAHL, MEDLINE, APA PsycInfo, APA PsycArticles, and SocINDEX were searched with textword and MeSh-terms between October 2022 and February 2023. The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of the studies. Content analysis was performed. The results are presented in the form of a narrative synthesis. Of 2581 studies identified, 57 met the inclusion criteria. Most studies were published recently on the impact of the COVID-19 pandemic. Four main themes were identified in the literature: disruption of the system, setting-specific differences, emotional challenges, and system adaptation. Overall, strategies to tackle hospice and palliative care needs have been poorly integrated in disaster preparedness planning. Our findings highlight the need to strengthen the resilience of hospice and palliative care providers to all types of disasters to maintain care standards. [ABSTRACT FROM AUTHOR]

In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as 'dignity work'. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under‐utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying. [ABSTRACT FROM AUTHOR]

Globally, 40 million people need palliative care; about 69% are people over 60 years of age. The highest proportion (78%) of adults are from low- and middle-income countries (LMICs), where palliative care still developing and is primarily limited to urban areas. This integrative review describes strategies used by LMICs to establish palliative care in rural areas. A rigorous integrative review methodology was utilized using four electronic databases (Ovid MEDLINE, Ovid Emcare, Embase classic+Embase and CINAHL). The search terms were: 'palliative care', 'hospice care', 'end of life care', 'home-based care', 'volunteer', 'rural', 'regional', 'remote' and 'developing countries' identified by the United Nations (UN) as 'Africa', 'Sub-Saharan Africa', 'low-income' and 'middle- income countries'. Thirty papers published in English from 1990 to 2019 were included. Papers were appraised for quality and extracted data subjected to analysis using a public health model (policy, drug availability, education and implementation) as a framework to describe strategies for establishing palliative care in rural areas. The methodological quality of the reviewed papers was low, with 7 of the 30 being simple programme descriptions. Despite the inclusion of palliative care in national health policy in some countries, implementation in the community was often reliant on advocacy and financial support from non-government organizations. Networking to coordinate care and medication availability near-patient homes were essential features of implementation. Training, role play, education and mentorship were strategies used to support health providers and volunteers. Home- and community-based palliative care services for rural LMICs communities may best be delivered using a networked service among health professionals, community volunteers, religious leaders and technology. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review.Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Background: Metastatic epidural spinal cord compression (MESCC) is a debilitating sequela of cancer that results in pain, disability, and neurologic deficits. Surgical techniques have included open surgical (OS) techniques with anterior and/or posterior decompression and fusion procedures. Further technical evolution has led to minimally invasive spinal (MIS) decompression and fusion. The objective of this study is to compare MIS to OS techniques in the treatment of thoracolumbar MESCC. Methods: A review of the literature was performed using PubMed database. Inclusion criteria included patients 18 years or older, thoracolumbar MESCC, and surgeries with instrumented fusion. A total of 451 articles met the inclusion criteria and further analysis narrowed them down to 81 articles. Variables collected included blood loss, length of stay, operative time, pre- and postoperative Frankel grade, and complications. Results: A total of 5726 papers were collected, with a total of 81 papers meeting final inclusion criteria: 26 papers with MIS technique and 55 with OS. A total of 2267 patients were evaluated. They were split into three surgical subtypes of MIS and OS: posterior decompression and fusion, partial corpectomy, and complete corpectomy. Overall, MIS had lower operative time, blood loss, and complications compared to OS. A timeline analysis showed reduction of complication rates in MIS surgery between papers published over a 28-year period. Conclusion: MESCC carries significant morbidity and mortality. Surgical approaches for palliative treatment should account for this fact. We conclude that MIS techniques offer a viable alternative to traditional OS approaches with lower overall morbidity and complications. [ABSTRACT FROM AUTHOR]

Advance care planning is considered an important issue in end‐of‐life care for older adults. The ongoing COVID‐19 pandemic has interrupted the healthcare system and end‐of‐life care tremendously. This review aimed to explore available articles on advance care planning amid the pandemic and analyze qualitatively. PubMed and Google Scholar were searched on February 2021 using the relevant keywords. Retrieved articles were screened applying inclusion criteria. Any article describing advance care planning during the COVID‐19 era was included. A qualitative content analysis was conducted. In total, 20 articles incorporating 5542 participants from five countries were included. Among the articles, eight were primary studies and the rest were perspective papers or secondary analysis. From the qualitative content analysis six major themes emerged namely palliative care, lack of coordination among acute care, hospital palliative care, and long‐term care, community‐based advance care planning, real‐time dissemination of scientific information on the regional pandemic situation, online system and legislation. The COVID‐19 pandemic had decreased the uptake of advance care planning. Findings of the review suggested simplification of the procedure regarding advance care planning, implementation of community‐based advance care planning and utilization of online resources to enhance the process. Geriatr Gerontol Int 2021; 21: 779–787. [ABSTRACT FROM AUTHOR]

Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications. [ABSTRACT FROM AUTHOR]

The registered nurse has crucial preventative, therapeutic, sociocultural, and advocacy roles in promoting quality holistic patient-centred palliative care. This paper examines, describes, and analyses this multifaceted role from an antipodean perspective. We conducted systematic searches using PubMed, Google Scholar, government guidelines, authoritative body regulations, quality control guidelines, and government portals pertaining to palliative care nursing in Australia. This paper relies upon the information garnered from publications, reports, and guidelines resulting from these searches and analyses. The fundamental principles and guiding values of palliative care (and nursing) and the raison d'etre for palliative care as a discipline are underscored and expanded on. Australian Clinical Practice Guidelines (CPGs) pertaining to palliative end-of-life (EOL) nursing care and associated services are discussed. The relevant NMBA nursing standards that RNs need to have to administer opioids/narcotics in palliative care are summarised. The identification of patients who need EOL care, holistic person-centred care planning for them, and consultative multidisciplinary palliative clinical decision making are discussed in the palliative care context. Several components of advance care planning apropos health deterioration and conflicts are discussed. Several aspects of EOL care, especially palliative nursing care, are analysed using research evidence, established nursing and palliative care standards, and the Australian EOL CPGs. [ABSTRACT FROM AUTHOR]

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

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated their need for support from specialized PPC (SPPC) teams. Objectives: This study had two objectives: (1) to evaluate whether the availability of a SPPC team impacted the work-related QoL of professionals not specialized in PPC; and (2) to explore the work-related QoL of professionals working in PPC without specialized training. Design: Repeated cross-sectional comparative effectiveness design. Methods: One hospital with an established SPPC program and affiliated institutions provided the intervention group (IG). Three hospitals and affiliated institutions where generalist PPC was offered provided the comparison group (CG). Data were collected by paper-pencil questionnaire in 2021 and 2022. The Professional Quality of Life (ProQOL 5) questionnaire was used to assess work-related QoL, yielding separate scores for burnout (BO), secondary traumatic stress (STS) and compassion satisfaction (CS). A descriptive statistical analysis was performed and general estimation equations were modelled. To increase the comparability of the IG and CG, participants were matched by propensity scores. Results: The 301 participating non-PPC-specialized professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. However, none of these scores (BO: p = 0.36; STS: p = 0.20; CS: p = 0.65) correlated significantly with support from an SPPC team. Compared to nurses, physicians showed higher levels of BO (1.70; p = 0.02) and STS (2.69; p ⩽ 0.001). Conclusion: Although the study sample's overall work-related QoL was satisfactory, it showed a considerable proportion of moderate BO and STS, as well as moderate CS. To provide tailored support to professionals working in PPC, evidence regarding key SPPC support elements and their effectiveness is needed. Trial registration: ClinicalTrials.gov ID, NCT04236180. Plain language summary: Work-related quality of life in professionals involved in pediatric palliative care - Why was this study done? Caring for children suffering from life-limiting conditions and their families impacts professionals' work-related Quality of Life (QoL). Professionals without specific training often provide pediatric palliative care (PPC) to children and their families. - What did the researchers do? We aimed to determine whether the work-related the QoL of professionals without specialised PPC training would be positively influenced when they were supported by PPC specialists. We also wanted to explore what person-specific factors might correspond with higher or lower work-related QoL. Work-related QoL was analysed in relation to burnout (BO), secondary traumatic stress (STS), and compassion satisfaction (CS). These variables' levels were assessed with a questionnaire survey in 2021 and 2022. - What did the researchers find? The 301 participating professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. There was no substantial difference in work-related QoL in the professionals supported by PPC specialists compared to those who did not receive specialist support. Physicians showed higher levels of BO and STS than nurses. - What do the findings mean? Although the studied professionals' overall work-related QoL was satisfactory, there is a considerable proportion of moderate BO and STS scores in professionals working with children suffering from life-limiting conditions. Further research should explore the specific needs of professionals not specialised in PPC. [ABSTRACT FROM AUTHOR]

Huntington's Disease (HD) is a complex neurodegenerative disorder, with a life expectancy 10-20 years after symptom onset which is usually in middle age. Symptoms of HD include physical deterioration, cognitive impairment and a high incidence of suicide and suicidal ideation, which may cause intolerable suffering. While the strong association between depression and other psychiatric manifestations with suicide is discussed, this paper explores whether suicide can ever be deemed rational. By the time a person with HD reaches an advanced and terminal stage, their decisionmaking capacity will be so impaired as to make them ineligible for Voluntary Assisted Dying (VAD) under all current and proposed legislation in Australia and New Zealand. Given that Advance Care Planning (ACP) can provide an opportunity to refuse all medical treatment, except palliative treatment, could this provide an acceptable alternative to suicide and VAD? Nurses need to consider these ethical dilemmas and remain informed on the debates. They may experience moral conflict when a person wishes to discuss their view on rational suicide or seek to implement refusal of treatment in an advanced care directive. They must be aware and consider how their professional obligations and personal opinions interact with this complex topic. [ABSTRACT FROM AUTHOR]

Background: Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide‐ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end‐of‐life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature. Methods: Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA‐ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home? Conclusions: Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning‐making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon. Patient or Public Contribution: N/A as this is a Scoping Review. What this paper contributes to the wider global community: An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end‐of‐life care in the home.While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role. [ABSTRACT FROM AUTHOR]

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

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

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

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. [ABSTRACT FROM AUTHOR]

Gut microbiota and intratumoural microbiota emerge as an important and, until now, completely ignored factor in treating cancer and cancer pain. Changes in gut microbiota can explain symptoms like the onset of cancer cachexia, inflammation, neuropathic pain and cancer pain. This knowledge offers perspectives of discovery of new therapeutic possibilities which may form a non-toxic complementary treatment of cancer with the potential of improving the quality of life of patients. This paper analyses current knowledge and future perspectives on this subject. [ABSTRACT FROM AUTHOR]

Literature suggests that palliative care professionals and informal caregivers could be at risk of side effects of active participation in care. Therefore, different methods of support that can be offered to carers should be sought. Coaching is an intervention that facilitates another person to learn, grow and take responsibility for the level to which results are achieved. There are arguments which indicate the possibility and need to use coaching interventions to support nurses in their development and daily practice. Moreover, coaching can be used to implement interventions to improve informal caregivers’ knowledge and skills, as well as to increase their sense of self-efficacy and psychological resilience. Consequently, this paper is aimed at introducing coaching as a method for enhancing work and well-being among formal and informal carers, especially in palliative care. Coaching might be an appropriate approach in the context of palliative care. Regarding end-of-life care and its complexity, it is worth considering implementing it as a part of an interdisciplinary program. Consequently, it would be tailored to caregivers’ needs. [ABSTRACT FROM AUTHOR]