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We conducted a literature search to identify and compare definitions of the experiential dimension of spiritual pain. Key databases were searched, up to the year 2021 inclusive, for papers with a definition of "spiritual" or "existential" pain/distress in a clinical setting. Of 144 hits, seven papers provided theoretical definitions/descriptions; none incorporated clinical observations or underlying pathophysiological constructs. Based on these findings, we propose a new definition for "spiritual pain" as a "self-identified experience of personal discomfort, or actual or potential harm, triggered by a threat to a person's relationship with God or a higher power." Our updated definition can inform future studies in pain assessment and management. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values. Plain language summary: Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care. [ABSTRACT FROM AUTHOR]

Background: Family caregivers have a vital role to play in palliative care for chronically ill patients. In Taiwan, caregiver demographics are evolving, with the number of male caregivers increasing. Gender differences influence psychosocial behaviours, thought processes and communication styles. In healthcare, acknowledgement of gender differences facilitates effective delivery of high‐quality care. Aim: The aim of this study is to explore male caregivers' decision‐making process for palliative care for chronically ill family members. Methods: This study employed grounded theory to generate a substantive theory of male caregivers' decision‐making process for palliative care for chronically ill family members. We recruited 22 male participants from three inner‐city teaching hospitals in Taiwan. Findings: Regarding the decision‐making process of palliative care of chronic ill family, where male caregivers do not want their loved ones suffering anymore, the male caregivers' decision‐making process was impacted, first, by caregivers' views on the last stage of life; second, by their wish for good care during the end of life; and third, by their conviction that the patients' wishes should be respected. Furthermore, caregivers' philosophy of life and death is also a supportive ground for decision‐making. This philosophy was influenced by their education in palliative care, financial status and religious beliefs and practices. The core category emerging from this study is encapsulated by a participant's assertion, 'How difficult is it? There are no male and female differences'. Conclusion: We found that palliative care experiences of male caregivers are important for the decision‐making process for palliative care for their chronically ill family members. Caregivers want their loved ones to receive good care as the last step in life, to respect their wishes and no more suffering for the patient. Therefore, health professionals should be familiar with the palliative care process that caregivers go through to offer updated information when needed. Summary statement: What is already known about this topic? Taiwanese philosophy of end‐of‐life care focuses on family values and shares the power of making critical decisions between patients and their relatives.Due to cultural preferences, the dedicated family caregiver often becomes the only channel for honouring the patient's wishes.Male and female caregivers can have different coping mechanisms; males are less likely to seek support and are more stressed by financial burdens. What this paper adds? The patient and the whole family should be considered in the discussion of end‐of‐life care.Male caregivers indicated palliative care should be linked to comfort care, avoidance of suffering and respecting patients' wishes. The implication of this paper: Male caregivers should be well supported, good care for their loved ones and fulfil the patient's wishes and no more suffering.Education in palliative care and religious and financial support should be provided along with palliative care services to both male caregivers. [ABSTRACT FROM AUTHOR]

Aim: To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Background: Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. Design: A systematic review and meta‐analysis. Data sources All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. Review methods: This review was performed by Stata 12.0 and Review Manager 5.3. Results: Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Conclusions: Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. Summary statement: What is already known about the topic? Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients.The overall effect of dyadic intervention for informal caregivers of palliative patients with lung cancer is unclear on account of different results reported in existing studies. What this paper adds? Dyadic intervention could improve family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer, even though it did not improve quality of life.Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. The implications of this paper: Medical personnel can provide personalized dyadic interventions based on the assessment of the palliative patient and their informal caregivers, such as providing illness understanding, symptom management and addressing psychosocial.Findings can be applied as a reference to help informal caregivers prevent potential emotional disturbance. [ABSTRACT FROM AUTHOR]

The article presents a call for papers for a special issue of Palliative Medicine on Paediatric Palliative Care.

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]

Purpose: This research paper aims to study the achievement of the objectives set by the Government of Kerala through the Arogyakeralam Pain and Palliative Care project. Design/methodology/approach: The research paper delves into diverse facets of an individual's well-being including medical, emotional, spiritual and social aspects, when confronted with an incurable and incapacitating disease through the intervention of the PPC project. This insightful study was conducted in the state of Kerala, India. Findings: The analysis reveals that quality of life (QoL) is most influenced by spiritual, social and psychological factors. This paper raises pertinent questions about the effectiveness of PPC initiatives within the realm of medical care. Social implications: The thought, conception and preparation of the subject is on improving social health care by assessing the existing practices followed by the local governance. This, by far, would benefit millions by formulating appropriate policies for improving the QoL. Originality/value: The Kerala model of health care has garnered global acclaim, standing shoulder to shoulder with the health systems of developed nations. Adopting "active total care" to address pain and allied indications, the Arogyakeralam palliative care program significantly enhances patients' QoL. The focus was to uplift the QoL of patients suffering from terminal illnesses post-pandemic. [ABSTRACT FROM AUTHOR]

This paper explores the critical role of prognostication tools in identifying high-risk hospitalized older adults who may benefit from palliative care. With an ageing population and increasing prevalence of chronic illnesses, the demand for patient-centered healthcare is paramount. The study evaluates three key tools—the Palliative Performance Scale, CARING criteria, and Palliative Care Rapid Emergency Screening tool. Each tool is analyzed for its psychometric properties, advantages, and limitations. Despite their strengths and limitations, these tools emerge as crucial screening tools for identifying older adults at heightened mortality risk within one year of hospital admission. Our paper calls for ongoing research to adapt and validate existing tools, ensuring their applicability across diverse clinical settings and patient populations. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in order to provide foundational data for the development of nursing theory and knowledge. Methods: A conceptual analysis of pediatric hospice and palliative care was conducted using Rodgers’ evolutionary method. Out of 5,013 papers identified, 28 were selected for detailed reading and analysis. Results: Pediatric hospice and palliative care encompasses physical, psychological, social, mental, spiritual, and family care for children with acute and chronic diseases with uncertain prognoses ahead of death, as well as their families. Effective pediatric hospice and palliative care will require multidisciplinary team nursing, effective communication, and supportive policies. Conclusion: The findings of this study suggest that providing pediatric hospice and palliative care will lead to improvements in pain relief for children and families, the efficiency of responses to death in children, and the quality of life for children and families. The significance of this study is that it clearly clarifies the concept by analyzing pediatric hospice and palliative care using an evolutionary method. [ABSTRACT FROM AUTHOR]

The article focuses on the White Paper of the European Association for Palliative Care (EAPC) on euthanasia and physician-assisted suicide. It mentions White Paper ignoring the extensive experience and substantial body of relevant empirical evidence in jurisdictions that have legalized euthanasia. It states the Canadian palliative care community reflecting on ways of reconciling traditional palliative care values.

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Worldwide, over 61 million people suffer from symptoms caused by conditions which could be helped by Palliative Care. Physiotherapy is increasingly utilised as part of the multi-disciplinary team in providing Palliative Care, but this is not widely accepted by physiotherapists whose attitudes and beliefs towards it may be framed by the absence of the topic in their undergraduate education. To evaluate the literature relating to the effect of Palliative Care education interventions on the attitudes and beliefs of Physiotherapy undergraduate students. A structured search on Academic Search Ultimate, MEDLINE Complete, CINAHL Complete, APA PsycInfo, Education Source, Communication Source, SPORTDiscus with Full Text, Business Source Ultimate, SocINDEX with Full Text, and Regional Business News was conducted in October 2020. Articles were limited to peer-reviewed journals published in English and involving an educational intervention delivered to pre-qualification Physiotherapy students. Four papers were included which all measured change in attitudes and beliefs. Three papers showed a significant positive change in students' attitudes and beliefs towards PC, and one showing a positive but non-significant change. There was no consensus on the ideal curriculum content, delivery method or time. PC content within the curriculum is still in its formative stages within Physiotherapy education. While there is currently no consensus on the ideal method and format of how it should be delivered, there is some evidence to suggest that it can have a positive impact on Physiotherapy students' attitudes and beliefs towards PC. [ABSTRACT FROM AUTHOR]

Background: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. Aim: To identify and synthesise the literature exploring the impact of all digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care. Design: Systematic review and narrative synthesis. Data sources: MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and the Midwives Information & Resource Service were searched on the 27th July 2020, in addition to the first five pages of Google Scholar. To be included in the review, papers must have contained: quantitative or qualitative data on psychosocial outcomes, data from patients aged 0–18 receiving palliative care or their families, a digital health intervention, and been written in English. Results: Three studies were included in the review. All looked at the psychological impact of telehealth interventions. Papers demonstrated fair or good quality reporting but had small sample sizes and varied designs. Conclusions: Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked. [ABSTRACT FROM AUTHOR]

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

Background: Older people living with multimorbidity are projected to become the main recipients of palliative care in the coming decades, yet there is limited evidence regarding their expressed palliative care needs to inform person-centred care. Aim: To understand the palliative care needs of community-dwelling people aged ⩾60 living with multimorbidity in the last 2 years of life. Design: A scoping review following Arksey and O'Malley. Data sources: Three international electronic databases (CINAHL, Ovid Medline, PsycINFO) were searched from March 2018 to December 2021. Reference lists were hand searched. Eligible papers were those reporting empirical data on older people's needs. Results: From 985 potential papers, 28 studies were included, published between 2002 and 2020; sixteen quantitative, nine qualitative and three mixed methods. Data were extracted and presented under the holistic palliative care domains of need: physical, psychological, social, spiritual, and additionally practical needs. Different measurement tools (n = 29) were used, of which 20 were multidimensional. Primacy in reporting was given to physical needs, most commonly pain and function. Social and practical needs were often prioritised by older people themselves, including maintaining social connections and accessing and receiving individualised care. Conclusion: Identifying the palliative care needs that matter most to older people with multimorbidity requires the recognition of their concerns, as well as their symptoms, across a continuum of living and dying. Available evidence is superficial. Supporting end of life provision for this growing and underserved population necessitates a shift to tailored multidimensional tools and community focussed integrated care services. [ABSTRACT FROM AUTHOR]

For people living with a life-limiting condition it is challenging to contribute to the design of future services due to limited research foregrounding meaningful engagement of 'vulnerable groups' in co-design. This paper shares findings and critical reflections on sensitively engaging people with lived experience of palliative care transitions, and making their lived experiences visible and legitimate in the co-design process. This paper presents an asset-based approach for reframing 'vulnerability', and visual and narrative tools to facilitate participation. Sharing critical reflections on the design tools and methods, the paper discusses future considerations for engaging 'invisible communities' in co-design of public services. [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]

This study explores how papers published in international journals in palliative and end‐of‐life care report ethical approval and informed consent. A literature search following PRISMA guidelines was conducted in PubMed, the Web of Science Core Collection, Scopus, the ProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of 169 empirical studies from 101 journals were deductively coded and analysed. The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56% reported rudimentary information, and 27% reported comprehensive details. We also found that 13% did not report any information on informed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details. The prevalence of missing and incomplete ethical statements and inadequate reporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journals advocate high reporting standards and potentially reject papers that do not meet ethical requirements, as this is the quickest path to improvement. [ABSTRACT FROM AUTHOR]

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

Simple Summary: Accurately predicting survival in patients with cancer receiving palliative radiotherapy is important for clinical decision making in cancer care management and delivery. This remains a challenge due to the heterogeneity of cancer diagnoses and a wide variety of prognostic factors. This study aims to review the literature to identify prognostic factors for clinical use as well as prognostic tools available to clinicians treating this population of patients. Based on the literature, we formulated evidence-based recommendations for clinicians to implement into practice with the intention of improving prognostic accuracy and overall patient care. (1) Background: Prognostication in patients with cancer receiving palliative radiotherapy remains a challenge. To improve the process, we aim to identify prognostic factors in this population from the literature and offer evidence-based recommendations on prognostication in patients undergoing palliative radiotherapy for non-curable or advanced cancers. (2) Methods: A systematic review was performed on the medical literature from 2005 to 2023 to extract papers on the prognosis of palliative radiotherapy patients with advanced cancer. The initial selection was performed by at least two authors to determine study relevance to the target area. Studies were then classified based on type and evidence quality to determine final recommendations. (3) Results: The literature search returned 57 papers to be evaluated. Clinical and biological prognostic factors were identified from these papers to improve clinical decision making or construct prognostic models. Twenty prognostic models were identified for clinical use. There is moderate evidence supporting (i) evidence-based factors (patient, clinical, disease, and lab) in guiding decision making around palliative radiation; (ii) that certain biological factors are of importance; (iii) prognostication models in patients with advanced cancer; and that (iv) SBRT or re-irradiation use can be guided by predictions of survival by prognostic scores or clinicians. Patients with more favorable prognoses are generally better suited to SBRT or re-irradiation, and the use of prognostic models can aid in this decision making. (4) Conclusions: This evaluation has identified several factors or tools to aid in prognosis and clinical decision making. Future studies should aim to further validate these tools and factors in a clinical setting, including the leveraging of electronic medical records for data availability. To increase our understanding of how causal factors interact with palliative radiotherapy, future studies should also examine and include prediction of response to radiation as an outcome. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

There is an urgent and unmet need for specialist palliative care services in residential aged care. The Specialist Palliative Care in Aged Care (SPACE) Project aimed to improve palliative and end-of-life care for older people living in residential aged care facilities in Queensland. A representative working group developed a series of service principles around palliative care practice in aged care (comprehensive resident-focused care, streamlined service, and capacity building). Funding was allocated by population to the health services in Queensland to adapt and implement models of care aligned with these principles. SPACE successfully implemented a variety of decentralised models of care across Queensland. The critical elements for the success of SPACE were the use of an expert working group to define the core innovation, networking and implementation support from the central project team and community of practice, and adaptable models of care led by local facilitators. Lessons learned from this real-world case study could be adopted to guide and ensure the successful implementation and sustainability of future complex interventions in healthcare settings, both nationally and internationally. What is known about the topic? There is limited palliative care support for the 36% of Australians who die in residential aged care. What does this paper add? This paper describes the development of the Specialist Palliative Care in Aged Care (SPACE) Project, using locally tailored models of care to improve palliative and end-of-life care in aged care facilities across Queensland. What are the implications for practitioners? Critical elements for improving residents' palliative and end-of-life care included creation of an expert working group to define the innovation state-wide, a central project team that supported implementation, a community of practice, and local facilitation. [ABSTRACT FROM AUTHOR]

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Only a few studies have assessed the economic outcomes of palliative care in India. The major areas of interest include hospice care, the process and structure of care, symptom management, and palliative chemotherapy compared to best supportive care. At present, there is no definite health-care system followed in India. Medical bankruptcy is common. In situations where patients bear most of the costs, medical decision-making might have significant implications on economics of health care. Game theory might help in deciphering the underlying complexities of decision-making when considered as a two person nonzero sum game. Overall, interdisciplinary communication and cooperation between health economists and palliative care team seem necessary. This will lead to enhanced understanding of the challenges faced by each other and hopefully help develop ways to create meaningful, accurate, and reliable health economic data. These results can then be used as powerful advocacy tools to convince governments to allocate more funds for the cause of palliative care. Eventually, this will save overall costs and avoid unnecessary health-care spending. [ABSTRACT FROM AUTHOR]

Idiopathic pulmonary fibrosis (IPF) is a fatal progressive lung disease occurring in adults. In the last decade, the results of a number of clinical trials based on the updated disease classification have been published. The registration of pirfenidone and nintedanib, the first two pharmacological treatment options approved for IPF, marks a new chapter in the management of patients with this disease. Other nonpharmacological treatments such as lung transplantation, rehabilitation and palliation have also been shown to be beneficial for these patients. In this review, past and present management is discussed based on a comprehensive literature search. A treatment algorithm is presented based on available evidence and our overall clinical experience. In addition, unmet needs with regard to treatment are highlighted and discussed. We describe the development of various treatment options for IPF from the first consensus to recent guidelines based on evidence from large-scale, multinational, randomized clinical trials, which have led to registration of the first drugs for IPF. [ABSTRACT FROM AUTHOR]

Palliative care is a comprehensive approach aimed at improving the quality of life of patients with serious illness and their families. Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care (HPC) from a familial standpoint in the context of South and Southeast Asia. This paper aims to describe family perspectives on key elements of good home palliative care in both regions. We conducted a scoping review using Arksey and O'Malley's methodological framework. The search was done in 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Inclusion criteria were (1) exploring family experiences of palliative care, (2) home setting, and (3) South and Southeast Asian countries. Twenty-four studies were included from Bangladesh (n = 1), India (n = 6), Indonesia (n = 7), Malaysia (n = 2), Singapore (n = 2), and Thailand (n = 6). Five key elements of HPC from family perspectives were comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. The crucial role of religious and spiritual activities and the need for facilitation in facing systemic barriers were specific to South and Southeast Asia. HPC teams should be able to provide holistic support for patients and their families, which is influential for the quality of care. Improving care on a systemic level in these regions should be a policy priority. [ABSTRACT FROM AUTHOR]

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received. [ABSTRACT FROM AUTHOR]

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

Background: Almost half the world's population lives in rural areas. How best to provide palliative care to rural populations is unclear. Privileging rural patient and family voices about their experiences of receiving care delivered via rural palliative care models is necessary. Aim: To identify the key palliative care elements that rural patients with palliative care needs and their families perceive to be critical to receiving the care and support they need to live well. Design and Data Sources: A systematic review and meta-synthesis registered with Prospero (CRD42020154273). Three databases were searched in June 2024. Raw qualitative data were extracted and analysed using Thomas and Harden's three-stage thematic synthesis methodology. Findings reported according to the PRISMA statement. Results: Of the 10,834 identified papers, 11 met the inclusion criteria. Meta-synthesis of extracted, raw quotes (n = 209) revealed three major themes: (1) Honouring the patient's existing relationship with their General Practitioner (GP); (2) strategically timed access to specialist services, clinicians and equipment is critical; and (3) a need to feel safe, prepared and supported. Conclusion: The strategic inclusion of specialists alongside primary care providers is integral to optimising rural palliative care models. General Practioners are central to these models, through being embedded in their communities and as the conduit to specialist palliative care services. Rural palliative care patients and families value responsive care, trajectory signposting, effective communication, 24/7 support and recognise the value of virtual health. Globally, positive public policy and funding is critical to ensuring access to GP-led, specialist-supported, rural palliative care models. [ABSTRACT FROM AUTHOR]

Although the focus in the last decades has been on the overdiagnosis of incidentally detected thyroid carcinomas in early stages, the other extreme of the disease is represented by locally advanced tumors with the invasion of neighboring structures. These are infrequent tumors, but they have a high complexity and a poor prognosis. In the absence of effective therapies allowing preoperative tumor reduction, in order to achieve a more restricted surgery, treatment was limited to aggressive surgery with resection of the aerodigestive tract and major vascular structures or palliative treatment. However, due to the increased knowledge of tumor biology and the results that tyrosine kinase inhibitors have achieved in the treatment of radioactive iodine-refractory tumors, neoadjuvant therapy with a curative intent has emerged as a reality to be taken into account when dealing with these patients. This paper presents a narrative review of the current scientific evidence regarding neoadjuvant treatment in locally advanced thyroid cancer. [ABSTRACT FROM AUTHOR]

This paper explores recently emerging challenges in Medical Assistance in Dying on Psychiatric Grounds (MAID-PG), focusing on ethical, clinical, and societal perspectives. Two themes are explored. First, the growing number of young MAID-PG requestors and the public platform given to MAID-PG requests. Ethically, media portrayal, particularly of young patients' testimonials, requires scrutiny for oversimplification, acknowledging the potential for a Werther effect alongside the absence of a Papageno effect. This highlights the need for better communication policies for media purposes. Second, cautionary considerations regarding psychiatric care adequacy are addressed. In MAID-PG this includes reasons underlying psychiatrist reluctance to engage in MAID-PG trajectories, leading to growing waiting lists at end-of-life-care centers. Addressing current shortages in psychiatric care adequacy is crucial, necessitating less narrow focus on short-term care trajectories and recovery beside transdiagnostic treatment approaches, expanded palliative care strategies, and integrated MAID-PG care. [ABSTRACT FROM AUTHOR]

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

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Disruptive innovation (DI) refers to a mode of low cost high ancillary performance innovation that starts at the lower end of the market and gradually moves up to eventually displace its incumbent counterparts. The concept of DI has become more and more popular in the healthcare sector. The paper studies how healthcare research has embraced the concept of DI in various areas within the healthcare sector. Areas of healthcare, where DI has been adopted as a management strategy, were identified in the last two decades, through initially shortlisting 157 papers and the final reviewed set of 117 papers. Through a multi-method approach comprising of co-word analysis, identification of themes, mapping of research work across these themes and geography, the study found that, although from a management perspective there are 13 major themes, the majority of the focus is on four major themes–healthcare delivery and services, healthcare administration, technology and equipment, and nursing and palliative care. Furthermore, the majority of the geography-specific research was conducted in developed countries, especially the USA. It was also observed that organisational strategies for successfully implementing DI in the healthcare sector are still in the nascent stage and the focus is mostly in the area of healthcare delivery and administration from the management perspective. Future research studies could aim at looking at the role that DI plays in the healthcare sector of the developing countries, as well as using DI in other areas of healthcare, rather than a few concentrated areas. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to identify the gaps in research related to developmentally supportive care in the neonatal intensive care unit (NICU). The ultimate goal was to explore directions of further research on developmentally supportive care for premature patients. Methods: The Arksey and O'Malley scoping review method was used. Articles on developmentally supportive care for preterm infants in the NICU, written in English or Korean, were identified through electronic search engines. A total of 279 papers were identified in the initial search, of which 22 full-text papers were included in this review. Results: Several nursing studies have been published in the past 5 years. The important elements of developmentally supportive care were family-centered care and management of the NICU environment. The primary developmentally supportive care interventions were training programs to promote the care competency of NICU nurses. Conclusion: It is necessary to actively develop comprehensive developmental support interventions that consider the various elements of developmentally supportive care for preterm infants. Additional studies should be done to develop programs that provide direct intervention for premature infant and their families. [ABSTRACT FROM AUTHOR]

Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

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

This is a response to Barutta and Vollmann's article ‘Physician-assisted death with limited access to palliative care.’ I show how they misconstrue a key empirical statement made by the European Association for Palliative Care regarding legalisation of euthanasia and physician-assisted suicide. Additionally, I include some further remarks on the relationship between euthanasia and palliative care. I read with interest the article, which delineate well several positions and gives a nice overview of arguments presented on either side. I also found the line of argument unprejudiced and clear, and am sure people working within palliative care would benefit from reading it. [ABSTRACT FROM AUTHOR]

Background: Dignity‐conserved nursing has been widely studied by scholars all over the world; however, there is no clear direction in which this field is trending. Aim: To conduct a bibliometric analysis that systematically characterises publications on dignity research in the nursing field from 2011 to 2020. Design: Bibliometric and visual analysis of retrieved articles. Methods: The Web of Science Core Collection database was used to retrieve all articles which addressed dignity in nursing from 2011 to 2020. The WoSCC's own analysis tool, CiteSpace and VOSviewer, were used to obtain visual analysis results. Reporting follows the STROBE checklist. Results: A total of 1429 papers on dignity care are included in this study. We found that the number of papers on this topic increased steadily, and the United States topped the list with 366 articles in total. The institute with the most publications was King's College London, and the most widely published journal was Nursing Ethics. We were able to identify four major research topics, namely dignity in: (a) palliative care, (b) dementia and the elderly, (c) health care and (d) nursing ethics. Terminally ill patient, home, value, rehabilitation and psychological distress were the five keywords with the highest burst strength. Conclusions: The interest in dignity care research has been steadily increasing from 2011 and is reflected in the number of published papers. The United States and Western Europe are leading in this field, both having a high number of cutting‐edge researchers and high‐level scientific research institutions. In the domain of dignity care, several stable and high‐yield core author groups have been formed. While the existing research mainly focuses on four hot spots, psychological distress, advanced cancer, maternity care and content analysis may be the research frontiers. [ABSTRACT FROM AUTHOR]

Background: Research is important internationally, impacting on health service provision and patient benefit. Journals play an important dissemination role, but there may be geographical bias, potentially affecting access to evidence. Aim: To understand if there is a relationship between the continent of journals and that of contributing authors. Design: Bibliometric analysis of journal citation report data (June 2018). Odds ratio of association of an author being from region, region of journal publication, publication model and the number of papers. Setting: Journals specialising in palliative care research, with an impact factor above the median impact factor for their most common indexing category. Results: Five journals: three published in Europe (Palliative Medicine, BMJ Supportive and Palliative Care, and BMC Palliative Care) and two in North America (Journal of Pain and Symptom Management and Journal of Palliative Medicine). Authors were from 30+ countries, but mostly North America (54.18%) or Europe (27.94%). Preliminary sensitivity tests show that the odds of an author being from a North American institution increase 16.4 times (p < 0.01; 95% confidence interval: 12.9, 20.8) if the region of journal publication is North America. The odds of an author being from a European institution is 14.0 times (p < 0.01; 95% confidence interval: 10.9, 17.9) higher if the region of journal publication is Europe. Conclusion: Publishers, editors and authors are concentrated in North America or Europe. North American authors are more present in North American journals and European authors in European journals. This polarised approach, if replicated across readerships, may lead to research waste, duplication, and be sub-optimal for healthcare development. [ABSTRACT FROM AUTHOR]

Background: Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this. Aim: To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group. Design: The scoping review follows the method of Arksey and O'Malley. Results: Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures. Conclusion: Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care. [ABSTRACT FROM AUTHOR]

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

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

Elderly patients receiving palliative care are terminally ill, thereby requiring an increasing amount of caregivers' time and attention. Caregivers often face diverse issues and challenges while performing caregiving tasks. The purpose of this paper is to systematically investigate the challenges that trigger family caregivers' dilemmas while providing palliative care to their elderly patients. The sample size was 10 respondents (family caregivers) who were purposively selected by the researchers from hospital-based palliative care settings and home-based palliative care settings. The finding of this study presents the existing and emerging dilemmas confronted by the caregivers of the elderly receiving palliative care. The caregivers in both settings reported elderly patients' reluctance to perform daily exercises and medication. The caregivers in the hospital-based palliative care setting mentioned the patient's desire to go home, while the caregivers in the home setting needed extra assistance to manage the care needs of the elderly patients. The paper also highlights the implications for social workers functioning in palliative care settings. In conclusion, caregiving for an elderly patient is a very arduous and demanding task. Family caregivers grapple with many day-to-day challenges which creates dilemma in providing quality palliative care to their elderly patients. They try to fix their dilemmas by looking at the issue through a medical lens and discussing it with professional palliative care providers. [ABSTRACT FROM AUTHOR]

Dame Cicely Saunders' conceptualization of 'total pain', or 'total suffering', is one of her most significant and lasting contributions to the field of palliative care. It was Saunders' unique combination of knowledge and experiences as a trained social worker, nurse and physician that influenced her understanding of suffering specific to a life-limiting illness as being multi-dimensional: that suffering may be simultaneously physical, psychological, emotional, social, spiritual and/or existential in nature. 'Total pain' remains a highly relevant and significant concept within palliative care and Saunders' lasting contributions are to be revered. This paper invites us to reconsider one particular aspect of Saunders' conceptualization: that patients' 'mental reactions' to their anticipated dying/death is a key contributor to their 'total pain'. Drawing upon Saunders' works from the late 1950s to the early 2000s, this paper details the socio-historical manifestation of this aspect of 'total pain' within Saunders' writings, including influences from her Christian religion and Viktor Frankl, and its enduring impact on palliative care philosophy, practice, and discourse. Then, drawing upon patient stories rooted in my own clinical experiences over a 10 year period as a hospice social worker, I suggest that this particular feature of Saunders' 'total pain' may, unintentionally, work to pathologize both the patient for whom suffering persists and remains unsolvable, and the palliative care clinician who may struggle to relieve it -- and why it therefore stands to be revisited. It is my sincere hope and intention that ongoing reverence for Saunders' significant contributions can sit alongside respectful reconsideration. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes. Methods: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. Results: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Conclusions: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. Patient and Public Contribution: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research. [ABSTRACT FROM AUTHOR]