Background:The Global Organization Board of the Cancer Association Network projected global number of cancer cases to reach 35 million by 2050. In Africa, patients with newly diagnosed cancer are projected to double by 2030, underscoring the need for comprehensive strategies encompassing prevention, early detection, treatment, and palliative care (PC). However, PC service in Africa remains fragmented, often lacking holistic and continuous care delivery, with more emphasis on facility-based services.Objective:This scoping review aims to synthesize available evidences on PC approaches for cancer patients in Africa, challenges in PC delivery, and suggested measures to improve PC.Method:This scoping review employed the Joanna Briggs Institute review methodology. Extensive search of published and unpublished literature in English was conducted using databases including MEDLINE (PubMed), Embase (Ovid), Web of Science Core Collection, Scopus, Google Scholar, and Google. Records of 1242 were identified; after removing 309 duplicates, 933 citations were screened for abstract review using Rayyan software. Three reviewers assessed abstracts, and full texts resulting in inclusion of 27 studies.Findings:The findings are organized under three themes. The first theme addressed PC approaches in Africa, including home-based, community-based, facility-based, integrated, and comprehensive models. Despite the availability of multiple PC approaches, most countries in Africa primarily practice pain relief, with limited adaptation of the psychological, financial, spiritual, and end-of-life care need of the patients. The second theme identifies the challenges in comprehensive PC provision that includes restrictive opioid laws, under-funding, shortages of workforce and resources, and gaps between PC needs and available services. The third theme synthesizes suggested measures for improvements which indicate the necessity of a shift toward comprehensive, patient, and caregiver centered models with smooth referral practices. These suggestions also emphasize policy reforms to improve access to medicines and funding, and education for health workers and community volunteers.Conclusion:In Africa, PC remains largely inaccessible, fragmented, and of poor quality despite the existence of different approaches. To bridge this gap, implementation of a comprehensive care model that ensures continuity of care among home, community, and facility is crucial.Review registrations:Open Science Framework (osf.io/np9vq).

Background:Approaches to measuring continuity of care are underdeveloped for the end-of-life context, yet important for understanding the quality of end-of-life care.Objectives:Our objective was to develop a grounded theory of continuity of care at end-of-life through the distillation and synthesis of interviews with bereaved family caregivers, which focused on perceptions and experiences of continuity of care at end-of-life.Design:This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study with the aim of determining which aspects of continuity of care matter most to patients and family caregivers and, accordingly, to develop a novel continuity of care index.Methods:Family caregivers completed one 60-min audio-recorded semi-structured virtual interview. Interview questions explored perceptions and experiences through four categories of questions: Patients’ end-of-life experiences, family caregivers’ desires for end-of-life care, family caregivers’ perceptions of prior quantitative findings, and patients’ and family caregivers’ experiences of continuity of care at end-of-life.Results:Twenty-one family caregivers completed interviews; 33% were aged 19–44, 90% identified as women, 85% lived in urban settings, and 19% identified as a visible minority. Our theory focuses on patterns of continuity and discontinuity of care at end-of-life. Following Corbin and Strauss’ grounded theory method, we identified causes, contextual/intervening conditions, strategies, and consequences. Causes included health-human resource supply and system integration; conditions included tension between preferences and system capacity, and personal resources. Strategies involved aligning care with cultural or religious considerations, identifying a single point of contact, and delivering information appropriately. Consequences included patients and caregivers feeling educated and prepared, a comprehensive approach to care, and the provision of high-quality, consistent care.Conclusion:Combined with prior work, these findings will inform a continuity index for use as a system-level end-of-life care indicator.

Background:Person-centred care requires interdisciplinary collaboration. Within palliative medicine, collaboration is further necessary to meet the increasing global demand for palliative care. One area of developing collaboration involves Emergency Medical Services. However, there remains a dearth of research exploring patient and family member perspectives on Emergency Medical Services in palliative situations.Objectives:To explore perspectives of South African patients and family members with palliative needs concerning Emergency Medical Services use in their care.Design:A qualitative design using individual semi-structured interviews was employed.Methods:Patients and family members with palliative care needs who had previously experienced Emergency Medical Services care for these needs were included. Verbatim transcriptions of interviews were subjected to thematic analysis with an inductive-dominant approach.Results:Ten interviews were conducted. One overarching theme, The Dynamic of Control, and three categories were developed: (1) Loss of control: Heavy burdens of living with chronic and end-of-life illness, (2) Maintaining control: Longings and exigencies in times of suffering, (3) Transferring control: Consequential emergency medical services influence on palliative situations.Conclusion:Understanding the Dynamics of Control in palliative situations is fundamental to the Emergency Medical Services’ establishment of a person-centred approach in palliative situations. Practical developments that would allow this approach include alternative care pathways, on-scene information availability, and palliative care education. Including palliative care in Emergency Medical Services education may have benefits beyond improved palliative situation management, as it encourages a cultural shift towards person-centred care.

Background:The COVID-19 pandemic highlighted the need for innovative approaches to healthcare delivery, particularly for older adults with frailty in crowded settings. In Québec, Canada, the shortage of hospital beds during the pandemic exposed critical gaps in the capacity to provide appropriate end-of-life care for affected residents of residential care facilities (RCFs).Aim:This study aimed to examine the implementation of the COVID-19 Intensive Home Care Team (IHCT) and how it transformed the physical and social environment of RCFs to enable end-of-life care and “dying at home” in an unprecedented time.Design:A qualitative case study design was used. Between September 2020 and January 2021, qualitative data were collected through 30 in-depth interviews with front-line workers of the IHCT, healthcare managers, and academics in the home care sector. Thematic analysis reveals three interrelated themes: the ambiguities of caring spaces, the centrality of medication management, and the reconfiguration of RCFs through new spatial, technological, and relational arrangements that enabled “dying at home” during the COVID-19 pandemic.Results:Findings revealed that the IHCT initiative reshaped RCFs into a necropolitical space, showing the complex interplay between space, care practices, and societal values toward older adults with frailty. The transformation enabled a form of compassionate end-of-life care within familiar settings as well as exposed underlying societal hierarchies that determine whose lives, and deaths, are valued.Conclusion:The IHCT model illustrates how emergency health interventions can reconfigure care spaces and challenge conventional boundaries between home, private, and public care systems. However, it also underscores the ethical and political dimensions of care for frail older adults in crisis contexts.

Death literacy is an emerging concept within academic and social spheres, reflecting increasing recognition that people need to be better prepared for death and dying. The extent to which key features of death literacy are embedded in policies indicates how death and dying are framed and prioritised. Therefore, how the term 'death literacy' and its components have been adopted in UK governments' policies required exploration. This study aimed to analyse post-2015 UK state-level (Westminster) and national (England, Northern Ireland, Scotland and Wales) policies to explore how death literacy is framed and described. A document analysis of policies was conducted using the READ approach, comprising reading materials, data extraction, data analysis and distilling the findings. UK and national governments' and health services' websites were searched. A thematic policy analysis was conducted, mapping content to Noonan et al. - features of death literacy (knowledge, skills, experiential learning and social action). Key findings were outlined in a narrative format. Initially, 11,063 records were screened, 59 documents were eligible for data extraction and a final 22 papers were selected. Findings included that death literacy was not explicitly referenced, despite key features of death literacy being present. These elements focused on knowledge and skills relating to death and dying, including publics', caregivers' and professionals' understanding of end-of-life processes, predominantly relating to the skills of healthcare professionals. The policies also incorporated social action through community engagement and support. Elements of experiential learning, including coproduction of health services, were only referred to minimally. Despite no explicit reference to death literacy, key features were evident within UK policies, which focused on knowledge and skills relating to death and dying through palliative and end-of-life care processes. Future policies should explicitly outline a consolidated approach to death literacy, with the aim of improving experiences and preparedness relating to death, dying and end-of-life. These should embed strategies to implement multi-level, cross-departmental, and new public health approaches that addresses systemic inequalities, and to enhance experiential and socially focused initiatives.

Cultural silence around death and dying due to fear, anxiety, norms, taboos, and beliefs has led to social initiatives that are more 'death-positive'. This silence has had a disproportionate impact on young adults. 'Death literacy' has emerged to support greater community awareness and understanding of end-of-life care options through education and dialogue. Arts-based approaches may be particularly relevant for young adults, yet research remains limited. This knowledge translation project explored arts-based approaches for translating palliative care narrative data into creative forms, examining the feasibility of converting research narratives into accessible art forms that could facilitate engagement with death-related topics. This project employed an arts-based knowledge translation approach, co-designing a course for undergraduate artists with researchers, artists and faculty to translate palliative care narratives. The course utilized anonymized text from ethnographic research (K.S. PhD data) examining families and healthcare providers navigating paediatric transplant and palliative care, drawing from 145 journal entries by 18 healthcare providers who documented experiences of empathy, illness, suffering and death. Four undergraduate artists created diverse art forms including collages, sketches, digital drawings, storyboards and journey maps. Over 25 artistic works illustrating death and dying experiences were created. The collaborative translation process revealed that undergraduate artists could effectively interpret and visualize complex palliative care narratives through diverse artistic approaches. Course evaluations and informal feedback indicated that artists found the experience meaningful and challenging, and expressed interest in further exploration of death-related topics. The translation process produced accessible visual interpretations of complex illness narratives and, based on course feedback, appeared to facilitate openness to death-related discussions. These findings suggest arts-based translation approaches warrant further exploration as potential tools for enhancing death literacy, with future research needed to systematically evaluate their impact on young adults' comfort and competence with end-of-life topics.

Accurate survival estimation is essential for decision-making in advanced cancer care. However, clinical judgment alone often tends to overestimate survival. The performance of prognostic tools has scarcely been explored in Latin American populations. To prospectively evaluate and compare the predictive performance of four prognostic scales: the Palliative Prognostic Index, the Performance Status-Palliative Prognostic Index, the Palliative Prognostic Score, and the Delirium-Palliative Prognostic Score, against the clinical judgment of specialists in a Colombian cohort. An observational, analytical, prospective cohort study was conducted. The study included 166 patients with advanced cancer admitted to a specialized Palliative Care Unit in Colombia. Participants were followed for up to 90 days or until death. We compared the discrimination of the scales using Harrell's Concordance Index (C-index) and area under the receiver operating characteristic curve at 7, 30, and 90 days. Calibration was assessed using calibration plots. Specialist clinical judgment, the Palliative Prognostic Score, and the Delirium-Palliative Prognostic Score demonstrated excellent discriminatory capacity for short-term survival prediction, with a concordance index greater than 0.8. Clinical judgment tended to underestimate 7-day survival, while all tools showed a tendency to overestimate 90-day survival. A high short-term mortality rate was observed, with nearly 50% of patients dying within 30 days of admission. In specialized palliative care settings in Latin America, combining expert clinical judgment with the Palliative Prognostic Score or its delirium variant is recommended for prognostication. The Palliative Prognostic Index and its performance status-based variant are useful alternatives in nonspecialized settings. The high short-term mortality observed highlights a systemic issue of late referral to palliative care services in the region.

Person-centred care has become the cornerstone of quality palliative and end-of-life care. Yet, there is a dearth of both practical guidance and tools to operationalize how to ensure palliative end-of-life care is optimally person-centred. Noting this lacuna, a new hospice in Eastern Canada developed and piloted their own tool, called the SELFY (Share, Explore, Learn and Focus on You!), the intention being to standardize their institution's commitment to high-quality person-centred hospice care. This study evaluated and refined the SELFY with the goal of ensuring its evidence-based foundation and adaptability for other palliative end-of-life care contexts. We used a sequential mixed-methods design, including a rapid literature review, an international survey, and a qualitative study. The results of each method informed the design of the subsequent method. We started with a rapid literature review, the results of which were analysed with a descriptive synthesis. Following, we built an international survey, analysed with descriptive summaries. Finally, we conducted semi-structured interviews and focus groups, analysed with the SAMMSA analytic approach. Final mixed-methods analysis included a synthesis of all data, followed by the refinement of the SELFY for immediate use in the original setting, and the creation of a 'plug and play' toolkit for trialling the SELFY beyond the initial setting. The literature review and survey uncovered six tools with relevance for refining the SELFY. Qualitative findings supported the current SELFY and provided areas for refinement for the initial context. Overall, the data supported person-centred care as foundational to hospice practice, revealed that there is little guidance as to how to ensure person-centred care is practised consistently, and demonstrated how the SELFY brought pride to hospice workers by prioritizing and operationalizing hospice values in the workplace. This study enabled our team to evaluate and refine the SELFY through published evidence and hospice practice. The next steps in our program of research include tailoring and testing the SELFY in additional care settings, including free-standing hospice, palliative care, and acute care.

About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, it is unclear to what extent the course impacts students' understanding, perceptions and orientation to deliver palliative and end-of-life care. To (1) explore final-year nursing and medical students' knowledge and perceptions of palliative and end-of-life care, (2) examine students' orientation and perceived self-efficacy to provide palliative and end-of-life-care. A multicentre exploratory qualitative study. A total of 82 undergraduate nursing and medical students were selected from seven medical and nursing schools in Uganda. Data were collected through 10 face-to-face focus group discussions using a pilot-tested interview guide and analysed using inductive thematic analysis. Five master themes emerged: (1) Palliative care as a concept with multiple meanings, (2) Misinformation about palliative care, opiates and pain management, (3) Students' experiences of the course, (4) Dilemmas in knowledge and action, and (5) Palliative and end-of-life care as emotional labour. Participants generally had inadequate and varied understanding of, and very few demonstrated low willingness and limited confidence to provide, palliative and end-of-life care. They blamed this mainly on the huge emotional labour of palliative/end-of-life care and inadequate teaching and/or limited clinical exposure.

Bereavement affects individuals in diverse ways, and the support they require can vary significantly. For grief to be effectively recognised and addressed in both clinical and research settings, appropriate and validated assessment tools are essential. However, there is a notable gap in child-specific tools, particularly those that use non-verbal approaches to support young children and individuals with Special Educational Needs (SEN), who may have limited verbal communication. This scoping review aims to explore and map existing evidence on grief and mental health assessment tools that incorporate non-verbal methods. The focus is on tools used with children aged 11 and under, and with older children or adults who have additional learning or communication needs, in therapeutic and research contexts. We conducted a scoping review using Arksey and O'Malley's five-stage framework. Searches were carried out across five databases - CINAHL, Medline, PsycINFO, Cochrane Library and Scopus - from their inception to 7 December 2023. Data from eligible studies were analysed using descriptive statistics and content analysis. From 1498 screened papers, 22 articles were included. Most described mental health tools rather than grief-specific assessments. Five key themes emerged: tool development processes; language and item selection; use of visual imagery; response format design and psychometric properties, including feasibility and utility. These features illustrate how non-verbal methods can support communication and engagement in assessment. This review highlights current approaches to assessing grief and mental health in children and individuals with SEN using combinations of verbal and non-verbal methods. It provides a foundation for future development of accessible, structured grief assessment tools tailored to these populations and underscores the urgent need for such resources in practice.