Background Community-based palliative care is increasingly recognized as a strategy for improving equitable access in low- and middle-income countries (LMICs). Although the Kerala model is widely regarded as an established community-based programme, evidence describing its characteristics, service delivery, implementation, sustainability, and outcomes remains dispersed across diverse evidence sources. Objectives To map and synthesize the available evidence on the Kerala model of community-based palliative care, including its characteristics, service delivery, implementation strategies, implementation gaps, community participation, caregiver experiences, sustainability, and transferable lessons relevant to strengthening palliative care in LMICs. Methods A scoping review was conducted in accordance with the Joanna Briggs Institute methodology and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). PubMed, Scopus, Embase, and Google Scholar were searched for studies published between January 1999 and March 2026. Two reviewers independently screened studies and charted data, and the findings were synthesized using descriptive numerical summaries and narrative thematic synthesis to map the available evidence. Results Thirty evidence sources were included. The findings showed that the Kerala model delivers multidisciplinary home-based palliative care through collaboration among healthcare professionals, trained volunteers, family caregivers, local self-government institutions, and community organizations. Care extended beyond symptom management to include rehabilitation, psychosocial and financial support, caregiver education, essential medicines, assistive devices, and community resource mobilization. Community participation, primary healthcare integration, supportive governance, and volunteer engagement were central to programme implementation. Key implementation gaps included workforce shortages, caregiver burden, inadequate rehabilitation services, regional variation in service delivery, limited physician availability, and inequitable access to essential medicines. Conclusion The Kerala model represents a mature community-based palliative care approach in an LMIC. Its integration of multidisciplinary home-based care, community participation, primary healthcare, and supportive governance provides an adaptable framework for strengthening equitable, sustainable, and person-centred palliative care.
Background First-hand narrative accounts of experiences of end-of-life care are instrumental in guiding service provision. The Same but Different (SbD) organisation is an arts foundation with a speciality in visual storytelling. They have been working with people facing end-of-life including patients, those important to them and their healthcare professionals (HCPs). Aim To use first-hand accounts of death and dying, to gain understanding of the experiences of those at the end-of-life, their loved ones and their HCPs. Methods SbD, as part of their ‘What Matters Most’ project, combined unstructured narratives and visual methods with 18 participants who told their story in their own way and words on camera. Those stories have been transcribed verbatim. Six participants were patients coming towards the end of their lives, eight were family or friends of dying people, and four were HCPs involved in care of the dying. An in-depth, thematic analysis of the transcripts was undertaken. Findings The people in this project had never before had an opportunity like this to tell their stories. This work highlights the need for open, honest discussions about death and dying. Those nearing the end-of-life value clear communication about what to expect, preferences for place of death and symptom management. This reassured patients and carers that they were making informed decisions and HCPs were able to provide the required support. Knowing the patient had the death they wanted can ease the grieving process for others. People need to be aware early on of services and support available, and additional provision made for those in rural locations. Conclusion These narratives highlight the importance of using creative approaches to learn from first-hand accounts of end-of-life care from different perspectives. Further research is needed to give more people the opportunity to tell their stories, increase understanding and inform future policy.
Background As Taiwan becomes a super-aged society, long-term care facilities play an increasingly vital role in end-of-life care. Palliative care requires frontline staff to address residents’ clinical, psychosocial, spiritual, communication, and family-related needs. However, evidence regarding the palliative competence of nurses and nurse aides remains limited. Objectives To explore the palliative care knowledge, attitudes, and competence of nurses and nurse aides in long-term care facilities, and factors associated with competence. Design A cross-sectional study using a questionnaire survey. Methods A total of 119 nurses and 91 nurse aides were recruited from 15 long-term care facilities between April 2021 and March 2022 in Taiwan. The survey included a demographic questionnaire, the Palliative Care Quiz for Nursing (PCQN), the Frommelt Attitude Toward Care of the Dying Scale, Form B (FATCOD-B), and the Palliative Care Competence Scale. Results The mean PCQN score of all participants was 9.1 (SD = 2.8; 45.5% accuracy), indicating a moderate to low level of palliative care knowledge, with the lowest scores observed in psychosocial and spiritual care. The mean FATCOD-B score was 105.7 (SD = 14.2; 70.5%), reflecting positive attitudes toward palliative care. Self-reported palliative care competence was highest in comfort care delivery and lowest in end-of-life situations management. Nurses reported significantly higher competence than nurse aides. Knowledge, attitudes, palliative care experiences, and comfort levels when caring for a terminal patient were associated with competence, explaining 28% of the variance. Conclusion Despite generally positive attitudes toward palliative care, nurses and nurse aides demonstrated knowledge gaps, particularly in psychosocial and spiritual care, while competence was lowest in managing end-of-life situations. These findings highlight distinct educational needs across the clinical, psychosocial, and spiritual dimensions of palliative care and support role-specific education that strengthens the complementary roles of nurses and nurse aides within interdisciplinary long-term care practice.
Background Contemporary research on death literacy (DL) is based on the insight that citizens develop capacities for end-of-life care through embodied experiences of caregiving. While this highlights a process dimension at the core of DL, research has primarily relied on outcome-oriented frameworks, such as the DL index, implemented globally. Recent studies reveal limitations in understanding how individuals and communities actually develop DL from experience. Process-oriented frameworks are needed to complement established approaches. Objectives This study aims to complement outcome-oriented DL research by conceptualizing and empirically exploring it through a process-oriented framework at the intersections of philosophical practice and public health. It seeks to understand how individuals and communities “make” DL from experience. Design The study includes a literature review of early and recent DL research, identifying gaps and neglected process dimensions. A preliminary theoretical framework is developed, integrating relational agency, philosophical practice, and public health perspectives. Empirical insights are drawn from qualitative studies exploring DL as a process in philosophical practice in palliative care and caring community contexts. Methods The study uses thematic synthesis methodology to capture DL as a process. Findings from four qualitative sub-studies are revisited: (1) interviews with 29 practitioners on end-of-life topics in philosophical practice; participatory action research studies with (2) a caring community initiative in Germany, (3) a mobile palliative care team in Austria; and (4) collaborative reflective inquiry involving philosophical practitioners and researchers. Results The findings show DL as a lifelong process shaped by ongoing experiences that challenge established knowledge and integrate acquired DL into daily life. Philosophical practice fosters movement and connection across abstract and concrete, individual and collective, emotional and conceptual dimensions of end-of-life realities. It also highlights social and political aspects of caregiving, making them visible and actionable. Conclusion This study demonstrates that process-oriented approaches to DL provide insights into dimensions of end-of-life care knowledge that evade measurement by the DL index. Philosophical practice emerges as a promising avenue for DL development, supporting critical engagement with existential, social, and political aspects of end-of-life education.
Background The Death Literacy Index (DLI), originally developed in Australia, is an instrument designed to measure death literacy. Although the DLI has been culturally adapted and validated in several countries, including Sweden, the United Kingdom, China, and Turkey, published accounts of the translation and adaptation process remain limited. In Estonia, where palliative care services are still developing and public discussion of death and dying is limited, a culturally appropriate measure of death literacy is needed. Objectives This study aimed to document and examine the forward translation and reconciliation process of the DLI into Estonian. Design This study focused on the first two stages of the cross-cultural adaptation process: forward translation and reconciliation. An interdisciplinary expert group independently translated the DLI into Estonian, followed by two rounds of consensus discussions to identify and resolve semantic, idiomatic, experiential, and conceptual discrepancies and consolidate the results into a unified, future-oriented translation. Methods All consensus discussions were audio-recorded and transcribed verbatim. The transcripts were independently reviewed by two researchers and analyzed using qualitative content analysis. Recurring themes and translation-related challenges were identified, coded, and organized into categories. Results Three main categories of challenges were identified (N = 66). Most were related to linguistic challenges (n = 34, 52%), primarily within the semantic precision subcategory. In the approach to translation (n = 20, 30%), most were concerned with terminology management. Cultural appropriateness showed the fewest challenges (n = 12, 18%). Conclusion This study demonstrates that the cross-cultural adaptation of research instruments is more than linguistic translation and requires careful negotiation of pragmatic conventions, local terminology, and cultural meanings. By combining cultural aspects with linguistic precision, this study provides a transferable methodological framework for future adaptations of similar instruments.
