Palliative Care and Social Practice最新文献

{"title":"Decision-making and peri-operative perspectives of patients with advanced cancer who have decided for and proceeded with palliative gastrointestinal surgery: A qualitative study.","authors":"Casuarine Xinyi Low, Sungwon Yoon, Darryl Juan, Claramae Chia, Johnny Chin-Ann Ong, Jane Chin Jin Seo, Mingzhe Cai, Jolene Si Min Wong","doi":"10.1177/26323524261462205","DOIUrl":"10.1177/26323524261462205","url":null,"abstract":"<p><strong>Background: </strong>Palliative gastrointestinal surgery improves symptoms and health-related quality of life among patients with advanced cancer who present with bowel obstruction. However, there remains limited understanding on decision-making surrounding palliative surgery, particularly risks and implications for patients near end-of-life.</p><p><strong>Objectives: </strong>This study aims to explore the perspectives of patients who have decided and proceeded with Palliative Gastrointestinal Surgery across the perioperative period, including considerations that shaped decision-making for palliative gastrointestinal surgery, challenges in decision-making, and subsequent post-surgery experiences in patients with advanced cancer.</p><p><strong>Methods: </strong>We conducted qualitative in-depth interviews with 25 purposively sampled patients with advanced stage IV cancer, who had underwent palliative gastrointestinal surgery for malignant bowel obstruction. Interviews were transcribed verbatim and thematically analysed.</p><p><strong>Results: </strong>There were four key considerations that shaped patients' decision for palliative gastrointestinal surgery. They included the hopes for return to normalcy and symptomatic relief, trust in surgeons and communication, religious beliefs, and familial pressures and support. Misunderstandings about treatment options and achievable outcomes after surgery, and the need to navigate fears and anxiety due to the uncertainties surrounding surgery were the main challenges encountered during decision-making. Post-surgery, while most were satisfied with their decision to undergo surgery, some faced decisional regret due to new or heightened care needs associated with ongoing cancer progression.</p><p><strong>Conclusion: </strong>Decision-making for palliative gastrointestinal surgery is complex, with patients weighing a range of considerations. Challenges include misunderstandings on options and outcomes and navigating uncertainties. These challenges highlight opportunities to improve patient care through improved communication and the provision of emotional support.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261462205"},"PeriodicalIF":2.7,"publicationDate":"2026-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13504117/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148819719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bridging the gap: Understanding the needs of community health volunteers to enhance palliative care delivery.","authors":"Mark Donald Mwesiga, Lisa Christine Irumba, Christine Siew Lan Low, Christie van Veen, Nena van de Weijer, Suzanne Gros, Dorien van de Ven, Wout Linsen, Joyce Zalwango, Dianah Basirika, Rose Kiwanuka, John Muwonge, Mwazi Batuli, Gloria Kirungi Kasozi","doi":"10.1177/26323524261473935","DOIUrl":"10.1177/26323524261473935","url":null,"abstract":"<p><strong>Background: </strong>Community Health Volunteers (CHVs) serve as lay providers who deliver essential health services and bridge the gap between underserved populations and formal healthcare systems. In Uganda, these volunteers act as the primary point of contact and a vital intermediary between rural communities and health facilities. They facilitate community-based care, manage referrals, and provide health education, offering a cost-effective strategy to mitigate human resource shortages in low-income health systems. Although CHVs constitute the backbone of primary healthcare, systemic barriers such as poor integration, high attrition, and insufficient training frequently undermine their effectiveness. These challenges particularly stifle service delivery in rural districts where formal infrastructure is limited.</p><p><strong>Objective: </strong>This study aimed to explore the specific needs of CHVs to inform targeted interventions that strengthen capacity building and improve palliative care outcomes in community settings.</p><p><strong>Design & methods: </strong>This qualitative study employed semi-structured interviews with eight CHVs from Mutungo Parish, Wakiso District, selected through purposive sampling. The interview transcripts underwent rigorous thematic analysis following Bingham and Witkowsky (2021) structured five-step analytical framework, with data management and coding procedures implemented in Microsoft Excel to maintain methodological consistency and analytical transparency.</p><p><strong>Results: </strong>Four key themes were identified through thematic analysis. First, regarding training and education, CHVs reported insufficient palliative care training and specifically requested competency-based refresher courses. Second, concerning resources, participants identified critical shortages in tangible, operational resources which includes medical supplies, transportation funds and material support in providing care. Third, in communication and coordination, there was a demonstrated need for smartphones with data plans to facilitate care coordination. Finally, on the workforce sustainability, analysis revealed excessive patient loads stemming from workforce shortages that compromised service delivery.</p><p><strong>Conclusion: </strong>The findings reveal urgent, context-specific gaps in Uganda's community-based palliative care system. Addressing these through tiered training, resource provision, and workforce expansion could significantly improve care quality.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473935"},"PeriodicalIF":2.7,"publicationDate":"2026-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13504121/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148819733","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare professionals' perceptions of ethical issues in palliative sedation: A moral case deliberation study in eight European countries.","authors":"Csilla Busa, Eva Pozsgai, Sheila Payne, Andrew Harding, Daniela Mosoiu, Michael Van der Elst, Holger Brunsch, Ian Koper, Jelle van Gurp, Alazne Belar, Yasmine Grassi, Jeroen Hasselaar, Agnes Csikos","doi":"10.1177/26323524261474091","DOIUrl":"10.1177/26323524261474091","url":null,"abstract":"<p><strong>Background: </strong>Palliative sedation is a last-resort intervention designed to alleviate refractory suffering at the end of life. Healthcare professionals frequently encounter ethically complex situations when deciding whether and how to apply palliative sedation. Moral case deliberation supports healthcare professionals in discussing ethical issues in a structured way.</p><p><strong>Objectives: </strong>To describe healthcare professionals' perceptions of ethical issues about the practice of palliative sedation.</p><p><strong>Design: </strong>This qualitative study was designed as part of the five-year Palliative Sedation project conducted in eight European countries (Belgium, Germany, Hungary, Italy, the Netherlands, Romania, Spain, and the United Kingdom).</p><p><strong>Methods: </strong>Thirty-two moral case deliberation sessions were held in 16 clinical sites with the participation of 231 healthcare professionals. During the sessions, healthcare professionals discussed relevant clinical cases where ethical questions arose regarding the practice of palliative sedation for the management of refractory symptoms. The sessions were audio-recorded and transcribed verbatim. Framework analysis was performed on the data.</p><p><strong>Results: </strong>Ethical issues related to palliative sedation were centred on patient autonomy as a fundamental principle. Healthcare professionals identified several ethical concerns about mental capacity, deferring autonomy, and competing ethical principles. Most of the ethical issues arose in the context of decision-making, and participants often experienced moral distress in these challenging situations. Healthcare professionals agreed that shared decision-making represented the optimal approach.</p><p><strong>Conclusion: </strong>Healthcare professionals have varying levels of understanding and address ethical issues differently. This study showed that palliative sedation is an ethically dense practice that requires moving beyond individualistic models of autonomy toward a more relational approach. Shared decision-making through timely and open communication enhances patient autonomy in the context of palliative sedation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474091"},"PeriodicalIF":2.7,"publicationDate":"2026-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13500962/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148814364","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Creating compassionate workplaces: A mixed-methods-based integrated framework on last aiders in the workplace.","authors":"Melanie Joshi, Julia Strupp, Helena Kukla, Golrokh Esmaili, Karin Ohler, Raymond Voltz, Georg Bollig","doi":"10.1177/26323524261477765","DOIUrl":"10.1177/26323524261477765","url":null,"abstract":"<p><strong>Background: </strong>Society often perceives work and private life as separate spheres which leads to uncertainty about issues such as serious illness, dying, death, and grief within workplace settings. Last Aid Courses (LAC) are established to reduce uncertainty and insecurity towards these issues in the public, but not designed for use in the workplace.</p><p><strong>Objectives: </strong>To develop an integrated framework specifically designed for the workplace context to foster compassionate workplaces.</p><p><strong>Methods: </strong>After performing 102 LAC in different workplace settings, a mixed-methods design was employed, comprising (a) an online survey among participants (n = 611) including closed questions and open free-text questions, and (b) five focus groups with former course participants (n = 24).</p><p><strong>Results: </strong>The vast majority of respondents (94.5%) considered both the topics addressed and the conduction of LAC in the workplace as highly relevant. This relevance was reflected in increased confidence in dealing with the subject matter (96,0%) and a high willingness to recommend the course to others (98.3%). Participants expressed the need for stronger integration of workplace-related topics, particularly concerning grief management, communication training, and labor-law-related aspects. The qualitative data revealed three interrelated levels: 1. Personal level: Dealing with those affected, consisting of shared experience, trust, and the impact of grief on employees; 2. Company level: Structural factors, including (a lack of) managerial support, attitude, and established structures; 3. Development level: Conceptual input encompassing characteristics of potential last aiders in the workplace, ideas for institutionalization, best practice, being integrated into the company structure, support for potential future last aiders, and barriers.</p><p><strong>Conclusion: </strong>Our findings confirm the high relevance of the topic within workplace settings and demonstrate that LAC enhance confidence in dealing with serious illness, dying, death, and grief. The complexity of the issue highlights that sustainable implementation requires workplace-specific approaches. Personal and structural dimensions are closely intertwined and form part of a framework aimed at strengthening workplace-based confidence in responding sensitively to serious illness, dying, death, and grief.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261477765"},"PeriodicalIF":2.7,"publicationDate":"2026-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13477543/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148759756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring death literacy with allied health professionals: A cross-sectional survey in Australia.","authors":"Erin Bonvino, Jacinta Hensby, Zoi Triandafilidis, Kerrie Noonan, Karen Hutchinson, Michelle Kelly, Christopher Oldmeadow, Jeanette Hurl, Amye Fraser, Charles Broadfoot, Lisa Mackenzie","doi":"10.1177/26323524261473624","DOIUrl":"10.1177/26323524261473624","url":null,"abstract":"<p><strong>Background: </strong>Allied health clinicians need strong death literacy to navigate loss, grief, dying, and death. Their roles include system navigation, advocacy, and psychosocial support, often bridging healthcare, community, and social services. Adequate death literacy is essential for holistic, compassionate care. This study assessed death literacy among allied health clinicians in the Central Coast region of New South Wales, Australia.</p><p><strong>Methods: </strong>An anonymous, cross-sectional online survey conducted between February and March 2025 collected demographic, professional, and 29-item Death Literacy Index-Revised (DLI-R) data. Subsequent analyses compared overall and subscale death literacy scores across Central Coast allied health disciplines and against published Australian norms for the (a) general population, (b) health professionals, and (c) end-of-life and bereavement care volunteers.</p><p><strong>Results: </strong>A total of 144 allied health clinicians completed the survey, including nutrition and dietetics, physiotherapy, podiatry, psychology, occupational therapy, speech pathology, social work, oral health, counselling, allied health assistants, and other disciplines. There were significant differences in the overall death literacy scores across allied health disciplines, with differences in mean scores ranging from 0.280 to 1.238 (p < 0.01). These differences extended to most subscales; however, after adjusting for potentially confounding characteristics, only social work remained significantly different from the \"other\" group in overall scores. Subscale differences persisted, including higher hands-on care scores in physiotherapy and occupational therapy, and higher factual and community knowledge scores in social work, compared with the \"other\" group. Overall, allied health clinicians' death literacy (mean = 5.671) was significantly higher than Australian Online Research Panel norms for the general population (mean = 4.830; p < .001); and lower than health professionals (mean = 6.510; p < .001); end of life care volunteers (mean = 6.640; p < .001); and grief and bereavement care volunteers (mean = 6.590; p < .001).</p><p><strong>Conclusion: </strong>Allied health clinicians appear to hold some discipline-specific strengths in death literacy subscales. Although overall death literacy was higher than that of the general population, it remained lower than that of health professionals, end-of-life care volunteers, and volunteers in grief and bereavement. These findings highlight gaps in allied health workers' ability to understand, access, and act on end-of-life care options.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473624"},"PeriodicalIF":2.7,"publicationDate":"2026-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13451692/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148698006","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.","authors":"Astrid Verhue, Joachim Cohen, Filip Van Droogenbroeck, Sarah Dury, Sara De Gieter, Deborah De Moortel, Steven Vanderstichelen","doi":"10.1177/26323524261475705","DOIUrl":"10.1177/26323524261475705","url":null,"abstract":"<p><strong>Background: </strong>Death literacy is viewed as a resource that enables individuals and communities to navigate the end of life. The Lancet Commission on the Value of Death has recommended its society-wide development. However, to be able to increase death literacy, insight is first needed into the factors that contribute to it.</p><p><strong>Objectives: </strong>This study aims to develop an evidence-informed conceptual model of the causal relationships between death literacy, its theorized determinants, and other contributing factors.</p><p><strong>Design: </strong>We applied a mixed-methods design, consisting of a scoping review and expert panels.</p><p><strong>Methods: </strong>We conducted a scoping review following Arksey and O'Malley's framework and the PRISMA-Scr guidelines. We searched 5 databases (PubMed, Embase, Web of Science, Scopus, and PsycInfo) for articles reporting on (facets of) death literacy and making quantitative or qualitative causal inferences. Concurrently, we conducted 3 expert panels with academic and experiential experts to identify additional determinants not identified in the literature. Deductive thematic analysis was used. Finally, we built a causal model using the Evidence Synthesis for the Construction of Directed Acyclic Graphs (ESC-DAG) methodology.</p><p><strong>Results: </strong>We identified five death literacy determinants at the individual level (lived end-of-life experience, indirect exposure, prior knowledge, end-of-life related attitudes, and social connectedness), three at the environmental level (political context & policy, organizational culture, and external resources), and three contextual variables (cultural norms and sociodemographic and personal characteristics).</p><p><strong>Conclusion: </strong>Combining quantitative and qualitative findings, we propose a conceptual causal model visualizing the different pathways to increased death literacy. The model shows the complexity behind death literacy development, highlighting the contribution of factors outside of the individual. It provides a foundation and guidance for future confirmatory research and the development of interventions to increase death literacy.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261475705"},"PeriodicalIF":2.7,"publicationDate":"2026-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13451739/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148697988","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Co-creating end-of-life choices education: A process description of a program to explore community death-literacy in preparation for voluntary assisted dying.","authors":"Michael Chapman, Kerrie Noonan, Jennifer Tieman, Nathan Emmerich, C Moore, Indra Gajanayake, Joyce Graham, Kai Ping Tan, Brett Scholz","doi":"10.1177/26323524261469209","DOIUrl":"10.1177/26323524261469209","url":null,"abstract":"<p><strong>Background: </strong>The increasing availability of voluntary assisted dying (VAD) signifies a major shift in how communities perceive and experience death. Access to VAD can be seen as a new step in the shared meaning-making through which communities respond to death and dying and a new opportunity to engage communities in developing death literacy. The Australian Capital Territory (ACT) VAD legislation took effect in late 2025.</p><p><strong>Objectives: </strong>This paper describes the initial co-creation of a multi-phase project (Getting Ready) seeking to develop end-of-life choices education in partnership with ACT communities.</p><p><strong>Design: </strong>A co-creation process involving researchers, healthcare and community organisations and community members.</p><p><strong>Methods: </strong>A participatory action research paradigm was used. This supported a local approach to co-creation developed in accordance with the principles and stages described by Vargas et al. and Roper et al.</p><p><strong>Results: </strong>Key resources and communities including priority populations with structural vulnerabilities were identified. Inter-relationships and shared values between communities were analysed and utilised to support the fostering of connections. The scope of the collaboration and key contributors to safe engagement were defined. Specific approaches to supporting community participation in Getting Ready were designed, including the development and training of community facilitators to support priority population involvement in the project.</p><p><strong>Conclusion: </strong>Co-creation is a useful mechanism to enable community engagement with the development of projects and resources focused on end-of-life choices education. These approaches support the inclusion of priority populations in death literacy research and resource development. Death literacy is a safe and useful concept to explore within community education development in an environment where VAD has been recently legislated.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261469209"},"PeriodicalIF":2.7,"publicationDate":"2026-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13451694/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148698030","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Contexts, mechanisms and outcomes of home-based palliative care implementation in low- and middle-income countries: A realist review.","authors":"Duong Dai Le, Khoa Duy Duong, Anna Peeler, Mevhibe Hocaoglu, Charles Normand, Irene Higginson, Richard Harding","doi":"10.1177/26323524261466691","DOIUrl":"10.1177/26323524261466691","url":null,"abstract":"<p><strong>Background: </strong>In 2015, an estimated 16.4 million people in low-and-middle-income countries (LMICs) died with serious health-related suffering requiring palliative care. Yet access to palliative care remains limited in LMICs, where the gaps are greatest. Home-based palliative care (HBPC) has been shown to improve access, enhance quality of life and reduce costs. However, evidence on implementing HBPC across the diverse contexts of LMICs remains scarce.</p><p><strong>Aim: </strong>To identify which strategies, in which contexts, trigger which mechanisms to produce successful implementation outcomes for HBPC in LMICs.</p><p><strong>Data sources and methods: </strong>Following RAMESES standards, we conducted a realist review to refine an initial programme theory developed through WHO documentation and the CFIR. We searched six databases (MEDLINE, PsycINFO, CINAHL, EMBASE, Global Health, and CENTRAL) for home-based palliative care in LMICs. Evidence was selected based on relevance, richness, and rigour, using 17 \"if-then\" statements to synthesise Context-Mechanism-Outcome-Configurations (CMOCs).</p><p><strong>Results: </strong>In LMICs, patients with advanced illness and caregivers experience substantial multidimensional unmet needs within health systems that are underfunded and fragmented. We identified five CMOCs in which HBPC was found to be acceptable, feasible, and sustainable. (1) Community engagement: Programmes that actively engaged community members and local civil organisations reduced stigma surrounding palliative care, strengthened collective ownership, and improved programme acceptability and sustainability. (2) Volunteer involvement: Training community-rooted caregivers created trusted bridges between services and families, enhancing volunteer commitment and long-term viability. (3) Nurse leadership: Empowering nurses through training and expanded roles increased professional confidence and trust from patients and families, supporting delivery in resource-constrained settings. (4) Multidisciplinary team: Collaborative team care alleviated feelings of abandonment, fostered hope and reciprocity; encouraged patients and families to contribute back to programmes. (5) Holistic and uninterrupted support for caregivers: Continuous and holistic support for family carers improved confidence in home caregiving and enabled end-of-life care at home.</p><p><strong>Conclusion: </strong>Shared contextual similarities across LMICs suggest these components could support HBPC implementation in diverse resource constrained settings and potential for cross-national learning. To maximise successful implementation, investment for HBPC should prioritise enhancing community capacity and developing nurse leadership within the team care model.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261466691"},"PeriodicalIF":2.7,"publicationDate":"2026-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13447999/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148689939","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Opportunities and challenges for formalizing community-based palliative care volunteer work: An ethnographic study.","authors":"Hanum Atikasari, Natashe Lemos Dekker, Annemarie Samuels","doi":"10.1177/26323524261453401","DOIUrl":"10.1177/26323524261453401","url":null,"abstract":"<p><strong>Background: </strong>The provision of community-based palliative care is widely recognized as an effective strategy for improving the end-of-life care. Given that both national and international policies increasingly advocate the integration of community-based palliative care programs into broader public health systems, those programs that are often rooted in grassroots movements and mostly run through informal volunteer networks are expected to move toward greater formalization.</p><p><strong>Objectives: </strong>This study aims to understand how individuals involved in community-based palliative care perceive the movement toward formalizing volunteer work and to identify the opportunities and potential challenges of formalizing community-based palliative care.</p><p><strong>Design: </strong>This study employed an ethnographic design grounded in qualitative research methods.</p><p><strong>Methods: </strong>Data were collected during 8 months of ethnographic fieldwork in Jakarta, the capital of Indonesia, in 2022, with a follow-up visit in 2023. The fieldwork entailed prolonged participant observation, focus group discussions, and semi-structured interviews with 14 palliative care volunteers and 6 NGO workers.</p><p><strong>Results: </strong>This study reveals that palliative care volunteers hold diverse perspectives on the definition of formalization, ranging from the introduction of visible markers (e.g., uniform and identity cards), to the establishment of institutional features (e.g., financial incentives, recognition within the health system, and administrative structures). The opportunities associated with formalization include strengthening volunteers' legitimacy and recognition in the health system and increased financial rewards. The challenges include concerns about its impact on the spiritual and altruistic nature of volunteer work, increased bureaucratic responsibilities, changes to existing care practices, and concerns about navigating the language of palliative care.</p><p><strong>Conclusion: </strong>As community-based palliative care becomes increasingly formalized, it is important to understand how this process unfolds across different regions and cultural contexts, and to identify strategies to preserve the unique strengths of volunteer-based care as these formal structures are introduced.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261453401"},"PeriodicalIF":2.7,"publicationDate":"2026-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13443243/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148686214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What factors predict severity of palliative care symptoms and concerns in COPD in South Africa? A cross-sectional study.","authors":"Kennedy Nkhoma, Lindsay Farrant, Joy Hunter, Olona Mzimkulu, Liz Gwyther, Richard Harding","doi":"10.1177/26323524261467422","DOIUrl":"10.1177/26323524261467422","url":null,"abstract":"<p><strong>Background: </strong>The majority of deaths worldwide are attributable to non-communicable diseases, with approximately four-fifths occurring in low- and middle-income countries. Chronic Obstructive Pulmonary Disease (COPD) is currently the fourth leading cause of mortality globally and is projected to become the third leading cause by 2030.</p><p><strong>Objectives: </strong>Our objectives were to: (1) determine the self-reported burden of palliative care-related symptoms and concerns (social, spiritual, psychological, physical), and (2) identify predictors of burdensome symptoms and concerns among adults with COPD attending primary care services in South Africa (including social support).</p><p><strong>Methods: </strong>A cross-sectional survey was conducted across eight primary care facilities in the Western Cape. Sociodemographic data (age, sex, smoking status, and number of missed medication doses in the preceding seven days), clinical data, peak expiratory flow (PEF), and Karnofsky Performance Status (KPS) were collected. Participants completed the African Palliative Care Association African Palliative Outcome Scale (APCA APOS), the Medical Outcomes Study Social Support Survey (MOS-SSS), the London Chest Activity of Daily Living scale (LCADL), and the COPD Assessment Test (CAT). Ordinal logistic regression was used to examine factors associated with palliative care-related symptoms and concerns.</p><p><strong>Results: </strong>A total of 387 participants were recruited (mean age 59.5 years).In terms of clinical importance APOS items with a prevalence of at least 20% that were rated at the most burdensome levels (scores of 4 or 5) included breathlessness (50.9%), need for help and advice in planning for the future (50.13%), difficulty sharing feelings (29.1%), weakness (25.32%), worry (25.26%), and pain (22.19%). Multivariable ordinal logistic regression analysis showed that greater social support (MOS-SSS) was associated with lower (better) APOS total scores (OR 0.97, 95% CI 0.96-0.98; <i>p</i><0.001). Reduced ability to perform activities of daily living (LCADL) was associated with worse palliative care outcomes (OR 1.04, 95% CI 1.02-1.07; <i>p</i><0.001). Higher (worse) CAT scores were also significantly associated with poorer palliative care outcomes (OR 1.13, 95% CI 1.09-1.17; <i>p</i><0.001).</p><p><strong>Conclusion: </strong>The impact of social support on self-report concerns demonstrates the importance of a new public health approach to palliative care for COPD patients attending primary care services in sub-Saharan Africa.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467422"},"PeriodicalIF":2.7,"publicationDate":"2026-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438347/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148680356","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}