Palliative Care and Social Practice最新文献

{"title":"Advanced cancer patients' experience and perception of advance care planning at a university teaching hospital in Northern Tanzania.","authors":"Anna A Massawe, Manji N Isack, Heather Drury-Smith, Furaha Serventi, Blandina T Mmbaga, Oliver Henke","doi":"10.1177/26323524251372661","DOIUrl":"10.1177/26323524251372661","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning (ACP) is not formally implemented in Tanzanian healthcare. While the burden of non-communicable diseases continues to rise, most patients present at advanced stages of illness, highlighting the urgent need for ACP to support preference-based care.</p><p><strong>Objectives: </strong>This study aimed to explore advanced cancer patients' experiences and perceptions of ACP at a university teaching hospital in Northern Tanzania. Findings may inform the contextual relevance and acceptability of ACP tools in low-resource settings.</p><p><strong>Methods: </strong>This qualitative study employed individual in-depth interviews with eight patients diagnosed with advanced cancer at Kilimanjaro Christian Medical Centre. Participants received a translated version of the Five Wishes document to read and discuss with their families at home prior to the interviews. A phenomenological approach guided the data collection and analysis. Interviews were conducted in Swahili, transcribed verbatim, translated into English, and thematically analyzed using an inductive coding process by two researchers.</p><p><strong>Results: </strong>Four key themes emerged: (1) nature of acceptance, (2) challenges to uptake and utilization of ACP, (3) modality and timing of conversations, and (4) strategies for effective integration into clinical care. While initial hesitation was common, participants generally found ACP relevant and valuable for family harmony, future preparation, and quality of life.</p><p><strong>Conclusion: </strong>Despite limited awareness and sociocultural taboos around death, ACP was viewed as meaningful by patients with advanced illness. Further studies are needed to evaluate culturally appropriate adaptations and implementation strategies for ACP in the Tanzanian context.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251372661"},"PeriodicalIF":2.2,"publicationDate":"2025-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12415339/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145030873","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":"Finding solace in the ocean.","authors":"Maja Furlan de Brito","doi":"10.1177/26323524251372968","DOIUrl":"10.1177/26323524251372968","url":null,"abstract":"<p><p>This is a narrative essay about what the ocean taught me about my personal grief, lessons I, as surprisingly as it may seem, never learned through advanced training in bereavement support.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251372968"},"PeriodicalIF":2.2,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12402646/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144993750","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":"From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life care.","authors":"Joseph M Sawyer, Paul Higgs","doi":"10.1177/26323524251347653","DOIUrl":"10.1177/26323524251347653","url":null,"abstract":"<p><p>As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a 'good' or 'dignified' death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. We describe how these frameworks are predominantly orientated towards early dementia, where they work to support people to live in an active and socially productive way, and how tensions arise when they are transposed to the end-of-life where decline and dependency are the dominant experience. Our analysis suggests that the current theoretical approaches to dementia care need to be thought of as dialectical in relation to the lived experiences of decline, dependency and loss. We argue that entertaining such a dialectic can offer insights into how the approach to end-of-life care in dementia might accommodate the presence of loss, tension and paradox in such a way that does not preclude success whilst offering wider social value. We conclude that further interventions that respond to the scale of need will only add further tension without first having some vision of where value might lie. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity. This, we suggest, may offer a route to knowledge progression in the field.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251347653"},"PeriodicalIF":2.2,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12402660/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144993797","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":"The experiences on how living funerals impact the psychological well-being and sense of closure for terminally ill patients -Case report.","authors":"Shannon Sim, Jonathan Sim","doi":"10.1177/26323524251364277","DOIUrl":"10.1177/26323524251364277","url":null,"abstract":"<p><p>Terminally ill individuals often grapple with various psychological challenges as they face their mortality. While traditional funerals provide solace to the bereaved, living funerals have emerged as a distinct opportunity for both the patient and their loved ones to socially participate in the farewell. This case report highlights the impact on the psychological well-being and sense of closure for Ms. T, a Singaporean patient with terminal ovarian cancer, who hosted her own living funeral. Ms. T was receiving home hospice care. Her symptoms (including pain, discomfort, insomnia, nausea, fatigue, and shortness of breath) have limited her from social connection; something that she values and emphasized prior to illness. After discussing with Ms. T about her values and end-of-life care preferences, a living funeral was arranged, where she invited friends and family to attend at her home to connect with her and to create memories. At the session, Ms. T became more energetic and was described as 'the life of the party'. The social experience of holding a Living Funeral provided motivation and sustainability to her overall well-being. Moreover, there was an increase in her social circle contacting her to keep in touch. The living funeral is aligned with concepts related to life review. The patient, as host of the living funeral, was able to witness the impact of their life on others, reinforcing her ego integrity and psychological resilience at her final stage of life. The patient expressed a sense of 'closure and completeness', having 'reconnected with friends and family' by 'clarifying their relationships' and 'expressing love for each other'. This intervention also highlighted the impact of addressing social connections and relationships between patients and their loved ones. Further examination could highlight the benefits, challenges, and underlying constructs of the Living Funeral.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251364277"},"PeriodicalIF":2.2,"publicationDate":"2025-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12381447/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972551","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":"Enhancing nonformal caregiver capacity in rural areas through community educational interventions.","authors":"Isnaria Rizki Hayati, Rikas Saputra, Yenni Lidyawati","doi":"10.1177/26323524251369897","DOIUrl":"10.1177/26323524251369897","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251369897"},"PeriodicalIF":2.2,"publicationDate":"2025-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12378299/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972634","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":"Rethinking end-of-life preferences: beyond universal values in palliative care.","authors":"Isnaria Rizki Hayati, Rikas Saputra, Neni Noviza, Yenni Lidyawati, Rizky Andana Pohan","doi":"10.1177/26323524251368906","DOIUrl":"10.1177/26323524251368906","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251368906"},"PeriodicalIF":2.2,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12374075/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972609","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":"Life's priorities.","authors":"Edwin Pugh","doi":"10.1177/26323524251363272","DOIUrl":"10.1177/26323524251363272","url":null,"abstract":"<p><p>A perspective on priorities of medical students facing a scenario of the end of life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251363272"},"PeriodicalIF":2.2,"publicationDate":"2025-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12368308/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972574","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":"How, when and why is emotional support delivered using videoconferencing by adult palliative care services successful? A realist synthesis.","authors":"Michèle J M Wood, Amara Callistus Nwosu, David Dinham, Nicole Seneque, Catherine Walshe","doi":"10.1177/26323524251363271","DOIUrl":"10.1177/26323524251363271","url":null,"abstract":"<p><strong>Background: </strong>Videoconferencing (also known as telehealth) is part of digitally enabled healthcare provision ('eHealth') and its use in palliative care practice is increasing. There is uncertainty and limited evidence to guide organisations in how to use this technology to provide emotional support for patients, caregivers and the bereaved.</p><p><strong>Objectives: </strong>How, why, and in which circumstances can videoconferencing be used to successfully meet the emotional support needs of adults receiving palliative care?</p><p><strong>Design: </strong>Realist synthesis of literature was conducted according to RAMESES guidelines.</p><p><strong>Data sources and methods: </strong>Evidence of research studies and practice descriptions about successful emotional support interventions in palliative care by videoconferencing were identified from six databases (AMED, Medline, PsycINFO, SCOPUS, TRIP, Overton.io) and Google searching on16th January 2023. Normalisation Process Theory guided analysis and synthesis proceeded iteratively through retroductive reasoning.</p><p><strong>Results: </strong>Synthesis of 13 eligible sources (9 empirical studies and 4 practitioners' perspectives) generated 10 context-mechanism-outcome configurations and 5 hypothetical explanations for successful videoconferencing interventions. Potential causative links were made connecting social isolation, financial, educational and relational resourcing, and feelings of self-confidence, fear, or desires for belonging.</p><p><strong>Conclusion: </strong>Emotional support by videoconferencing in adult palliative care is feasible when it addresses feelings of isolation and maintains patient/carer engagement with services. It depends on stakeholders being motivated and resourced to adapt and innovate interventions appropriate for those with least familiarity or access to technology. To be successful staff need leadership and organisational cultures that enhance their professional self-worth and technical competencies, that foster inter-agency collaborations and mitigate digital exclusion of service users.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251363271"},"PeriodicalIF":2.2,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12357020/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144875617","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":"Palliative care and sustainable development in the Philippines: Learning from Kerala's community model.","authors":"Jeff Clyde G Corpuz","doi":"10.1177/26323524251363270","DOIUrl":"10.1177/26323524251363270","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251363270"},"PeriodicalIF":2.2,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12357008/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144875618","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":"The role of food as part of person-centred palliative care: An exploratory ethnographic study.","authors":"Victoria Wicks, Sarisha Philip, Montana Warbrick, Wenshan Li, Khajadour Bandk, Alexandria Hector, Danielle Caissie, Peter Lawlor, Jennifer Yeung, Krystal Kehoe MacLeod","doi":"10.1177/26323524251364281","DOIUrl":"10.1177/26323524251364281","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is about more than providing high-quality medical care; it is about maximizing quality of life while dying. The role that food plays in palliative care is not well studied or understood. Most research on food in palliative care focuses on nutrition, rather than the importance of serving food that patients recognize, enjoy, and want to consume. This study aimed to understand the role of food as an integral part of person-centred palliative care.</p><p><strong>Methods: </strong>We engaged with patients, caregivers, staff, and hospital decision-makers at the Bruyère Health Palliative Care Unit in Ottawa, Canada. We focused discussions on the role and importance of food as part of palliative care, gaps regarding food in this setting, and how their needs could be better met. To collect data, we used rapid team-based ethnography, including 10 days of fieldwork in the Palliative Care Unit, informal conversations with patients, caregivers, and staff, observations of meals, and content analysis of food-related documents. Methods also included arts-based drawing techniques, semi-structured interviews with patients (<i>n</i> = 4), caregivers (<i>n</i> = 3), and hospital administrators and food services decision-makers (<i>n</i> = 4), and self-reflexive journal entries by researchers. Data from all sources were triangulated, and Reflexive Thematic Analysis was used to inductively identify key themes.</p><p><strong>Results: </strong>The three overarching themes we found were: (1) the role of food changes for patients and caregivers as they progress through their palliative care journey, (2) there is a disconnect between the food services department and palliative care unit staff and patients, and (3) there is a need to have difficult conversations around the changing role of food with patients and caregivers and staff do not feel well-equipped to do this.</p><p><strong>Conclusion: </strong>To improve care, we first recommend addressing communication gaps by equipping palliative care providers with the skills they need to have difficult conversations about food. Secondly, we recommend that providers work closely with the food services department to ensure that they are aware of the unique needs of palliative care patients and help them identify areas where addressing unmet needs is aligned with quality improvement initiatives to accelerate change for patients and caregivers.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251364281"},"PeriodicalIF":2.2,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12357027/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144875619","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}