Palliative Care and Social Practice最新文献

{"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}

{"title":"Sex and gender in palliative and end-of-life care: A service evaluation and qualitative analysis.","authors":"Briony F Hudson, Bethan Edwards, Ellie Wagstaff, Nicola White","doi":"10.1177/26323524251344310","DOIUrl":"10.1177/26323524251344310","url":null,"abstract":"<p><strong>Background: </strong>Sex and gender are determinants of health and well-being. A person's sex is assigned at birth while gender identity is culturally determined and influences many aspects of life. Little evidence exists regarding differences in the use or experience of palliative care services between people of different sex and genders in the United Kingdom.</p><p><strong>Aims: </strong>To explore differences by sex and gender in (1) time from service referral to death, (2) reason for referral, (3) preference for place of death and (4) place of death in UK hospice and community services. In addition, palliative care staff's views of the impact of sex and gender on end-of-life experiences are explored.</p><p><strong>Design: </strong>Sequential multiple methods design including a service evaluation of routinely collected data from hospices and community nursing services across the United Kingdom (January 2019 to December 2022) and a qualitative study. Quantitative data were extracted from a central database, which collated all data from SystmOne, PatientConnect and EMIS and were summarised using descriptive statistics. Focus groups were conducted with palliative care staff from Wales and Scotland and analysed using reflexive thematic analysis.</p><p><strong>Setting: </strong>Hospice inpatient services, community nursing teams.</p><p><strong>Results: </strong>Ninety thousand six hundred and fourteen data points were analysed. High levels of missing data were noted around gender identity, alongside other demographic characteristics. A roughly even split between male (50%) and female (47%) patients was observed. Gender identity was not reported for 25% of the sample. The majority of patients were White British (82%). No differences were noted in other variables explored. In the qualitative study, differences by gender were percieved by palliative care staff in relation to patient and carer experiences.</p><p><strong>Conclusion: </strong>Quantitative data suggest limited differences in access to care or service use while qualitative data suggest differences in experiences of palliative care between sexes and genders. To enable explorations of intersectionality, sensitive data collection is needed to support future research and service delivery.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251344310"},"PeriodicalIF":2.2,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12314234/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144776393","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":"Death and dying during the COVID-19-pandemic - A qualitative evaluation of stress factors for nursing staff.","authors":"Lea Kiefer, Stefan Bösner, Jan Adriaan Graw, Christian Volberg","doi":"10.1177/26323524251355655","DOIUrl":"10.1177/26323524251355655","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic posed an unprecedented challenge for the healthcare system worldwide and led to high levels of psychosocial stress, particularly among nursing staff working in special COVID-19 wards. As previous studies have shown, this stress has had a profound impact on mental health, underscoring the need for further research to deepen our understanding of these effects.</p><p><strong>Objectives: </strong>To investigate the experiences of nursing staff working on special COVID-19 wards during the COVID-19 pandemic with regard to the death and dying of patients.</p><p><strong>Methods: </strong>To uncover aspects that might have remained unobserved in a quantitative survey, a qualitative research design was chosen for data collection. Using a semi-structured interview guide, we interviewed 14 nurses about their experiences. The data was then analysed using a qualitative content analysis according to Mayring.</p><p><strong>Results: </strong>Nursing staff were exposed to a particularly high level of stress. The reasons for this included the lack of opportunities for end-of-life care, patients dying alone, an above-average level of confrontation with death and serious disease progression and finally, limited treatment options and specialised care for deceased patients. These factors led to moral injuries.</p><p><strong>Conclusion: </strong>The results emphasise the urgency of better preparing nursing staff for future crises, providing psychosocial support and developing preventive strategies against moral distress. The promotion of resilience and the creation of conditions that prevent moral injury are essential to minimise the long-term effects of such stress and to protect the mental health of nursing staff in the long term.</p><p><strong>Trial registration: </strong>Registered in the German Register of Clinical Studies under the number DRKS00030425.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251355655"},"PeriodicalIF":2.2,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12304608/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144745375","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":"Experiences and perspectives by family caregivers on a palliative care journey: A case report from India.","authors":"Soumya Liz Jacob, Malathi G Nayak, Linu Sara George, Leah Macaden, Prathibha Lydia Braggs","doi":"10.1177/26323524251355286","DOIUrl":"10.1177/26323524251355286","url":null,"abstract":"<p><p>Palliative care plays a vital role in supporting individuals with terminal illnesses, yet its integration and acceptance in Indian society confront significant challenges. This is despite the fact that 5.4 million people in India require palliative care annually, and <2% receive the same. Understanding the palliative care journey from the caregivers' perspective is particularly important in the Indian context, as caregivers play a central role from diagnosis to end-of-life care and beyond. This study explores the impact of caregiving on family members of terminally ill patients in India, examining the physical, emotional, psychological, and social challenges they encounter. It unfolds the coping mechanisms and the resilience they develop throughout their caregiving journey while providing insight into their experiences, perceptions, and the complexities of their decision to choose palliative care. The study utilizes a focused ethnographic approach, collecting data from the caregivers of an older gentleman who was diagnosed with terminal alveolar cancer and metastasis along with multimorbidity through three unstructured interviews at different periods of the illness trajectory, coupled with participant observation and field notes. While highlighting caregivers' various stressors, the findings indicate that access to palliative care led to benefits such as alleviating physical burden, professional support, social inclusion, and preparation for loss. However, societal reluctance and stigma toward palliative care were evident, with family caregivers feeling inadequate or a sense of failing their duties by placing their loved one in a palliative care center. Destigmatizing palliative care can foster a more supportive and understanding environment for patients and caregivers. These findings offer insights into the complexities of the caregiving process and can potentially inform future broader investigations in the region.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251355286"},"PeriodicalIF":2.2,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12304659/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144745296","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":"<i>\"We need them, and they need us</i>\"-Registered nurses' experiences of leading home care workers caring for dying individuals in their last days of life: A content analysis study.","authors":"Laura Tolboom, Ulla Näppä, Lisbeth Kristiansen","doi":"10.1177/26323524251359677","DOIUrl":"10.1177/26323524251359677","url":null,"abstract":"<p><strong>Background: </strong>A mayority of individuals suffering from life-threatening diseases prefer a home death. Registered nurses (RNs) in home healthcare (HHC) play a crucial role in providing this care, as they are responsible for the caregiving process by leading home care workers (HCWs) who provide bedside care, constituting a complex collaboration. However, the research available on this topic, with a focus on nurse leadership, is rather limited.</p><p><strong>Objective: </strong>This study aimed to explore RNs' experiences of leading HCWs who were caring for dying individuals in the last days of life.</p><p><strong>Design: </strong>A qualitative, descriptive, and inductive design was utilized with the help of focus group interviews (FGIs), which involved interviewing 20 RNs employed in HHC in northern Sweden. The FGIs were then analyzed using qualitative content analysis.</p><p><strong>Results: </strong>The RNs found that a solid working relationship between themselves and HCWs is important to ensure high-quality care in the last days of a patient's life. They aimed to be available to HCWs and guide them on how to anticipate the dying process and felt responsible for supporting them, often putting their own needs last. The RNs longed for support and guidance themselves while developing their teams. They led HCWs in their development, emphasizing that care in the last days of life was specifically multifaceted, complex, and demanding. Language barriers, organizational challenges, and unclear delineations of leadership responsibilities complicated RNs' leadership in relation to HCWs.</p><p><strong>Conclusion: </strong>The RNs favored relational leadership styles, but they faced numerous challenges that varied between urban and rural areas. Moreover, the RNs led by example in dealing with existential feelings, providing care, ensuring symptom management, and fostering communication and teamwork. Through their leadership, marked by compassion and empowerment, they aimed to enhance the quality of care and nurture a supportive network essential for navigating care in patients' last days of life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251359677"},"PeriodicalIF":2.2,"publicationDate":"2025-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12301595/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144733659","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":"Corrigendum to \"Behaviours and psychological symptoms of childhood dementia: two cases of psychosocial interventions\".","authors":"","doi":"10.1177/26323524251361081","DOIUrl":"10.1177/26323524251361081","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1177/26323524241273492.].</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251361081"},"PeriodicalIF":2.2,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12290258/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144733660","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 social work contribution in end-of-life care.","authors":"Jan Fook, Kelly Melekis","doi":"10.1177/26323524251357325","DOIUrl":"https://doi.org/10.1177/26323524251357325","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251357325"},"PeriodicalIF":2.7,"publicationDate":"2025-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12267925/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660661","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 development of a core outcome set for evaluating and enhancing palliative sedation in clinical research and practice: The COSEDATION study protocol.","authors":"Lenzo Robijn, Indra Albrecht, Joni Gilissen, Peter Pype, Jeroen Hasselaar, Luc Deliens, Kenneth Chambaere","doi":"10.1177/26323524251340706","DOIUrl":"10.1177/26323524251340706","url":null,"abstract":"<p><strong>Background: </strong>The practice of palliative sedation (PS) in end-of-life care has generated significant debate due to concerns about improper application and communication issues. Previous efforts to assess and enhance the practice have often focused on single outcomes, resulting in incomplete evaluations. There is currently no consensus on the core outcomes needed to assess PS effectively.</p><p><strong>Aim: </strong>This study aims to develop a core outcome set (COS) for PS in end-of-life care to enable comprehensive evaluation and improve clinical practice.</p><p><strong>Design: </strong>The study follows the four-stage Core Outcome Measures in Effectiveness Trials (COMET) initiative approach to develop the set of core outcomes.</p><p><strong>Methods and analysis: </strong>First, we will conduct a scoping review to identify potentially relevant outcomes reported in existing peer-reviewed and gray literature. Second, we will employ qualitative methods to explore outcomes valued by patients, their proxies, and healthcare professionals. Third, experts, including researchers, healthcare providers and bereaved relatives, and patient advocates will assess the importance of these outcomes through a Delphi study. Finally, a consensus meeting with stakeholder representatives will refine the COS. Concurrently, measurement instruments for these core outcomes will be identified.</p><p><strong>Ethics: </strong>Ethical clearance was obtained by the Ghent University Hospital Ethics Committee for the whole study (ONZ-2023-0050).</p><p><strong>Discussion: </strong>This study is crucial for establishing a gold-standard measurement instrument to evaluate the multifaceted practice of PS in all its complexity. Providing a standardized set of outcomes will facilitate the design and evaluation of clinical trials, support effective quality improvement initiatives, and inform evidence-based decision-making in healthcare. Engaging all key stakeholders, including dying persons and their families, significantly improving patient care. Furthermore, internationally validated, clinically relevant endpoints will further strengthen research impact and promote consistent, high-quality PS practices worldwide.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251340706"},"PeriodicalIF":2.7,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12255856/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627357","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}