Palliative Care and Social Practice最新文献

{"title":"Lived experiences and decision making among patients and caregivers choosing conservative kidney management: A qualitative study.","authors":"Sing Ping Loh, Apphia Jia Qi Tan, Wan Ling Lau, Seow Yean Chiang, Lee Ying Yeoh, Swee Ping Teh, Priscilla Wen Yi Long","doi":"10.1177/26323524261444755","DOIUrl":"10.1177/26323524261444755","url":null,"abstract":"<p><strong>Background: </strong>The rising prevalence of kidney failure is a global concern. Individuals with kidney failure experience increased symptom burden, reduced quality of life, and increased healthcare utilisation. Kidney supportive care (KSC), a palliative-aligned approach that emphasises comfort, dignity, and holistic support for patients and families is offered as an alternative to dialysis treatments. Little research has explored how patients and caregivers experience and decide on conservative kidney management and KSC.</p><p><strong>Objectives: </strong>To explore the lived experiences of patients with kidney failure and their caregivers in treatment decision-making for conservative kidney management.</p><p><strong>Design: </strong>A qualitative inquiry using an interpretative phenomenological approach was conducted.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with patient-caregiver dyads to understand patient and caregiver lived experiences in choosing conservative kidney management. Patients who were aged 21 or older with Chronic Kidney Disease Stage G5 (eGFR ⩽15 ml/min) and had chosen KSC, were recruited along with their caregivers. Semi-structured, in-person interviews were conducted with nine patients and eight caregivers. Interviews were transcribed verbatim. Two researchers performed independent coding and identified meanings and themes which alluded to the lived experiences of individuals under KSC and their caregivers.</p><p><strong>Results: </strong>Four themes captured the lived experience and decision-making journey: (1) lived reality of kidney failure, (2) navigating treatment decision making, (3) the role of family and healthcare providers, and (4) facing the future and perceived needs in supportive care. Decisions were influenced by personal values, comorbidities, age, clinician recommendations, fear of suffering, and witnessing others on dialysis. Most decisions involved collaborative discussions between patients, families, and clinicians. Participants expressed the need for enhanced continuity of KSC and community-based early palliative care access.</p><p><strong>Conclusion: </strong>Decisions to pursue conservative kidney management are multidimensional, shaped by patients' values, social contexts, and healthcare interactions. Understanding these factors ensures informed choices and better support during the decision-making and care transition process to KSC. Findings highlight need to improve patient-provider communication and community support within an early palliative care-integrated approach.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261444755"},"PeriodicalIF":2.7,"publicationDate":"2026-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13237465/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148200318","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":"Patient- and caregiver-reported outcome and experience measures for evaluating serious illness communication: An environmental scan.","authors":"Hsien Seow, Anish K Arora, Zhimeng Jia, Karen Zhang, Giulianna Melchionna, Oren Levine, Jessica Simon, Justin J Sanders, Jeff Myers","doi":"10.1177/26323524261456335","DOIUrl":"10.1177/26323524261456335","url":null,"abstract":"<p><strong>Background: </strong>Serious illness communication (SIC) is central to person-centred care and is associated with improved patient and caregiver experiences, reduced suffering, and more goal-concordant care. Despite substantial investment in SIC training programs, there is limited evidence that these interventions improve real-world outcomes. A key barrier is the absence of a consolidated set of measures that assess effects of SIC, such as proximal, intermediate, and downstream health outcomes among patients and caregivers.</p><p><strong>Objectives: </strong>To identify existing patient- and caregiver-reported measures relevant to SIC and map these to a communication outcomes framework to support evaluation of SIC interventions.</p><p><strong>Design: </strong>An environmental scan was conducted over a 3-year period (July 2022-June 2025), supported by a national expert panel.</p><p><strong>Methods: </strong>Multiple search strategies were used, including searching peer-reviewed literature, grey literature, conference proceedings, as well as citation tracking and expert elicitation. Identified measures were assessed for relevance to Kirkpatrick Level 4 'real-world' (i.e., patient/caregiver) outcomes and mapped to the Street et al. framework. Key characteristics were extracted and summarized descriptively.</p><p><strong>Results: </strong>47 measures were identified. Of these, 8 mapped to communication functions, 18 to proximal outcomes, 6 to intermediate outcomes, and 15 to health outcomes. Most measures (66%) were designed for patients, with fewer for caregivers (21%) or both groups (13%). The majority (85%) were published after 2000. Among those that reported internal consistency (36/47), most (88%) were acceptable (α ≥ 0.80). Measures mapped to communication functions primarily assessed overall patient/caregiver experiences. Measures mapped to proximal, intermediate, and health outcomes increasingly captured consequences of communication, evolving internal states, and downstream psychological or quality-of-life outcomes.</p><p><strong>Conclusion: </strong>The measurement landscape for SIC is broad but fragmented, with few measures developed specifically for the SIC context and caregivers. Mapping existing measures provides a foundation for developing a coherent, SIC-specific core set of patient- and caregiver-reported outcomes.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261456335"},"PeriodicalIF":2.7,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13230674/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148164858","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":"Narrative review comparing palliative care models in primary and community care settings: For a better integration of nurses' activities and skills.","authors":"Lucille Saillard, Julien Carretier, Nora Moumjid","doi":"10.1177/26323524261447387","DOIUrl":"10.1177/26323524261447387","url":null,"abstract":"<p><p>The World Health Organization highlights significant disparities in access to palliative care (PC), especially in primary and community care. In France, ASALEE is an innovative national association that brings nurses and general practitioners in primary and community care. Initially created to address the support needs of patients living with chronic diseases, the nurses' roles have expanded to include PC. However, despite the growing role of such interprofessional models, research on PC nurses' activities and skills in primary and community care are underdeveloped. To identify, categorize, compare PC models in primary and community care and analyze them through nursing skills and activities, using the ASALEE PC link-nurses' specific role as a comparator. A narrative literature review on studies published between 2017 and 2024 was performed. PC models were categorized using the Understanding Integrated Care Conceptual Framework. Extracted data on nursing activities and skills in PC were compared with those developed by <i>ASALEE's PC Support Group</i>. This group is working on the integration of PC for patients in primary and community care. Twenty-one studies were selected. Searching on micro, meso, and macro levels, the review identified six key models of PC in primary and community care: integrative PC, health promotion-, community-, professional skills-, patient-centered, and end-of-life process-focused. These models emphasize inter-professional collaboration, informal caregivers' involvement, community engagement, and patient partnership in PC support. The review provides insights into PC nurses' activities and skills in primary and community care, particularly in terms of interpersonal relationships. The review is limited by heterogeneous study designs and contexts, which constrain generalizability, but, while partially transferable to the French healthcare system, these models require adaptations to be fully integrated. This review proposes perspectives for PC integration, future research, and to enhance ASALEE PC link-nurses' practice and strengthen their collaboration with physicians, informal caregivers, and patients, in France and at the international level. This review identifies PC models, core nursing skills and activities, and collaborative practices that can guide future PC nurses in primary and community care, by proposing changes for their implementation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261447387"},"PeriodicalIF":2.7,"publicationDate":"2026-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13195240/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148017838","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":"Evaluating an educational supportive care program on functional status and quality of life among women with breast cancer post-mastectomy in Egypt.","authors":"Ftama Kamal Ali, Imad Aljarrah, Rabia Hani Haddad, Soheir Mahmoud Abd El-Hamid, Ashraf Jehad Abuejheisheh","doi":"10.1177/26323524261449266","DOIUrl":"10.1177/26323524261449266","url":null,"abstract":"<p><strong>Background: </strong>Women who have undergone mastectomy often report fatigue, shoulder dysfunction, and a diminished quality of life. Structured educational and supportive care programs have the potential to facilitate improved functional recovery and overall well-being post-surgery.</p><p><strong>Aim: </strong>This research aimed to evaluate the effect of the educational supportive care program on fatigue, shoulder functional ability, and quality of life among women after mastectomy.</p><p><strong>Design and methods: </strong>A quasi-experimental research design was conducted at Tanta Cancer Center, Gharbia Governorate, Egypt (affiliated with the Ministry of Health and Population). A purposive sample of 84 women undergoing mastectomy was included in the study (intervention group included 42 women, and control group included 42 women). Four tools were utilized (A demographic and cancer-related data sheet, cancer-related fatigue assessment (EORTC QLQ-FA12), shoulder pain and disability index (SPADI), and Functional Assessment of Cancer Therapy-general (FACT-G)). Means, standard deviations, frequencies, percentages, independent <i>t</i> test, and Chi-square test were used for statistical analysis.</p><p><strong>Results: </strong>The results of the present study showed that, during the first week post-mastectomy, no statistically significant difference was observed between the two groups toward fatigue level, shoulder pain and disability, and all quality-of-life domains. On the other hand, a highly statistically significant improvement was observed among the study group at 6 weeks and 3 months post the intervention, in which the study group showed significantly lower levels of fatigue, reduction in shoulder pain and shoulder-related disability, and quality-of-life scores increased in all domains. Additionally, there was a significant negative correlation between total quality-of-life scores and total fatigue, shoulder pain, and shoulder disability in both the study and control groups at all measurement times.</p><p><strong>Conclusion: </strong>The findings indicate that the educational supportive care program was associated with improvements in fatigue, shoulder functional ability, and quality of life among women after mastectomy. However, the quasi-experimental study may limit causal interference and the generalizability of the findings.</p><p><strong>Recommendation: </strong>In order to enhance women's functional status and their quality-of-life post-mastectomy, educational supportive care should be integrated into routine care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261449266"},"PeriodicalIF":2.7,"publicationDate":"2026-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13195223/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148017829","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":"Assessing the palliative care needs of children with cancer and their families in tertiary care centres in India: A multicentre observational study.","authors":"Vani Verma, Krithika S Rao, Arunangshu Ghoshal, Vasudeva Bhat K, Harshitha D, Aishwarya Sanian, Aastha Mishra, Aditi Sakpal, Medha Bagalkote, Beda Sravani, Archana Iyengar, Sangeeta Mudaliar, Gayatri Palat, Veronique Dinand, Naveen Salins","doi":"10.1177/26323524261430380","DOIUrl":"10.1177/26323524261430380","url":null,"abstract":"<p><strong>Background: </strong>Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries such as India, the need is largely unknown, and access remains limited, necessitating the conduct of this study.</p><p><strong>Methods: </strong>A multicentre, prospective, cross-sectional study was conducted across three tertiary cancer centres in India to assess the palliative care needs of 150 children with cancer and their families using the Paediatric Palliative Screening Scale (PaPaS). The PaPaS tool evaluated five domains, and the total scores were used to stratify the need for PPC. The three participating centres differed in patient flow and the extent of palliative care integration, representing academic and public healthcare settings.</p><p><strong>Results: </strong>Based on PaPaS scores, 49.3% of children with cancer had moderate (secondary) palliative care needs, 36.7% required introduction to palliative care, 11.3% had minimal needs that paediatric oncologists could manage, and 2.7% required palliative care as the focus of treatment. Psychological distress was significantly higher among family caregivers (57%) than in patients themselves (33%). While 91% of families were open to palliative care discussions, clinicians perceived that only 4.7% (7/150) of children would likely benefit from referral to palliative care services. Domain-specific analysis revealed significant correlations between treatment burden, family distress, and overall palliative care needs.</p><p><strong>Conclusion: </strong>There is a significant unmet need for integrated PPC among children with cancer in India, exacerbated by a very small number of them accessing care due to non-referral by oncologists or the unavailability of PPC.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261430380"},"PeriodicalIF":2.7,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13187397/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147989350","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>Prontuário Compassivo</i>: Development and initial assessment of a palliative care digital platform in socially vulnerable contexts.","authors":"Janaína Santos Nascimento, Liana Amorim Corrêa Trotte, Livia Costa de Oliveira, Maria Gefé da Rosa Mesquita, Virgílio Garcia Moreira, Alexandre Ernesto Silva, Bruna Cezar Diniz, Glaziela Arruda Coelho, Ana Paula Correa Ferreira, Thiago Crispino, Márcia de Sousa Murta, Fernanda Carvalho de Queiroz Mello","doi":"10.1177/26323524261445577","DOIUrl":"10.1177/26323524261445577","url":null,"abstract":"<p><strong>Introduction: </strong>Structured clinical records are essential for ensuring the quality and continuity of palliative care, particularly in socially vulnerable contexts. Existing digital systems rarely capture psychosocial or subjective data, limiting interdisciplinary collaboration and person-centered care planning.</p><p><strong>Objective: </strong>To describe the development and preliminary usability assessment of <i>Prontuário Compassivo</i>, a Brazilian digital platform designed to support clinical documentation and coordination of community-based palliative care.</p><p><strong>Method: </strong>This methodological study was conducted between 2022 and 2025, adopting an agile development approach grounded in the Scrum framework and guided by user-centered design principles. The platform was implemented as a responsive web system with secure authentication mechanisms, interoperability through REST (Representational State Transfer) application programming interfaces, and modules integrating standardized palliative care assessment tools. Usability assessment was conducted prospectively between February 2024 and January 2025 within the <i>Favela Compassiva</i> project in Rio de Janeiro. Data collection included direct observation of home visits, field diaries, and interdisciplinary meetings documenting professionals' interactions with the platform. Usability aspects explored included learnability, ease of use, navigation clarity, and integration into routine clinical workflows.</p><p><strong>Results: </strong>By January 2025, the system had generated 520 clinical records used by 71 interdisciplinary health professionals involved in community-based palliative care. Three analytical categories emerged: (1) routine use, (2) challenges related to features and user diversity, and (3) contextual adjustments. These findings indicate that the platform became embedded in routine home-based care activities, although its use varied depending on users' familiarity with digital tools. Iterative refinements included simplified and extended versions, reorganized navigation flows, and automated referral features.</p><p><strong>Conclusion: </strong><i>Prontuário Compassivo</i> demonstrated technical feasibility, contextual usability, and adaptability in resource-limited environments. Its integration of interprofessional documentation, artificial intelligence resources, and interoperability positions it as a promising digital health solution for improving documentation, communication, and continuity of palliative care in socially vulnerable settings. Future studies should conduct standardized usability testing and evaluate the platform's impact on clinical outcomes.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261445577"},"PeriodicalIF":2.7,"publicationDate":"2026-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13180167/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976129","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'm tired of justifying why my life has stopped': A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement.","authors":"Emily Harrop, Zoe Abbott, Noreen Hopewell-Kelly, Silvia Goss, Charlie Byrne, Jane Bayliss, Kerry Jones, Oliver Clabburn, Rachel Warren, Alison Penny, Helen Leadbitter","doi":"10.1177/26323524261442209","DOIUrl":"10.1177/26323524261442209","url":null,"abstract":"<p><strong>Background: </strong>Family carers play an essential role in caring for terminally ill relatives, but evidence regarding the experiences of young/young adult carers is limited.</p><p><strong>Objectives: </strong>To explore the experiences and support needs of young/young adult carers when caring at the end of life and into bereavement, and identify ways of improving support. In the 'Discussion', we apply the Dual Process Model of coping with bereavement (DPM) to help conceptualise our findings.</p><p><strong>Design: </strong>A mixed-methods study comprising; an online survey of statutory, voluntary and community sector professionals/volunteers working with current or bereaved young/young adult carers (<i>n</i> = 106); two focus groups with professional survey participants (<i>n</i> = 8); three focus groups with bereaved young/young adult carers (<i>n</i> = 9). Here, we describe our qualitative themes following reflexive thematic analysis of free-text survey and focus group data.</p><p><strong>Results: </strong>Our three main themes centre around; providing care at the end of life; navigating bereavement; and managing daily life and relationships. When caring, young/young adult carers struggle with a lack of emotional and practical preparedness for death, caregiver burden and changing roles and relationships within the family. Post-bereavement, they experience complex emotions relating to the death and the loss of their caring role/identity, alongside difficulties dealing with administrative/practical tasks and changes to living situations and family roles. Pre/post-bereavement young carers experience difficulties opening up and seeking help and lack of understanding or support from family, peers and schools/colleges, whilst also struggling with school attendance and performance. Transitioning between education and work/unemployment creates support gaps and needs unique to young adult carers, alongside a general lack of preparation for adult life.</p><p><strong>Conclusion: </strong>Young/young adult carers experience multiple challenges and support needs, which can be usefully theorised using an adapted version of the DPM. Cross-sector changes, reflecting public health approaches, are needed to improve the informal and formal support available to young people when caring and bereaved.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261442209"},"PeriodicalIF":2.7,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13172680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147964871","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":"Not wanting to be a burden: wishing euthanasia to protect loved ones from the dementia.","authors":"Trijntje M Scheeres-Feitsma, Jenny T van der Steen, Petruschka Schaafsma","doi":"10.1177/26323524261448239","DOIUrl":"10.1177/26323524261448239","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261448239"},"PeriodicalIF":2.7,"publicationDate":"2026-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13167285/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147943091","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":"Increasing number of unmanaged distressing symptoms in people living with dementia associated with family carer burden and distress following an unplanned hospital admission: A longitudinal cohort study.","authors":"Sophie Crawley, Victoria Vickerstaff, Clare Ellis-Smith, Charlotte Kenten, Emel Yorganci, Catherine J Evans, Elizabeth L Sampson, Nuriye Kupeli","doi":"10.1177/26323524261440961","DOIUrl":"10.1177/26323524261440961","url":null,"abstract":"<p><strong>Background: </strong>People living with dementia (PLWD) often have high symptom burden, exacerbated by comorbidities and experience unplanned hospital admissions that increase towards the end of life. Unmanaged symptoms and unplanned hospital admissions are distressing for the person living with dementia and family carers and expensive for the healthcare system.</p><p><strong>Objective: </strong>To explore the relationship between unmanaged symptoms of PLWD following an unplanned hospital admission and carer health and wellbeing outcomes over time.</p><p><strong>Design: </strong>Prospective longitudinal cohort study.</p><p><strong>Methods: </strong>Physical, psychosocial and spiritual symptoms of the PLWD and carer burden, distress and pre-death grief were assessed over 12 months following an unplanned hospital admission. Descriptive statistics and multilevel linear regression analyses were used to examine the relationships between PLWD unmanaged symptoms and carer outcomes.</p><p><strong>Results: </strong>A total of 51 carers of PLWD with a mean age of 59.6 participated. Carer burden was significantly associated with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [0.03, 0.12], <i>p</i> = 0.002) and agitation (coefficient = 0.08, 95%CI [0.02, 0.14], <i>p</i> = 0.009). Carer psychological distress showed a positive trend in its association with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [-0.00, 0.13], <i>p</i> = 0.059) and agitation (coefficient = 0.06, 95% CI [-0.01, 0.14], <i>p</i> = 0.090), but both analyses did not reach statistical significance. Carer pre-death grief was not associated with PLWD symptoms or agitation.</p><p><strong>Conclusion: </strong>Identifying and addressing symptoms in PLWD following an unplanned hospital admission is essential in enhancing the wellbeing of PLWD and carers. Hospital discharge planning should incorporate carer perspectives, provide support for carer burden and distress, and ensure continuity of care to reduce symptoms and improve outcomes for both PLWD and their carers.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261440961"},"PeriodicalIF":2.7,"publicationDate":"2026-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13167373/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147942872","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":"Towards quality indicators in palliative care education: An umbrella review.","authors":"Anna J Pedrosa, Ulla Näppä, Minna Hökkä, Jose Pereira, Piret Paal, Jan Kaňák, Gabija Jarašiūnaitė-Fedosejeva, Michael Connolly, John Ellershaw, Sabina Antoniu, Gulcan Bagcivan, Laura Ciria-Suarez, Stephen Mason, Tania Pastrana","doi":"10.1177/26323524261440959","DOIUrl":"10.1177/26323524261440959","url":null,"abstract":"<p><strong>Background: </strong>The global need for palliative care is increasing. To respond effectively, all healthcare professionals who care for persons with serious illnesses should be trained to provide core palliative care. Despite increasing recognition of its importance, education remains inconsistently implemented.</p><p><strong>Objectives: </strong>To explore and identify the essential elements that define and support palliative care education, and to propose a preliminary typology of structural, process, and outcome quality indicators.</p><p><strong>Design: </strong>An umbrella review was conducted according to the Joanna Briggs Institute methodology.</p><p><strong>Data sources and methods: </strong>We systematically searched three electronic databases (CINAHL, MEDLINE, PsycInfo) for literature reviews on palliative care education. Data were analysed using a combined deductive-inductive qualitative approach.</p><p><strong>Results: </strong>Twenty-four reviews were included in the analysis. Seven structural indicators were identified relating to the training and duration of palliative care exposure, instructional format/delivery, contents, structured course development, involvement of local staff and experts, multidisciplinary and context-specific learning, and organisational support. Seven process indicators were identified, encompassing experiential learning, multi-modal approaches, reflective practice and emotional processing, group-based peer learning, embedded learning, flexibility, and feedback. Six outcome indicators were identified, including the enhancement of competencies, sustainability and long-term impact, validated tools for evaluation, participant satisfaction, integration into routine practices, and impact on patients and families.</p><p><strong>Conclusion: </strong>This umbrella review proposes an evidence-informed framework of potential quality indicators for palliative care education, offering guidance for curriculum design and policy development while identifying key areas requiring empirical refinement and validation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261440959"},"PeriodicalIF":2.7,"publicationDate":"2026-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13167286/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147943131","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}